Design a site like this with
Get started

Lewy Body Dementia UK Celebrates Four Years Existence

Lewy Body Dementia UK

Lewy Body Dementia UK has just celebrated its fourth year up on the web since its creation in 2018.

We sincerely thank all our followers and our readers, visitors and supporters.

If we have helped just one person since our launch back in 2018 then we humbly classify ourselves as worthy to exist.

We do sincerely hope we have helped many more people than just one person along the way, if only with a link to a website much better than our humble blog, or a piece of information that you may of needed to know.

The most important thing to us is the realisation that you are not alone.

We thank you most humbly, sincerely and without reserve.

Lewy Body Dementia UK

Lewy Body Dementia: The Shocking Truth LBD & Alzheimer’s

Lewy Body Dementia

Personal Testimony Lewy Body Dementia Jean Rough

Knowing that I have both Alzheimer’s and Lewy Body disease, I found myself interested in what I could learn.

In my search, I discovered Dave Itzkoff who wrote a book about Robin Williams.

Robin Williams, the actor, had Lewy body dementia (LBD) but it was not discovered until an autopsy after his death. Itzkoff learned about Robin’s symptoms mostly from Robin’s wife Susan.

I learned from Dave. Itzkoff’s book was a BIG breakthrough for me.

As I read about how much Robin suffered, I felt my own suffering. I no longer was alone.

For instance, he and I had the frustration of not knowing if a LBD symptom is leaving, arriving, or returning.

No way to prepare. And no way for caregivers to prepare.

Robin’s wife and others tried everything to stop a symptom but nothing would work. His body had its own time. And so does mine. 

Here is the “endless parade of symptoms” that Robin went through, mostly in his last year of life. It shocked me that his symptoms were so similar to my own symptoms. 

** anesthesia 

** severe loss of weight 

** loss of sense of smell 

** heartburn 

** tremor in left hand 

** less voice 

** stomach cramps 

** constipation 

** trouble seeing 

** cogwheel rigidity (limb stops itself) 

** stooped posture  

** “freeze” current motion 

** anxiety (off the chart) 

** thinner and frail 

** moments of quiet; moments of crying 

** motor impairments

** difficulty remembering 

** indigestion

**Hallucinations are not mentioned in Robin’s list, but they have been important for me

For each symptom there is a story. I have been keeping a journal for my stories. For example, four years ago I was changing my niece’s diaper. In cleaning it up, I noticed that I was not smelling it.

That night at dinner with my husband and my 90 year old father I asked them to smell with eyes closed. They could smell. I could not. At the moment Lewy body Dementia was not a part of my life. But last year I realized that it was most likely due to Lewy. And I still can’t smell. 

Another all time experience is that my weight was around 124 lbs in 2014 and now is about 97. No matter what and when I eat, my body is not responding. Of course there are many Lewy symptoms that appear and then disappear.

This was true with my rheumatoid arthritis. It lasted for a couple of years and then disappeared. Please note that RA does not usually disappear! 

How did this begin for me?

Four years ago, at least, I began noticing that I was being different, such as trouble with words. I took one of those tests and did fairly well making a clock, knowing where I lived, and remembering the three animals proposed to me when I arrived. A doctor did an X-ray and said it was fine with slight mild cognitive impairment (MCI). 

Two years later those small mistakes and thoughts on the tests had shifted. My husband Jim and I decided to attend an event in Seattle focused on Alzheimer’s with Dr. Tom Grabowski who is Director of UW Medicine Memory and Brain Wellness Center.

After attending one of his private sessions and taking a MRI, we were ready to hear the news. Later Dr. Grabowski suggested that I bring someone who could be a caregiver. I decided to bring Jim my husband and our son Dan and his wife Bonnie. 

As we were preparing to leave our home in Port Townsend for our session, I remembered that I had that X-ray from the years before. But where would it be in our home after all of these years! I gave it one possibility, in my husband’s closet pushed way back. I went into the closet and there it was! We took the X-ray with us to Seattle. It was a good choice because it gave Tom enough to measure and see a few differences.

At the Memory and Brain Wellness Center, Dr. Grabowski asked lots of questions. He also shared what he saw on the MRI. It was hard for me to see what clearly was OK and what was not. It was very important to include our caregivers. They asked good questions and now I have better knowledge of what I can expect.

Another Memory and Brain Wellness Center event was held a month ago with the focus on Lewy body dementia. I was impressed how well the organizers allowed time to share and to hear other stories as well as professionals that shared. And two of my caregivers attended by taking off of work (and picking me up at the ferry!). They had the chance to learn more about Lewy. We hope that the Center will offer more events. 

What It’s Like to have LBD

A friend asked me what is it like to “have” LBD. The image that comes to my mind is a ferris wheel except you don’t know when it will start or stop. What helps me is to be conscious about how I feel each day. If it is something a bit unusual, then see if it is in the LBD list or maybe something new for the list appears. And give yourself a moment to relax or take a walk knowing that this event will pass. In the meantime, check to see if you need to inform your caregivers in preparation for the ups and downs. 

I’m Cleaning! 

Recently I cleaned our dishwasher. Then I brought my cleaning stuff to the bathroom. I noticed that there was lots of dust on the floor behind the toilet. Obviously it had not been cleaned for a while. I got down on my knees and cleaned. Then I noticed the wall had some spots, and another wall to clean. I cleaned them.

I was in the midst of the next wall when I suddenly realized something. I stopped and screamed with a huge smile: “I’m cleaning! I’m cleaning!” Something was released that had been locked up along with LBD. The “locked up” had been keeping me safe. I could only face so much at the time of my life. But the “doing the cleaning” released me. That is how great I feel!

Driving my car

Something else I notice. If I share with someone about a problem, such as forgetting where they put things or getting lost when driving their car, their response often is: “I know what you mean. That happens to me all the time.” Yes, that is true as how she/he experienced it. However, there is this different kind of loss. My car loss situation shortens my thinking. For instance I might not think to call “Siri.” My friend with getting lost with a car has the choice to think and perhaps check with Siri. 

Recently I was driving my car and pulled out from our hospital to a larger street. My destination was to turn left to a grocery store. It looked clear. When I looked to the right two cars were coming. Knowing the left was clear I moved out but the left was not clear. I had to make a quick choice. In the moment, turning a bit fast to the left seemed the best choice.

I gave the car a quick move and made it. But it only worked because the car to the right slowed down. As I drove away I hoped the driver would follow me so I could apologize. He did pull in right next to me. I walked over and apologized. He happened to be someone I knew and was mayor of our town for years. We talked about the almost crash. We knew that all of us were over 72.  I shared that I had Alzheimer’s and Lewy. And that Dr. Grabowski had mentioned that I should consider not driving. Now I know why. 

Two weeks later I was driving to pick up my great niece and take her to a friend’s house. An easy task. However I made a wrong turn and had no Idea where to drive. It was like being in a swirl from street to street, with little thinking. Finally I found a way to get out of the swirl and finish my task with the car.

That night Jim and I talked about our choices. It hit us hard. How could we manage without my driving? It would be far more difficult for both of us. But as we talked we remembered Tom’s words. And we remembered two other events in Seattle that would follow in as Lewy. And we talked about our grandchildren. This is our first week with Jim driving me to someplace. I am riding my bike more often. 


I saw Jim walk by with morning light under the doorway while I was lying on my bed. I called out to have him join me. But he doesn’t hear me. As I am watching the door, I now see these crazy looking creatures, very small, parade under the door going in a perfect line, the opposite than what Jim was doing. I smile and speak to the creatures. Soon I realize that I have been in a visual hallucination, once again.

Finding Help 

We have someone who helps with cleaning, gardens, and paying bills. But there is no one who helps with our daily living. As simple as keeping our calendar up to date. It can no longer be me. Small tears come. We begin to consider our options, such as having someone who stays during the day. Or how later could sleep where.

There is some laughter as to how we could sleep. But mostly we are caught into a maze that has no way out. As if we have hit ground. The reality is that we have a long way to go. Maybe it is closer than we think. The thought is scary, sometimes more so for Jim than me.

Dementia: The Long Sad Story Everybody Should Read


The beautiful, horrible death of Bill White.

by Roy White 

Two days ago my Dad died and I began writing this.

I was there, holding his hand when he passed out of this world into the unknown promised brilliance and joy of heaven and it was truly the most amazing, difficult, heart wrenchingly moving, yet ultimately healing experience of my life.

Dad spent the last four and a half years battling a disease. Lewy Bodies disease. A malicious form of dementia that attacks the frontal temporal lobes of the brain destroying brain tissue, mainly short term memory, and destroying brain cells until everything (and I mean EVERYTHING) in the body slows and shuts down little by little. At last all that is left is breathing, awareness, hearing and finally death. Autopsies done on Lewy Bodies victims reveal a brain with the frontal lobes literally gone, shriveled up and shrunken like raisins. The deeper portions of the brain that control autonomic functions of the body like digestion and heart rate and kidney function and so on remain relatively untouched.

Long term memory and present emotional experience remains intact so a victim stays aware of what is going on, emotionally responds yet is helpless to do anything about it.

Seems like a truly demonic and unspeakable way to die.

Dad is (and I say ‘is’ in the light of his sure and certain resurrection and new boundless joy in the new heaven and new earth) a man of intense commitment and holds a personal record of never once giving up on anything he ever decided to do.

He never let you forget he was from Texas and as a Texan he inherited a personality trait common to those Immigrants who settled Texas and most of the rest of the Southern states, descendants of mostly Scotland and Ireland. Fiercely independent and self-reliant these Pioneer ancestors passed down these attitudes from Father to Son.

The Texas Tendencies of pride and stubbornness run true through his veins and once he set his mind to a task he never let anything stop him until it was done.

As Children my brother and sister and I literally dreaded this phrase; “I’m doin’ it if it harelips the world” We would shake our heads and groan in anticipation of a nearly hopeless struggle and gird our loins for a long day (or days) work. For example he would conceive a desire to move a two thousand pound boulder. He’d get a wild hair stuck where the Sun don’t shine and become convinced that he just HAD to move it from the south end of a lot he was building a house on and put it on the northwest corner of the property on top of a mound of dirt eight feet high. We’d say, “Dad, it’s too big, it’s not possible with heavy machinery. Why don’t you rent a Backhoe. Dad didn’t believe in Backhoes. He was of the opinion that Backhoes were only called upon if you had to move a rock the size of Rhode Island.

After we stated our humble unbelief in his ability to move a mere ‘pebble’ the size of a Volkswagen Van his upper lip would firm up and his eyes would harden, then he would intone that hated phrase, “We’re doin’ it if it harelips the world” So our purgatory would begin, and inevitably, every single time…After a monumental struggle usually involving rope and plywood and two by fours and blood and gallons of sweat and a day or two, the rock would calmly be sitting exactly where he wanted it as if it had been planted there from the foundation of the earth.

All of us would then celebrate by going tubing down the river (Dad’s ultimate form of reward for a job well done) and we would hold within ourselves a sense of pride, (and a secret mixed desire that he weren’t so dang hardheaded and tough.

That was like wishing that a Cougar would quit eating Deer for dinner and munch quietly on grass like a sheep! It was simply the way he was. The way he was created.

He had a joyous overflowing humor, a love of laughter and an unquenchable desire for knowledge. He was always reading, everything, from the romantic poetry of Byron and Shelley to history books about ancient battles and civilizations. If an old battle was a lost cause and the fighters were hopelessly outnumbered, he loved it!


He was constantly surprising us all with lengthy quotations from old books, suddenly chanting various passages at length then applying them in humorous contexts. If one of his deeply loved Grand children was straining every muscle to carry a board over to him as he built a house he’d say something like, “Wow Kyle, you are the strong man!” Then he’d launch into some chanting rhyming verse about an ancient lost battle. The juxtaposition of a little towhead boy struggling proudly with a ten foot long two by four and a heroic epic poem was truly funny.

That was then back in the days of light and health. Everyone that knew Dad was convinced he would live to be a hundred years old and still be building houses and riding bikes. Every now and then you read about Men like we expected him to be at one hundred years old.

Picture this headline… “100 year old man climbs Mt. Everest” or learns to fly a glider, or builds himself a submarine, or some such unique adventure. He never drank or smoked and always ate right (even though he used to pick up Doritos corn chips off the floor with his toes and eat them) He was not overweight, he rarely had a sick day and when he did it took him usually a day or less and he’d bounce back to health again.

About four and a half years ago years ago he began to behave strangely. He began forgetting words and struggling with simple tasks. Within a few months and after multiple doctor visits Lewy Bodies dementia was his diagnosis. As his health deteriorated so did my heart, so did my spirit. As he got worse so did my hope and love for God.

He spent four years at home with my Mom as his primary caregiver until finally she simply could not go on. Lewy body’s dementia brings confusion and some slight hostility and he actually hit Mom a few times. He never struck her in the face, just the arm two or three times which showed that he was exercising his iron will since virtually every Lewy Bodies victim lashes out violently at those around them. Thankfully he did NOT exhibit any of the typical sexual aggression many Lewy Bodies patients act out. God is merciful!

He became increasingly incontinent but still retained bowel control until just in the last three months or so in the nursing home. Since Lewy body patients typically suffer from sever constipation he was thankfully spared the ordeal of having his diaper changed very often. Thank God for the retention of small dignities in this also.

In the last year he began to need help with his table utensils. He’d go several days using a spoon just fine but then he’d go a day or two needing help, say, steadying his hands. They would sometimes shake so much he couldn’t get the spoon in his mouth. Around two months before Mom was forced to place him in a home he became almost completely dependent on my mother to feed him like an infant.

At this stage he still recognized everyone and when asked would say, “This is a sonofagun Roy” I’d ask him how he was doing and he’d say, (like he always said) “I’m still on the right side of the grass” or, “Considering all things its better than the alternative” His unshakable philosophy that life is better than death prevailed though out the course of his illness.

This period of time at home with my Mother caring for him was unspeakably difficult for her. Her commitment and love, her determination to honor her Wedding vows in sickness and in health were honored to the full and beyond. I’m in awe of her strength and love to Dad. AWE!

I spent a week helping her care for him six months ago and in a few days I was exhausted. Every three minutes he would call out for help in his confusion, going to the toilet and needing help pulling his pants back up, then back down again for five minutes, then up again and so on. Over and over. All day long. I realized Mom couldn’t keep on without destroying her health and sanity. It was time.

After a few false starts we found a nursing care home for him in Portland that was equipped to deal with his unique problems. This was March. Mom began her long nomadic half-life of driving three hundred miles every week and spending the nights with various relatives living within an hour or so of the Care home.

God gave her a wonderful friend in Grants Pass whose husband is also in Gracelen Terrace with Alzheimer’s to share driving burdens so she had company in the ‘fellowship of sufferings’ she was in.

Personally I only visited Dad five or six times over the last four months when he was in Portland. I found my heart shrinking and growing cold. Hard hearted-ness and bitterness were my constant food and drink. I’d visit him and shrivel up on the inside.

There are no eyes in the world as terrible and painful to look into as the eyes of a dementia patient. Meeting the gaze of someone who is in hell is painful beyond description. Dad’s glowing eyes once full of light and humor and joy, dancing and engaged with intelligence, were now dim and rheumy. Worst of all, out of those once clear lamps was an emanation of despair and hopelessness. A dark mix, a mix that in meeting his dull stare, lit a response in me of the same black emotions.

I’d leave Portland feeling so angry and frustrated, feeling as if my lungs were oozing up into my throat and I’d chew bitterly on them, only to choke them back down. Constantly over the last two years I’ve been living and the knowledge of Dads Plight was on my mind. “Here I am,” I’d say to myself, “At church/watching TV/scuba diving/hiking/fly fishing/laughing/working/eating/at the movies/on vacation/etc. etc. etc. and Dad’s up there in his own private hell!” Then in the privacy of my soul I’d bitterly curse using the vilest expletives I know, chewing my lungs in frustration, bitterness growing in me like a cancer.

For many years I’ve been on the worship team at church. I have a unique gift of music. I can’t read music and I don’t know one key from another but I can ‘play by ear.’ The worship leader will go. “OK now, in the key of ‘G’ and I nod like I know what she’s talking about, and then we start in and I somehow instinctively play in that key as soon as I hear it. I sing and can ‘hear’ harmonies in my head and sing them not knowing if I’m on the alto or tenor or bass part.


Sometimes other singers make light hearted digs at me. “Hey you’re stealing my part!” I mostly play soprano saxophone and I don’t play melody or harmony. I just improvise as I go and most times feel the love and passion and presence of god and out of my innermost spirit flows music. People tell me they are blessed and love my addition to the worship services. I’ve even received the high compliment on occasion of people telling me, “You usher me into the presence of God!”


About a year and a half ago I found I just could not play anymore. I’d get up on the platform and try to play or sing and all I could do was toot out noise. My spirit couldn’t touch my horn and my passion for God and beauty in music was choked off. All I could do was chew my lungs in frustration and think, “Why would God do this? Why would He let Dad who loves him so much and who has served him so well all these years let him live in this living hell like this? How could He be good? Then because I know God is good and am committed to loving God anyway no matter what comes I would feel a sense that I had betrayed the Lord and abandoned my own faith and guilt and weakness and a sense that I was becoming someone and something I’ve always hated. I felt as if I were being inevitably dragged toward cynicism and sarcasm and fear and faithlessness at last.

I fear faithlessness above all else and here I was like a ship without a rudder being driven steadily toward those hungry cruel shoals, those reefs lurking at the edges of all our questioning hurting hearts. Those treacherous rocks that tear the guts out of the ships of our souls and grind the passengers into oblivion on the cliffs that plunge into the sea.

Not being able to worship God wholeheartedly was just a symptom of the beginning of my faithlessness. Oh I’d go to church and lift my hands to heaven and worship but it was a mental decision, an act of the will alone with my emotions deader than a doornail. “I don’t feel this Lord,” I’d pray, “And I don’t want to do this but I still BELIEVE you are good and you are worth praising even though I can’t stand you right now… I make a choice alone and I’m chewing my lungs in frustration and anger but I still stand and lift my heart in deadness of emotion and say you are good. Even though I don’t even like saying it.” (Could this be an example of what the bible calls a SACRIFICE of Praise, a Decision to worship unassisted by passion and actually opposed by Emotion, an act of the will alone?)

Thus was my spiritual state over this illness of Dads. I think of the line from the song Amazing grace. “Through many dangers, toils and snares, we have already come. T’was Grace that brought us safe thus far, and Grace will lead us home.”

I have the assurance because of Jesus taking my place on the cross that God is and was not, could not in fact ever be angry with me because of my emotions or failures or sin but it still was a very painful and joy choking place to live.

Dad’s deathwatch changed all of that… The manner of his passing has healed me.

I got an email from my Mother last Friday. She said the nursing home called her and Dad had an infection in his lungs and a fever of 102.9. They were certain that he was going to get pneumonia and would not recover. He hadn’t been eating any solid food for over a month and was only eating Yogurt and sweet Jell-O. Deserts only. All Lewy Body Patients get to this point. Typical mortality for Lewy Bodies patients is three to five years from onset to death and Dad was no exception. They come to the point where their swallowing reflex becomes depressed and quit eating. Dad was there, at the threshold. The bell tolls for thee and Death was yanking the rope for Dad.

I was dreading seeing him so I chose to go scuba diving Saturday instead with no real intention of seeing him Sunday. Sunday morning I woke up and faced my responsibility and my Wife Tandra and I drove to Portland to see him one last time before he died. I figured I’d endure an hour visit, then go home and continue working until I finally was told he had died. I would then go to his funeral in a bitter state thinking; well at least he’s in heaven now even though he died like a dog without any meaning. My bitter heart would have continued for who knows how long…

God had other plans, plans to bless me and not hurt me, plans for joy and a future that is free from my choking, lung chewing present.

Arriving at the Dementia care home is always a huge downer. It’s a lock down and barely escapes the feel of a jail. Gracelen Terrace is a real nice place, the staff and nurses are excellent and the smell of urine and feces is barely detectable. All the patients are very clean and everyone seems cared for but the faces of Dementia victims are bleak beyond description. The tremors and mumbling, vacant stares and groaning are all very difficult to bear. Throughout our time there a patient would shuffle up to one of us and say, “I’m so sorry about the car wreck” Or other confused disjointed sentences that revealed their complete mental disconnection. These confused wrecks of human beings are painful to behold, especially since my own indomitable Dad had become one.

I think that for most families a member with dementia is so painful to visit that it’s far easier to put the Dad, Mom, or Sibling out of your mind and visit only a few times a year until the memory fades away. We saw almost no one coming to visit while we were there. Family members come, suffer extreme pain watching the decline, then feel overwhelming guilt that there’s nothing they can do so they don’t return for months, then they feel guilt for not visiting more and maybe resentment and fear. All these things result in few visitors and nothing but the walls and the bland mindless Spirit draining noise of Jerry Springer on TV while the person in the bulldog’s mouth slowly has their hope, joy and life slip away leaving them lonely and lost at last.

Dad had a unique disease that was very rapid in terms of the usual progression of dementia. Alzheimer’s and other types take decades from onset to death. Quite frankly I’m overjoyed that his disease only lasted four years instead of the more common ten to twenty years as Alzheimer’s and other types grind on leaving the body ‘healthy’ as the mind goes away, yet the emotions stay intact and the patient desperately feels…

When I saw Dad in his bed right away I knew this was it. He looked just like a concentration camp victim. He still recognized me and made that bleak dull eye contact but all he could do was move his mouth in a vague weak quiver trying to form my name. Pain shot through me as it always did seeing him like that. Pain…

Mustering my courage I began to enthuse, “Hey Dad, It’s Roy. I’m here!” Like I go visit him often, like me being there makes a difference, I think to myself. “I’m here”, then (Stupidly) “How you doing?” (God we ask idiotic questions don’t we?) His mouth quivered some more trying to form an answer and I figure, knowing him that he was saying, “I’m in pretty good shape considering the shape I’m in” or maybe, “I’m still on the right side of the grass!” He would say these things even toward the end, even with his eyes so dark and desperate looking… Having said this there was a long awkward pause as I waited for some response. Nothing!

With dementia patients the ball is completely in your court, it’s like playing tennis without an opponent. You hit the ball then run over to the other side of the court, then hit it back. You carry both sides of the conversation. And desperate to inject some help and hope and love and joy while feeling none you’ve got to damage yourself by forcing out some laughter or a good memory or something, anything! “Say Dad!


I was remembering that time when we hiked up the railroad tracks and Millie, (Our dog) ate a dead raccoon and Mom started gagging when she saw it so she ran on ahead, then Millie ran right up in front of Mom, puked the raccoon up and ate it AGAIN right in front of Mom while she screamed. How we laughed! We told Mom that Millie just wanted a hot meal!” (True story that one and funny as heck!) If you were lucky you would get a small smile peeking around the corners of his mouth like the sun peeking through the clouds on a black wintry day.

The resentment and bleak helpless feelings rose up within me again as I looked at him but this time was somehow different. Maybe it was because he was so pitiful, so starved, so small and vulnerable, so defenseless and pitiable… This is VERY important. He was NOT pitiful. Dad could never be pitiful… He was pitiable. Pitiable.

I found I couldn’t leave. I had to stay with him. In helpless fury I could not leave. I think if someone would have tried to force me to go there would have been blood on the ground and not all of it would have been mine! I told my Wife and Mom I was staying and all the questions like, what will you wear? Eat? Sleep? You don’t have a change of clothes. Will they even let you stay until he dies? What if it takes him two weeks to die? Didn’t matter. I was staying.

I was staying.

I figured it would be more frustration and anger and bitterness as I gnawed at my lungs in agony as he faded into death but I knew I was willing to pay whatever price it took even though I knew it was beyond my endurance. I wondered if it might unseat my reason but I still helplessly had to stay. This was my Dad, my flesh and blood, my Dad. So I wore the same clothes for four days. I ended up washing my shirt and ‘undies’ in the bathroom and ‘going commando.’ I tried to amuse Dad by hanging my underwear up on a hook in the ceiling of his room. (He used to hang his undies to dry on car mirrors or lampshades after swimming and stuff.)

Mom, my younger sister Wendy and Dad’s Sister Lynn and I all decided we would do a death vigil and no one would leave his side until the end. The nurses at Gracelen Terrace were certain he would die in two weeks at the maximum but probably less than one. We cornered one of his primary nurses who worked with him over the past few months and she said, “I’m really not suppose to say but my opinion based on years of caring for patients is three days.”

She was still trying to feed Dad and the food would just sit in his mouth and she had to spoon it back out before it slipped down his esophagus and drip into his lungs contributing to his pneumonia. Dad had years before signed a ‘Do Not Resuscitate, Do Not Force Feed Do Not Do Blood Infusions… etc.


No measures were to be taken to extend his life since it was not possible for him to recover any measure of health with this terminal illness. If we would have agreed to antibiotics for the infection and a feeding tube to force feed him he would have been hooked up for another two or three months before he died anyway so we honored his choice and watched him begin to waste away from starvation as well as everything else. He drank a few fluids but that stopped quickly by Monday morning.

Water would trickle into his lungs also. The nurses tried vainly to get him to swallow some, ‘thickened water.’ I did not have the courage to taste this concoction but I suspect it tasted a lot like snot. Some kind of gelatin mix I guess. So in one hundred degree heat in a non air-conditioned nursing home I drank bottle after bottle of water and watched as the nurses spooned tiny little portions of ‘thickened water’ into his slack mouth and then wait a minute or two asking, “Did he swallow…? I’m not sure, I think it’s trickling down his windpipe.” At last they gave up trying to give him water and his mouth began to dry up from mouth breathing and sweltering heat.

The inside of his mouth began to chap and crack so we swabbed it out with a glycerin lemon swab made for that. He couldn’t tell us if he was thirsty but I can only imagine his thirst. It must have been intense. And it had to have gotten worse by the hour. (I just made myself so thirsty by typing all that that I got up and got a glass of ice water, ‘I gotta take a sip…’aaahh! So refreshing!)

Sunday night he was still moving his arms and legs a little and still had some facial expressions and would answer some questions in one-word sentences. The last two words he ever spoke in this World were “Yes…” and “love…” Mom asked me to sing the song ‘I Can Only Imagine’ by the Christian Band Mercy me. The lyrics are very simple and about one thing… Heaven… Here they are…

“I can only imagine what it will be like, when I walk by your side…

I can only imagine, what my eyes will see, when Your Face is before me!

I can only imagine.

I can only imagine.

Surrounded by Your Glory, what will my heart feel?

Will I dance for you, Jesus? Or in awe of you, be still?

Will I stand in your presence, or to my knees will I fall?

Will I sing ‘Hallelujah!’? Will I be able to speak at all?

I can only imagine!

I can only imagine!

I can only imagine, when that day comes, when I find myself standing in the Son!

I can only imagine, when all I will do, is forever, forever worship You!

I can only imagine!

I can only imagine!

Surrounded by Your Glory, what will my heart feel?

Will I dance for you, Jesus? Or in awe of You, be still?

Will I stand in your presence, or to my knees will I fall?

Will I sing ‘Hallelujah!’? Will I be able to speak at all?

I can only imagine! Yeah! I can only imagine!

Surrounded by Your Glory, what will my heart feel?

Will I dance for you, Jesus? Or in awe of You, be still?

Will I stand in Your presence, or to my knees will I fall?

Will I sing ‘Hallelujah!’? Will I be able to speak at all?

I can only imagine! Yeah! I can only imagine!

I can only imagine! Yeah! I can only imagine!!


I can only imagine.

I can only imagine, when all I do is forever, forever worship You!

I can only imagine.”

As I was singing Dad’s eyes were fixed on me, and Mom said the song mesmerized him. After I finished singing I felt led to talk about Heaven. How the Bible talks about a new heaven and a new earth and that we were made for a world, not a bodiless existence like ghosts hovering in Ether. Heaven is not a place of nothing but boring harps and clouds but a new perfect world without death and sin and disease, a real PLACE where no one grows old or starts wars because Jesus came to change our sinful natures and make us truly whole.


I told him that in heaven we would build houses together and go on bike rides, finding luscious deep water holes in crystal Rivers. How we would tie ropes from overhanging trees and swing out over the water in the soft breeze, then drop like stones into the deep clear cool water only to surface to a huge celebration of family and friends enjoying a barbecue.


I strove to tell him that Heaven is a place of adventure and learning and growing and Love and peace. That in heaven in that new perfected world there was going to be rocks and grass and dirt and flowers and together we would one day again build houses together and go on cycling adventures lasting months, cycling though Canada or Siberia… I spoke for five minutes or so (Which should really surprise those of you who know me because normally I’m such a taciturn person, a man of few words… You should at least have a small smirk on your face after reading that. I do tend to ramble on at length about everything) and he just stared and stared at me as I carried on. I took a few steps to the side just to see if his eyes would follow me and they did.

He got a tear, which was the only way we could tell he was hearing us there near the end. He never got any tears unless one of us was speaking to him and telling him how much he meant or how much they loved him and so on… I consider those tears more priceless than anything on earth, especially in the light of how much they cost him. Each tear put him further into water debt hastening the ultimate shut down of his kidneys and death. After I preached my mini sermon Mom asked him, “Bill… Do you believe that?” He stuttered a few moments and then said, “Yes.”


Later Mom was telling him how much She loved him and said something like, “I know you love me Bill. Can you say you love me?” He stuttered a little and then said the one word. “LOVE.” He never spoke again in this world. How fitting it is that His last words were “Yes,” and “Love.” These two qualities summed his entire life up.

At this stage of the week I learned an invaluable lesson. I still found my heart growing cold at times and the ‘chewing on my lungs’ sensation as I struggled with resentment and pain and bitterness over his awful fate. As I thought about Dad dying in Futility I would begin to feel peace and love drain out of me and a sense of frustration and anger growing in its place.

I went for a walk in a nearby park and was weeping and raging at the same time. I felt in my spirit that God showed me myself all hunched over with my arms around my chest and my knees drawn up in a fetal position, my head drawn tight into my shoulders and I was all balled up in a position trying to protect myself, to keep all my vulnerable areas like my stomach and groin covered up from blows.


Then I got an image of Christ on the cross completely stretched out. Completely exposed and vulnerable, in a position of total helplessness and vulnerability pinned like an insect to a board by the nails and He just relaxed and stretched out even more exposing all of himself to abuse and yet he still kept his heart gentle and kind and soft. He just absorbed everything the soldiers and priests did whether it was blows or spitting or taunts and let it sink into his loving being where the depth of his love absorbed it all. They could have done anything to him, anything at all. If they had pried his kneecaps off with a hammer and chisel for example he would have simply borne it and loved them in return saying, “Father forgive them for they do not know what they are doing.”

God showed me how to stretch my spirit out into a cross shape and just let go. As the days progressed and my heart would ‘chew on my lungs’ in frustration and bitterness I would literally stretch out my arms into a cross shape in an attempt to encourage my spirit to suffer as Christ suffered and EVERY SINGLE time I did this, the peace and love of God would flood through me and the bitterness would leave!


Not the pain of grief or the agony of Watching Dad fade away but the bitterness and scrambling desperation would go. This was an unbelievable boon to me. A prize that has eluded me for several years and I luxuriate in the bitterness fleeing like a man would luxuriate in a toothache finally stopping after years. Maybe this is part of what Paul meant in Galatians chapter two when Paul said, “I have been crucified with Christ and it is no longer I who live but Christ lives in me and the life which I now live in the flesh I live by faith in the Son of God who loved me and delivered himself up for me.”

After this it became a little easier, Well… not easier but more gracious and loving and kinder… My own heart that is…  Not a single part about this experience was easy, not one. It was the most difficult four days I have ever been through. I felt as if I was a sixty-watt light bulb and six hundred watts was being forced through it. I felt like a Circus Searchlight shining so bright and hot that it was certain to burn out if it burned too long. There is no way in the world I could bear such a burden for a longer period of time.

I feel as if I was born with a battery of energy that had lain dormant in me all my life, placed there as a resource. A deposit like a vein of coal deep in my spirit I was unaware of, and now it’s used up and I couldn’t possibly do that again because I am empty now of all that it took. Or, as if I were the pilot of an airplane flying over the Himalayas and slowly but surely was running out of gas.


Hurtling helplessly and desperately toward the sharp hungry peaks, certain that the plane was going to crash the co-pilot says, “Hey! I wonder what THIS switch is for?” and flips it on. Against all hope the motor sputters, then catches and settles back into its healthy hum. I yank the stick back and the plane pulls out of its dive inches above the jagged rocks and I go, flying on a previously unknown gas tank hidden away deep somewhere in the airplanes cargo hold.

We really don’t know what strength is within us but it seems clear to me that God has put into each of us the exact amount of strength and grace to accomplish all he wants us to do on this earth and those four days were definitely His will for me from before I was born.

I slept very little Sunday night, maybe five hours.


Monday was like caring for a baby, totally helpless and needy yet I didn’t dare see Dad as a baby. This was my Dad, My Father the Man! Daddy could do anything he set himself to do. The man who conceived me, and loved me, and spanked me, and helped me, and prayed for me, and showed me what it was to be a Man by example, word, and deed.


Dad the Giant who stood on a bridge in Alaska to take a leak and then announced in his own humorously understated sneaky way as He was peeing… Shivering… “Man that waters cold…! Deep too!” I remember Mom saying  “Bill!” in a scolding tone but with a smile on her face like she was mad at him but laughing against her will, and I’m thinking, (as I at eight years old standing next to him with my brother by my side striving manfully to pee as long as he did and failing miserably) “how in the world does he know how cold that water is, its forty feet down there, not only that, how does he know it’s deep, you can’t even see the bottom… and why is Mom mad and laughing?”


Ah for the innocent Non-sequitors of Youth. It wasn’t until I was in College twelve years later spending time remembering that trip and us Peeing off the bridge that I finally ‘got it’ I laughed for ten minutes and couldn’t tell my roommate what I was laughing at until I caught my breath! (If you don’t get that joke go ask your grandpa to explain it to you)

When I was a young boy this man now lying withered in bed was a giant to me.

Once when I was a boy, only third grade I think, I was playing in the backyard with a friend of mine. This buddy was a little more advanced in iniquity than I was as at eight years old and he had been teaching me some new words. The ‘big’ words, the Granddaddy no no words that I had only heard at a distance from some of my more, ‘Texas’ relatives. The crush kill and destroy words… After he challenged me to say one,

“C’mon!” He shamed me. “Go ahead! Are you scared little baby!” I remember mulling around the biggie, the Master blaster of all cuss words, the dreaded “F” word around my tongue, thinking I would be ultra cool if I said it. Finally I just hauled off and said… ‘It!’ It was a huge mistake indeed. The instant that word escaped my until then virgin lips a hurricane descended upon me! Literally out of the sky my Dad fell! Landing an inch or two next to me he jerked me to my feet! I was dead! Life was over, “why oh why did I do it?”


He had been walking in the vacant lot behind our house and had paused for a little while to listen in on our conversation, and overheard me saying… That! So he simply leapt over the fence. In my memory I remember the fence being around ten feet tall, and it probably was. When Dad was in his prime he could leap into the air and kick the ceiling and land back on his feet with ease. So… I had just finished saying the last ‘k’ of… ‘That’ word and without warning my butt was being flogged by my Dad. I thought he was everywhere and knew everything!

It seems impossible that he was reduced to that shell, that living Skeleton his body became at the end. It’s like discovering water isn’t wet anymore, or fire isn’t hot. It seemed like an outrage against nature and all that is good.

Monday was a blur of more pain and grief as Mom and Wendy and Lynn and I sat by his bed. Several times relatives came and visited. Grandkids who are now driving their own cars and Dad’s other sister Nilda. People from churches we were in over twenty years ago and who now live in the Portland area came to visit. They each would stay for an hour or two then leave. Part of me envied each of them as they drove away.


I so wanted to be free from the grief, from the incredible agony of watching this man who was superman, who shown like God himself to me when I was in my infancy and early childhood, My Dad whom I never once dared to sass, or talk back to, or disrespect in any way. At least directly to his face that is… I truly believed as a child that if I had ever sassed him, I would have…  Well the consequences were unthinkable.

Monday sitting at vigil next to Dad I told Mom a story she hadn’t yet heard. She knew the details of course; she just hadn’t heard my side of it yet. I asked her if she remembered when I got into shoplifting at twelve years old and got caught. Like a Mother could ever forget such a thing, of course she remembered. I filled her in on the details from my perspective. I swiped a can of sardines from Safeway just for the thrill of it. After the store Manager and bagboys ran me down the Police came and took me to the police station.


A few minutes later the Cops threw me in Jail! I found out later the Police Chief and Dad were friends and the chief had called him. Dad asked him to throw me in jail and scare the hell out of me. So they did. In a cell, with the bars clanging shut, and the toilet in the corner, and the cot without a sheet, a stale striped blue and white mattress, light bulb in a cage on the ceiling, the whole nine yards. I was scared out of my mind but in typical White fashion became sullen and threw all caution and sanity to the winds and mouthed off to the cops, cussing them and daring them. (I’d never mouth off to my Dad but heck, these guys were only cops. Cops were nothing compared to the force of nature that was my father.)

Once when my brother Bud and I had been caught throwing snowballs at cars the guy whose car had been our victim chased down a friend of ours who didn’t have the sense God gave and ant and didn’t run like we did. Our ‘friend’ squealed on us and by the time we got home… Dad was waiting for us with ‘that’ look on his face. He drove us to our targets house to apologize, and most likely work our rears off weeding his yard or painting his fence or some such nonsense punishment Dad always came up with as an act of retribution.


I remember this guy was very upset and was a bit of a blowhard, carrying on about this and that. Then he made his nearly penultimate mistake. He began to act like he wanted to fight my Dad and got a little belligerent. Dad does NOT take kindly at all to such baloney and began to swell up like a hooded cobra snake. The guy deflated like a beach ball very quickly thus saving himself from sure and certain annihilation but then threatened to call the cops on Bud and I. Then my Dad uttered these words that have since become part of the fabric of my both of our lives. “Listen, if I cant handle this, the Police DAMN sure cant handle it!” Dad was so cheesed that he didn’t even make us work for the guy, but he did warm up our butts for us with his big leather belt, oh Yes…

Anyway, back to the shoplifting incident.

Rabbit trails again, those darn white tales bobbing in the corridors of my memories, I just gotta chase!

So there I was in jail, and to this day I’m surprised Dad didn’t talk them into putting me in handcuffs. Finally Dad showed up. He didn’t say much, just, “lets go home Roy.” I stared out the car window in shame, afraid to even look at Him driving in silence, the tension in the car wound to fever pitch.

When we got home he said,  “Go to your room” In a quiet monotone. He left me thinking in my room for what seemed like hours feeling more wretched and miserable by the minute. Finally he called me upstairs and sat me down, and just talked. Talked. I can’t really remember what he said now but his tone was so grieved and sad. His face so worried and full of care. I was stunned; this was not a side of Dad I had seen yet at twelve years old. That he could be worried and filled with grief and fear over me.


I remember him making vague remarks about how I had a police record that would follow me all the days of my life and how in the future when I try to get a job Employers will run a check on me and not hire me. He talked about how I had disappointed him disgracing myself and our family and so on. I couldn’t answer his question about why I had stolen the Sardines. He twisted the knife a little by asking me if I was hungry, “We can buy you as many sardines as you want. We’ll keep them in the cupboard for you.”


To this day I hate sardines because of this nefarious episode in my youth. As the days passed my crime hung over my head like the sword of Damocles and I wasn’t sure how I could get used to the idea of being a criminal. I slunk around the house like a thief. Finally one day Dad called me up to the kitchen. He showed me a piece of paper. “See this?” he said, “This is your police record. They sent it over to me so I could show it to you before they put it in your file. (It had never before dawned on me that the police might have a ‘file’ on me)

“This is the one of the consequences of stealing. You have a criminal record now.  I want you to think real hard about that because it’s going to be part of your life from now on.” I was speechless. I didn’t really learn how to release the block holding my tongue until after I got married. My dear wife Tandra, through years of patience and love made it so. Without her all these words would still be bound up in my heart without any means of expression. Just today Tandra and I went for an hour and a half walk and as we walked, we talked. But as a young boy I couldn’t share my feelings to save my life. I used to show Dad my love by hitting him on the shoulder. Instinctively I think he knew that and relished those punches.

After a while he sent me back downstairs to my room. More lukewarm regret soup for Roy sitting in his room… I decided to go back upstairs again a half hour later or so, probably to watch TV or something when I saw Dad do something I’ll never forget.

Our house was a two story with a daylight basement. The stairs were in a direct line with the front door. As I trudged upstairs I saw my Dad sitting there with his back to me. I realized he didn’t know I was watching him. He was sitting on the front step with the door open. His shoulders were slumped and he was looking at my hated police record. I stood rooted to the spot feeling like dirt stuck to the bottom of Hitler’s shoes.


Sighing heavily he took out a wooden kitchen match and struck it on the concrete front stoop that he himself had poured with his own hands. He held the lit match up and peered at it, then lit the bottom of my police record! I watched as the flames burned at the edges of the paper. He held onto it with those hardened carpenter hands as the flames eagerly reduced my record to untraceable ashes. I watched as the flames burned right up around his fingers. He never flinched, just watched. At last he dropped the filthy paper and ground it to dust under his heel on the front doorstep. I turned and crept silently back downstairs, watching TV now forgotten.

I knew right then and there that his friends at the police station had sneaked my record out of my ‘file’ and given it to him to destroy. I was stunned! My police record was gone, ground into ash as if it had never happened. I know Dad remembered it, but he never once after this treated me like a criminal or even mentioned it again. And he could have… He could have used that crime against me like a goad saying something like, “I knew you would come to no good, I’ve known it every since you stole the sardines…”


Many parents would have used this ammo against their children.

He didn’t.


It took me many years before I finally made the connection. Dad revealed the heart of God to me. When Christ died for our sins on the cross he was dealing with the record held against us in our files. He forgives and burns away our sins until they are completely obliterated and are no more. It is exactly as if they never existed in the first place. God does it all because he is love! He IS the Father’s heart! Our earthly Dad’s are suppose to reveal this to us. Many don’t. But through this act of grace and many others like it my Earthly father did, I learned a lot about what God’s Father heart means. All Praise to the name of The Lord for his mercy is everlasting!

There were some Carpenters working on the nursing home roof Monday. Gracelen is set up as a ‘U’ shape and I was a little disappointed because they were actually working on the roof in another wing. Dad was sharing a room with four other men and could not hear the construction sounds from his room.


Every so often I would leave to get some fresh air and walk outside, walking around in the fenced in garden. I kept looking at those guys up there pounding away and thinking, “Dad would love to be up there! I can just see him on a job like that. I myself have been with him on jobs like that a million times. I wish they would come and work on the roof above his room!” Dad loved construction. He was in his element on a job like a fish in water. It energized him to do this.

Twelve years ago Tandra and I finally saved up enough money and we bought a Lot. We found a perfect piece of property up on the hill in Turner, just south of Salem. When Tandra and I got married Dad promised to build us a house anytime we wanted so we finally were making it happen. He drove his motor home up from Medford and lived in it all summer as we built the house. I’d get off work and go directly to the job site. Typically Dad had done no work on the house while I was at driving for FedEx.


He spent his days playing with his grandkids! We’d work until dark. I took all my vacation that summer and spent it working on the house. Weekends were working, every spare moment we worked on it. A friend once came out to see a house dad was building after the sun had gone down. We were hammering away and my friend asked Dad, “How can you even see the nails you are driving? Dad was quick thinking on his feet and said, “I just reach over with my thumb between blows and feel the nail head, then just before my hammer hits the nail I jerk my thumb away!” What a joker…

He built us our house when he was sixty-one years old. I can still see him up on our steep, steep roof, clinging to the eaves with one hand, a mouthful of nails in his mouth, and ancient carpenters pouch black with use slung low on his hips like a gunslinger. He was so nimble he would actually let go of the roof, grab a nail with his left hand, seize the roof again before he fell, then let go again and set his nail. Once the nail was started he’d finally drive it home. I remember him up on top of a two by six ‘top plate,’ (Carpenter lingo for the board that sits on top of a bare wall) and calmly waling along twenty feet up as if he were strolling though a garden.

That was a great summer! And… After he built it for us using his own money, we went out and got a mortgage to pay him back. Guess how much we paid him…? Go on! Guess… All he would accept from us was the cost of materials. He wouldn’t take a dime for his labor! We got a house for around a third of what it would have cost us new. So now I have a mortgage that’s ridiculously low!


Way lower that renting an apartment even. It’s like he is paying two thirds of our mortgage for us every month! When I was a kid dad never paid me for all those long days sweating and slaving away from sunup too sundown on one of his jobs. I admit I enjoyed working with him as a kid but I used to get a little irked he didn’t pay me. “He’d say something like, “I’m payin’ you in food every day” or some such nonsense! Now all of that work is coming home to roost! Like the bible says, ‘Cast your bread on the waters and it will return to you after many days.’ The principal of Sowing and reaping is always true, even though it takes years. I figure Dads going to save me a total of a quarter million dollars!

Dad loved being a carpenter! He was constantly building sheds and garages for people in church. Once he even went all the way to Japan to build a house in Osaka for a man who worked with missionaries over there!

At Gracelen Terrace I greeted these carpenters on the roof and asked them if they were going to be working on Dads wing. No such luck! I was disappointed. Dad would have loved to hear their entire racket! I wanted to borrow some of their tools and go outside of Dads window and start pounding nails and stuff so Dad could hear.

Where was I? Oh yes… Back at Gracelen Terrace Monday night. As the evening dragged on the Staff, realizing that we simply were NOT leaving, decided to offer us dinner at no cost. It was rather bland to say the least. Wendy and I joked around that Dad was dying just to escape the cooking!

Finally just passed past midnight Wendy and I retreated to Aunt Lynn’s Motor home to sleep and Lynn went to her Daughter Kathy’s house in Portland to spend the night. Mom stayed at her post by his bed and dozed a bit in a reclining chair.

It was nearly one hundred degrees that night and I slept fitfully. Wendy woke up to use the restroom at around three thirty or so and I woke up. Away from the imminent presence of Dad’s death we both began talking. All our fears and grief and love and inner feelings came pouring out. Before we knew realized it was five AM!

Our family are talkers. Boy are we ever! Dad left us an incredible legacy of stories and jokes and a strong tradition of family unity. Our family doesn’t always communicate well, but, we communicate. One of these days I’m going to sit down and write out all the rich, colorful stories Dad used to delight in telling us (over and over and over and over) but it would take weeks of doing nothing but writing.

Wendy went back to sleep at five for a few more hours and I tried but I’ve been a notorious insomniac for many years. Once I wake up after sleeping several hours at night I very rarely fall back asleep. Especially if I have anything on my mind and I think I had a few things on my mind that night. So much pressure and stress gnawing away at my mind so I finally gave up, got up and went and sat by Dad’s bedside again.


Five thirty in the morning at a dementia care home is a bleak hour indeed. The monotony of the day and the gray early light, the lost ‘sun-downer’ Alzheimer patients who have wandered the halls most of the night, the faint smell of urine and disinfectant, stale old breath recycled endlessly through desperate paper thin wasp nest lungs wheezing hopelessly in and out all combine to make an especially bitter potion. My own eyes grainy from lack of sleep, lightheaded from grief and pain. Not fun at all…

When I got to Dad’s room Mom was sound asleep in her recliner so I was mostly alone with him for a few hours. I began reading scripture. I wasn’t sure if he was awake or not but decided it didn’t matter. If he was awake I knew it would bring some comfort to him and if he wasn’t I knew it would do me a load of good. I read twenty chapters or so of Isaiah starting in the fortieth chapter (Chapter forty through the end were written by Isaiah after the children of Israel were taken by the Babylonians into captivity and their suffering and oppression at the hands of their enemies had brought them to their knees in repentance and a renewed trust in God.


These chapters contain some of the most tenderhearted declarations of God’s love in the entire Bible. “But now, thus says the lord your creator, O Jacob, and He who formed you, O Israel. Do not fear for I have redeemed you. I have called you by name, you are mine! When you pass through the water I will be with you, and through the rivers they will not overflow you. When you walk through the fire you will not be scorched, nor will the flame burn you” There’s so much there. Go… Read it!

As I read I was holding Dads hand. I wasn’t sure he was conscious but he opened his eyes from time to time. His hand twitched randomly from the Parkinson’s part of Lewy Bodies disease but He wasn’t squeezing my hand anymore. I wasn’t sure if he was hearing me but I doggedly kept reading like a man dragging a plow over rocky ground during a four-year drought after his Oxen had starved to death.

I was reading Psalm seventy-two when it happened. Like the river that burst from solid Rock when Moses struck it in the Desert Dad gave me a mighty gift! There are many great truths in Psalm seventy-two. Here are a few samples… “May he come down like rain upon the mown grass, like showers that water the earth. In his days may the righteous flourish and there be an abundance of peace until the moon is no more… He will deliver the needy when he cries for help, the afflicted also and him who has no helper.


He will have compassion on the poor and needy and the lives of the needy he will save. He will rescue their life from oppression and violence and the lives of the needy he will save… May his name endure forever, may his name increase as long as the sun shines, and let men bless themselves by him, let all nations call him blessed…” So much more I could quote from this section of the Bible.


There is so much strength and life in God’s word! I was trying to read with much feeling and emphasis hoping that with a more dramatic reading the truths of God’s word would filter into Dad’s being, past the Dementia and into his spirit. I came to these words. “Blessed be the Lord God, the God of Israel who alone works wonders, and blessed be his glorious name forever; and may the whole earth be filled with his glory! Amen! And amen!” As I read these words Dad Clamped down on my hand, harder than I would have thought possible in his emaciated state squeezing with a steady continuous pressure! Clearly shouting at me…


I immediately got goose bumps the size of Grapefruits on my arms. The hair on the back of my neck stood on end! I was absolutely floored, completely flabbergasted by his faith and Love for God! That single squeeze was such an incredible affirmation of the light and love and goodness of God coming from that place he was in of darkness and despair.


There he was, down in the bottom of the well, icy black water creeping up around his neck and even then, praising God! From that living hell his heart was alive and loving his God! From darkness and confusion, from the very doorway of death itself he said YES! In complete opposition to the reality of the immense suffering he was experiencing he made a CHOICE! To love God! It was (and is) the most amazing and inspirational act I’ve ever witnessed. All of us wonder if our faith is real, if the things we believe will hold up under trial and whether or not we will remain true. We will never really know without a test like this one.

Without a doubt Dad’s FAITH was TRUE!

I can’t even count the number of times I’ve heard him say, as he lay his head down on the pillow after a day well lived, right before dropping off to sleep, sighing and stretching out… “Blessed be the name of the Lord!” It was part of his routine every night. Whether it was out camping or at home, at a men’s retreat or sleeping on our couch when visiting us I ALWAYS heard him say this. Mom and Dad used to take all ten of their grandchildren to the Oregon Coast every year to a weeklong conference, The Winema week of missions.


This has been the highlight of all his grand kids summers. My boy’s rave about Winema! Mom and Dad have taken them for many years. Their only rule was, “A grandkid had to be out of diapers before He or She could go. One year after Winema week our boy’s were telling us all about how much fun they had and they told us how they all share a cabin. They said every night they’d all get into bed and Grandpa, (Or ‘bumpy’ depending on how young they were) would say, “Blessed be the name of the Lord!” That was their signal to start singing a chorus they had learned in Sunday school and laugh like loons. At the heart of Bill White’s inner being lived this eternal truth.

It’s one thing to say that when all is well and you’re enjoying the company of your grand kids at the beach, feeling sun and wind, having fun. It’s quite another indeed to say this when you’re caught like a rat in a trap in the very grip of death itself. When you can’t eat or drink or speak, when you’ve lost control of almost every muscle in your body. Picture your mouth caked with blood and raw as a bad case of road rash from a fall on your bicycle, the roof of your mouth actually suppurating, air rushing in and out and no saliva at all.


Imagine that you CANNOT drink even though your entire being is shrilling for water. Cool fresh water in your mouth and you CAN’T even swallow, the moisture on your tongue just taunts and torments you with its promise quenching the most terrible thirst you’ve ever felt. Try to imagine living like that knowing you are dying, death slowly advancing toward you as if you were tied up in front of a massive steam roller creeping up on you at the rate of one foot per hour. It’s thirty five feet away and rumbling closer.

To live… There! And still proclaim “Blessed be the name of the Lord” from a body that has betrayed you by force-feeding you nothing but the Hell that is Dementia. When Dad heard me read that phrase, that vast eternal truth that’s been part of his nightly routine for so many years he came through with a mighty squeeze of victorious unquenchable faith even though he was so weak he couldn’t even swallow water. I can’t conceive of the effort of the will that squeeze took. Or what it cost him.


He truly is a stud he dog! (One of his many colorful phrases) God’s name will always be blessed! God’s name will always be true and loving and good no matter what the outward appearance and circumstances. This is naked faith in its purest from and I am so proud of my Dad for having it and showing it to me. He was such a marvelous teacher and didn’t let this opportunity pass to teach me even then. I am so humbled by this. I let circumstances and some of my own health problems get me down and even though I am still and always will be a Christian, I frequently don’t make the choice to call God’s name blessed. I frequently don’t praise God in the midst of my own suffering. That… Is gonna change!  I repent. What a gift!

I wrote earlier how I felt like a conversation with Dad in the Later stages was like playing tennis with your self. Well… He aced me out on that exchange. Served a blazing hot ball that scorched past me and landed perfectly on the chalk line of the court of my life and actually left a divot, a deep dry safe crater that from now on will be part of the inner landscape of my Tennis court forever. He left a foxhole in me that is roomy and safe and I now will be able to take refuge in the remembering of this gift. I’ll hunker down in this inner foxhole during tough times and say, “Dad did it… I’m going to also! He showed me the way!” and I’ll say, “BLESSED BE THE NAME OF THE LORD! “

When I finally get to heaven I’ll be telling people this story millions of years from now. For millions of years God will be receiving glory amplified by the praises of all the children of the Lord in the new heavens and earth. People I haven’t met yet. I can picture at last meeting say, Abraham Lincoln and exchanging stories of our time here on the battlefield like old world war two soldiers that meet at a bar and discover that, even though they didn’t know one another they were at the same battle and instantly start drinking beer and comparing stories.


I’ll tell Lincoln about this and he will say, “WOW! That’s so awesome and powerful and he’ll shout, “Praise the Lord GOD the almighty! Blessed be the name of the Lord!” The renown of this valiant act of faith will never fade away. It is written down in a book in the heavenly library. For Jillions of years to come people will be reading it and lifting their arms in praise and saying, “Blessed be the name of the Lord.” I believe that not one single act of faith that we do in our lives is ever lost or forgotten.

They all echo forever in heaven. Eternal echoes don’t fade like the echo’s here but they gain energy and strength and grow louder and even more significant as the millennia passes.

AH! I’ve been rambling on again. I tend to chase rabbits while I’m writing. Its just that their Tails; or is it tales’ are so bright as they hop along in my mind I get distracted and follow like a beagle baying after a scent… Oh well. I’ll let it be.

Where was I? Oh yes. Monday afternoon…Dad’s main caregiver, a lady named Pat, a committed Christian who has been in the nursing home field laboring for almost forty years told us that she has rarely if ever seen such an outpouring of loving care from relatives as a patient was dying and that everyone at the nursing home was talking about us. As you may have surmised by now, Bill White, and all of his immediate and not so immediate family make a great deal of noise in everything they do. A great writer once wrote that ‘men lead lives of quiet desperation.’ Our family lead lives of loud desperation.


It’s a characteristic of all of us that descended from Frank and Eva White (Dad’s Parents, of whom I would have to write another fifty pages just laying out the briefest sketch of what kind of singular characters they were) to give heart, soul and body to everything we do. When a member of the White clan sins, they sin big. When a member loves, they love big. When a member holds a grudge, or hatred, or conceives a ridiculous absorbing passion or hobby, they go all the way. When a member feeds his heart with bitterness and rage, it consumes him. I know. It happens to me too… But when a family member falls in love with his God, it is always with a passion that borders on insane obsession.

Dad’s family takes pride in calling themselves rednecks. Make no mistake though, Dad did not harbor any of the redneck racial prejudice but he was completely soaked in the redneck commitment to a titanic work ethic and never say die attitude.  In short, they are Texans! My family on dads’ side are of the stock that engage in those awful feuds in the hills of the Appalachian mountains. Blood feuds that pass from generation to generation, children absorbing and taking upon themselves the vengeful irrational hatreds and loves of the Parents.

The other side of this very same coin is the ability to be completely totally loyal unto the death. If I were in a battle I’d want a member of my family by my side. I know my brother and I would not hesitate to charge an enemy machine gun nest with a twenty-two pistol and a bow and arrow if ordered to. The level of commitment that potentially exists in us is nearly infinite. But there is that ‘other’ side, the side that leads to darkness and an unrelenting rage. Several members of Dad’s family carried grudges with them all the way to the grave where only then as they gained entrance into the pearly gates through the grace and forgiveness of God did they finally lay them down.

Every single child of Frank and Eva White at one point or another has served God. One of Dad’s Brothers, went astray off and on throughout his life, a sheep of the Lord’s who roamed the fields ragged edges rather than staying close to the shepherd, at Gramma’s eighty second birthday said it all… We were all sitting in a big circle telling stories and telling Gramma how much she meant to us when He said.


“This woman right here whipped my little butt raw many times, she loved me and showed me right from wrong from my cradle. I may have not followed the right way too well in my life but… I’ve always known right from wrong. I’ve always believed Jesus is real and loves me. I’ve ALWAYS known when I was doing wrong.” I believe that when Uncle Frank said this he was expressing the truth of the proverb that says. “Train up a child in the way he should go and even when he is old he will not depart from it.” He may depart from doing right, but he won’t be able to depart from knowing whether or not what he is doing is right or wrong.

I myself have still never fully forgiven Uncle Frank for when he was teaching me to fish when I was four years old. Dad hated fishing and didn’t take me much. I was and am the only Child of Bill White that suffers from that particular affliction. Uncle Frank and I we weren’t catching anything, at last I hooked a big Bass, the only fish of the day and he began yelling at me how to land it. Since I wasn’t doing it right he snatched my pole from me and landed my fish!!!

(How did I get off on that memory? I must need to forgive him…)

We carried on this tradition of family Commitment in the nursing home. Lynn, Mom and Wendy and I sang loudly to Dad. In beautifully pre-blended family harmonies we sang and prayed and wept, and laughed our way through Monday afternoon. Loudly… The staff at Gracelen terrace gave us permission to do whatever it took and even gave us a key to the employee lounge and the employee shower room. They offered us free food and were constantly asking us if we needed anything. I believe that they would have opened their homes to us if we needed it.

Late Tuesday evening Dad began showing severe signs of deep dehydration. We were very gratified though, that he appeared to be at peace in many other ways. He never showed massive or even minimal grimaces or groaning to suggest he was being tortured or was in extreme or even mild pain. His face continued to reflect a peaceful experience, and there was a sense of peace and joy and love surrounding his bed. I was amazed that there could exist such an alchemy of these qualities. Grief, Peace, Overwhelming Love, Joy, Frustration, tenderness and about a hundred more that are nameless all mixed together to become an alloy that was rare and precious…

It had been nearly a hundred degrees all day Sunday and Monday and he hadn’t been able to eat or drink a thing. The decision to not aid him with feeding tubes and intravenous measures had long been made and we believed and still do that letting him slip away was the right an godly decision. He was developing some purple mottling on his lower legs and feet that the nurses’ d said were characteristic signs of near death. Sunday and Monday I Drank what seemed like fifty full containers of bottled water.


I was so thirsty in that heat. I think at least ten of the bottles leaked out though my tear ducts so I just kept refilling my bottle and downing another. And there he was, wasting away like a plum shrinking into a prune. I felt terrible with our decision to continue on like this. I wanted so badly to go get a garden hose and stuff it down his throat and pump water into his stomach but there wasn’t any way we were going to violate his wishes to go naturally and without heroic measures to extend his life.

Monday around three in the afternoon one of the nurses came in and asked us if we would like to move to a bigger room, a private room with a bathroom. It seems that one of the long-term patients needed to go to the hospital for a week. They didn’t say but I was under the impression he needed some minor surgery. They had told him about us and asked him if we could use his private, expensive room while he was gone. He agreed. We began the long process of taking down the hundreds of pictures we had pasted all over his room. We followed the nurses in a grand processional and… They took us to his ‘new room, and I loved this.


His new room was right next to the carpenter’s pile of building material! In that hundred-degree heat we had to keep the window open and they were out there running skill saws and drills, measuring wood and hammering, talking ‘Carpenterese’ not fifteen feet way from Dad’s open window. I went out there. I told those guys, “Hey my Dad’s dying. He’s right there in that room and…” One of the carpenters interrupted me… “We are real sorry to hear that. We’ll try to work as quietly as we can.” I said, “No.


That’s not why I told you that. I WANT you guys to keep working. Please work. I‘d like to ask you to work as loudly as you can! Dad’s a little hard of hearing and he is a carpenter. You guys are musicians today! You are making the very music of his life. He loves the noise you are making. My only request is that if you have to pound a nail four times, pound it three more times for Dad. Dad had an idiosyncrasy of revving his power saw two times before he made his cut. Ring riiing, then BBBBBZZZZAAAAWWWWWWWW!!! Please do that. If you have to yell a measurement, yell it as loud as you can. I think it’s awesome that you guys are here today and I think it’s a godsend they just moved us to this room.”

I told them about Dad’s illness and how he was going very soon, Gave them a brief background on Dad’s life and so on. They expressed their condolences and promised to work as loudly as they could. Through the rest of Tuesday afternoon those awesome Carpenters banged away and several times I heard them revving their skill saws twice before they made their cut. I’m sure Dad heard them!

Early in the evening the nursing staff at Gracelen Terrace gently let us know that they all thought he wasn’t going to make it through the night. They said that when a patient gets that mottling on the legs and stops urinating and develops a fever of 102.1 like Dad had Tuesday night it is a sign they have only a few more hours to go. That’s a very odd feeling. Very odd indeed… Your mind can’t accept it. You can’t warp your thinking around such an idea. It’s too alien. Too weird. Intellectually you know its true but emotionally your heart rejects such a ridiculous notion that Bill White! Could die, could cease to be.


This is the man who when confronted with a difficult or near impossible task, would holler at the top of his lungs with a big grin. “It’s root hog or die time Roy!’ And, we always rooted them hogs! Dug our heels in and rooted. Soon we had won. Always… Stupid hogs always lost. Now these total idjit nurses were telling me this? Yet looking at him there so shriveled and wan, down to a literal living skeleton there was no denying that he really, truly, impossibly was going to die, soon, tonight.

The nurses were giving him a sublingual morphine medicine to ease his breathing and help with any pain. You could see the grimaces ease a bit and the breathing relax. They said to us, “You know, at this stage we have A LOT of latitude with the meds. If he looks uncomfortable or shows sings of agitation before the two hours are up (The normal interval up to now) You just give us a call. We’ll give him some more. And if that doesn’t help… We’ll give him some more. We just want to help you as much as we can and in any way we can.” (With a big unsaid Hint, hint, hint)

I looked at that nurse and I said. “You know, I am sure I can speak for all of us here. We appreciate the offer to ease his passing with meds but Dad doesn’t belong to us. We didn’t make him, we didn’t buy him, and we aren’t in control of his destiny. God owns him and loves him and I feel certain that God still has a plan and wants his life to play all the way out until the end. As much as we long to see his suffering ended and wish that he would pass this very minute into infinite peace and joy I still say no. We are under no illusions that he is not dying in a matter of hours but still I cant and wont agree to…take steps to, “Help push him over the threshold.” We want you to make him as comfortable as possible but please, we beg you not to double up on his dosage with out telling us. We want him to go on God’s terms and in God’s time.”

There was a large part of me that wanted to take advantage of this last ditch Euthanasia offer. A Huge part, and I couldn’t see a single thing that would be gained by prolonging his living death and denying him the refuge of the painlessness and Joy of heaven for a miserable few more hours, but found I just couldn’t do it. I could Not ask someone to Kill him. It’s simply wrong. I did say, since Mom was right there, “Mom, if you wanna do this, I’ll step aside and wont say a thing or condemn you or ever bring it up again, you are his wife but for my part I beg of you to let time and God take his time. Mom totally agreed with me (I really didn’t at all expect her to disagree with me. During the course of Dad’s illness we have talked about ‘mercy killing’ a few times. People with his disease are prime candidates for the Oregon Assisted suicide law.

If you only take into account human wisdom and human reasoning, assisted suicide makes a lot of sense for people whose illnesses reduce them to living skeletons like Dad was. Thinking humanly and with this world alone in mind it seems like the right thing to do and if we would have let the nurses… ‘Dope him up so much that he passed quickly and quietly, I’m sure we would have spent much time telling ourselves and each other, “We did the right thing, the merciful thing, the wise thing… I’m sure God was behind our decision… ” and so on… But there would have always been a lingering question, “Did we do right by him? Is there a stain on our spirits?”

We refused their offer. And I’m not trying to say anything bad about the excellent nursing staff at Gracelen for extending it. They did it in such a way that we wouldn’t be able to accuse them of directly making the offer. No one spelled it out in black and white and maybe I was misinterpreting their motives anyway. Even so, I’m so glad we didn’t. If I’m ever listening to a talk radio station host discussing Euthanasia for the dying, I could be a guest speaker, an advocate for always choosing life over death no matter how it looks from our human perspective. God ALWAYS has a plan and can use even a last breath itself to teach his lessons and paint his masterpieces. in Epehesians chapter two it says,

“We are his workmanship, created in Christ Jesus for good works which God has prepared beforehand for us to do.” As a master artist chooses when his painting or sculpture is finally finished and at last lay’s down his brush or chisel, so does the Lord choose the moment we are finally done. God is not limited by our illness and pain from putting the last touches on the canvas of our lives. To the last moment he works with our grief and pain and love to bring beauty from ashes and the oil of joy for mourning.

Back to Tuesday night and the death signs growing on Dad’s body. Purple knees, mottled legs, cold feet, blood pressure of sixty over forty, temp of 102.1, no more urine, his kidneys shutting down and all his blood slowly becoming toxic…

Since this was the last night Dad would be alive Mom, Wendy, Lynn, Royal (Lynn’s husband, One of Dads best friends, of course Dad had dozens of best friends) and I decided to sit up all night with him and wait for the reaper to call.

Around 11:00 or so Mom decided to call one of Dad’s old friends and let him speak to him on her cell phone. Up to that time Dad had been frequently drifting awake, then back asleep (or at least had his eyes closed, whether or not he was conscious it was sometimes hard to tell… When he woke he would look around a little but there was a look of long suffering despair and hopelessness in his eyes most of the time. Hhhhmmmm…


Maybe not hopelessness but a listlessness. A lack of Zeal and sparkle that up until the last three years had ALWAYS been a part of his being. Bill White’s eyes were always dancing. Now as he spoke with Everett Cade, his eyes woke up again! Everett, interestingly enough, was one of the people who had mentored him into a deeper intimate relationship with God and then had re-baptized Dad again when he was in his mid fifty’s or so. Everett spoke to Dad he opened his eyes, then stared up at the corner of the room with a look of wonder in his eyes. Just like a newborn baby his gaze was fixed on the corner above his bed. His eyes began to glow with an incomprehensible wonder.


I would bet my life he was seeing something up there. He had long since passed the point where he could talk or even move anything except his eyes. Remember the nurses had told us he was not going to last the night… We would try and get his attention of that point in the corner and his eyes would barley flicker toward us, then return back to that corner. What was he seeing? A portal into heaven? An Angel? Jesus himself? What? Oh the mystery! The wonder!


The incredibly veiled energy hidden from our mortal eyes. The Bible says no man can see the face of God and live. Perhaps at that stage since Dad wasn’t going to live much longer he was permitted a precious hour or two gazing upon the face of God manifested on the stained and tired nursing home ceiling! Whatever it was, it was compelling to him. All of us kept peering vainly at the corner and squinching up our eyes, trying to see what he was seeing.

Now Dad had always told me many times that when it came time for him to go he didn’t want us “’bellerin’ and slingin’ snot’” but to be happy and live. So we decided to do just that. We talked it over in the hall and agreed we would tell jokes and sing and pray and so on, that we would talk to Dad as if he could hear us every moment. And I feel certain that he did. So we did. We rejoiced. I can’t describe the strange alchemy that happened. The beautiful, tragic, wonderful, horrible heart wrenchingly peaceful mix of sorrow and joy and laughter and music and prayer that happened that night. The aching, passionate blended harmonies of Amazing grace and dozens of other old hymns.

Aunt Lynn told some of the funniest old family stories. She told us one about how as adults her and her sisters and mother had gone to the store and got tickled about something, then laughed so hard they all Pee’d and gramma made an actual puddle next to the bananas in the produce aisle. She said “And Mother went outside and sat down on the curb just like the Queen of Sheba surveyin’ her Kingdom and waited for us to bring the car around.” Lynn’s delivery was funnier than the story. I wish it was on tape. We all laughed until our stomachs hurt! We held Dad’s hand and prayed and sang and laughed and let the Love of God flow through us.

I’ve never felt such a tender and painful love in my life. The only thing I can compare it to is how I felt about my Son’s when they were newborns in the hospital. I know that I would have instantly died for them, and Dad, if anyone would have threatened them. Love so tender, so painfully tender. I felt as if I were a torch flaring wildly in a high wind, burning so bright and painfully. I wanted to tenderly kiss Dad’s lips. I wanted to give him my own brain. I wanted to do anything! Anything! I would have joyfully agreed to cutting of my arm for him. But there wasn’t anything to do but just be there.

We kept telling him. “We release you Dad. If you want to go to heaven now just go on then.” Then launching into descriptions as flowery and inviting as we could about how heaven was this and that and how he would see his mother and infant son Steve who had died almost fifty years ago. Naming dear friends and relatives who have already gone on and were waiting for him with their party hats on.

Around three in the morning or so the nurses came in to change him and bathe him so Wendy and Lynn and I went into the hall. Mom stayed in the room with Dad. After a few minutes the nurses came out. We let Mom have a minute or so then went in. Mom was VERY upset. She said that Dad had just moved! She said it looked like he was mad and had tried to head butt her. Now he hadn’t moved a muscle in at least twenty hours now. Hadn’t had a thing to drink in that one hundred degree heat for several days.


She told us he had raised his head suddenly from the pillow and lunged at her, sort of staring fiercely at her. She was confused and upset not knowing why he had done this. The very last thing in the world Mom wanted was that Dad would be angry or upset with her! We asked her what she was doing and she said that she was bending closely over him saying stuff about how he was the best husband ever and how much she loves him and all. And then she told him once again how he should just let go and go on home to heaven. Then he lunged.

Suddenly I knew what had just happened. The mistake all of us were making. We were continually telling Dad to go and he was making a conscious choice to stay. He loved laughing and old family stories and was really enjoying our love and laughter and song. I explained this to Mom. I felt then and still feel now that this was a word from God explaining why Dad had lunged at Mom like that. He was sick and tired of us telling him to go when he was making the choice to stay and enjoy the laughter and stories and song.


So he lifted his head and tried to say something like, “Will you knock off this crap about telling me to go? I am choosing to stay!” So I leaned over my father and said, “Dad we are so very sorry. We understand now that you want to stay with us for as long as you can. That you are a little ticked off that we keep trying to send you away to heaven when you love us and are making such a  wonderful choice to stay. We won’t do that again, We know that you know that you are dying and can’t stop it and so we honor your choice to stay with us and we love you for making that choice.”

This was completely consistent with his character to never say quit, or ever give up. The night continued and we kept singing then praying, then laughing. So strange that we could feel joy even then. All through this entire process I am very deeply gratified to say that Dad exhibited many signs of a deep peacefulness in the midst of the struggle. He didn’t grimace much or show hardly any signs of pain. There was a deep sense of Peace that was truly supernatural surrounding his bed.  I feel sure that Angles were keeping us company in those last four or five days. When his breathing became labored the nurses would give him a bit more sublingual morphine and he’d calm down again.

Waiting on death is so odd… You dread and hate it, you feel so helpless and useless, you hate it, yet faced with such immense and totally hopeless suffering you want it to hurry up. It’s the only way out and there’s no stopping its stealthy advance. It’s the ultimate, unbeatable enemy. And we have assurance that one day God will destroy it. Oh how I want to have a front row seat in heaven when God takes death out to the woodpile and annihilates it!

By four in the morning Dad was still ticking along and I was absolutely beat. The nursing staff had been in and out of Dad’s room all night and they looked at his legs, and astonishingly, miraculously, the purple mottling was way better! His temperature had actually fallen and his blood pressure had gone up a few points. They seemed stunned. They said, “We don’t see this happen! No one gets better at this stage of dying. We’ve never seen this!” I feel certain that there had been so much life and laughter and love in his room through the night, that God’s presence and peace, which is life itself, that God’s great joy, which is our strength, had worked on Dad’s body and spirit like a tonic and driven death back a few hours. God’s a great pass blocker! Lynn proclaimed from her own experience of over forty years a nurse that he wasn’t going to die for several more hours so we all decided we needed some sleep.

I was running on maybe five hours of sleep since Saturday night. Lynn and Wendy retreated to the motor home and mom conked out in the recliner next to Dad. I told Mom I’d stay up and watch while she slept a little. I watched, and read a little, and pinched myself and chewed my cheeks and jerked my head off my chest struggling to stay awake. I was determined to let Mom sleep as long as possible. Three hours passed. Mom woke up. I was a zombie. As much as I wanted to hang in there I knew I couldn’t. Sleep was strangling me.


So I let go. With a sense of betrayal almost I decided to go sleep. With the decision came freedom. (How many times does freedom come only after we let go of something we don’t think is possible to let go of?) I realized that it wasn’t essential for me to be there, that I was not his life or his strength, I didn’t have a clue how to guide him through this lunar landscape of death and my own strength and support was so small as to be non existent. I realized I was superfluous, God was God and he was the conductor and stretcher-bearer, I was a spectator only, peripheral. It always cracks me up when I watch a football game on TV and after the game someone says, “We Won! I can’t believe how well we played!”

We…? We…? Like them I was not even on the field. So I humbled myself and let go. In this freedom I slept from seven thirty or so until eleven. I was so tired that I rolled off the couch in the motor home and landed on the floor without waking up. I woke as refreshed as if I had slept seven hours.



Dad was still sipping in air. I took a badly needed shower and returned to his room. The carpenter s were working on the roof right above his room, I loved it! They were up there banging away and a few times they kept time with their tools while we sent some of Dad’s favorite old hymns. Great guys and we owe them more than we can pay for the gifts they kept giving us of pounding loudly and revving up there power tools.

Several times Dad began to chain stoke and we thought he was going.

‘Chain stoking’ apparently is a pattern of breathing typical of dying patients. Breathing becomes rapid and shallow, then the diaphragm flutters and stops. You think its over as the patient doesn’t take another breath then they gasp suddenly and breathe very rapidly for a few seconds until their breathing returns to a shallow rapid pace again. Around noon my brother Budd called and said he was able to get off work and was going to be there around three thirty. Budd is the manager at a garbage company and had to stay at work.


This week they were extremely shorthanded and the rest of the management team was on vacation leaving him to hold down the fort. He badly wanted to be there with us but that stinking work ethic Dad hammered into us, and the fact that the job simply would not have gotten done without him compelled him to go to work that week. I’m just a courier at FedEx, a gopher and I have the freedom to be the one calling in and sticking my manager with an impossible work load if I’m not there. He had to take up the slack and go out in a truck to pick up two routes both days and was working twelve to fifteen hours a day and more.

We let Dad know that Budd was coming and if he wanted to wait he was going to be there in three or four hours. Typically Dad made his choice based on his commitment to family, stopped chain stoking and set himself to wait until Budd arrived.

I did an internet search last night on what a patient experienced at this stage of death and found some interesting results, some comforting results. It seems that letting a patient go without water does not increase their suffering.

This from a reputable medical website.

“If the patient is close to dying, neither food nor hydration is necessary for comfort. Nor will food help the patient to be stronger or to delay death. The best medical knowledge indicates that artificial feeding and hydration increase the patient’s discomfort and suffering, and shorten life. Artificial feeding can cause increased breathing problems and may lead to pneumonia. Artificial hydration can worsen swelling and increase any pain due to inflammation. The discontinuation of hydration does not lead to immediate death. Starvation and dehydration reduce pain and are therefore associated with a more comfortable death.”

                                      Here’s more…

“Family members and friends often do not understand that loss of appetite near death is nearly universal, and dying people are rarely hungry. Near the end of life, loss of appetite does not distress the dying person, although it may greatly concern loved ones. Coaxed or forced nutrition rarely increases a dying person’s weight and may cause the person greater distress. Artificial feeding and hydration through tubes or intravenously usually does not prolong life and often worsens symptoms such as shortness of breath. Thirst is much more successfully managed by allowing sips of liquids or by keeping the dying person’s mouth moist with liquids or sprays intended for this purpose or even with a moistened cloth.”

                                           And lastly…

“Zerwekh, a clinical coordinator of the Hospice of Seattle, observed that giving fluids and interfering with the natural course of dehydration can cause acute discomfort to the patient near death and emotional distress to the family. He commented that if the kidneys have not shut down, the fluids can sharply increase the flow of urine. If patients are extremely weak, have lost bladder control, or are in a coma, this increase may necessitate insertion of a catheter. The fluids also significantly increase gastrointestinal fluids, which is a major problem for patients whose vomiting is difficult to control… Intravenous fluids also tend to increase respiratory secretions, making it more difficult for patients to catch their breath or cough, and suction may be required. Fluids can also cause a flare up of oedema and ascites and expand the oedema layer around tumours, aggravating symptoms, particularly pain.”

At the time I didn’t know these things, that fluid increases discomfort and so on and was only determined to hang in there with him and Mom and Wendy and Lynn and stay close to him no matter what the cost to myself emotionally.

Early afternoon my Cousin Kathy brought some food. I was not remotely interested in food but politely accepted a small piece of roast chicken. She had brought a feast of chicken and potato salad and chocolate truffles and ice tea and I don’t remember what all. I ate a bite of chicken and suddenly was ravenously hungry. Thank you Kathy! Food is such an affirmation of joy and life at such times. It’s no wonder that at every funeral there is food.

As the afternoon wore on my sister Wendy was near the end of her rope emotionally and was only able to spend a few minutes at a time in Dad’s room. She would stay, then leave, ten minutes later she would be back in for twenty minutes, and then leave for another ten. I knew she was hurting badly but there wasn’t anything I could do for her. There isn’t anything anyone can do for someone in a situation like ours. Once when Wendy had been gone for a while she called me on her cell and asked if Dad was still alive. I told her he was the same and she said, “I’ll be right in.”


When she came in she bent over Dad’s bed and said something like, “Daddy it’s Wendy, your baby girl. I love you and my heart is breaking. I think I know how you feel. All day I’ve been wanting to be in here with you but another part of me is hurting so much I cant stand it. I have been feeling my heart tear in two with a desire to be here and a dread of it. I realized that you must be feeling something like this. A desire to be here with us and a desire to go home to heaven and a fear of dying also…” I was watching Dad’s face as she was saying this in his ear, his head was turned a little to one side and he did not have the strength left to move at all, she couldn’t see his face, and Dad got a tear in his eye again as she spoke to him showing that he was still aware and hearing us all. I nearly broke down sobbing and had to leave the room so I missed the rest of what Wendy said but it was very special and significantly healing for Wendy.

She told me a few days later that she had just had a spiritual experience in the park. She wondered if angels had ministered her to. She told me she felt such a dark weight on her spirit all day and wanted to just hitchhike away from the entire scene there at the nursing home. Yet she could not leave. She wanted so badly to stay with her daddy yet it was so painful and the pressure was building driving her from his room, then drawing her back again like a moth to a flame. She told me she lay down on her back in the park so full of conflict and ‘saw’ or sensed a glitter in the air above her. Wendy does not see visions or go off on super spiritual tangents ever. She is not one of these… ‘Wooowooo Christians.’ Her Faith is simple, sincere and down to earth.


She said that this glitter seemed to descend upon her and she saw some ‘floaters’ (her words) in the air above her. The glitter and floaters (she became almost inarticulately as she tried to describe these ‘floaters’ here) descended on her and her heart’s pain eased as if a dry cool hand was laid on her fevered brow. At that very moment she said she heard a rattling and squeaking and looked up to see an old man on an ancient bicycle riding through the park. An old antique Scwhinn with those great old curves in the frame and a basket rattling away on the front. A bike just like the many that we’ve seen Dad ride though out his life. This old man had on denim cut offs and an old t-shirt and silly fishing hat just like Dad used to wear on all his rides.

Dad used to take us to the dump when we were kids. What a treasure trove the dump was. I miss ‘the dump.’ Now when you go to the dump you throw your trash into a pit and guys with bulldozers scoop it up into trucks to be taken and buried in landfills. It’s almost clinical. Way too clean and organized. Back then a dump was a hillside and you simply drove way out on a dirt road up to the edge and flung your trash over, eventually filling up a ravine. We used to go to get stuff, not dump stuff. It was a delight to walk around on all that garbage finding cool stuff. Kites and Frisbees and swollen comic books, flat footballs that only needed a patch or two and perfectly decent hammers with only half of the claw missing, Hot Wheels toy cars and tracks and pocket knives. Flies and birds and my brother and sister and I yelling, “HEY! LOOK AT THIS!” Treasure in other words.

Dad made all our early bicycles from broken bikes abandoned at the dump. A handlebar from a Schwinn and a seat from a Huffy, a tire and a chain from a broken tandem and an even smaller back tire from a girl’s bike. Our bikes all sat at weird angles to the ground and had bizarre and lumpy welds and duct tape all over, holding them together. Rusty pieces and shiny pieces married and sometimes two by fours and wire held our bikes together. No one had bikes like us. Bill White cobbled up creations that were… “Jack High And Bull Strong!” One of his favorite expressions… He had hundreds of colorful sayings…


As kids we’d ride as a family down dust roads since they couldn’t afford gravel in Potter Valley California, and a squeakier, rattlinger, rustier, happier group of cyclists you’ll never meet. Dad rode one of his own creations and his were just as awful as ours. No, “I’ll get a good bike for me but the kids can make do” mentality for him! Its not that he didn’t want to buy us new bikes, in those days at Potter Valley Mom had not yet began teaching school since she was taking care of us kids and Dad didn’t make hardly any money as a teacher back then so the ‘dump’ trips were of necessity not choice. I’m sure he would rather have gotten us brand new cool Sting Rays with those studly banana seats, (How my heart burned as a boy with desire for one of those shiny ‘objects de art!’) but the free red necked creations he came up with were it. We had to either ride them… Or walk… Reminds me of an old joke Dad used to tell. Mom would roll her eyes in disgust every single time he would trot out this old broken down Nag of a jest.

“There was a city slicker lost out in the desert slowly starving to death. Finally he finds a bar way out in the sticks with nothing around for miles. He staggers into the bar and says to the bartender, “Man I’m starving to death. Do ya have anything to eat here? I’m desperate.” The bartender nods at two big barrels in the corner. “We got all kinds of food. Those barrels over there are both full. One of em is full of Salted herring, the other mustard.” The city slicker says, “But man I hate Salted Herring!” Then the bartender says, “Well shoot man, help yourself to the mustard!” And Dad would roar with laughter while Mom shook her head in rue…

Anyway as kids we rode bikes slathered in salted herring and mustard.

Back to Wendy’s Angels… Wendy told me she saw an old man riding a bike like that through the park after her heart was miraculously comforted by the glittering floaters. She said he looked over at her and grinned real big, riding ramrod straight upright like Dad always did, to the disgust of my brother Budd who loves cycling and racing and who dreams of racing in the tour de France with Lance Armstrong all hunched over his handlebars in a perfect aerodynamic racing crouch to slip though the wind easily. Bud was always trying to get Dad to bend over his bars so he could ride faster and more efficiently but For Dad cycling was not about going fast, it was about the looking, and the discovery and the other people he was riding with.

He used to love riding cycle Oregon and didn’t miss a year for at least ten years. Cycle Oregon is an organized weeklong ride that circles through the state staying to back roads and small towns. The riders cover between sixty and a hundred miles each day with a huge support team providing food and water and hauling the riders tents and luggage from town to town. Over two thousand people ride it every year. I rode it with him one year but don’t like to go as slow as he does. You could always spot Dad from a half mile away, sitting tall in the saddle.


He was the guy with the ragged cut off jeans and faded t-shirt. Among all the expensive stylized bike shorts and jerseys and multi thousand dollar bikes. The first few years he rode an old girls mountain bike with the handlebars turned straight up so he could sit foursquare straight on his bike. He usually had a t-shirt or a dishrag tucked up into his helmet to keep the sun off the back of his neck, and rode shirtless much of the time, his grizzly gray chest hair accenting perfectly the hard leather wing tip shoes he wore for years as work shoes/cycling shoes/hiking shoes/church shoes… etc.

Eventually he caved in and bought a used Cannondale road bike that he immediately customized with aero handlebars mounted upside down so he didn’t have to crouch low as he rode. He wouldn’t dream of using such useless inventions like clip less pedals or camelback water systems. Sweat wicking jerseys and wireless speedometers were irrelevant to him. Bud and I bought him a wireless computer that tells you how fast your going, individual trip length, average speed, total miles ridden, and will order you a Latte at every coffee bar you pass.


He graciously let us mount it on his bike but it sat completely ignored on his upside down handlebars for years. He avoided the fads and money sucking trappings of cycling as easily as water runs off a ducks back. He just liked to ride his bike. He was well known on the cycle Oregon tours as a joker and he always would sit and talk to anyone on the ride. It didn’t matter to him who someone was, lesbians or liberals, tree huggers or ultra vegetarian environmentalists gravitate to these events and Dad would ride right up to them and disarm them with his simplicity and sincerity. Soon they would be laughing and joking.

Lynn’s husband Royal, who stayed strong with us throughout Dads vigil during those last four days of his life told us this story one night in the nursing home that I hadn’t heard yet. He said they were in the little town of Chimault Oregon (A town with a large Indian population) and a little Indian girl of fourteen or so was stamping the hands of all the cyclists as they entered the chow line. Royal said she stamped his hand and he greeted her warmly then she tried to stamp my Dad’s hand.


Dad drew back his hand fearfully saying, “Will this hurt?” She said no and so he reluctantly put his hand out. As she tried to stamp it again he drew his hand back and said. “I cant stand pain, I’m real sensitive, are you sure it wont hurt?” She fell for his act hook line and sinker and very gently demonstrated on her own hand how lightly she would stamp Dad’s hand. Dad then said… “We’ll… Ok, but be careful” The cute little unsuspecting Indian girl then touched the rubber inked stamp to Dads hand as lightly as a butterfly landing on a flower and Dad let out a West Texas scream like he’d been stuck with a pitchfork! The poor girl leaped three feet in the air and Dad and Royal fell over laughing. Everyone in line laughed and Dad’s grace was such that the girl laughed wholeheartedly as she realized she’d been ‘had.’ After Royal told us this story he looked at Dad lying there helpless and withered on his deathbed and said. “He is the best friend I’ve ever had, he’s closer to me than any of my brothers, and has been a truer friend than I ever hoped to have. I’ll never have another like him.”

Heart wrenching! How much can I stand? An old writer once wrote,

“Beating his breast he thus reproached his heart, ‘Endure, my heart endure, much more have you endured!”

Oops… Rabbit trails again… I’d apologize for drifting so much but why should I? Its not like you are a captive audience. Its not like you have to keep reading this to be polite to me. Writing is so much different than talking to someone. When I talk to someone I have to look for signs of boredom and inattention and then stop talking. When you talk to someone you have to stop rambling and listen. When I write I can ramble all I want making left turns at that Oak tree and an unplanned right at the dump since I’m driving this car and you are the passenger that chooses to stay with me. Hopefully you will see some pretty scenery as I wander, hopefully God will peek out at you from the dark clouds of my failure and sin to shine on you heart and somehow you will recognize a fellow burden bearer.

Maybe you will recognize me, a fellow traveler and pilgrim in this world. A person like yourself that feels some of the same things you feel. The same monotonous frustrations and fears, the same yearning and longing for heaven, the same love. If you are still reading this, and it always amazes me when someone says, “I read every word you wrote! It was wonderful!” You are doing so truly by choice, not because you are trying to be polite to me as I ramble while you try and think of excuses to escape. If you met me at a party and I started to bore you, which I’m almost sure to do, you might say, “Oh Hey,” as if you suddenly remembered.  “I’ve gotta go change the oil in my car, I noticed it just turned three thousand miles yesterday since the last change.” And then run for it overjoyed to at last be away from “that windbag!” When I write I can just chase rabbits and reminisce and if you don’t like it, you can just go to Jiffy Lube or skip ahead a few paragraphs or simply stop reading and go watch TV.


So there!

HROOOM HOM! Says Treebeard, from the Lord Of The Rings, where was I? Lets not be hasty! Oh yes. Wendy and the old man riding his bike in the park…

Wendy saw this old guy healthy and hale riding an old ‘Dad bike’ and she said he was riding straight upright like Dad did. He smiled real big at her just like Dad always did to every stranger and said, “Howdy, Nice day idn’t it?”

Irrationally, Wendy thought Dad had died and this man was an angel come to say goodbye so she immediately called me asking if Dad was still alive. Then she came into his room and talked to him like I described about two thousand words ago.

The result for Wendy…? Freedom. She stayed with us the rest of the afternoon and didn’t leave once. Her hearts pain was eased and she was comforted. Was she visited by Angles? Was her heart somehow cleansed by them working through the power of Jesus Holy Spirit?  I strongly believe she was! The bible says, “Angels are ministering spirits sent to render service to those who will inherit salvation.”

Finally at three thirty or so Budd showed up. I think his arrival was the last thing Dad was waiting for and at that point he began to go down to the clearing at the end of the trail in earnest.

Budd had the incredibly sensible idea of taking Dad outside to die. We were all instantly ashamed we hadn’t thought of this since we knew that Dad did not want to die in a nursing home. The staff at gracelen terrace were more than supportive of this and put him in a moveable daybed wheelchair bed for us. We wheeled him out to a gazebo in the courtyard. Birds were singing and the breeze was stirring. Trees and some of the natural sounds of nature were filtering though the cities noise.

Now I come to the hard part. I want to warn you. Without giving away the plot or anything. He dies soon. This is the hard part to write. And this is the reason I wrote all of this. We got a sign from God when Dad died and I felt I had to write down all this that led up to that moment or I might forget some of it. I want to preserve every memory while its fresh and so I began to write this. I knew it would be long when I started but had no idea it would be this long. Still I feel as if I’ve barley sketched these last few days of Dad’s life. Its three thirty in the morning right now and I need to tackle this when I’m fresh so you are going to have to wait while I sleep.

 I know, the suspense will wear on you but it has to be. After all, I know some of you are slow readers so I’ve been typing as slowly as I can so you can keep up!

Ouch. Word count so far… Twenty thousand six hundred and seventeen words!

Ok. I slept. Thanks for you patience. I’m really almost done now. Only a couple more pages… Ha! We had a Pastor once that used to say, “And in conclusion,” Then preach on for ten minutes, say, “In conclusion” again, and preach on. We usually got at least four “In conclusions” From him every Sunday

His passing.

There we all were outside in the fresh air and Dad was way beyond acknowledging any of our attempts to get him to respond. All he was doing was breathing but he still had his eyes open and was conscious. His breathing was becoming more labored as the afternoon light began to grow golden like it does every early summer evening. I was holding his hand and his pulse was getting weaker and weaker. His blood pressure was pitifully low, sixty over forty. The tragedy and the mystery crept nearer. Around six twenty on the evening of Wednesday, July twentieth the year of our Lord two thousand and five Bill White began to finish dying.

His breath became more labored over a period of five minutes or so. More labored yet weaker at the same time. He began to ‘chain stoke’ and struggle for breath. His rib cage as sharp as a blade against his wasted skin began to tremble and pretty soon he started to stop breathing. Eyes open and gazing intently straight up. I was holding his right hand, that hand that had built so many houses, shook so many hands, Was used over and over again to throw laughing kids up in the air, And I mean fifteen feet up there! That hand that I would have to write for the rest of my life to describe all the things it did. Don’t worry; I’ll leave this alone now.

He still didn’t look as if he was in pain but he looked like he was working harder than I’ve ever seen him work before, his breath coming irregular and the rhythm beginning to break once, twice, again. We all tried to breathe for him wanting to help or somehow support his Herculean efforts.

We all began to say goodbye to him all of us talking at the same time in a babble of loving, grief. Saying things like, “Hug gramma’s neck for me Dad!” And, “Dad we love you so much and will see you again very soon, save a place at Jesus table for me Dad!” “We’ll miss you Bill.” Stuff like that. Cheering him on like he was a runner in the last hundred yards of a marathon, an athlete who had pushed himself way beyond all awareness or need of such encouragement, his desire alone carrying him toward the finish line. We watched in awe as he fought tooth and nail for breath. We were all trying to will him to let go and be at peace at last. Part of me was still hanging on and couldn’t let go. I hope that my clinging to him wasn’t holding him back from his death; maybe if I hadn’t been holding his hand he would have found it easier to go, but I’m not about to start carrying around loads that don’t belong to me! I wont do it!

He would stop breathing and sort of gasp like a fish for a few seconds, then like a car motor stuttering then catching on, would breathe again. Several times we said, “He’s going,” then after 20 seconds or so he would gasp real big and chug a few more breaths. In many ways it was horrible to watch.

After he had ‘come back’ a couple of times Wendy said. “Look at him! He’s still playing ‘gotcha last!’

‘Gotcha last’ was a game Dad was addicted to his entire life. ‘Gotcha last’ had only one rule. Dad won! When a relative or friend visited us Dad would follow them out to their car. After they started their motor Dad would yank the car door open and tag them with a hardened thumb, usually a painful dig in the ribs and holler, “Gotcha last!” at the same time, then sprint wildly laughing like a lunatic in any direction. The victim would then retaliate by giving chase over hill and dale trying to ‘gotcha last’ Dad in return.

If it was one of his brothers the resulting mayhem of ‘gotcha’s’ sometimes went on for an hour. Dad always won, unless you cheated by tagging him, screaming ‘gotcha last’ then slamming your car door and locking it. Dad would then leap onto the cheaters hood and cling to the windshield wipers. Normal human beings would then stop their car and laugh and let Dad ‘Gotcha last’ them in admitted defeat and then they would leave. If the cheater who had tagged Dad then locked their car door was a blood relative it was not so. The maniac brother or relative accelerated down the driveway and into the road usually flinging his car up on two wheels making the corner in an attempt to shake Dad off the car. Dad clung like a burr and usually rolled off the hood only after the driver had reached the speed of forty or so. Dad would then roll along in the ditch and finish up unhurt and laughing. He always considered a ‘gotcha last’ windshield wiper ride a win.

Amazingly no one was ever killed or even maimed for life during this game. Dad would sometimes sneak several blocks down the road and hide behind a tree at a stop sign. Just as his chosen victim began to feel safe he would leap out with his patented Bill White West Texas yell and scare the living doodoo out of the poor relative deafening them with a ‘gotcha last’ yell and a hard carpenters dig in the ribs.

He loved that game.

When Wendy said that… We laughed! I was stunned that we were able to laugh like that in the very face and presence of death! If you had been there, if you had known my Dad, I guarantee you would have laughed too!

He came back again after not breathing for what seemed like an hour. Budd said, “That was forty seconds by my watch.” Then he said, “You know death’s gonna take him but dad’s taking a huge chunk out of his Ass first!”

Again we laughed! How is it possible to laugh when the grim reaper is swinging his scythe?

He stopped breathing, then… He came back again!

We all realized that Dad was dying just as he lived. Without ever giving up or admitting defeat! He was Dead, he knew it, we knew it and God knew it yet he was still clinging to life and hope. So he ‘stole’ five to seven minutes of life away from Death as his indomitable spirit stood tall and refused to die!

Budd then said as this truly ghastly yet beautiful death was going down.

“You know… In a weird way I’m proud of him!”

We laughed again.

It was the perfect thing to say at that moment because it defined what I was feeling and pushed the horror of the unknown, the mystery, the alien evil of death away a bit. Dad was denying death! Defying death for as long as he could. Whenever anyone pushed him. He pushed back and he was still pushing. Death is the last enemy. Death is an alien force in the universe. A reality that God never meant to be.

Death is the wages of sin and God never intended originally that his children should sin and then die. Being God I am sure he knew the choice we would make so he made redemption in Jesus possible. The bible says ‘Jesus was slain, BEFORE the foundation of the earth,’ but death wasn’t built into the earth. Death is not a part of the apparatus of our lives like birth is. We have no mechanism, no ability to deal with death in any kind of rational way at all. It stalks us all our lives and we hide and whimper and read horror novels and pray and live in the shadow of its wings all of our days and no matter how universal we know it is we still cant cope with it. Here it was, beating the life out of Dad, yet like a champion he wasn’t going down easy.

I’ve heard many stories about people who have been with their loved ones while they die. Usually they go like this. “So then Gram/Uncle/Dad/Mom/Sis just drew in one last big breath, then let it out completely and they were gone in peace.”

Not Bill White! Oh no! No the man who held the Tule Lake High School pole vaulting record for the last fifty two years! Not the man who… I could list time after time where he accomplished the near impossible through shear obstinate ‘red necked persistence.

Finally, after maybe seven or eight big gaps in his breathing, his struggles grew weaker and weaker and finally drew to a close. His mouth stopped gasping and his eyes grew blank. Death had finally won, Dad’s face finally relaxed. We were all murmuring goodbyes and I said, still holding his hand, “He’s really gone this time.”

Then it happened! At that very moment one of the carpenters working on the roof oblivious to what was going on under the gazebo forty yards away Yelled… “Coming up!”

Budd said, “Did you hear that? He just said coming up!” We were stunned as we realized God’s timing. For a moment that old carpenters voice rang like a herald into heaven and announced to all Dad’s waiting family and friends and angels. “He’s coming up! Bill whites ascending to heaven! Get ready up there!” It was so cool!

God is so good to have timed that so perfectly! It was like something a Hollywood writer would put into a movie, but far better because this was real. We were all comforted so much by that sign from God.

Coincidence you say? We went and told the carpenter what had happened. He was handing up the last sheet of metal to finish the roofing job and was telling the guys on the roof it was… ‘Coming up!’ Just as Dads life was finished the job was finished. I personally would love to know the odds of that happening ‘by accident’ at that very moment. What… A million to one? A billion? No. That was a gift from God precious and rare to our family, a tribute from the Lord. A commentary to end a life well lived. The man yelled ‘coming up,’ just as God yelled, “Come on up Bill… Well done good and faithful servant, enter into the joy that’s been prepared for you!” (Oh I’m typing through my tears of joy right now)

In this world when a mother labors a baby out the baby itself erases the anguish of birth. But so sadly in this world when God labors a newborn Son or daughter at last into heaven we don’t see the baby and miss the joy of the new indestructible life that’s just been created. We obviously can’t see the new Bill White resurrected from the dead and given his brand new Heavenly body. First Corinthians fifteen says, “It is sown a perishable body, it is raised imperishable, it is sown in dishonor, it is raised in glory; it is sown in weakness, it is raised in power; it is sown a natural body, it is raised a spiritual body.”

We began to rejoice and weep at the same moment. I knew Mom was already on the gentle difficult path of healing though mourning when I touched her shoulder as she hugged Dad’s old body and was weeping. She said, “I think I’m crying out of relief  more than grief right now.” After the first initial spine chilling stun began to wear off we began encouraging each other immediately by saying things like, “Dad’s Hugging Stevie right now. (A child Mom and Dad lost to spinal bifida over forty five years ago)…

“Dad’s laughing and shouting ‘Powder River! And ‘remember the Alamo!’ right now.” Every awards ceremony or graduation, every public acknowledgement of any accomplishment a son or daughter or granddaughter or niece or nephew ever was at would always be accompanied by one or both of these lion like Roars after their name was called. Picture this, the announcer would say, “Joe smith!” (Polite clapping as Joe got his diploma) then the announcer again, “Roy White” Then me sinking into the stage as I went forward to get my diploma with the roar  ‘Powder River! Remember the Alamo!’ echoing through the auditorium. As I kissed my beautiful bride after the Preacher had finally said I could in my wedding tux that yell assaulted my eardrums. How could he not be treating heaven to more of the same unstoppable shouts of victory?


I envy him so much. He’s at last home. None of us have ever been home before. We’re strangers and aliens on this earth. Now he’s there seeing things and feeling things and experiencing things no one on Earth has ever been able to imagine. It says in the bible, “No eye has seen, and no ear has ever heard what God has prepared for the hearts of those who love him.” Like a Daddy hiding Christmas presents and at last delighting in the child’s wonder and joy and surprise at Christmas, God prepares our presents and yearns for our home coming even more than we do.


He deeply DESIRES us to be in heaven with him! Now Bill White is there, shining and triumphant riding high and untouchable by dementia or fear of grief or pain. God’s own hands have wiped every tear stain and scar from his new spirit and body. My Dad had already risen from the dead and his old sinful nature was left in the grave because of what Christ did on the cross! The gospel is such incredibly good news! Folks, in the long run, death doesn’t win! Sickness and despair are already beaten. Victory and joy are the only true realities in all of existence. They are just “Momentary light afflictions that aren’t even worthy to be compared to the glory to come…”

I’m so thankful, so grateful for such a Dad as Bill White! There was never another like him. He was and is unique in the entire universe. As am I, and each and every single person still reading this. I want you to say out loud, right now, “I am unique and dearly loved by God!” SAY IT! I know some of you didn’t say it…

I’m not ashamed to say that tears are rolling down my face as I type this.

Our loss can be measured but it’s deeper than the oceans and higher than the Mountains. On the flip side of the same coin our gain as Dad shouts and laughs and rejoices and waits in infinite joy for us to one day join him cant be measured for it is an infinitely expanding, never ending gain. I’m sure that he is even now preparing an elaborate practical joke for my own sure and certain entrance into heaven.

Oh Lord! Oh Lord! Striking my breast I thus reproach my heart, Endure my heart endure! Much worse have you endured!”


I’ll stop now…


Lord Jesus come quickly!

Roy White

(dated 8/13/2005)

LBD Loving & Living Inside Disease That Contributed To Robin Williams’ Death

Inside the disease that contributed to Robin Williams’ death.

By HuffPost

Pat Snyder tried 12 doctors over seven years before she found one who could properly treat her husband, John.

John Snyder began experiencing lapses in memory, a change in personality and muscle rigidity in 2000, when he was 61; he’d been suffering from severely disrupted sleep since his 40s.

After diagnostic twists and turns that included suggestions like thyroid issues, low testosterone, depression and blood pressure problems, his 11th doctor finally diagnosed him in 2007 with Lewy body dementia, a progressive brain disease that’s commonly mistaken for Alzheimer’s and Parkinson’s disease.

But then the doctor refused to treat John, saying that he was afraid to make a mistake.

“Some doctors don’t treat it because they don’t know how to treat it,” Pat Snyder told HuffPost from her porch in Forest City, North Carolina.

“That’s part of the dilemma — it’s a very common disease, but it can be very unknown.”

Doctors describe Lewy body dementia as “the most common disease you’ve never heard of,” citing symptoms like visual hallucinations, sleep disorder, muscle rigidity and dementia that are easily mistaken for other conditions.

The National Institutes of Health estimates that more than one million people in the U.S. have LBD;  the Lewy Body Dementia Association pegs it at 1.4 million.

Like Alzheimer’s and Parkinson’s, there is no cure — only treatment — for LBD.

Beloved actor Robin Williams had the disease, though that was only confirmed after his death.

Williams’ widow, Susan, described the LBD as a “nightmare” that eventually took her husband’s life in a recent interview with ABC.

Like John Snyder, Williams reportedly experienced a year of baffling and seemingly unconnected symptoms before his doctors tentatively arrived at a diagnosis for Parkinson’s Disease.

“Her story is our story,” Snyder said. “You’re playing whack-a-mole, getting symptoms you don’t understand [and] you’re going to doctors who don’t understand, don’t diagnose it.

I am thrilled that she has been willing to step out and tell the story and make America more aware of this, because it’s very common.”

“You’re playing whack-a-mole, getting symptoms you don’t understand [and] you’re going to doctors who don’t understand”. Pat Snyder

Thankfully, John’s 12th doctor, Daniel Kaufer of the University of North Carolina School of Medicine, knew exactly how to approach his care.

Because of the treatment regimen Kaufer recommended, the Snyders were able to extend the milder “early” stage of LBD for five years before John’s mind and body began giving way to the more severe aspects of the disease.

Kaufer was different from the other doctors, Snyder said, because he gave the couple hope that certain LBD symptoms could be treated, with the goal of preserving as much of John’s “personhood” as possible for as long as possible.

John died five days ago on Nov. 5, eight years after his diagnosis.

It was precious time he was able to spend with his wife, their two children and four grandsons.

Strange and confusing symptoms

John’s symptoms began in 2000, soon after surgery to remove his thyroid.

Because he’d just had an operation, his doctors chalked some symptoms up to hormone imbalances related to the gland’s removal.

But in retrospect, said Snyder, the symptoms of LBD started long before his surgery — about 20 years before.

Like many people with LBD, John developed REM sleep behavior disorder, a condition in which sleep becomes violent and disruptive.

His sleeping body began acting out the fantastical dreams he was having — like being a pirate in a sword fight on a ship, or a fleeing soldier in a world war — and the sleep-movements would knock him out of bed.

Other times he would laugh in his sleep.

As the disease progressed, John’s body stiffened up, and he began walking with a shuffle.

The highly intelligent, inquisitive trial lawyer started off his days “sharp as a tack” and would end them lost in a foggy confusion, Snyder said.

He started to withdraw from family gatherings, sitting alone in a chair when previously he would have been right in the middle of the party.

The scariest moment for Snyder came when John called police to deal with a bear on their property.

It turned out to be a tree stump.

“That’s when I had a meltdown,” Snyder recalled. “I was like, ‘Oh my goodness, you’re working with these police and telling them you saw a bear, and there’s no bear!'”

This confusing set of symptoms is typical of LBD, explained Dr. Joe Quinn of the Parkinson’s Disease and Movement Disorders program at Oregon Health and Science University.

It’s why doctors and even some brain experts struggle to initially diagnose the disease, named for abnormal packets of protein called Lewy bodies that appear in the brain.

There is no cure, but there is treatment

Because there’s no blood analysis or brain scan to test for the condition, physical confirmation comes only in death, when doctors performing an autopsy analyze slivers of brain under a microscope.

In this way, too, LBD is very similar to Alzheimer’s disease, which is confirmed in autopsy by finding plaques and tangles in the brain, and to Parkinson’s disease, which is confirmed in autopsy by Lewy bodies in the areas of the brain that affect movement.

While a patient lives, however, clinicians are left to sort through a mess of symptoms that might seem like Parkinson’s (muscle rigidity, which Quinn called “Parkinson-ism”) or Alzheimer’s disease (dementia).

“If you have the combination of Parkinson-ism and visual hallucinations, and the person is having trouble thinking clearly, that’s an instance where you make a diagnosis of Lewy body dementia with great confidence”. Dr. Joe Quinn

Quinn sometimes explains LBD symptoms to others as a blend of both diseases: Patients will struggle to move, and may also suffer mentally.

He himself has initially diagnosed patients with Alzheimer’s, only to revise that diagnosis to Lewy body dementia a year later when more symptoms come to light.

One major tell for LBD is visual hallucinations that aren’t caused by medication or pre-existing mental illness.

“If you have the combination of Parkinson-ism and visual hallucinations, and the person is having trouble thinking clearly, that’s an instance where you make a diagnosis of Lewy body dementia with great confidence,” he said.

But for people like John, whose visual hallucinations didn’t come until much later on in life, that Lewy body diagnosis can be a long time coming.

Often, as Snyder discovered, educating doctors about LBD fell to her as the caregiver.

For instance, she had to monitor medications because many doctors didn’t realize that common antipsychotics prescribed for the hallucinations are actually very dangerous for people with LBD.

“It’s just a very complex disease to treat, and there are very medical people who just don’t have an understanding,” she said. “And that causes huge stress for caregivers.”

As John’s disease progressed, Snyder slowly transformed into a de facto expert on the disease.

She did her own research on the brain and figured out how to unlock parts of John’s mind that were slipping away to dementia.

When he started to lose his ability to speak, she learned that parts of the brain that control singing can escape the brain damage from certain diseases.

She had some success drawing John’s words out of him by singing the “Happy Birthday” song, she said. And she worked hard to keep positive and proactive about John’s care, which she credits for the five years he managed to remain suspended in the earliest stages of LBD.

Brain scans could one day provide a more accurate diagnosis

Hope for a better diagnosis process may be on the horizon, said Quinn. Scientists have made progress with PET scans to identify plaques in the brain of a living patient who has Alzheimer’s disease, and Quinn hopes that parallel efforts to create brain scans for Lewy bodies can one day help neurologists diagnose LBD early and with certainty.

Until that day, Snyder hopes that going public with her family’s experience — and the Williams family speaking of theirs — can raise awareness and put the condition front and center for doctors who may encounter this set of puzzling symptoms in a future patient.

In 2012, she self-published a book about her experience, and for a year has moderated an online support group for spousal caregivers of LBD.

Indeed, when HuffPost reached Snyder by phone for this story, John had died only the night before, but she insisted on maintaining the interview to get the word out about LBD.

For now, though, she’s taking a moment to savor the 41 years of marriage she enjoyed with John, and is surrounded by family in their home.

Because she managed to stay so close to her husband throughout the progression of his disease, she was able glimpse moments of his “personhood,” as she called it — jokes, smiles and a “twinkle in his eyes” — to the very end.

“He told me two days ago that he loved me so very much, and he said it so clearly with so much expression,” she said.

“And just so you know, he was one sweet guy, and that showed to the very end.”

Voluntary Assisted Dying One Step Closer Australia

Voluntary assisted dying is now one step closer to becoming a reality in Victoria, after the bill was passed by in the lower house.

After a 24 hour meeting – where MPs had a debate overnight that ran well into Friday morning – the Voluntary Assisted Dying Bill passed 47 votes to 37, after a conscience vote.

The decision came just after 11am on Friday, with the sitting over the bill beginning on Thursday at 9.30am.

The marathon meeting went throughout the night and MPs only took two short 30-minute breaks during the whole session.

“My colleagues and I are very proud,” Premier Daniel Andrews said on the steps of Parliament.

“We have taken a very big step towards giving many, many Victorians the dignity and compassion they have been denied for far too long,” he said.

“This is extraordinary and public life is about getting the big and important things done and this is big and it’s very, very important.”

Those in support of the bill included the majority of Labor MPs two Greens, two independents and a small number of Coalition MPs

However, this isn’t the end of the line for Assisted Dying laws, as the bill now has to be passed by the 40-member Upper House.

It is expected that this will occur in a fortnight.

“We still have a way to go,” said Andrews.

“I don’t take anything for granted there … but this is needed and the time has come to write this into law”.

Should the laws pass, Victoria would be the first state in Australia to offer an assisted dying regime.

It would mean that those who are suffering from “a serious and incurable condition and at the end of their life” will be allowed to seek voluntary euthanasia. However, the law won’t come into effect until 2019.

It is also required that the person is over 18 years of age, a Victorian resident and an Australian citizen.

Only those with decision-making capacity and are at the end stages of their life are qualified for assisted death.

Previously against assisted dying, Andrews views changed following the death of his own father after a long battle with cancer.

Andrews told Fairfax media that he hoped “that this debate is conducted in the spirit of respect. My own conscience tells me that this is the change that needs to be made.”

Health Minister Jill Hennessy is also supporting the bill, with her own personal family tragedy shaping her views – her mother’s life long battle with multiple sclerosis.

Andrews praised Hennessy for championing the bill, while other colleagues congratulated Hennessy for her work guiding the legislation through the lower house.

Euthanasia advocate Andrew Denton was among members of the public in Parliament to watch the vote.

Cold Hard Facts: Life Before Death With Lewy Body Dementia Australia

Trevor Crosby has Lewy Body dementia.

But he wants to show people, that “you can live well with dementia”.

Lewy Body dementia is one of the lesser knows kinds of Dementia, and is also known as DLB.

Abnormal clumps of protein, known as Lewy bodies, develop in the main part of the brain, the cortex, which results in dementia.

Lewy bodies can only be identified by examination of brain tissue after death, so there is no way of testing their presence to confirm a definitive diagnosis.

At Dementia Australia’s “Be the change” Conference, Trevor told his story.

“I was 64 in 2014 when I was initially diagnosed with Lewy Body dementia. I had been a very fit, active contributing member to society,” Trevor said.

“My wife and I ran a farm in rural NSW, along with two other businesses, for more than three decades.”

“I was a long-serving member of a committee that manages water resources in Central NSW, was an active member of my local golf club, serving as President of the club for three years, was a keen supporter of the Primary Club in rural NSW for many years, and much more.”

“Having Jill, my wife, beside me helped tremendously in handling this news. I became strong enough to ask the hard questions, ‘how long do I have to live’, and ‘how many quality years?’”

“The answer didn’t please me, but I now believe it is possible to make changes to your life that can help you to live well while still living with this dreadful disease.”

Trevor then shared a story of the father of one of his friends, Viv – her father died from complications of Lewy Body Dementia by choking on his food.

“He had not been diagnosed till very late in the progression of his disease and the family were unable to afford the proper choices he and they deserved.”

“Antipsychotics had been administered to him in heavy doses and he spent a good time of his last years bed ridden due to Parkinson’s disease, but Lewy Body dementia, was not mentioned.”

Viv’s dad died in a short period of time – he had not been diagnosed early enough.

“No one knew he had Lewy Bodies till it was too late. If Viv and her father had known earlier something could have been done to improve his quality of life he may not have died so quickly.”

“Viv’s dad and her family were not offered options that might have changed his life and care, I am determined to find options that will change mine.”

“Although things have no doubt changed for the better in 10 years we still have a long way to go. Amongst other suggestions my specialist advised me to consider enrolling in the Living with memory loss program with Alzheimer’s NSW, now Dementia Australia.”

“This suggestion was a worthy one which Jill and I followed but I needed more. I was not going down without a fight and it was clear to me I needed to be proactive in making changes in my life that would improve my situation.”

“Almost every part of my life has changed in three short years of living with a Lewy Body dementia diagnosis mostly for the better.”

“Sure, the early big hit momentarily knocked us for six, however, the 156 weeks of rewarding advocacy work with Dementia Australia along with pleasurable, entertaining activities and importantly having family and friends new and old treat me as if it’s “business as usual” allows me to live a fulfilling, meaningful and enjoyable life.”

What Trevor Believes Helped Him “Live Well”

“First acceptance, acceptance that something is wrong and seeking support. I found doing Alzheimer’s Australia NSW’s, now Dementia Australia, Living with Dementia course to be very beneficial.”

“Second getting a diagnosis. I was fortunate to have obtained an early diagnosis after experiencing early cognitive problems, and without an early diagnosis the benefits and the quality of life I have since attained would not have been realised to their potential. I strongly recommend that anyone experiencing cognitive issues get it checked out as soon as possible.”

“The medication I was prescribed by my neurologist has helped lead to clearer thinking, better memory retention, better social ability and more”

“Next, positive thinking which can sometimes be hard, but I believe this and recognition that tomorrow is as far ahead as we need to be, today and tomorrow are what it is all about – has also been a vital component to my ongoing wellbeing.”

“Finally, getting on with life and occupying myself fully with activities I enjoy. This means spending time with my family, engaging in cultural experiences, participating in regular sport and exercise activities and also ongoing Alzheimer’s advocacy work.”

Trevor’s Active Life

“I participate in a wide range of activities, including yoga, cricket, sailing, golf, bridge and dementia advocacy work.”

“I have found yoga to be one of the most valuable activities I’ve experienced in my fight against dementia. An hour of yoga at any level can improve your spirit, your inner feeling of peace, your flexibility and fitness.”

“Yoga brings out the best in me, has introduced me to friendly and compassionate instructors who have focused on my wellbeing and classmates who have provided subtle and sincere support.”

“In the words of my yoga instructor, ‘Trevor has built physical strength and flexibility during this time, but also strength of will and resilience’.”

“‘I know him to be benefiting from the support of the group setting, and the breath and movement practices which anchor the spirit into the body, and calm the mind, allowing him to arrive at acceptance of the changes in his world.”

“At 67 years of age, I am still playing cricket! I have a lifelong passion for the sport and continue to enjoy participating. I recently attended a reunion of my 1970 under 23s comp-winning side, and am the only member still playing.”

“I have signed up for the Primary Club Oldies Cricket Teams – this will be my 59th season, hopefully one where my contribution to the team will continue to be a positive one.”

“I also crew weekly on good friend’s 10m yacht, Sydney Harbour is the backdrop and all six of us on board never cease wondering how lucky we are soaking up the atmosphere that this spectacular harbour exudes.”

“What sailing does for me is it gives me self-confidence, improves co-ordination and balance and introduces me to a new circle of friends.”

“Three times a week, I play golf. While out on the course I feel happy, sharing the camaraderie of fellow golfers.”

“I don’t think about my diagnosis, unless there is a joke to be made about dementia and my ability to score correctly.”

“I decided to also exercise my mind whenever possible. So just over two years ago, with the desire to give my brain the opportunity to broaden its reach and have an activity that doesn’t require physical involvement (in case I am less mobile in later years), I began taking Bridge lessons and playing socially, which I have found to be both stimulating and fun. Dementia and bridge: who’d have thought!”

“On the scale of activities that have helped revive my quality of life so far, spending time with my family rate number one – they have been able to absorb the bad news and at the same time keep a cheerful facade.”

“An enormous plus – when I think family, I think happy and this thought process helps keeps out negative feelings.”

“My message today is that like me you can be the change by living well and changing the face of dementia in the broader community…you can make the change to find the support you need and to do the things you enjoy that make your life meaningful and enjoyable.”

“Let me remind everyone with a quote from Richard Gere ‘none of us are getting out of here alive so live the day as if it was your last’.”

Beware: Dementia Patients Can Wander Away From Home


Wandering is one of the many new behaviors that occur in dementia patients. I hear sometimes,

“My mom won’t ever wander; I am with her 24/7.”

The thing about wandering is, if your loved one hasn’t done this, what you should say is,

“They haven’t done it yet.”

My take on this is the person who is wandering is trying to get somewhere.

They could be trying to get away from where they are, or they could be trying to get somewhere that is familiar to them.

The bottom line is they want to feel safe. If they do not feel safe where they are, the chances of them wandering increase tenfold at any given moment.

Making sure they feel safe and secure is the key. The slightest thing can trigger a sense of danger in a dementia patient.

The volume on the TV being too loud, the sound of a train in the middle of the night, an alarm going off, the phone ringing—all of these are things we hear on a daily basis.

But when you have dementia, any of these could easily startle you.

All you want to do is get away from that noise.

When a patient is found after they have been wandering, you will often hear them say they were trying to get home.

Their idea of home is not what you would think.

It could be their childhood home that they lived in long before you were even born.

Which you, as their child, may have no idea where it is located.

It could be in an entirely different city.

Or, by some miracle, they could find the home they were looking for and not even recognize it.

I tell people all the time, never take for granted what your loved one says or does. They could complain of hunger and have just finished a meal. They could say they can’t sleep, but have just woken up from a full night’s rest.

They could tell you that someone or something is following them. You know all of these things are not correct, but to them, they are real as rain.

And if you do not do something to ease their fear, they will do what they can to escape their current situation and get to a safe place.

Remember, if your loved one has never wandered, you need to think, “They haven’t wandered yet.”

In my EMS and law enforcement careers, I have seen numerous patients just walk out of a facility that was deemed secure.

Dementia patients who want to get away from where they are get this idea in their head, and that is the only thing that matters to them.

They spend their entire day and night wanting to get out, whether it is their own home or a facility.

And, chances are, they will get out. I have heard of families putting locks on doors to keep their loved ones in. This in itself is dangerous.

If, God forbid, there was a fire, and in the chaos you are incapacitated by smoke inhalation, there is no way your loved one could get out of the house on their own.

I’m not a big fan of locking anyone in a house. However, I do recommend alarms.

You can buy alarms for when they get out of bed, when they open certain doors in the house, or even for every door.

You can purchase motion detectors to alert the caregiver of movement in the house during the night.

But, like I said, every facility I have been in for dementia patients has a security system of some sort. Most have locked doors that require a code to enter or leave.

All the other exits have alarms on them, yet patients still manage to get out.

They do because of one reason: human error.

Someone may have left a door ajar, or didn’t arm a door with the proper code. Or, for whatever reason, someone just wasn’t paying attention.

As a caregiver, you are required to watch your loved one 24/7.

They only need a moment to be out of your eyesight and be gone.

Has your child ever slipped away from you in a crowded environment, even if just for a moment?

That sick feeling you get in the pit of your stomach is exactly what it feels like when an elder you love wanders off.

If they do wander off, hopefully it’s not in the dead of winter, or they don’t have access to a vehicle.

I once located a man in his eighties who had crashed his truck through a steel gate into a private golf course at about three in the morning.

When I located him, he was still driving the truck around in circles.

He couldn’t (or didn’t know how to) stop it.

Thankfully, we got the vehicle stopped and attended to him.

He was from a town over 400 miles away and had been missing for more than eight hours.

To say his family was relieved was an understatement.

But the man himself was in a state of shock.

He knew no one, had no idea where he was, had no idea where he came from, and was visibly shaken by the whole ordeal.

It took his family five hours to get to the hospital where he was taken, and he was still in such a state he didn’t recognize them when they arrived.

This happens all the time with dementia patients.

It should never happen, but it does.

Devise a plan, and then have another for backup.

Take a picture of your loved one every morning with what they are wearing so, if by chance they do get out, you will have exactly what they look like and what they are wearing ready for the police instead of trying to rack your brain for answers.

A cell phone picture is perfect. It can be taken in a matter of seconds, but could end up saving your loved one’s life.

And, if your loved one should wander, call 911 immediately. Don’t waste precious time looking for them yourself. Get the authorities involved as soon as you can.

They have the necessary resources, technology and man power to search for them. If you look for your loved one for thirty minutes on your own, that is thirty minutes that they have to be out, traveling farther, and who knows in what direction.

Call 911 immediately. If they are found in the basement later, or just in the backyard, wherever, it’s better to have the authorities looking with you than to bring them in an hour after your loved one came up missing.

Take this wandering thing seriously.

It can be fatal.

And it is always traumatic to the patient and their family members.

Dementia: How to Keep a Wanderer Safe and Indoors USA Style

How to Keep a Wanderer Safe and Indoors

Personal Testimonies 

“When it comes to keeping someone from wandering outside (eloping), you can lock the doors to the house as long as you are home in the event of an emergency.

It is not cruel to lock the doors.

You are also saving the neighbors and police some worry.

If the police are summoned frequently, they may insist that you find some way to keep your loved one inside and supervised so they will be safe.” –JessieBelle

“Get deadbolt door locks, take the keys out of them at night, and keep the keys on a chain around your neck, that way if your loved one is wandering at night, they cannot get out of the house.

If there is a fire, you do not have to look for the keys in the middle of a crisis, because they are right there around your neck. If all the deadbolts are keyed the same, you only need to wear one key.” –LyricaLady

“Child locks and alarms work well and are reasonably priced. Also, try installing a lock at the bottom of the door or at the top. Your loved one may not think to look in those places to unlock the door.” –jycaregiver

“We cut Mom’s bedroom door in half and locked the bottom half from the outside. (Like Mr. Ed’s door, if you remember that show.) She even tried going out a window once, so beware. I bought those clear window insulator kits that you put on with a hair dryer to cover the windows (about $7 at Walmart).

You can also insert a piece of wood from top of window to top of the casing so it won’t go up. We also bought a keypad doorknob for the door that leads down to the basement. You have to enter 2 numbers to get the door open. The online site I used was called Go Keyless.

The keypad was about $100, but so worth every penny. Now that we have grandchildren, the added safety and security is even better! Fortunately, wandering is just a stage, so hang in there.” –Reverseroles

“I finally secured the doors to the point that my mom could not open them on her own. I covered our doorknobs with plastic covers designed to keep toddlers from opening doors.

Eventually, I had to secure those with duct tape wrapped around and around, as she could get the knob covers off when she was really intent on leaving. I also had to add internal hardware, like sliding locks and chained door guards, and these had to be installed above her reach.” –Catjohn22

“Installing a regular wooden door that looks like a continuation of the wall can help deter wandering.

Paint it the same color as the surrounding wall (even if you have to add some sort of pattern for continuity) to disguise the door.

You can keep this door locked, and it will not encourage access to certain areas of the house or the outdoors. It works in institutional environments, so it should work at home if it’s done well.” –LivingWell

“I did a very simple thing that is effective for preventing my mom from trying to get outside. I picked up a pack of Safety 1st Grip N’ Twist doorknob covers (3 to a pack for $3 at Walmart).

They glow in the dark, and I have a heck of a time opening the doors myself now unless I grip them just right. I shudder at the thought of Mom wandering anywhere by herself, and these certainly work for us.” –murphyclm

“Another option would be a safety latch, much like what you find on the inside of a hotel door. The problem with this is, in an emergency, you would have to remove the latch. Not to mention, if first responders try to get in, they will break the door or a window to gain access to the area.

So, it’s not the safest thing. If you try to keep your loved one in their room at night, maybe provide a mini fridge with snacks and water or juice so they don’t have to leave the room for those items. I’m not sure if someone with dementia would be able to adapt to the fridge or not, though.” –Grandma1954

“A lady I cleaned for had a half-door installed across her basement stairway. She said her husband would stand there shaking and pulling it to try and get downstairs, so I would be apprehensive about installing anything that isn’t very sturdy.

I also want to warn anyone who may be considering installing a gate or door at the top of a stairway to NEVER have the door swing into the stairway. I’ve heard too many instances when an improperly latched door has led to tragic falls.

The same goes for gates. If there is even the remotest possibility that your loved one will climb over it or push it off the supports (and anything not screwed into studs can be rattled loose), then it is better to do without.

I have also read that sometimes a black mat placed in front of a doorway will keep dementia patients from crossing the threshold because they perceive it to be a hole in the ground.

I don’t know anyone who has tried it, though. There are probably some good technological solutions, too… Perhaps try some type of motion sensor alarm that will sound when a loved one approaches off-limit areas?” –Cwillie

“Be sure to install safety gates at stairways and door openings. Hardware-mounted gates are the best and most commonly used.

A gate at the top of a staircase is the most critical one that you will install and MUST be hardware mounted. It needs to be drilled and attached to both sides of the gate location. Look for a product with an easy-to-use, one-handed operation.

Gates installed at the top of the stairs should have a special safety bracket or mechanism that prevents them from opening out over the stairs.

Most often, stairway gates are attached with the hinged side to the wall and the latch side to the post. An automatic lock upon shutting can reduce the chance of ‘user error,’ too.

Some models are self-latching, which means you don’t have to turn around to close the gate. Simply swing the gate behind you and it will latch and lock itself.

Sometimes the gate at the bottom of the stairs will need to be installed one or two steps up to achieve a cleaner, more secure install, since many staircases have radius banisters that make a bottom-step install more difficult.” –Llamalover47

“My dad had to be kept in his bedroom during the night so I could sleep. He had a commode, mini fridge and TV in his room. All stairways (basement/attic/outdoor) were kept locked off at all times, and we installed a kitchen door to keep him away from the stove, microwave and washing machine.

In our case, a baby gate would have been easily opened or knocked over. When my dad fixated on a doorway, it had to be sturdy or he was going through. We also took the bathroom door off its hinges and installed a curtain for privacy so he couldn’t lock himself in.” –Soloinny

“My concern with the double locks is, what if you had to get out in a hurry because of an emergency, fire, gas leak, etc.? It seems that door alarms would be safer, and maybe the tone would frighten your loved one and act as a kind of deterrent. Maybe it could eventually stop the wandering behavior, but it depends on the patient.” –Gladimhere

“Memory care facilities and nursing homes don’t lock people in their rooms; they lock the outside doors. They mostly control wandering with bed alarms, motion sensors, and locked or alarmed exit doors. You’re better off locking the problematic areas of the house (entrances/exits, knives, chemicals, garage, etc.) than locking the person down.” –Appaloosa

“Some people here mentioned double-sided locks, which mean doors can only be locked/unlocked with a key. The problem with this is, if there’s a fire and you’re panicking, will you remember to get/find the key and be able to get your loved one and yourself out while in a panic?

My dad put extra sliding locks on all doors—one sliding lock on top (I have to tiptoe to reach it) and one on the way bottom (bend down to reach it). It worked, but it made Mom very, very angry that she couldn’t go out during the evenings.

I have read how some people have installed some kind of beam that alerts the caregiver when their loved one gets up and passes through their bedroom door. T

here are all kinds of alerts that you can install in the bedroom and extra locks for doors leading outside of the house. Locking the bedroom door sounds dangerous to me, but that’s just my point of view.” –Bookluvr

Setting Boundaries Dementia Related Relationships

When the family member we are trying to care for is impossible to please, long-standing family dynamics are often to blame.

Caring for elders is hard enough when they are just confused or demanding because of advanced age, loss of independence and mounting health issues.

When they are truly abusive, caregivers should not expect to embark on this journey without emotional and practical supports.

In those cases, we often need the help of professionals to find a solution, like palliative care for symptom relief or a memory care unit that is better equipped to handle a dementia patient’s difficult behaviors.

Many members of Aging Care’s Caregiver Forum talk about caring for parents who have abused them for a lifetime. Aging, and the problems that come with it, often makes this abuse more intense. A frail parent may no longer be able to lash out physically, but that loss of control sometimes makes their tongue an even stronger weapon.

Yet, it’s natural for adult children to love their parents and even want to care for them as they age. The little kid inside of us most likely still wants our parents’ approval. When we can’t get that, even as adults, it hurts.

If you had a difficult childhood and troubled relationship into adulthood, how do you care for abusive parents without incurring additional harm? How do you persevere in spite of their ongoing criticism and abuse?

Caregiving with Personal Boundaries

Many counselors would suggest “detaching with love.” Detaching is a method of setting boundaries to protect yourself by creating emotional distance from the actions of another. By giving up the notion that you can control an abusive person’s behavior, you stop allowing them to control your emotions and behaviors. It is hard and takes practice, but detaching works for many.

When you acknowledge that you can’t control or satisfy a toxic individual, you stop trying to do so. Conversely, the person who has been pushing your buttons starts to see that these triggers don’t work anymore. Detaching with love means that you affirm your love for the person, but also make it clear that you will no longer tolerate being treated with cruelty or disrespect.

Arranging Care while Setting Boundaries

You must be clear and steadfast when setting these boundaries.

If your loved one continues to complain and act out just to test your resolve or manipulate you, tell them you will make other arrangements for their care until you both cool off.

Detaching from someone you provide care for is significantly more complicated than other situations. Because you cannot simply walk away without potentially endangering their welfare, this takes some planning, especially if they require a high level of care.

You may need to arrange for adult day care, in-home care services or even a temporary stay at a long-term care facility. Once you have back-up care in place, you can call and check in on an as-needed basis.

The main objective is not to waver. If you tell this person that you are setting boundaries, arranging for outside help and leaving them for a time, then do it.

A marked absence and clear commitment to your own wellbeing may be enough of a reality check for your loved one, but in some cases, their behavior is too deeply ingrained. You may need regular respite care to get away often enough to see to your own physical and emotional health.

Know When to Remove Yourself from the Caregiving Equation

One thing to be aware of is that this damaging cycle causes many abused children to become abusers themselves.

Put an end to this problem by setting clear boundaries, calling in reinforcements when you need them, and recognizing when it is time to let others take over the caregiving role, either temporarily or permanently.

You don’t want to be a person who “loses it” after enduring life-long hardship.

Returning abuse is never the answer. If you recognize these feelings surfacing in yourself, get help immediately. Stop the cycle by arranging for someone else to take over.

Work out a solution with another family member or a professional caregiver, or consider placement in a long-term care facility. If your situation is truly intolerable and you are reaching your limits, social services or a guardianship organization can step in to ensure your loved one’s safety (and your own).

In severe cases, it is best for a non-family member to be in charge of providing care and making decisions. You can visit and assist as much or as little as you see fit without subjecting yourself to additional mistreatment. This is a difficult step, but in some cases, it’s the only way to protect yourself, get your loved one the care they need and end the cycle of abuse.

Seek Counseling for Help with Past and Present Abuse

Therapy can help enormously if you find yourself in this situation. Toughing it out or placing your parent in the care of others and then feeling guilty about it won’t help, but discovering the roots of these problems may.

A professional can help you work through past trauma and learn to handle current and future issues in a healthy manner. They can also guide you through the detachment process.

Following through on your personal boundaries could help you weather caregiving in a safe and sane manner or enable you to step back and let someone else take over these responsibilities.

Caring for elders is hard enough when they are just cranky or demanding because of advanced age, loss of independence and mounting health issues. When they are truly abusive, caregivers should not expect to embark on this journey without emotional and practical supports.

How to Handle Dementia Related Aggressive Offensive Bad Abusive Behaviors

“They are driving me crazy!”

This phrase is uttered (or screamed) by family members everywhere who are caring for elderly loved ones.

Caregivers often have to deal with unusual, unruly and embarrassing behavior from their care recipients.

The Caregiver Forum is filled with stories of demanding elderly parents, personality changes, hallucinations, and temper tantrums.

In some cases, this is the way some seniors have always acted, but these behaviors can also indicate serious developments in a person’s health, like progressing dementia, depression or a urinary tract infection.

We’ve compiled the top 10 “bad” behaviors that elders exhibit, some of the most common mental and physical causes, and tips for coping with them.

1. Elderly Rage, Anger and Yelling

Age and illness can intensify longstanding personality traits in some unpleasant ways. For example, an irritable person may frequently become enraged, or an impatient person may become demanding and impossible to please. Unfortunately, the primary caregiver is often an angry elder’s main target.

Coping Tip

Try to identify the root cause of their anger. The aging process is not easy. It can spark resentment in seniors who are living with chronic pain, losing friends, experiencing memory issues, and all of the other undignified things that come with getting older.

Alzheimer’s disease and other forms of dementia can also cause these behaviors. With dementia, it is important to remember that the patient doesn’t have full control over their words or actions. As a caregiver, the best thing you can do is not take it personally. Focus on the positive, ignore the negative and take a break from caregiving when you can by finding respite. Get some fresh air, do something you love or call a friend.

Elders often reserve their worst behavior for those they are closest to, like family members. In this case, it may be beneficial to hire in-home care or consider adult day care. Their bad behavior might not surface in front of a stranger, and you get a much-need break.


2. Caring for those with Abusive Behaviors

Occasionally, seniors will lash out at the person who is making the biggest effort to take care of them. Left unchecked, the anger and frustration described above can become so severe that it results in abuse of the caregiver. Stories of mental, emotional, even physical abuse to family members providing care are all too common. In some cases, abuse may stem from a mental illness, such as narcissistic and borderline personality disorders. In other situations, parents turn on the adult child who is showing the most love because they feel safe enough to do so. They don’t consciously abuse this son or daughter, but they lash out to vent frustration.

Coping Tip

Try explaining how their behavior makes you feel. Unfortunately, many caregivers don’t get very far by talking. If the abuse is verbal or emotional, try to make them realize all that you do for them by not doing it for a while. Bring in outside help if your loved one requires supervision and assistance in order to be safe in your absence. Removing yourself from the situation may drive home the point that abusive behavior will not be tolerated. Your loved one may come away from the experience with renewed appreciation for what you do. In the meantime, you’ll get some valuable respite time.

If physical abuse is the issue, then seek professional help. This may consist of a phone call to the authorities, attending counselling, or permanently handing over your loved one’s care to professional caregivers or a long-term care facility.


3. Elders who Refuse to Shower

The issue of elders refusing to take showers, change their clothes and take care of personal hygiene is far more common than most people think. It’s also very frustrating for caregivers.
Sometimes depression is the cause, and another factor could be control. As people age, they lose more and more control over their lives, but one thing they generally can control is dressing and showers. The more you nag them to take a bath and put on fresh clothes, the more they resist.

A decreased sense of sight and smell may be contributing to the problem as well. Our senses dull as we age, so seniors may not detect their own body odor or see how soiled their clothes are. If memory issues are involved, they may lose track of time and not realize how long it’s been since they showered. Lastly, fear and discomfort can play a huge role in their resistance. Many older individuals develop a fear of falling and slipping in the tub, and they are often too embarrassed to ask for help.

Coping Tip

The first step is to determine why they have stopped bathing. If depression is the cause, speak with their doctor. Therapy and medications can help. If modesty is a problem and the elder doesn’t want a family member helping them bathe, they may be open to having a professional caregiver provide bathing assistance.

If they are afraid of the water (or slipping in the tub), there are many types of shower chairs, showerheads and other products that can help. If the person has dementia and is afraid of bathing, then you must be gentle. Don’t insist on a full shower or bath. Begin with a small request, like asking if you can simply wipe off their face. As they get used to this, you can gradually add cleaning other parts of the body. Be sure to chat with them during the process and let them know what you are doing as you go.

Do your best to keep your parent clean, but keep your expectations realistic. Too much nagging is counter-productive, and at the end of the day, you may have to lower your standards and adapt your definition of cleanliness.


4. Senior Swearing, Offensive Language and Inappropriate Comments

When a senior suddenly begins spouting the worst profanities, using offensive language or saying inappropriate things, family members are often baffled as to why and what they can do about it.

Caregivers have shared countless stories in the forum about elders who used to be mild-mannered and proper suddenly cursing at them or calling them insulting names. When it happens in public, it’s embarrassing, and when it happens in private, it’s hurtful.

Coping Tip

When this behavior is out of character for an elder, the start of Alzheimer’s or another form of dementia is a likely cause. If the onset is quite sudden, a urinary tract infection (UTI) is another common culprit. UTIs present very differently in seniors, and symptoms include behavioral changes like agitation.

But if dementia is not an issue and a senior is just plain crass, how do you deal with swearing and rudeness? You can try to set firm ground rules for them. Make it perfectly clear that you will not tolerate such language, especially in public settings. A little bit of guilt may be effective in getting them to realize that their behavior is unacceptable and offensive to other people. Try something like “Dad, if Mom was here right now, she would be appalled by your language,” or “You would never want your grandchildren to hear you speaking like that, would you?”

When a swearing tirade sets in, another technique is to use distraction. Their fit may end once they’re focused on something else. Try bringing up happy times from the old days. Elders love to reminisce, and prompting them to change the subject and tap into their long-term memory will likely cause them to forget about whatever it is that set them off. If none of these suggestions work, your best bet is to learn not to take this behavior personally. Back off, disappear and wait for it to blow over.


5. Paranoia and Hallucinations in the Elderly

Paranoia and hallucinations in the elderly can take many forms. Seniors may accuse family members of stealing, see people and things that aren’t there, or believe someone is trying to harm them. These behaviors can be especially difficult for caregivers to witness and try to remedy.

Coping Tip

Hallucinations and delusions in elders are serious warning signs of a physical or mental problem. Keep track of what your loved one is experiencing and discuss it with their doctor as soon as possible. This behavior could be something as simple as be a side effect of a medication they are taking, or it could point to a UTI.

Oftentimes, paranoia and hallucinations are associated with Alzheimer’s disease or dementia. When this is the case, caregiving experts seem to agree that the best thing to do is just relax and go with the flow. Do not, try to talk them out of a delusion. Validation is a good coping technique, because what the elder is seeing, hearing or experiencing is very real to them. Convincing them otherwise is fruitless. Acknowledge the senior’s concerns and perception of reality in a soothing voice. If they are scared or agitated, assure them that they are safe and you will help them through experience.


6. Seniors with Strange Obsessions

Saving tissues, worrying if it’s time to take their meds, constantly picking at their skin, and hypochondria, are all types of obsessive behaviors that can disrupt the daily lives of seniors and their caregivers. Obsessions are sometimes related to an addictive personality, or a history of obsessive-compulsive disorder (OCD).

Coping Tip

View your parent’s obsessive-compulsive behaviors as a symptom, not a character flaw. Obsessive behavior can be related to a number of disorders, including anxiety, depression, dementia, or other neurological issues. It is important to discuss a senior’s symptoms with their doctor, especially if they are interfering with their happiness and daily routines. Therapy and/or medication may be the answer.

Watch for things that trigger your parent’s obsessive behavior. If their compulsions seem to be related to a specific event or activity, avoid it as much as possible. Do not participate in their obsessions. If you have helped with rituals in the past, change this pattern immediately. Try to find ways to minimize or eliminate triggers if possible. For example, dry, itchy skin may feed a senior’s compulsion to pick and scratch. Keeping their skin moisturized and covered with clothing may help minimize the issue. Distraction and redirection can also be helpful.


7. Hoarding and Aging Adults

When a senior hoards (acquires and fails to throw out a large number of items), once again, the onset of Alzheimer’s or dementia could be at fault. Someone’s pre-Alzheimer’s personality may trigger increased hoarding behavior at the onset of the disease.

For example, an elderly parent who was already anxious about aging and the possibility of outliving their resources, may begin to collect things and save money due to their feeling overwhelmed by what lies ahead. Others hold on to items because they fear their memories will be lost without tangible evidence of the past.

Coping Tip

You can try to reason with them and even talk about items to throw out or give away. Creating a memory box or an organizational method for keeping “special things” may help tame the chaos. With extreme hoarders, medication and family counseling could make a big difference in how you cope. In some cases, you may need help from adult protective services (APS) if the senior’s behavior has led to unsafe or unsanitary living conditions.


8. Refusing to Let Outside Caregivers into The House

It is an important milestone when family caregivers decide to hire in-home care for their loved ones, but this plan is often derailed when seniors refuse to let the caregivers in. Other elders will let the professionals in only to tell them that they are fired!

Coping Tip

The presence of an outsider suggests to the elder that their family can’t (or doesn’t want to) take care of them. It also magnifies the extent of their needs and makes them feel vulnerable. Work to understand your loved one’s reasons for resisting. This could be fear, embarrassment, resentment, or some mix of the three. Talk to them about their feelings, and work together to find solutions that everyone can live with. For example, if Mom hates the thought of letting a stranger into her home, arrange for her to meet the professional caregiver at the home care company’s office or at a café for coffee first.

Ask your loved one to simply give home care a try on a temporary basis. Instead of immediately introducing full days of hands-on care, it may help to have someone come in for one day a week for a few hours just to do light housekeeping, like vacuuming and washing clothes. Experienced home care companies know how to handle situations like this, so consult them when necessary. Once the senior gets used to having someone in the house and establishes trust with a caregiver, they will be more comfortable with accepting additional help.


9. Senior Over-Spending or Extreme Frugality

Many caregivers are pulling out their hair over their loved ones’ spending habits. Some seniors rack up debt, gamble, or send money to charities and scammers, while others refuse to spend a single penny on things they actually need—like medications and long-term care.

Money is already a bit of a taboo topic of discussion, but questioning a parent’s ability to handle their finances complicates things even further. This issue is directly tied to their power and independence. When seniors lose independence in some areas, they often try to make up for this loss in another way. Spending (or saving) is one of those ways.

Coping Tip

If you choose to address this issue, seniors will usually insist there is no problem. It’s their money and they can spend it as they choose. They do have a right to manage their own finances, but if they are not competent (or you have suspicions of cognitive decline), it is crucial to tackle this head on. For many seniors, mismanaging money is one of the first signs of dementia.

When carelessness or excessive penny pinching is the culprit, bringing in a third party can help. This could be a financial adviser, a spiritual leader, a friend—anyone whose opinion the senior will respect. For over-spenders, present the total amount spent on their shopping sprees. Sometimes they need to see the effects of their behavior in black and white terms.

On the other end of the spectrum, money hoarders’ behaviors may be the result of having lived through the Great Depression and other hardships. Seniors who once feared being able to pay bills and take care of their family likely don’t want to see a family member go through financial hardships on their behalf either. Showing them the out-of-pocket expenses regarding their care that you are paying might help open their eyes.

%d bloggers like this: