JOAN’S BLOG – MON, JULY 12, 2010 – WHAT ALZHEIMER’S DISEASE HAS TAUGHT ME

Sunday is my day to vegetate. I get out of bed when I feel like it. Sid is not one to rush out of bed in the morning, so as long as I check his glucose level and give him peanut butter crackers if it is a bit low, there is no problem getting him to stay in bed. This past Sunday was no different. We watched TV until 1 PM, and then got up. Leisurely and lazily. My friend was coming to visit, but not until 4:30. I called my father at the ALF next door, and told him I would wheel him over here about 4, so he could visit with my friend, who he has known since we were little children together.

As I was puttering in the kitchen, at about 1:30, my father called. I had to come over there right away to change his clothes, because he didn’t know what to wear to dinner. BEFORE Alzheimer’s Disease had entered my life, and I had spent 5 years dealing with it, I would have dropped everything, gotten dressed, and run over there to help him. I very calmly told him to ring the button for an aide, and she would help him. He was emphatic. “NO, I want YOU to help me.”  Just as calmly, I told him that I wasn’t dressed, inquired what he was wearing, told him it was fine for a casual dinner, but if he wanted to change, he was going to have to call an aide. I told him that I would call him at least an hour before I was coming to get him, to give him time to get an aide to help him with his bathrooming, and I would see him later.

“Wow”, I thought to myself. Being an Alzheimer caregiver to my husband has been challenging and heartbreaking to say the least, but it has taught me quite a few lessons, some of which are:

I can say . When I am exhausted and overwhelmed, I do not have to say yes to every request for help from everyone, putting my own physical and mental health at risk.

I am strong and capable on my own, but I know how to ask for and accept help. When the PT’s and OT’s offer to ferry my father back and forth to my house from the ALF, I accept. When my cousin offered to come with me to the dealership and make the deal for a new car, I accepted. It was a HUGE relief to sit there quietly while he bargained and argued, and got me the car I wanted. I even managed to plaster a grin on my “dumb blonde” persona when the financial manager told me how lucky I was to have such a wonderful man to take care of me.

Go with the flow. I realize no one who follows my blogs believes I have learned this lesson, but I have. My Type A, anal, perfectionist personality HAS undergone a change. Ask Dr. Sadowsky, our neurologist, who, when he first met me, thought I was going to be more trouble than Sid. He said I have been a good student. Absolutely nothing I do is going to bring back the husband I had, so I have learned to adjust to the one I have. Yes, as the weekend blog attests, I am continually surprised at the changes that Alzheimer’s Disease brings upon him, but I DO adjust to them. I no longer expect to wake up one day and have my strong, capable, passionate husband driving me off into the sunset.

Do not argue. This lesson has served me well with people who do NOT have Alzheimer’s Disease. As I learned not to argue with my AD husband, whose reasoning button is broken, I have learned not to argue with the unarguable. There are some people who are immune to reason; I recognize it immediately, and I do not waste my breath trying to prove my point. That includes my father, who has done things the same way for 92 years – his way – and often cannot be persuaded to accept a different method. Fine with me. No arguing.

Life is not fair, but you make the best of the hand you are dealt. I used to be envious of those who had more money, opportunities, better health, but it all balances out in the end. Some have more money than they will ever spend, but bad marriages and poor health. There is always someone who has it worse off than me, and everyone has their trials. Such is life. I try to focus on the positive. I do not always succeed, but the effort is a good one.

Nothing is forever. In the four years since we joined our support group, two husbands in our close knit circle of friends have died, and their wives have managed to move onto a new life. Every bad period in my life eventually came to an end, and I learned from each of them. I would have preferred to learn life’s lessons an easier way, but I did not get to choose. I did not get to choose in this case either, but dealing with this disease has made me stronger, wiser, more patient (yes, as bad as I am, I am more patient than I was), less regimented, and made me understand why I was given a good sense of humor.

MESSAGE BOARD TOPIC: What has Alzheimer’s Disease taught you?

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