JOAN’S BLOG – WEDNESDAY, APRIL 1, 2009-  THE EMOTIONAL STRAIN OF SPOUSAL CAREGIVING - DON'T KNOW HOW LONG I CAN WITHSTAND IT.

Today it is my turn to ask questions. I just do not understand some things that are asked of me in dealing with this scourge of a disease. This is not about the spouse who has the disease. It is about the caregiver spouse and the emotional roller coaster he/she is expected to ride daily until the disease’s end, which could be 10-15 years.

The Risperdal is working for my husband. He is not the one who lost control yesterday. I, who am expected to be calm, understanding, ignore all of his poisoned arrows, even when directed straight at my heart, finally erupted in a volcanic explosion.

As I said, the Risperdal is keeping him from raging and screaming, but the anger is there. It never leaves. The irrational, unreasoning possession of his brain by Alzheimer’s Disease is there. No need to go into detail of yesterday’s incident – the simple, ever present “elephant in the room” is the driving. He would not stop talking about it. It was as if my head was filled with voices sneering at me; taunting me; baiting me perhaps, and I took the bait. In a very unladylike fashion, I let loose some of George Carlin’s 7 words that cannot be said on television, and proceeded to break every rule in the Alzheimer’s Book of Caregiving. I argued, tried to reason with him, threatened divorce. The end result, from his perspective, is that HE has to make all the concessions – i.e. – losing his freedom/driving.

Yes, I realize he has lost his ability to make a living, to drive, and to be independent. I am not diminishing those losses. But what about ME? What about the spousal caregiver? I have lost my husband, the man I loved more than anything in the world;  my wonderful marriage; my future; my money; the relationship I cherished. I've lost everything. And the professional and personal advice I get is – Accept it and ignore whatever the Alzheimer Devil makes him do and say. Make a clean break of the emotional bond and just live with and relate to the disease. I ask you – how many of you who have had long, loving, strong marriages are truly able to do that?

And I seriously wonder about the spouses I meet and hear from who tell me that they are fighting this disease together as a couple, and that it has brought them closer together and made their relationship stronger. I can see how fighting a physical disease can be a partnership effort. But a brain disease? A disease in which the ill partner has no idea the extent of his/her disability? My husband does not see anything wrong with him except that he has some memory loss. He is irrational; his reasoning is broken; his judgment is off. His impulse control is limited. By the very nature of these problems, he cannot see them. Therefore, in his mind, I am the enemy. I am holding him back; treating him like a child. How does that lend itself to a partnership? It doesn’t. It leaves the ill partner confused and angry. And unable to remember any of the “discussions” we have about any of it. It leaves the “well” partner mourning the loss of his/her lifelong lover; and riding an emotional roller coaster of trying to deal with the behaviors of the stranger inhabiting his/her spouse’s body, while at the same time, trying to relate to the “previous” spouse when the Alzheimer Devil allows him/her to appear every so often. It is emotional torture. Sorry, but fighting this disease is not bringing us closer together. It is tearing us apart, and shredding both of our hearts in the process.

I know this is hard to believe, but I really have come a long way. Except for an occasional relapse as happened yesterday, I do not argue. I do not try to reason. I do walk away. Every time I do, I feel that I am losing another piece of the “partnership” that was my marriage, but I do it. I am told by every professional with whom I speak, that I will only find peace when I accept the loss of my husband as I knew him, and live with and relate to the “disease”. Easier said than done.

Feedback to joan@thealzheimerspouse.com

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