How we coped with Alzheimer’s
by PAUL JANSON
Life is a puzzle. You can’t make the whole without all the pieces—each and every one. That piece of least apparent worth when it’s in its place, is beyond value when taken away. Each one serves a purpose that becomes known only when it’s taken away. Even the most ugly is beautiful when that is the one you are looking for.
Maybe that’s why we make jigsaw puzzles, to learn this lesson: all the pieces are important.
About two years ago my mother-in-law came to live with my wife and I and our two children. She’d become unable to live by herself and she will, without doubt, one day become unable to live even with us. She has advancing Alzheimer’s disease.
This has been a difficult decision for us—as it is for so many who face this disease in their families, and I don’t in any way criticise those who find themselves unable to undertake this task.
It’s difficult particularly for my wife, who must deal with the care and the hurt that comes with caring for her mother who is now rendered far less than she ever thought would be possible. And yet she’s still her mother. Her strength throughout this has been inspirational.
For my part, my mother-in-law never cared much for me, though with advancing illness, she has less recollection of the reasons why. When I was younger I was less than the perfect sonin- law and so there is some justice in her opinion.
She also dislikes our children, which in my opinion is without justification. But that’s how it is, and they’ve learned to live together and that is a good thing. My children have learned, I hope, that one doesn’t discard a person when that person ceases to be useful. I hope they remember that when I am as she is, but as likely as not they won’t.
That is probably how it should be.
We don’t get to choose our fate in this life. As much as we would like to think we’re in full control, we aren’t and probably never will be.
My mother-in-law always swore she would take cyanide if she became as she is now. She was a chemist and had the opportunity to put it aside for her use. In one of the ironic twists in all this, her disease makes it impossible for her to understand that this is what she had been saving it for. She no longer has any, of course. Her family took that precaution early on in the process.
One of the “kindnesses” of this disease is that those who have it are less aware of the problem than their family and friends. She doesn’t seem to know there’s anything wrong except that her family no longer allows her to drive, live alone or skip meals—or paying her bills. She always seems to be convinced she’s just finished a meal and has already paid all her bills.
If only this could be true. I could afford to miss the meals and as for the bills . . .
But maybe I don’t really want that if the rest comes with it.
She likes our dogs best of all of us. She remembers their names, which can be annoying since she doesn’t remember her family’s names. We actually had to get two more dogs, a total of three now, so that there were enough to go around. The children will now take a dog to her room for her. They know that when she goes to sleep the dog will always come back downstairs to find out what’s going on. They are “loaning” it to her. It works well.
The dogs get to sleep on her bed, something that isn’t allowed them anywhere else. It’s actually the bed my wife and I used to use, so the dogs must feel truly triumphant.
We sleep in a room under the house now, which has given us a degree of freedom and privacy we never had before. I may never move upstairs. It all works out.
We take my mother-in-law out to meals as often as time and money allows. She behaves fairly well in restaurants, better than the children sometimes, but she has the habit of ordering only a dessert. I’m not sure why this bothers people (family or restaurant people), but it does. It has taken a long time for us to realise that one ought to order what one wants to eat.
That’s not really such a radical idea. That’s why restaurants have menus after all, so you can choose what you want.
She has a tendency to turn off lights at home, even when they’re in use. On one occasion she turned off the lights in a restaurant as we were leaving. We live in a small town and the restaurant people were less upset than I was. Besides, it was late and the restaurant was almost empty.
On another occasion she managed to get a restaurant to give her a book. This restaurant had a library motif, with bookcases on the walls stacked with old books. She has always liked to read and naturally took down one of the books and began to read it.
By the time we were ready to leave, she believed it was her book and none of us could convince her otherwise. I decided to let the maitre’d deal with this, as his authority would convince her to leave it even if she didn’t believe him either.
As we were climbing the stairs (we had been seated in the basement of the restaurant) the maitre’d was standing at the top of the stairs escorting a couple down.
They all waited, and as my mother-in-law reached the top step she tripped. I don’t think a more dramatic performance could possibly have been given. The “fall” took a full 20 or 30 seconds to accomplish. As she slowly crumbled she turned so she finally came to rest on her back at the top of the stairs (at the feet on the maitre’d) with her arms spread out and the book beside her.
I don’t know how the place could possibly turn a profit with the number of employees that appeared to help her. I’m not sure what they did when no-one was falling on the stairs.
She was unhurt and as she was helped to her feet she asked for “her book” and of course the book was hers “as a gift”! Now if I had been thinking a little more quickly myself we could probably have gotten our meal for free too.
I don’t think she “fell” with any forethought, but I’m not sure she didn’t.
Having my mother-in-law live with us has required that my wife and I take on less work outside our home and spend more time at home. The children usually like that and we can do things with them that would have been impossible before she came to stay with us.
We’ve also started doing things we might not otherwise have done for ourselves. My wife has taken on several educational projects and I have started writing—and having great fun doing it. Had it not been for my mother-in-law, I might never have gotten around to it—so, in a way, I have her to thank for it.
This brings me back to the beginning: we don’t know what or who will be most valuable to us. What may appear to be a burden at first may in truth be an opportunity we haven’t appreciated yet. We just have to stop fighting the situation, accept it and make the most of it.
We didn’t get along, but I wouldn’t wish her ill. Still if she must be ill, this is the best that could have come of it. I’m writing, my wife is teaching, our children get our attention and I hope the realisation of why we have their grandmother living with us.
And she has comfort in her time of need.
That’s not a bad result for what is still a terrible disease. One thing does bother me though: my mother-in-law is beginning to like my writing. Is she getting worse or am I? That question may not be worth answering.
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