JOAN’S BLOG – WEDNESDAY, MAY 27, 2009 – TRADING PLACES

As caregivers for spouses with Alzheimer’s Disease, our lives have been ripped apart. In many cases, the personality of the spouse we knew has changed so drastically that we find ourselves living with strangers to whom it is a daily struggle to relate and understand. In other cases, the disease has advanced to the point that we may be living with a confused, mentally challenged childlike figure. The scenarios are as different as the ever changing, twisting surprises of the disease. Any one of us at any time may be dealing with rages or blank stares, lethargy or combativeness, incessant talking or no talking. All of us are dealing with memory loss that interferes with every aspect of our spouses’ lives and ability to function. Most of us are stressed, deeply saddened, and in constant turmoil from the hand dealt by Alzheimer’s Disease.

But imagine what it is like to be living with the disease. Since the beginning, I have tried to offer my husband support and understanding for what he is going through. My attempts are usually answered with a growl – “You have NO IDEA what it is like. How would YOU feel if your life was taken away from you?”

Prompted by a post from a reader who described her husband’s anger at having to wear his Medic Alert bracelet, and his subsequent removal of if, I decided to attempt to imagine if I were the one with the disease. Maybe we can come to a better understanding of our spouses’ behaviors and frustrations if we imagine ourselves in their place.

I can only speak for myself, but there are two personality traits that I feel define me. They have been with me my entire life. They are my fierce independence and my love of learning. If my independence was taken from me, I was too confused to learn, and unable to retain anything I tried to learn, who would I be? How would I feel?

My independence - I probably would be violently angry and lash out at anyone in my path who tried to restrict my actions. ( Driving would not be one of my issues –if someone was here to drive me where I wanted to go, I would be fine with it. I hate driving.) But what if my caregiver did not allow me to use my computer or read my books because he felt I was no longer capable of understanding how to do either? I would fight him with every last breath I had, regardless of whether he was correct or not.

Inability to learn – Fear, absolute total fear would be my reaction. I know this for a fact because 9 years ago, I had lengthy, serious surgery. Three months after the surgery, I was still suffering from the after effects of the anesthesia. The doctor gave me permission to take our scheduled winter trip to Florida. I, who had always been highly efficiently organized, could not pack my suitcase. I could not figure out which clothes I needed; which top matched which pair of shorts; or how to organize the suitcase. I was so frightened at my loss of organizational ability that I sat down and cried. Thankfully, the loss was temporary, and my abilities returned a few months later. But imagining the situation to be permanent sent shock waves of fright through my system.

If I lost those two aspects of my personality, anger, fear, and then depression, would be my constant companions. We as caregivers, live with those emotions daily, but the difference between us and our spouses is that we understand them, and have the intellectual, if not always emotional, ability to change them. We can seek advice, support, and education, and remember the strategies we are taught. Our spouses with Alzheimer’s Disease do not have that luxury. Even if they are given advice, support, and education, they often do not have the memory, judgment, or reasoning to utilize them. They are left with nothing but the anger and fear. What a terrible way to live.

This is not to say that I can live comfortably with my husband’s anger and fear. It is simply to say that I am learning to understand it. Which is why I believe in the anti-depressant and anti-rage drugs to ease his emotional pain.

Feedback to joan@thealzheimerspouse.com

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