To be perfectly honest, for me every week is Dementia Awareness Week. As it is I'm sure for anyone who is caring for someone with the disease, or who has lost someone to it.
According to Alzheimer's Australia, in Australia right now 200,000 people have dementia, with new cases diagnosed every day. When you add in all their family members and close friends that's an awful of of people carrying a tremendous burden. Dementia is an insidious but almost invisible plague that has spread into every neighbourhood in the country and around the globe.
There's an excellent article in the New York Times that describes the disease, its symptoms, causes, tests, treatment, prognosis, possible complications and prevention. It begins:
Dementia is a loss of brain function that occurs with certain diseases. Alzheimer's disease is one form of dementia that gradually gets worse over time. It affects memory, thinking, and behavior.
Memory impairment, as well as problems with language, decision-making ability, judgment, and personality, are necessary features for the diagnosis.
That second paragraph describes exactly the arc of my mother's Alzheimer's Disease.
It was an agonising progression for all of us, though lightened by the way in which my father cared for my mother. His loving devotion enabled her to retain some dignity until the end. Although she forgot everything else she never forgot that he was her beloved husband and she his cherished wife. I describe some of this in an article in the current Notebook magazine.
You can read the whole article, uploaded by my clever daughter M, on my website vivienneulman.com
My book, Alzheimer's: A Love Story, contains a full account of the sorrows this disease brought with it, but also of the joy we as a family managed to find in the situation. Although our experience of Alzheimer's was harrowing, and I'd have given anything for it not to have come along, it did bring with it many blessings. Watching my father care for my mother, growing closer as a family, and being able to give my mother a proper farewell were among these.
My advice to anyone who is embarking on this journey is to contact your local Alzheimer's Association, and my advice to governments is to spend more money on Alzheimer's research. The need is urgent.
To those of you currently caring for a loved one with dementia, I wish you strength and courage. You'll need it.
My heart is with you.
I hear you. My uncle visits my grandmother in a nursing home. Sometimes he is her husband, sometimes he is her son. He still visits everyday, as does my mother. And they still love her.
ReplyDeletebeautiful post. my heart is with YOU. xx
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