JOAN’S BLOG– TUESDAY, SEPTEMBER 2, 2008 - THERE IS NOTHING WRONG WITH ME – I JUST CAN’T REMEMBER THINGS.

Denial  is a huge part of Alzheimer’s Disease – denial by the “well”spouse; the afflicted spouse; the family; friends; and even the doctors we trust to give us answers and treatments. We have spoken often of all of these experiences.

But what has struck me lately, is not the DENIAL of a problem by my husband - he knows he has a problem. It is his lack of understanding of how his almost complete loss of short term memory affects every aspect of his life. Probably because the disease does not allow abstract reasoning, he is absolutely convinced that his memory loss exists in isolation – that it has no effect on his relationship with me, driving, relationships with other people.

In the beginning of the disease, he understood how his memory problems were affecting his job. He knew he was having difficulty learning a new job because he could not retain the information, directions, and names that he was taught.

But now, four years later, he said to me – “There is nothing wrong with my brain. My brain still works fine. It’s just that my short term memory is shot.”

You would think that I would have learned by now that Alzheimer’s Disease makes no sense, is unpredictable, that I should expect the unexpected and unreasonable, and KEEP MY MOUTH SHUT. But no, I was so surprised by that statement that I had to follow it up with questions.

“Ah, you can’t see how forgetting every conversation you have with me would have an effect on our relationship? You can’t see how memory loss could affect one’s driving? You can’t see how forgetting you said something and repeating the same story every time you see someone might affect your relationship with them?” The answer was a resounding “NO” to every question. He was not being stubborn or argumentative. He actually had no idea. To him, memory exists in isolation to any other life factor.

At first, I thought this was an idea unique to my particular husband, but I have been witnessing this first hand with other early stage AD patients. It is obvious to them how the memory loss affects their job, but once they are no longer working, they seem oblivious to its effects on any other area of their lives.

I guess it makes sense in an odd, Alzheimer’s sort of way. If he doesn’t remember a discussion, conversation, or incident that took place yesterday, how could he be aware that any of those things affected me, him, or anyone else negatively, positively, or at all?  I am coming to that conclusion as I write this, and it is helping me enter and understand his world a little better. It IS a world of incidents in isolation. They happen. He reacts to them at the time; then they are gone from his memory. Never happened; don’t have to think about them or dwell on them ever again. How could he know that his memory loss affects other areas of his functioning, if he can’t remember any of the incidents? Talk about a viscous circle ! Except of course, for the driving loss. I think that is burned into his brain so deep, it will never leave, no matter what.  

So what is the point of all this musing? For me, it is another lesson in patience, understanding, and living one day at a time. I wish we still had the connection and enjoyment that mutual memories bring to a relationship – the knowing winks that signal personal promises, private jokes recalled silently with a simple look, finishing each other’s sentences - but we do not, so it is up to me (as it always is up to the “well” spouse) to enjoy the good moments and try to “let go” of the bad ones. As always, I just keep trying.

COMING UP ON WEDNESDAY : OUR SPOUSES AS OUR CHILDREN - THE REAL STAGES OF ALZHEIMER'S DISEASE

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