Sunday, June 14, 2009

Out of Control Pop

If only life were like the old family album where everyone is always smiling. This is Dad and Kimmy (the taller one) and me at the Grand Canyon one summer at dawn.

With dementia patients, you find some sort of routine that works and, just as you do in your life, you toodle along assuming what works one day will also work the next. And just as in life, it doesn't always do that. You come up against the perversity of animate and inanimate ofjects, the curvature of the earth, the unpredictability of the dice and all sorts of other things.

In short, what works one day with my 89-year old demented father, does not work on another. And I end up in tears because I don't know how to fix it. I did that today.

At one of the Alzheimer's support groups I have attended, a man had to put his wife into skilled nursing because he was unable to care for her, with her dementia, any longer. This so angered her damaged brain that he could no longer visit her in the nursing home. If she saw him, even in the hallway, she would go berserk and yell that he had put her in "this prison" against her will and she would be out of control like that for at least 24 hours. The nursing home people asked him not to visit.

There was just enough of a grain of truth in his wife's reaction--just a grain, not actual truth--that the man was wracked with guilt. Yes, he knew he had done the right thing, and yes he knew that going into a nursing home would upset practically anyone. But no, her reaction was not that of the loving wife he had known for sixty years. Her brain was not the brain he had known. So, he would sneak into the nursing home to keep track of her care, but he would have to stay away from her room. His daughter could visit and his wife would be okay with that, but he was devastated that he could not see her himself.

Another person in a support group of mine had been married to her husband for more than fifty years. He had had a brief first marriage that lasted less than two years before they had met. But as his dementia worsened he would confuse his second wife with his first and tell his present wife (as if talking to his first wife, if you follow me) that no, he had not loved that "second woman" and wished the first wife and he had never divorced. He would find his divorce papers and brood over them endlessly. The woman cried as she told us she had had to put her husband, who had Alzheimer's, in assisted living because she could not longer handle the stress.

My own father was like that this morning. He was mad from the minute I entered the kitchen with the pancakes he always enjoys. Mad because I had sent (with his permission) an Ascension Island cap to his old friend-from-the-Army Herb, who is himself in skilled nursing. I had sent a note to Herb's wife Ursula because I wanted to let her know I had been in touch with a woman on Ascension who was going to call her to seek out historical information on World War II U.S. Army sites there.

Somehow, my poor father got it in his head that I had been corresponding with his old friends behind his back. Yesterday, I had showed him my correspondence with them, and today he said he hadn't read it and I should have showed it to him. But I didn't have it with me. It just got worse from there. His total deafness doesn't help: he is so tuned into faces, because he cannot hear, that if you make any kind of face that shows exasperation it makes him angrier and angrier. He slammed his hand so hard on the kitchen table today I was afraid he might hurt himself. I figured a retreat, under the circumstances, was the only sensible thing to do.

These things become a tangled web because your loved one responds in the same tone of voice, and with the same gestures and manner than he once did when he actually had something to be angry about. You are now seeing the same picture of an angry parent: only this time you have to keep telling yourself it is not the father you knew. But that is tough, because he is sitting right there, looking almost just as he did, and definitely sounding as he once did when you came home late from a date, or told him to buzz off when he wanted you to eject the rock and roll tape from your radio.

Added to the fun is the other parent who can't seem to face the fact that it is time for Dad to be in skilled nursing, for his own safety and for ours. She likes to pretend everything is as it was. Certainly, that helps her survive, and I do understand that. But it does not move us toward the next steps we need to take in this truly difficult struggle.

My Dad is still well enough to feel sorry hours later when he realizes he has been irrational or difficult. But that isn't the point. I'm sorry we can't do more for him. The trouble is ... doing more for him is never enough.

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1 comment:

Florida Beach Basics said...

I hope you're sharing these posts with the rest of your support group - as hard as I know they are to write about, these are things that others have gone through/are going through, and knowing that others have similar issues helps.