JOAN’S MON/TUE. BLOG – NOVEMBER  8/9, 2010 – A SPOUSE’S DENIAL, DEFENSIVENESS, AND TENUOUS HOLD ON DIGNITY

We have all been through the scenario of our spouses forgetting everything, being confused, angry, and disoriented at home. Then we go out in public with people and VOILA! – they are cured. They talk and act normally, to the extent that our companions think we are making it all up. Our spouses are so good at this charade that we begin to question our own sanity. “He/she looks fine to me” is about the most annoying and aggravating phrase that is spoken to an Alzheimer spouse. It becomes a relief when they advance to the point that it is obvious to others, so we no longer look like complete idiots and drama queens/kings.

At home, my husband is aware of his deficiencies, and depends upon me to tell him when to test his blood, when to eat, when to shower, where we are going, when we are going, what we are doing for the day, what doctor we are seeing and when, which doctor is for which ailment, which pill is for what, to take his suppertime pill, to write down instructions and reminders, and on and on. If I go out to do errands, I have to make a list of where I am going and when I will return or else he will forget and worry about where I am. As long as I faithfully attend to these duties, everything runs smoothly. If I lose my temper after answering the same questions 5 times in an hour, he becomes depressed and weepy, pleading with me to understand that he cannot help it. As you can imagine, that fills me with remorse and sadness.

When we leave the house, he can still appear normal to outsiders for a short period of time, but it is obvious to friends and relatives that there has been a change. Lately, I have witnessed his desperate attempts to hide the extent of his disability from everyone except his Alzheimer friends – even those non Alzheimer people who are aware of his illness.

Recently the physical therapist was at our house, and I was going out to do errands. She is totally aware of his AD, and he knows it. I made my usual list of where I was going, but when I handed it to him, he became defensive. “I don’t need that! I’ll remember,” he growled. You would think I would know better, but I committed the ultimate sin and started to argue with him. “No you won’t. Just keep it on the table where you can see it,” I insisted.

Because I sometimes momentarily lose sight of ALL of the rules of dealing with someone with Alzheimer’s Disease, we went back and forth like bickering children, until I finally realized he was trying to save face in front of the physical therapist. I should have figured out that fact immediately, but what can I say? I’m fallible.

The next week, the head physical therapist came to discharge him, with strict instructions that he should do his exercises and walking every day; that on the days he is lazing around in his recliner, he should get up every two hours and walk around the house; and that the more he moves the better it will be for his strength and stamina. The physical therapist admonished him to move when I tell him it is time to move. Sid insisted that he would. I told the PT that Sid argued with me every time about moving. He whined, complained, and refused to move. And I did not leave it there. I told the PT (who already knew very well) that Sid was not going to remember his instructions. Where was my head? Sid became extremely defensive, and insisted that he would remember to move every few hours, that he would remember to listen to me, and there was no need to write it down for him. He was, once again, trying desperately to retain his dignity, so I quickly shut up.

I have learned my lesson. Part of my job is to allow him to hold onto his dignity whenever he can. It is all he has left. When he exhibits defensiveness and denial in front of others, I will support him. It is the right thing to do. Now let’s hope I remember.

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