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Posted: February 08, 2004

Practical Caregiving

From the Mailbag: Why Won?t My Spouse Listen!?

Married life and life-long companionship is a series of ups and downs, and certainly no bowl of cherries. And it is quite normal to expect our spouse to make the right decisions. After all, they typically have, for years and years. But various illnesses can cause people to make decisions that create dangers to themselves. Marguerite found this out and explains her dilemma in the following letter from my e-mailbag. When dangerous turns occur, we need to do one of the hardest things we will ever do ? we need to change our expectations of our spouse.

After reading Marguerite's story, be sure to see what Agnes is trying to deal with in helping a friend who is saddled with a mother who keeps her house off-limits to his friends. But there is a way around it, I think. See what you think.

Dear Jean:

My husband has a lack of oxygen going to his brain, which causes him to not be able to think very well. Last night, when the electricity went off, I asked him to stay in the chair by the computer, while I took the one flashlight we had nearby (there were more in the house) to light candles. When I came back into the room where I left him, to light his way to the bedroom, he was up and walking in the total darkness -- to find his walker, he said. I just about "lost it." But outwardly, I tried to stay calm, and told him to follow me to the bedroom. (The walker was in the bedroom, anyway.)

When the electricity came back on, he raised the head of the electric bed and got up to get a drink of water. That's what he said. But when I came into the room he was on his knees, reaching under the table where the surge protector unit was, to turn it on. I told him I could easily have done that. He said, "Yeah, I know." Then as I turned to bring his walker in, while he was partly in a standing position by bracing himself on the table, he fell and was sprawled on the floor. His head was within a quarter inch of a heavy glass bowl. I was so upset by the time I got him into a chair, and I made him promise to stay in that chair until I brought his walker. All the damage his fall seemed to cause was two bruised toes.

Worrying about him doing unsafe things like these examples, takes its toll on my energy. I am worn out just writing this to you. Help! Marguerite, Grandview , Missouri.

Dear Marguerite:

Any change will cause your husband to get a little confused and start doing things he shouldn't do any longer. Your husband used to be totally in control and now he isn't. That is very frustrating, and finding a way to deal with that problem is very challenging -- for you and for him.

You need to do one of the hardest things you will have to do -- accept the fact that you can't trust him to always do what is right and safe. Things are different now. You need to take control of things that you probably have been leaving up to him.

Do everything you can to make sure you don't need to leave him to go to another room in an emergency. Think in advance about everything he does and everything he needs. Look around the rooms he lives in. And don't put temptation in front of him that can spur him to get up while you are in another room, even briefly. Remove anything from his rooms that could become a danger to him, you or your home.

I don't know why his walker was not in the room he was in, but it should always be where he is. That may mean that you have to carry it into the room and he may laugh at you, but that's all right. It's safer that way ? you know that now.

You should have more than one flashlight in each of his rooms so you don't have to leave him if the electricity goes off. Never leave a room with lit candles where he is and don't place them too close to your husband, even when you're in the room. Each room he lives in should contain everything basic that he needs and everything you need to take care of him. That does mean duplicating some items, but safety is much more important than having to buy two water pitchers instead of one.

I don't know if it is possible, but it might help if you can get him to think about how things affect you. Put the emphasis on your peace of mind instead of on him not doing something. Tell him you need to relax more in order to be able to help him when he needs it most. Tell him this ?peace of mind? will help do that.

Also emphasize that you don't want him to put himself in physical danger and risk breaking his hip, or anything serious like that. You can remind him that he would be confined to his bed for a long time if he did that, so he should be very careful, listen to you and realize these changes he's experiencing are for his own longer term good -- and yours!


Dear Jean:

I'm concerned for a man in his 50's who started caregiving in 1995 for his father with Parkinson's disease until his father had a stroke and was sent to a nursing home recently. Now, his mother has Alzheimer's and doesn't want anyone to come in the house . . . in spite of the fact that her son is tied to the house because he can't go out.

A couple of weeks ago, he seemed to have an edge of desperation while we talked in the post office. I saw him again yesterday for a minute or two, and as he always had to rush back to his mother who won't have anyone in to visit.

It's really difficult to encourage a person to look after themselves in the face of all these interruptions of life. I also might as well confess that I'm afraid of Alzheimer's, and I'm not good at knocking on doors and saying, "I'm here to play Snakes and Ladders with you, or dust the coffee table, or whatever you want that I think I can do." Getting past my own resistance is a big problem. I'd likely ignore the whole thing if I didn't know that he is so desperate. Agnes, Belleville , Ontario , Canada

Dear Agnes:

You are right that your friend needs help, but the help doesn't necessarily need to come from you. Try contacting the Alzheimer's Association in your area. They usually know what type of help is available locally and they may have a caregiving support group he can slip away to attend.

Someone with Alzheimer's gets to the point that they simply and sadly don't know anyone. They may recognize people they see every day, but they may not know their own spouse or kids.

Your friend might want to force the issue somewhat by having someone come to the house to help while he stays there a few times. She will eventually get to know them and feel more comfortable around that person. Meanwhile, he will be able to decide whether he can trust that person. Then, when she becomes comfortable with that person, her son can go out of the house briefly and return. She will see that he comes back. Gradually, he can increase the length of time he's away -- and begin to regain his life.

All this is not easy or quick, but it can work.

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