JOAN’S BLOG – THURS./FRI., MAY 5/6, 2011 – MY BIG MISTAKE

Do I lecture all of the time about not arguing or trying to reason with an Alzheimer patient? Do I sit and shake my head when a newcomer on my message boards or in my support group talks about their frustration in attempting to explain logic to an AD spouse? Do I carefully explain to everyone that you CANNOT expect your spouse to understand, reason, react, and answer as they did before AD? Yes, I do.

Then I need to know why I tried to reason with my husband on Tuesday and actually blew up in anger at him when he did not “get it”. I am appalled at my own behavior.

As those who follow my blogs are aware, my husband is physically, as well as cognitively disabled. Between the stress fractures in his knees, which are still not healed after 5 months, his painful diabetic neuropathy, and his back problems, he spends his days sitting in his recliner watching TV in the den. The doctor’s orders are that he is to walk around in the house with his walker to at least get a little exercise, but when we go out, he is to use the wheelchair. If I drop him off at the front door of the restaurant or wherever we are going, he may use his walker.

At home, he is “resistant” to doing ANYTHING. He prefers to sit in his recliner and have me wait on him. No matter how often I “remind” him that the doctor’s orders are to walk around as much as possible in the house, he whines, complains, pouts, and gets angry. I stick to my guns and make him get up, which causes more complaining from him and stress for me.

However, as soon as we are in the company of others, the tune changes completely. He INSISTS, in front of everyone, that he can walk with his walker across the parking lot (Handicapped spots are not always available); he loudly proclaims that he needs to “exercise” his legs; that his legs will never regain their strength if he doesn’t walk. When I tell him he needs to wait for me to bring the car to him, he tells whomever he is with that I am a pain in the neck; that I am babying him; that I don’t know what I am talking about.

This scenario was repeated on Tuesday in front of a restaurant. To say that I was angry and stressed does not give quite an accurate picture. Furious, ready to explode, resisting an urge to kick him in his bad knees, are a few of the emotions that ran through my head.

When we returned home I made two of the biggest Alzheimer mistakes a caregiver can make. First, I tried to reason with him, and secondly, I expected him to answer me as if he were still the person he was BAD (before Alzheimer’s Disease). I was livid. I wanted to know WHY he behaved one way (and I gave him examples, explaining to which behavior I was referring) at home, and completely the opposite when we were out in public.

He appeared confused, and kept saying he did not know. Then I saw the curtain drop. He shut down, closed his eyes, said he was tired, and that was the end of that. I knew from experience there would be no getting through to him that night.

Yes, yes, yes, I know how stupid it was to try to reason with him. I know how stupid it was to expect a coherent response from him. Sorry to report that even though I knew this, I made one more attempt at it. The next day, when we were both calm, I again explained to him, the difference between his “at home” and “in public” behavior, and asked WHY he did it. “Why are you so mean, miserable, and whiny when I ask you to move, but act as if there is nothing wrong with you when we are in public?”  I could tell by the look on his face that he just did not “get it”. He said that when he is out in public, he guesses he “forgets” what the doctor said. (I also know that although he is unable to express it, he does not want to appear weak and disabled in front of others. I was hoping he would be able to express it to me.)

I have known for a long time, but this incident reinforced the fact that, as is always the case in the patient/caregiver dynamic, I needed to change my way of responding to, not only this situation, but every Alzheimer situation. I kept telling myself that I had to figure out a way to stop letting his unreasonable behavior aggravate me. I know it is not his fault. It is MY fault for responding improperly.

That is when the answer I asked at the beginning of the blog came to me. Why did I try to reason with him; why did I expect a logical answer from him?  Because no matter how much I profess to have accepted his deficiencies, there is still a part of me that thinks he is “not that bad.” There is a part of me that thinks that maybe if I explain it simply and carefully, he will understand it. Maybe he will be able to give me a clear answer once in a while.

I am losing so much of him, and it seems to be going faster. The more he declines, the lonelier my life becomes. Is it any wonder I sometimes forget my Alzheimer caregiver persona and slip back into my “wife” persona, expecting this husband to behave and respond as locially as the husband I used to have would have done?

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