JOAN’S BLOG – TUESDAY, OCTOBER 14, 2008 – CONFUSION REIGNS

I admit it. I am confused. Alzheimer’s Disease angered, saddened, frightened, tortured, and depressed me. Now it has me so confused, I don’t know which way to turn, how to feel, or what to do.

It took FOUR years for me to come to terms with and accept the changes in my husband and our relationship. It took me FOUR years to learn how to live with Alzheimer’s Disease and the husband who was so different from the one I knew. The Previous Blog section documents all of it. Now, after I FINALLY settled into some kind of routine and peaceful existence with my AD husband, THINGS CHANGE AGAIN! 

Last month, I wrote about the improvements we noticed in Sid a month after the first BAP III infusion and addition of the anti-depressant medication. I questioned whether, after all the adjusting I did to his altered personality, if I should adjust to the improvements, or hold my breath and wait for the other shoe to drop. You all gave me the wise advice to enjoy it while I could, because inevitably, it will not last, and he will decline again.

Now that the improvements are still holding – that the anger and rages have receded, he seems to have returned to the loving guy I used to know; a guy who is more alert, is remembering people’s names, is remembering conversations when reminded of their details, and who is once again displaying his loving, playful side – I find myself slipping, letting my guard down. He is offering emotional support, and I am accepting it; he is loving and helpful, and I am accepting it. I am arguing with myself -Should I once again grab onto the emotional bond only to have it torn from me later, or should I keep my emotional walls up? One minute I allow myself to feel that bond; the next minute I pull away as if I have touched a hot coal.

I am tired of being disappointed and hurt. I keep asking myself - Is it possible to enjoy the positive changes without being devastated when they reverse?  Will they reverse and when? How are we to know, since this is a new drug? With only one infusion, and no more on the horizon, since Elan dropped him from the trial, isn’t decline inevitable? I am so CONFLICTED. I want to let down the walls I’ve built around my emotions, and hold on tight to this man with whom I am now living, but I don’t want to leave myself vulnerable to emotional torture if the raging maniac returns. I cannot live with anger, hate, and rage. Four years of escalating hateful tantrums shredded my nerves and tolerance, and forced me to build those walls. It is times like these that I am convinced I have learned nothing about Alzheimer’s Disease, and that it is always going to outwit me.

©Copyright 2008 Joan Gershman

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