Eddie had Alzheimer's and I kept a journal. This was one story in the journal. Eddie had very few of these days. AI had learned how to cope but those at the Veterans Home did not know him like I did. He was such a sweet man to the end. He died in 2009.
Living with Alzheimer's
Dec. 16th, 2007
Alzheimer's is a strange disease. It is scary and people don't know how to act around a person with the disease. They can't handle it. Don't know what to say. But what happens, when they shun that person,not knowing what to say and how to communicate, they shun the spouse too.
I found that out when we lived back in Hurst. When Eddie was slowly getting worse and not going to church any more, and we were not able to go to our usual activities, where we used to go as a couple, someone would ask, "How is Eddie?" and I would say, "Well, not too good". They might ask what was wrong, or might not. They would say, "Oh, tell him hello for me and we miss him". That would be it. But anyone come see him? No.
I even called the church once to ask if some of the men in the church could come visit him. None ever came. Just one of the pastors, a good friend of ours.
If it had not been for our good friends, Wanda and RD, who lived down the street, we would have been totally isolated from everyone. RD would come by and visit Eddie and even take him shopping at Sam's. Eddie loved RD and trusted him so much.
But, most of my friends deserted me, not intentionally, but maybe because they were too busy with their own lives, or maybe because they didn't know how to deal with someone whose husband had Alzheimer's. I don't know. I do remember when my book came out and Kristi had a book signing party for me at Sullivan Street in Roanoke, only a few of my friends came and none of Eddie's. People I thought were good friends, well, I never heard from them.
Eddie had one good friend from his work at Texstar, Paul Clower, who called Eddie quiet often, and even came to visit after we moved to Roanoke. He called after Eddie's memory got so bad, he really could not remember Paul too well. That is a good friend.
When we moved to San Antonio to be closer to family, I was hoping for closer relationship with his brother and sister and nieces and nephews. For someone with Alzheimer's it is about daily or weekly contact. But, even his own sister did not ever come to visit him, during those two years. Even when we would go visit Johnny who was in the last stages of COPD, (Eddie always wanted to go visit Johnny, when i would ask him. "yes, I think we ought to go see him) and Helen would come by to visit Johnny, she very seldom talked to Eddie. I knew it was because she didn't know what to say. She is his only sister and she would sit in the dining room visiting with Johnny and hardly talk to Eddie. I felt bad for Eddie, but I probably felt bad for me. When we left, Eddie could not remember by the time we got home who we had seen.
But, it is because people don't know what to say to someone whose spouse has this disease. They will ask, "How is Eddie. Does he still know you?" Before Margaret got sick back in October, she came down to go with me to visit Eddie often. She knew what to say and how to act. I know if Gerry lived here she would too. Both of them have compassion for people who are sick.
An old school friend called today and talked. She said her husband died about 7 years ago. After he died, a weeks went by, she never heard from their old friends. For over a year. She said they probably didnt' know what to say. As she said, when she never heard from them, then she was deserted too.
There are so many lonely people out there. Especially Alzheimer's sufferers. And their spouses. The spouses more than the one who has it.
You have a husband, but you don't. Tonight the nurse called to say that today at lunch, Eddie got put out at the guy sitting at his table, and threw his glass of lemonade in the guys face. The doctor was there, and thought Eddie was so disturbed, he ordered Ativan for him .... only to use as needed....she called to get my permission to give it to him....as needed. This is the first time I heard he was agitated. All the reports I have gotten from the nurses, is how sweet and congenial and easy going he is.
I told this nurse that I had not heard of him doing anything like that before.She said, "Well, I read in his chart that sometimes he has slapped at the aide when she is trying to get him to go to bed, or something." Gee Whiz. That doesn't sound like anxiety to me. It sounds like I feel at times. Irritated and put out. And the way some of those guys act in his area, I would like to throw a cup of lemonade at them too.
This really upset me tonight. This has not been a good day, plus the Cowboys lost! I would not even watch the last half, it was so bad.
I have an earache and my head hurts. I guess it is a sinus problem.
Well, I had a pity party today, and no one came.
This makes me think of dreams I have had for years. I am always dreaming I am lost and can't find my family. I am always looking for a way to where one of my loved ones are. For the last 10 years I have dreamed about getting lost, not able to find my car, and I am always walking, looking for the car and my family. And many of the dreams, they have gone off and left me. Lots of the dreams it has been Eddie who has gone off and left me. Now I understand my dreams. God was warning me. I am still looking for my husband. But he is no where to be found. Well, he is somewhere inside that frail body, and when he sees me, and his face lights up and he says, "Well, there is my wife", I know he has found me. And I guess I have found a part of him.
A revealing look into the life of the spouse of someone who has Alzheimer's. I think keeping a journal and writing about it has helped you deal with a very serious problem. So many spouses have dealt with it without sharing their experiences and probably feel very lonely as a result. Your way of doing it is much preferred and will help others who read what you write.
Many years ago, my grandmother had Alzheimer's for five years. At the time, I lived 2000 miles away in California but remember stopping to see her along with all my aging relatives the three times that I came home in the nursing hospital where my uncle placed her and paid for her care. The first time I saw her, she was very glad to see me, recognized me, and even though told not to do it, got a chair and jumped up on it to get something to show me out of the top shelf of her closet. The last time I saw her, she sat in a wheelchair, cataracts graying over her eyes, smiling and acknowledging nothing.
I often recount that when I was paralyzed at 20, I immediately lost half my friends from both college and high school. I believe it was because they felt embarrassed around me and didn't know how to act. Eventually, I made friends who didn't see my paralysis as a problem. I lived alone a long time not expecting close friendships made by activities and children. I make an effort every year to contact all my remaining friends whether they contact me or not. I believe everyone, as they age, loses contact with their social networks unless they continue to keep them up.
I don't think I've read a story as honest as yours in a long time. I agree with your being baffled when friends and love ones are not there when you really need them. I also attribute their reaction as a loss of words in an awkward situation. During the trials you've gone through, a support group may have helped to connect with others like yourself, but you were probably too busy and involved caring for your husband. In doing so you empowered your own strength and resilience. Many blessings to you!
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Living with Alzheimer's
