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Sunday, February 14, 2010

Dementia

We all face aging with a little bit of trepidation, especially my Baby Boomer generation that on the whole has come to expect good health, active living and longevity. In fact anything less seems like failure to the Western health-obsessed generation. Many people now can be treated successfully for illnesses that in the past would have felled them in their prime, diseases like cancer, heart disease, diabetes, and a range of others including Parkinson's Disease. So many of us can look forward to a wonderful and active golden age, skiing into our futures, actively involved in our communities, enjoying our grandchildren long into our dotage. On the whole, compared to our parents' generation and those before them the quality of our lives approaching old age I think has improved.

But many of us have been able to see the flip side of longevity for some, a descent into what we fear is the dark hole of dementia, all the more likely the longer we live. Both my parents lived into their eighties, relatively fit until the last few years of their lives. Dad, who considered all medical professionals as "quacks", refused to see a doctor for most of his life except for the occasional relief from earwax clogging. In his final years, though, his refusal to see a doctor for more serious developments was taken away from him as Mom, in a state of panic one day about him, called me up asking for help. I quickly called a medical friend who kindly offered to make a home visit which started Dad on a course of treatment for prostate cancer. Dad lived well with the disease for a while, accepting relatively low-intervention treatments, but when his disease spread into the bones, he was adamant that he would go no further with treatment and left this world earlier than he might have with treatment. Through it all, though, except for a few moments during a couple of infections, his thinking was clear even right up to the end when he could no longer articulate his thoughts but his eyes had such clarity and understanding we all knew he was completely with us.

Mom, on the other hand, was not so clear headed having developed dementia later in life. She was one of those patients (like my sister who has also survived an awe-inspiring number of serious health problems) who, without modern medical intervention, would probably not have lived past her sixties. Instead she lived to be 85. Mom had cancers (note - plural), an aneurism, gall bladder and serious kidney issues and "women's problems", for all of which she stalwartly sought medical intervention, some of it very brutal, requiring weeks of hospitalization and some arguably leading to other future ailments. So she lived a long and active life but in the final stages was overcome by her dementia.

Now for some, that descent into dementia is a horribly frightening experience and the delusions they suffer can be terrifying. Fortunately modern medicines can successfully relieve many of those terrible symptoms. Mom had to be medicated for extreme anxiety around the time Dad died which was also near the time when she had to be transferred from her retirement home to a nursing home because of her increased need for care (who wouldn't be anxious under such circumstances?). But apart from all that she was relatively happy in her senility. What was so wonderful about her dementia was her conviction that she was busily employed in her old job in the British Civil Service during the war. And she dusted. While she could still move about, she dusted everything everyday, several times a day in fact. Dad whispered to me one day rather confidentially, not long before he was hospitalized for the last time, that it was the best damned gift he'd ever bought her because while she was furiously dusting she wasn't pestering him with her repeated questions every five minutes. And the house was spotless.

There was the day in the nursing home during the summer Olympics that blared out of her television all day long. When I arrived for a visit she angrily asked me why she had been allowed to miss her race that day. She was especially upset because in her mind she was convinced she could have won!

Another day she bitterly complained about her "boss", the poor old guy next door who was confined to his wheelchair and led a pretty quiet and innocuous life. According to Mom he was a lazy lay-about, useless too, and she resented having to do ALL the work. On occasion she would call us up and consult on whether we thought she ought to retire yet! In general our answers to her questions humoured her. We only spoke of the "truth" if she was troubled by something, like when she couldn't remember that Dad had died and was worried about his absence. At times like that it seemed the only humane thing to do was to tell her that Dad had died. She would have a little cry each time and then leave the matter alone. Towards the very end of her life when she seemed to be in and out of consciousness she would laugh and talk to Dad as if he were right there with her. I liked to think he was.

Now my poor husband has barely lived into his sixties and could hardly be described as having had a long life but, thanks to drug therapy, he has enjoyed greater and longer freedom with this disease than those who lived with it a generation or more ago. But that prolongation of life brings with it a greater likelihood of dementia. He has flirted with Death more than a few times and has struggled like an Olympic athlete to remain a functioning human being. That primal urge to survive is strong in my husband as it was in my mother and is still in my sister. What keeps them going? I look at all these cases and shake my head in wonder because I think that if I were faced with the same challenges I might just want to check out of this world. But how do we know until we are faced with it? Their survival instinct seems indomitable despite enormous challenges.

But I wonder if the mild to more extreme dementia and/or the impairment in their cognition that my husband, my mother and my sister have been afflicted with, have actually been protection for them. When my husband watches a televised curling competition and asks me with all seriousness what I think his strategy should be for his next move in the game (!), I am struck by how convinced he is of his actual involvement in that game, how much fun he seems to be having. Mom, too, in her conviction of her ability to win an Olympic track event at the ripe age of 84 and to have enough gumption to actually be annoyed that nobody had the good graces to take her to her event. Mom died happily secure in her belief that she was a fully-functioning cognizant human being. I hope when Michael and my sister face their end, whenever that is, they do too, fully convinced that they were active and alert right up to the end. Isn't that how we all want to leave this world?

Bring on the dementia.

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