JOAN’S BLOG – THURSDAY, DECEMBER 27, 2007 – SID SPEAKS -  A GLIMPSE INTO HIS WORLD OF AD.

Sid and I had the most astonishing conversation today. He was sharing his feelings about his disease and the new ways he had decided to handle it. It is rare that we are able to have “substantive” conversations, so I was listening intently, and asking probing questions. It is also extremely unusual that he is able to verbalize “insights” into his emotions and actions related to AD, so I did not want to miss a word.

This all came about because of his confusion over his Medicare coverage and my insurance’s prescription drug program. He was going to the drug store, and was going to ask the pharmacist about it. He was so mixed up about what he wanted to know and how he was going to ask it, that I said I would call and ask. Before I picked up the phone, I said to him, “I don’t want to insult you, but it would be better if I asked, because you don’t understand what you want to ask, and you won’t understand or remember the answer.”

To my complete shock, he told me that he wasn’t insulted, because he has come to realize what he is now incapable of doing, and he is no longer fighting it. He said that he prefers to save his energy to expend on the abilities he is still trying to “hold onto”. Then came what was to me, his most stunning statement. He said that much of his anger and tantrums were related to his frustration in no longer being able to do many of the mental tasks that we take for granted, i.e. being able to deliver a message to the pharmacist. He said that the anger and lashing out stopped when he “accepted” what he could no longer do, and stopped struggling to regain what he knew was lost.

We spouses are always puzzled by the bizarre behavior of our AD afflicted husbands and wives. How often have we said to ourselves and each other – “Why are they doing this? Why are they behaving this way? What precipitated these outbursts? Here we are being given a very rare opportunity – An AD patient is telling us the reason behind the behavior that seems irrational to us. It is caused by the anger and frustration at their loss of functioning. Maybe, just maybe that knowledge can ease our stress a bit when these incidents occur again.

I was so surprised, not only at his insights, but that he was actually able to coherently verbalize them, that I could barely speak (a rarity for me, as we all know). One of the puzzles of Alzheimer’s Disease is how this man was, all of a sudden, able to so eloquently explain his emotions and behavior, yet cannot figure out that my insurance coverage also pays for his prescription drugs, nor can he take or a deliver a message properly. 

When I recovered my composure, I told him that I thought it was a wise, mature decision to “let go” of what he cannot control. He said his decision was fueled by his lovefor me, and his desire not to cause me any more heartache and stress than he already has.  I assured him, as I always do when he apologizes for causing me pain, that it is not him, but the disease that is altering his behavior. We both sighed, and said, “This disease stinks, doesn’t it?”

My wish is that the words of my husband have helped you to better understand your own spouse’s behavior.

NOTE: It is the language difficulty that AD patients experience that has delayed the “AD Spouses’ Perspective Project”. I have not forgotten it, and do intend to complete it, but it has been very challenging for them to find the words to express themselves. Today was, as I said, an extraordinarily rare occurrence.

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