I have come to think of Alzheimer’s Disease as a cat burglar, a stealthy thief with infinite patience. He doesn’t steal all your memory at once – just slips in and takes a little bit here and a little bit there and then disappears for a while. You start to think you are safe. But, back he comes, to take another piece of the precious self . And all that goes with that.
The neurologists explained to me six years ago that my husband was in the early stage of Alzheimer’s. (This, by the way, should not be confused with early onset Alzheimers – a fairly rare type that attacks people under 65).
Two tell me has lost “executive function” which sounds to me like gobbledygook, doctor-speak. He’s not in the running to become the CEO of a company. But the third explains it better. He says that my husband has lost ” the memory of procedure”.
That explains why he can no longer write a check or balance the checkbook. Well, that’s not so bad. I can do that. After all, I did handle my own finances before our marriage. This is a little more complicated, and, as I am, if not the wicked stepmother, not exactly the beloved one either, somewhat delicate. But its doable, and not the end of the world. For me.
But what about him? I wonder, and not for the last time, what, if anything, does my husband think about this? He was very much in charge of our finances, spent time every day at his desk, read the business pages, managed his own investments. Is he aware that he cannot now manage this? Does it bother him? Does he hate losing this control? He sees me at the checkbook and he says nothing. In taking over, am I hurting his feelings? Diminishing him? How do I navigate in this world of Alzheimer’s?
This definition also explains what has taken place in the kitchen. My husband has always been passionate about food. When we first married I would do all the shopping and meal planning during the week, thinking that such a busy man shouldn’t have to worry about groceries on the weekend. Wrong. He wanted to be in the fish market, the cheese store, at the vegetable stand. And over the years, food became a very large part of our marriage. We planned menus together, shopped together, cooked together, critiqued together. And tasted food and wine together — it was more than cooking, it was fun, laughter, it was sensual.
Now, this man who prepared a a perfect rack of lamb persille, carving it in the French manner, whipped up a cheese omelet, his whisk beating out a samba, never used a bottle dressing, browned adroitly the crust on the creme brulee, stands and looks at the bread, the lettuce, the meat, the mustard, and does not know what to do. He cannot assemble a sandwich. His face shows frustration, anger, and then embarrassment. He walks away, saying he is not hungry. I vow that I will never let him be in a position again where he is is face to face with something he cannot do. I will be the protector of his dignity. But that becomes a delicate dance, balancing encouraging him to participate against the possibility of –not failure, there is no failure in our vocabulary — but him believing that he has failed.
Of course, I can do all the cooking now. That’s not a hardship. Millions of partners just assume that they will do it. But it’s not having to take that on that angers me. It is the loss of what that meant to us. A large part of our days revolved around food. What will fill that time now? At first, I try to involve him. When I am making a stew, I ask him to sit in the kitchen with me, and cut the meat into small pieces. He stays with it for a few minutes, then, again, walks away. This part of our life together is clearly over.
Alzheimer’s has stolen two bits of my husband’s self — his ability to manage his finances and his joy in cooking — and with that, a large part of his dignity. And the thief has robbed me too — of companionship, laughter, what our friends used to call our ballet in the kitchen.
Something like this happens when Alzheimer’s becomes part of any relationship. Whether it was the golf, the gardening, the backyard barbecue, fighting over the remote, something precious is stolen, not just from one life, but from two.
It is the things that do not cost anything that are worth so much….the never ending loss of days gone by but you have the memories and they can not be robbed from you!
I read this to Joe today.We were wondering how much you can talk to Oscar about his condition.. and also how much it has progressed.. and if he is able to realise and accept what is happening to him. You both shared a lovely sense of humour.. and I know how much in the midst of anguish how a shared smile can make so much difference, or has that been taken away as well?I have a good friend who has just been given a similar diagnosis.Much love, and from Joe Suki.
Date: Sun, 19 Aug 2012 16:09:27 +0000 To: firstname.lastname@example.org
Suki: I will be covering this in future writing……but, in brief, until recently there were glimmers of Oscar and bits of conversation with a lot of his humor…….he had a heart attack in January and since then, the deterioration has accelerated and there really is no such thing anymore as a conversation…..and I miss that, as well as all the other things, very, very much. Wish you lived around the corner! love, joan
The concept of “the memory of procedure” is quite fascinating and captures some of the major cognitive problems faced by patients.
I remember my mother no longer knowing to put the top on the percolator before she plugged it in, or no longer knowing to turn off the water in the sink before bedtime. She no longer knew how to tip, which led to a very embarrassed postman tracking down my sister to return a tip of several $100 bills.
I remember the morning when we sat down to pay bills, and I realized that she could no longer write her name to sign a check. That was particularly humbling to her and sobering to me.