Thinking about dementia in our elderly

Aug 04 2016 Published by under Uncategorized

I have a friend, seldom seen, with a wonderfully improbable name, who lives in California. She is a pyschologist who worked in what was then called "old-age homes", and now have other names. But its still the same place: where we send/where they go when the elderly in our society can't cope on their own any more.

Some of these places are lovely and supportive, filled with caring staff and activities and wholesome, delicious food. Some are not, and are nursing homes that smell of strong disinfectent, because there is not enough time and not enough staff to clean all the incontent residents. Over the last 10 plus years of taking care, to various degrees, of my parents, I have seen many of these places. When I live in the big city, in the inner city near MRU, I went from time to time to visit people who had lived on my block, people who didn't have either money or family. It broke my heart to be in those places that took Medicare, and see how little that money bought.

My mother was both good and lucky. She saved and saved her whole life, and now has enough money to be in a place that pays the staff more than minimum wage. It smells fresh and clean, and not like disinfectent, or worse, vomit and urine. My mother has almost no motor skills left. She can't walk, let alone stand, she can't feed herself or dress herself or take care of herself in any way. She can indicate likes and dislikes by spitting food out. The people who care for her are kind and gentle and understand that people with dementia are not always nice, but that it is the disease talking.

My friend from California, when her kids were grown and out of the house, decided to stop working with the elderly and go back to her first calling, working with very young, pre-language children (of variable ages). She said to me: the problems are the same, independence, and lack of skill. But, she said, even with the most damaged children, there is hope. Their trajectory is upwards. With the elderly, it is not.

I see my Mom frequently enough that I do not notice all the graduatal changes. Even if I'm gone for a week or so, the course of loss in people with dementia is saw-toothed, up and down, backwards and forwards. But in the now nearly years since I moved to nearly-MRU, and brought her with me, she has lost. There is no language left, and almost all her speech is gone. She doesn't try and tell me jokes in her nonsense, child-babble. She did trying singing a few weeks back. A couple with a electric piano and microphone came to the place she lives and sang songs I remember my mother singing to me when I was a child. My mother sang along to Chattanooga ChooChoo. She tried to do the HokeyPokey. But that was months ago, and she has not done anything like that lately.

What do we as a society do for people like my Mom? It is very clear how little we do for people who were not as smart and lucky and hardworking as my mom, who saved enough to buy the care they need. As my father the economist used to say: there are never enough resources for everything everybody wants. We do not have enough for the children in our society. And one can (and some have) argued that children, and their upward trajectory are more worthy of our resources. Others say that everyone looks out for their own interests and those interests are dictated by stage of life. I am not sure that when I was in my 30s and struggling with family and early career that I would have cared very much at all about the elderly. Certainly all those people opposing Obamacare, let alone Medicare aren't thinking about their own old age.

We ignore the poverty in our midst. We ignore the needs of not only the sad children at the fringe of society, but the people who have handicaps and are disabled. We ignore the elderly,  for whom a visit and a hug mean everything at this point. We want beauty and turn our heads from things we do not perceive as beautiful. And our elderly, with dementia, with no skills or resources to argue for themselves,  the elderly on their downwards trajectory are some of the least beautiful people in our society.

I do not disagree with any person chosing how to spend their personal and earned resources. But I do believe as human beings we must, as part of our humanity, give away some of those resources, be it time, money or energy. Give away with no hope or expectation that something will come back to us because of these gifts we give away. This is not some personal life-long balance sheet for the gifts we received, being born where we were. This is part of what it means to be a human being.

Visiting the elderly with dementia is scary. You can't really argue with them. They insist you are their dead mothers. Or children.  Or their evil dentist (that was last week for me). They have no executive function, and curse like sailors and when you come to visit they tell you  to go to hell. They have clothes with food stains on them, and are more interested in dessert than talking with you. Or they start crying and beg you to take them home, because they are lost and this isn't the Right Place.

But in our incredibly busy lives, our lives fighting to get funded and published and get a job, there are others who are much worse.  Make a 30 minute visit this weekend. No one will know. You won't get any brownie points, a raise, or even recognition. But inside you will know that you've done something good. And someone else, someone else who may not even know, someone else's life will be better.

2 responses so far

  • ecologist says:

    This touched me deeply. Best wishes to you, and to your mother. Thank you for writing this.

  • Lucy says:

    I visited eldery with dementia last year, hoping to make it a weekly visit. I had to stop doing it. I thought that having helped to care for my father through his dementia would make it easier for me to visit these patients. It was the opposite, it transported me back to all the devastating feelings.

    Somehow your post made me smile too. They do curse like sailors!! And love their desserts more than anything!

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