JOAN’S BLOG – THURSDAY, April 24, 2008 – BASIC CAREGIVER TIPS – WHAT THEY MEAN FOR SPOUSES

As you know, the focus of this website is on issues and emotions of spouses as they try to deal with the emotional turmoil of slowly losing their spouse, one piece at a time, to Alzheimer’s Disease. However, as I mentioned recently, we can all use good tips to help make the care giving of our spouses easier. With that in mind, I am in the process of setting up a section of care giving tips.

As I was looking through my materials, I came upon a list that was given to me at the beginning of this journey. I did not understand its significance at the time. I do now. But now that I understand it, it makes me sad and angry. Sad that I am in the position to need the list, and angry at my interpretation of what some parts of the list say about the state of my marriage. See below for the most basic list of important “DO’S and DON’TS” for the AD caregiver. At the end, I will give you my opinion as to what it means to our marriages.

                NEVER NEVER NEVER                                          

NEVER ARGUE ----------------------AGREE

NEVER REASON--------------------REDIRECT

NEVER SHAME----------------------DISTRACT

NEVER LECTURE------------------REASSURE

NEVER SAY “REMEMBER”-----REMINISCE

NEVER SAY “I ALREADY TOLD YOU”---------REPEAT

NEVER SAY “YOU CAN’T”---------------SAY “DO WHAT YOU CAN”

NEVER COMMAND-------------------------ASK

NEVER CONDESCEND--------------------ENCOURAGE AND PRAISE

NEVER FORCE---------------------------REINFORCE

Obviously, no one who loves and respects their spouse, AD or no AD, is going to “shame”, “lecture”, “command”, or act “condescending” to them, and I don’t know about you, but before AD, Sid and I were never able to “force” each other to do anything. We’re both too strong willed.

It’s the “never argue” and “never reason” parts that have upset, depressed, and pushed me into the realization that my marriage can never be the same again. Our relationship always meant so much to us that we considered it the third party in the marriage. Whenever we had a disagreement, we always discussed, debated, and reasoned out the situation, and made a decision based on not what was best for Joan or best for Sid, but what was best for “US”, as we called our relationship. (No, we were not perfect – there were more than a few screaming matches over the course of 38 years.) But with the loss of that ability to argue, debate, and reason, I felt we lost the essence of “US”. And oh, how that hurts.

I have learned the hard way that you CANNOT REASON or ARGUE with a person with AD. In the beginning, I asked WHY? Why can’t we reason out our differences as we used to do? The answer is brain damage. With AD, the brain loses its thinking flexibility, abstract thinking ability,  judgment, and continues to regress to childlike thought processes. Ever try to reason with a teenager? Ever try to reason with a 2 year-old? To complicate matters, the person is, of course, not aware of it. Which leaves you, the caregiver spouse, once again holding the entire burden of smoothing the way, just as you had to do with your children. There has been much discussion lately on the Message Boards of spouses lamenting their new role as “parent” to child, rather than spouse to spouse. (CLICK HERE for the Blog on spouses as children.)

So, yes, the tips above are good ones. They are helpful in diffusing potential volatile situations with an AD patient. But, in my mind, they just emphasize the changing relationship that AD has forced upon us. And I don’t like it. Not one bit.

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