JOAN'S BLOG - MONDAY, APRIL 29, 2013 - THE CARDINAL RULE

I am writing this blog as a reminder to those of you who have forgotten, never learned, or are still unable to implement the cardinal rule of being an Alzheimer Spouse – You cannot speak to nor relate to your spouse as you used to. You are no longer a “couple” who make rational decisions together. You cannot explain information to them; you cannot rationalize, reason, or argue with them. Their brain is damaged, and whatever communication strategies worked for you before, are not going to work now. I caused myself massive stress for years because I refused to give in to this reality. I felt that every time I took my social worker’s advice and ignored my husband’s irrational reasoning or behavior, rather than trying to discuss it with him, I was destroying a piece of our relationship. What I refused to acknowledge was that Alzheimer’s Disease was already destroying our relationship. No matter what I said or did was not going to change that. What I needed to do was learn to relate to the disease, not to him. It was the most difficult part of being an Alzheimer Spouse, and it took me four years to finally give up and distract, divert, and ignore him, instead of trying to have a discussion with him.

The reason I bring this up now is because I did the unthinkable this week. I broke the “rule”, and tried to explain (because he asked), what his new added Medicaid services would be. He wanted to know who was coming, when they were coming, who was paying for it, and what the aide was going to do for him. Why, I ask myself, did I try to answer. I know better. Maybe my brain was on overload from stress. Maybe I simply lost my mind for a minute.

Medicaid took away his Wednesday and Saturday, aide who came to shower him, and replaced those times with an aide to get him ready and put him to bed Mon-Thur. nights. He could have his showers during those times. As you can imagine, it did not matter what I said or how I said it, he didn’t understand what was happening. The more confused he got, the angrier and more frustrated I became until I ending up with a massive headache, and a stress attack.

Never, ever, ever, try to explain anything to your spouse. Never try to reason with them. Never give them complicated answers. This is fairly simple if your spouse is in advanced stages, cannot engage in conversation, and hardly knows who you are. But when they are still in the stages in which they can appear reasonable, and INSIST on knowing what is going on with finances, taxes, and in our case, home health aides, it is much more difficult. But it is doable. One must learn to be short and concise.

Except for my recent lapse, I generally tell Sid nothing to do with important household matters. If he asks, I give the simplest answer possible – one that requires no explanation or follow up. For instance, when he saw an ad on TV about taxes, it reminded him to ask if our taxes had been done. Rather than explain why our accountant no longer does them or who did them and how much it cost, I simply said, “Yes.” Of course, he then asked again and again every time he saw that ad on TV. Each time, although I wanted to pull my hair out of my head, I repeated “Yes.”

When he sees an advertisement in the newspaper for a “miracle cure” for Alzheimer’s Disease, and he asks me to check into it, rather than going into a long explanation about the idiocy of these claims, I say – “I will ask the doctor about it.” He doesn’t get angry, and I don’t get stressed.

This new manner of communicating with our spouses is painful because it reinforces the change in the relationship. You are no longer partners. You are the caregiver/parent/nurse/doctor, and your spouse is the child/patient. Because of their confusion and inability to process language or make reasonable decisions, it puts an end to the marriage as it was. This alteration in communication status has left me with that understanding, and I suppose, resignation. If I forget this lesson, a relapse as I had last week surely reminds me. As a result, I find myself not only alone, but lonely and sad. This disease is a nightmare.

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