by Liz Taylor
Q: Sadly, my wife Margaret, age 81, has dementia. Our doctor has her on medications that work extremely well to keep her more alert – she plays scrabble several times a week, enjoys her favorite TV programs and will interject a comment occasionally. We’ve been married 59 years, and the family support I might require is close at hand – our daughter lives next door. I care for Margaret, which seems to promote a feeling of stability for her. Her disposition has always been soft and quiet, with no signs of anger or reluctance.
I want to know what I can or should do during Margaret’s “quiet periods” – at church when she smiles and acknowledges a greeting or at a family dinner. You and I, when we are alone, have thoughts going through our minds constantly – does Margaret? Should I leave her to her thoughts or gently try to draw them out? I want her to be happy and at peace with her life as it is now.
A: Readers will appreciate, as I did, the simple grace of this letter, and its profound sense of dignity, commitment and love.
The most haunting question it raises for me is: where does the brain go when it has dementia? The answer is as cruel as the disease: to the best of our knowledge, it sits on idle, going nowhere.
To understand this alien notion, it helps to compare healthy brain tissue with that of a brain that had Alzheimer’s. I remember my own amazed reaction when a neurologist showed me laboratory slides of both – the healthy brain tissue was plump, the demented brain was shriveled, having lost millions of brain cells. The longer someone has dementia, the more shriveled it becomes.
There’s simply less “there” there.
So, does Margaret have thoughts like you and me when she’s not interacting with the world? Probably not. Her “quiet periods” are neither good nor bad; they just are. Unless she shows agitation or anger, it’s fine for her family to try to draw her into conversations – or not. What’s important to know is that doing nothing is not a failure. Margaret will show when she’s unhappy, and it appears she’s quite comfortable.
Given the long, inexorably slow debilitation that comes with this disease, we know Margaret’s condition will change and worsen over time. Caring for someone with dementia is one of the hardest things any of us will ever do. What this man – and others who care for someone with a dementing illness (such as Alzheimer’s, stroke and Parkinson’s) – must do is prepare for the next stage of the disease. For resources that can help, contact the Alzheimer’s Association in Seattle at 206-363-5500, toll free at 800-848-7097 or online at www.alzwa.org.