JOAN’S BLOG – MON/TUE., NOVEMBER 7/8, 2011 – IS OUR PERSPECTIVE SKEWED?

We always say that no one can understand or realize the extent of our spouses’ mental disability unless they live with them as we do. My husband is typical of your husbands and wives with Alzheimer’s Disease. He can put on a good show for friends, doctors, neighbors, and anyone else who crosses his path for an hour. But at home………………..he resides in the land of no memory and is perpetually confused. I know better than anyone how disabled he is…………………or do I? Do I see his mental and physical disabilities realistically? Is he less or more than I see?

This question has come to mind because of a casual remark made by an Alzheimer Spouse friend. Her husband and Sid bonded the first day they met almost 5 years ago in our support group. She said that her husband, afflicted with FTD, was sick at heart over the physical and mental declines he sees in Sid. Now, wait a minute, I thought. He’s not that bad. Yes, of course, he is worse than he appears to non-Alzheimer folks. I see that all of the time, and complain that no one else does. But has he declined so much that his dementia friends are noticing?

To answer the question, I engaged in an activity my social worker advises when we want a verifiable snapshot of our spouses’ functioning. She says to look back 5 years. Compare their mental and physical functioning then and now.

Five and a half years ago, we moved from Massachusetts to Florida. Sid had been having memory and personality change problems, but we were still “US”, and enjoyed a good quality of life. Sid drove the entire trip with no problems. We stopped along the way to visit relatives and tour cities we had never seen. When we arrived in Florida, we slept on an air mattress on the bedroom floor for a week, until our furniture showed up. This required hoisting oneself up from the floor to a standing position if one was going to get up for the day.

He grocery shopped for me, carefully following a list I had written, lifting heavy bundles into the car and the house. He climbed a ladder to install hurricane shutters on the windows. He joined the Homeowner’s Association. Realizing he could not handle a board position, he took a position on the “infraction” committee, requiring him to drive around looking for “infractions” of the HOA rules, writing down the address and infraction, and reporting back to the committee. He had no problem with that job.

Although the AD diagnosis came 3 months after we settled in Florida, the Aricept and Namenda seemed to stabilize him for at least a year.

Fast forward to the present. The diabetes has caused fractured bones that do not heal; he is filled with arthritis from shoulders to knees; severe neuropathy causes pain in his feet. He has lost all strength in his arms, hands, and legs. He hobbles at a snail’s pace on a walker. He literally does not recall what is said from one minute to the next. He has a perpetually confused look on his face. Obviously, he does not drive. (Although he still thinks there is nothing mental or physical stopping him). He becomes upset and agitated if anything is “off” in his routine. He literally lives “in the moment” because he cannot recall the previous moment.

When my sister was here for 10 days helping me after my surgery, she left telling me that he has no independent thought, no reasoning, and no memory. She said that he is no longer “Sid”.

All of this brings me to my original question – Is our perspective skewed? Do we see them as they are; as we wish they were; better than they are; or worse than they are? Does it even matter?

It does matter to me, because I want to allow him to do as much as he is able for as long as he is able. I do not want to limit activities in which he is still able to participate. I do not want to place him in Day Care if he is not ready. Conversely, I do not want to expect more from him than he is capable of doing, thus frustrating both of us.

It is a constant balancing act without a net. I am trying to do the best I can for him, without losing my own mind in the process.

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