I have just today, while at work, found your wonderful website on Lewy Body Disease, and have found it to be absolutely compelling reading (particularly the journal), because of the similar diagnosis and illness of our own mother.
Your journal is the most touching, sensitive, and yet forthright, account of the progression of your own mother’s Lewy Body disease. But it is also the most informative and helpful document for us.
Your website will assist us in our attempts to understand this illness, when there is so little information about it available. This understanding will help us in our attempts to get the best possible outcomes for our mother. Thank you.
I am the eldest of four brothers (in our late 40s to mid 50s), and our widowed mother is 82. We all (brothers, wives, children) live in [city], South Australia (except for my twin brother and his family who live in [city]). We are a close-knit family and all keep in touch regularly.
Mum, at her own wish, lives alone in an “independent living unit” within a large church retirement village complex. This complex has tiered care available (including hostel accommodation, nursing home, dementia ward, hospital) if and when the need arises. But since mum’s diagnosis about 18 months ago, we have been really concerned about what is in store for her.
For at least a year before her diagnosis she showed developing signs of unusual behaviour, memory loss, auditory hallucinations, and physical frailty and tremors.
She now has government-subsidised carers calling twice a day to help her with medications, personal hygiene, some household chores, etc., and has meals delivered and a cleaning service. We all visit regularly, and the three local daughters-in-law help particularly with shopping, medical appointments, and lately, her developing incontinence problems.
We pay her bills, but mum is always agonising about attending to her “paper-work”. She was an active, lively, intelligent, musically-talented school-teacher, and later sub-editor. She was loved by many people. Before Dad’s retirement as a farmer many years ago, she helped him run a successful wheat and wool farm in Victoria. Dad was in many ways her quiet “backbone”.
He died in 1987.
The most hurtful thing for me is that she is alone so much of the time. She has a few good female friends who get her out, although this happens increasingly less often, and we visit and take her out when possible. However she walks with great difficulty now, using a walker.
She doesn’t discuss it with me (although we are close), but she does talk with my brothers about going into the nursing home some day. This seems to be the only alternative, as she is close to needing much more hands-on care.
Our fervent wish is that the nursing (and dementia) care will not be unbearable for her. Beautiful new facilities have recently been built for this purpose at the complex, and the care seems to be good. We also happen to be friends with the Director of Nursing there (my wife was a nurse and nursing administrator). There doesn’t appear to be an alternative.
Thank you again for articulating your story, and the issues this illness raises, so well, and for making it available to all.