I don’t know about you, but Alzheimer’s Disease is not what I thought it would be. When we finally received the definite diagnosis, after a year and a half of an incorrect diagnosis and the wrong medication, we sat on the couch together, with our arms around each other, and my head on my husband's shoulder. I told him that he should not worry – I would always love and take care of him. At the time, I didn’t know that I had NO IDEA what that meant.

My idea of Alzheimer’s Disease was that my husband, my best friend and partner of 30+ years, would slowly lose his memory. He would forget what was said to him, and he would forget what he said. The disease would progress. He would forget how to use familiar instruments like the telephone and his shaver. The disease would progress. He would forget who our son was; he would forget who I was. He would not be able to care for himself; I would not be able to care for him at the end, and I would reluctantly place him in a nursing home. Isn’t that what you thought?

Did any of us expect the behavior changes, the temper tantrums, the regression to childhood, the anger and resentment on both sides? Did we expect the slow, steady, heart wrenching deterioration of our relationship to be replaced by a deep, bottomless pit of loneliness?

The doctors and social workers’ most prevalent advice:

• Don’t argue – you can’t win an argument with an AD patient. They are losing the ability to reason, and their thinking is inflexible. You will NEVER win – you will just set the stage for an escalation in tempers (yours and theirs). Each time I “let it go”, as they advise me; each time I don’t bother to discuss and try to find a solution to our disagreement, I lose another little piece of our relationship. What is a good, healthy, loving relationship if not two people discussing a problem and finding a mutually satisfying solution? Alzheimer’s Disease does not allow that to happen.

The fact that he now argues with every single thing I say is not supposed to matter to me. I am supposed to keep quiet. Lately, if I say black, he says white. It does not matter what we are talking about, he contradicts me. Consistently and continually. We went to the beach last week – remember, we live in Southern Florida, so the ocean water was about 85 degrees – I had no trouble getting right into it – unlike when we lived up North, and 68 degree ocean water in August was considered “warm”. While we were in the water, I said that I could never swim in the cold Northern waters again. “Yes you could”, he said. “No”, I foolishly answered. “My body just couldn’t take that anymore.” He went on and on for the next five minutes arguing his point that I would need to go in slowly and get used to it, but I could certainly swim in frigid water again. I remembered the motto “Don’t argue with an AD patient”, and I said nothing more. But the anger seethed.

Yesterday, my brother-in-law was driving us to a restaurant. I said that it was on the left. Even though we were looking straight at it, and could see it was to the left, Sid insisted it was to the right, and made my brother-in-law drive around to the right to get to it, arguing all the way that I was wrong. I shut my mouth and said nothing, but I seethed.

Day in and day out, he contradicts me and argues with whatever I say. I cannot argue back. No, I am told that I have to agree with whatever he says.

Once again, it is us, the caregiver spouses, who have to compromise our beliefs and feelings for the AD spouse. Intellectually, it makes sense. They are the ones with the disease; it is the disease that is making them behave irrationally. They cannot help it. But emotionally, it is very hard to always be the one who has to “let it go”; “go with the flow; don’t argue; adjust to their mood swings; adjust to their needs; adjust; adjust; adjust. It is exhausting and it breeds resentment in us.  How healthy is that for sustaining a loving relationship? Not so healthy.

No answers here. No solutions. It’s Alzheimer’s Disease. We don’t argue; we adjust. It is not an easy road to travel, which is why we need so much support. Message boards, support groups, social workers, and doctors – use them all – use whatever you need to keep you on your feet. I know I do.

Feedback to joan@thealzheimerspouse.com