Today's ( 10/9/07) blog topic is about letting our spouses be all they can be, while still keeping them safe and able to understand whatever situation they are in. It's not easy to stop them from doing things for their own good, while trying to save their self esteem at the same time. I invite you to read the blog and tell us how you handle this.
When M was diagnosed with AD five years ago, her doctor said the strategy would be to keep her out of a nursing home as long as possible. That has worked OK for us. He prescribed minimum dosages to suppress intolerable things like scary nighttime hallucinations (seroquel) and frightning manic depressive episodes (paxil). He prescribed aricept and namenda to slow down AD.
We are retired and I can care for her 24/7. She continued doing things that she liked as long as she could. Over the years her activities faded away like a snowman melting in the sun. She stopped driving voluntarily years ago. Most recently in stage 6, she spends the day looking at pictures in her gardening and cook books. She gets hopelessly confused easily on the simplest of tasks. She naps a lot and sleeps 12 hours per night. She has gained weight in the last two years and can no longer wear her closet full of pretty clothes. We still sleep together on our king sized bed as we have for 41 years.
My wife, Kathy, and I have been married for 38 years. She has had Dementia since 1996. She has been the foundation of our marriage all these years and she is such a joy to be around. I have always been the pessimist and she the optimist since I have known her in high school. Even with this dreadful disease, she still tries to keep an upper lip and looks for the good things in life. Like most people, our marriage has had it's share of problems but we have worked hard, raised 3 wonderful children and planned to have a happy retirement together. So much for dreams. I have watched her slowly but steadily deteriorate over these long years and my heart has been torn apart on many occasions. I have always tried to let her live her life as if nothing has ever happened even though we both knew better. As long as she had her handwritten notes stuffed into her pockets and the ones hanging throughout the house, she did fairly well and she felt that she still had a purpose in life. However, over the past year, she has steadily and quickly gone downhill. No more doing the daily tasks of life. Her ability to do the laundry, dishes, and cooking are lost; telephone conversations ended--she just became flustered and anxious. Kathy would, and still does, not let me out of her site for more than a couple of minutes, following me everywhere throughout the house; then she lost the ability to care for her personal hygiene; Lastly, her speech is now nothing more than a mixture of various words that has no content. Along with other small things such as hoarding and hiding many things like her toothbrush, hairbrush and her clothes as well as my clothes and other goodies, and not able to take her medicines by herself, Kathy has pretty much become a zombie, waiting for me to tell her what to do every minute of the day. But I love this wonderful woman and I am committed to try and make her as happy as possible for as long as she can still take a breath of air.
It's THE constant balancing act...balancing what I need to do to keep things running versus trying as well as I can to do so without Jeff feeling pushed around, bulldozed, and controlled. I've said before, if you ask him I'm certain he'll tell you that the control-freak aspect of my personality has become exagerated with age and stubborness, and that's all there is to it. In truth, apart from my own life there's very little I'd choose to be in control of...other people most especially. But it's easier to live with his attributing the whole thing to my personality quirks, than to think I can somehow get him to comprehend why I do the things I do.
The best advice I received when Ralph was diagnosed six years ago was "pick your battles" If it doesn't hurt him or someone else I try to let him do what he wants. It has saved a lot of arguments. I tried to help him take his jeans off last night when they hung up on his foot and he didn't like that at all, so I do try to get him to do as much for himself as he can. It is heart breaking when he tries to talk or do something for himself and he cannot. He doesn't do much any more except pace and try to figure out where he is now. He was my best friend and I miss him everyday. He does not know who I am, other than I am that "nice lady that takes care of him".
My AD husband was allways a very independent indivitual. He also has a stuborn streak. When he was in his earlier stages I let him do as much as he insisted he could do. At times this costed us money because he would take something appart and loose or misplace some parts. So I had to replace the item if we needed it. Noe he is in the stage were he needs help sometimes putting his clothes on in the right layers. I let him do it, even though it brakes my heart to watch trying to figure out what comes first etc. I wait untill he askes me to help him. He usually realizes that something is just not right it he tries to put his shorts over his pants. This is so hard to watch, it makes me want to cry. Then came the time when he would do nothing but sit and sleep or just look into space. I decided to try Adult Day Care to give him something to do and be with other people. I'm still working on his adjustment to the day care. I have to wean him off of me. He is allways behind me like D.S's wife is with him. We are together 24/7 and it takes a toll on me as well. I have to take care of legal matters but he doesn't want to go with me and I don't want him alone in the house because I'm concerned about his safety. So while he is in daycare I try to take care of all this, in case he doesn't adjust, in with case I will not make him go. The try very hard to involve him in activity, but so far he has been very stubborn and just like all AD aflicted people he does only what he wants to do. They are very patient with him. I hope he will adjust, it would be the best thing for him.
It breaks my heart to see my spouse not be able to do and understand all the things he used to. This morning when I called him from work, I was telling him there was a certain DVD laid out for him to watch today. I told him "It's in the den." Silence from him. Then me (trying again) "It's in the computer room." Silence again. Then me again "It's in the room where you sit in the chair and watch TV and listen to CD's." He still didn't understand. I told him not to worry about it, that he would figure it out when he walked through the house. How much longer can I leave him at home alone while I go to work? This worries me. We've tried adult daycare three times and he says he's not going back. He just turned 63 so is younger than most of the people in the daycare and it depresses him to be there. The bonus to him going is that I know he is safe and it is located only five blocks from my workplace. I'm praying that someday he will accept going to the daycare. Meanwhile he is still at home by himself during the day when I'm at work. Twice lately he has asked me if I'm done working. When I told him I was not, that I still needed to go to work, he got so depressed. This is such a sad disease. He is most comfortable once I get home and he follows me from room to room. He tries to tell me something that happened and can't get the words out. I can usually figure out most of what he's trying to say and end up helping him come up with the missing words. He tries to be "normal" when we're around friends and family and I think he believes he is. Sometimes he doesn't realize that what he is saying doesn't make much sense. Other times he does realize and tries to laugh it off, but that also depresses him. I think the most important thing to remember is to praise your spouse even at times when you normally wouldn't have thought to praise or thank them before they came down with Alz. I thank Chuck as often as possible for doing some little thing that is so simple but saved me a bit of time...maybe he folded the towels or filled the bird feeders or emptied the trash (which he does all the time). We've never had such clean wastebaskets! Praise makes him feel so good. Being a man, he also wants to feel like he's taking care of me and I thank him often for taking such good care of me and our kids through the years. He glows. I think some of this should be under other topics but I guess the topics probably all overlap at some point.
Thank you for reminding me about praise. I am often so tired and short-tempered that I know I don't praise him enough for the things he is able to do for me around the house. He doesn't think the house chores are worthwhile - he wants to be able to go out and work. Whatever he does in the house is one less thing I have to do, and it's a big help. I wish he could see it that way.
I agree that it helps them to still feel as if they are taking care of us. Robert has always been that way. He's always wanted to take care of me. He still does. So, I've found that if I ask him to do things for me, it usually helps him feel better.
I'm still wrestling with the driving issue. Robert has been doing so well since he has gotten up to the theraputic doses of Exelon and Namenda. I've let him drive a little again. He does very well. We are down to just one vehicle so this helps. He doesn't have access to one during the day to get out by himself. He drives to church and when we go out to eat, etc....
It has really boosted his ego. He will run to the store for me if I need him too. I have to make a list for him.