Lewy Body Dementia Testimonies

Lewy Body Journal

My husband passed away in July of this year after 39 months of 24/7 home care aides, many trips to doctors and many medications.

When he was first diagnosed I scanned the Internet for information and found your Journal. I printed them all and have them in a large note book which was required reading for all of the caregivers.

I was fortunate to have good caregivers on the most part.

There were a few I had to part ways with because they just didn’t understand the differences between LBD and other dementias.

Treatment has to be given lovingly and if it is not the tide will turn in an instant. The biggest challenge with caring for a person with LBD is the great extremes of behavior. The fluctuations from day to day and during any one day are trying to any caregiver.

I was fortunate that we had taken out long term care insurance back in the 90’s. If we had not done that I would not have been able to have kept him at home.

He received far better care at home and it was easier on the family. We have two children who both live near and four grandchildren who could continue to visit as often as possible and it was important to his well being.

When I started to read your stories in the Journal I could see threads of behavior that crossed through many of the stories. It was frightening to read what was to come but I had to face reality to be ready for it.

He had triple by-pass surgery in 2004 and for awhile he was fit and felt good. But in 2006 we started to see the beginning signs of what was to be diagnosed as LEWY BODY DEMENTIA in 2009.

As I read more about LBD I realized that there were many other signs that it was coming. The symptoms mentioned that are associated with LBD were there:

  • Violent and acting out dreams, this was true for many years before any other signs.
  • Constipation
  • Difficulty in keeping track of sequences (poor multi-tasking)
  • Difficulty with spatial relationships

Those were the early signs which I helped to shield from others to protect him. That’s what wives do.

But when the hallucinations and falls started we had a problem. One time he could not get up and walk on his own. I called the ambulance and he went to the hospital for 10 days while my children and I prepared our “hospital” room at home for him.

We organized a schedule and caregivers started round the clock. I could not handle him alone. During the 39 months, I was hospitalized in 2011 and again in 2012 with some serious problems. But because I had a good built in system at home all went well.

I am on the monthly e-mailing list for the LBD Association (lbda.org) and I try to educate others about the disease. I also donated his brain to the Harvard Brain Bank to help with further research on the brain.

Thank you for being there for us.