You would think that by the time an elderly loved one with an advanced disease condition needed our intensive hands-on caregiving help, they would comply with seemingly simple routines like bathing and maintaining personal hygeine, but that is often enough not the case.
On the opposite side of the coin, you would also expect someone in your care to not be concerned about graying hair and want to color it with a youthful tone, while a basic request from a tired spousal caregiver to bring in extra help is met with resistence from their care-needing husband for no apparent good reason.
But these are exactly the dilemmas what fell out of my e-mailbag recently. Let's see what these issues are specifically and whether I can help.
I am so embarrassed, and I don't know what to do. Mom has Alzheimer's disease and still lives at home with Dad. She can do most things for herself, but we do keep her away from the kitchen stove. The problem is that she doesn't take a shower or bath. She says she takes them, but no one has seen her walk into the bathroom to do it. When we suggest it, she makes excuses and says she will do it later. Jean, she smells awful! She has never been this way before and we can't understand it. What is her problem?
Elaine H., Albuquerque, New Mexico
Mom did the same thing, and I felt the same way you do. What I found was that for some reason that is difficult to understand, people with Alzheimer's disease fight bathing. Mom never stopped fighting it, and your mother probably won't, either.
As her disease progresses, you will find that you, your father and any other members of your family will need to take over doing things for her. Bathing is just one of the tasks. Someone needs to give her a bath, and it may take two of you to safely and effectively handle the chore. Don't take any chances in a tub or shower. If it isn't safe, a sponge bath will do.
You must get her washed because you want to prevent her skin from breaking down and developing sores or infections. For me, it was easier for someone else -- a CNA (certified nurses assistant) -- to bathe Mom than for me to do it. That's probably because I was her daughter, and I had too many reservations about doing it. You might find the same thing -- but don't give up the primary goal of keeping up her hygeine routine.
I have this strange problem. My husband is completely dependent on me, and he has COPD. He can get into a wheelchair, but that is all. I don't know if he has gone crazy, or what. He had gray hair when we married at the age of 30. I have never seen him with hair any other color. Now he wants to die his hair brown! Has he gone crazy?
Maureen G., Bakersfield, California
No, he has not gone crazy. Perhaps he didn't like turning gray so young and has always wanted brown hair again. He might need something to pick up his spirits, and trying brown hair might be the answer. The color can always be changed back if he doesn't like it. Before doing something permanent, why don't you try a temporary hair color? It is easier to change back to gray.
I am so miserable. I am stuck here taking care of my husband. He has ALS and can't do much to help himself. I need to get out, but can't. We do have one person who comes in to help every day, but I end up doing almost everything, even when she is here. She doesn't do a very good job of washing him, or anything else.
My husband doesn't see any need to get more help. He thinks the situation is fine and that I should have that person do more when she is here. I do love him, and we are both Christians, but I can't take it any longer. I need more help. What can I do?
Carol S., St. Paul, Minnesota
I'm sorry to hear about your husband having ALS. I sure wish they would find a cure for that disease.
There might be a couple things you should consider regarding the lady who comes in to help:
1. Perhaps you could cut her hours in half and hire someone else to come in for the other half.
2. Then, you might stop doing everything over that the lady does. People don't always do things the way you do them, but their job might be acceptable. The purpose of bathing is to get him clean enough so that he doesn't get skin diseases or sores. Is she doing that?
When someone comes in to help with your husband, why don't you do something away from the house? You do need the break away from caregiving. Take that break when she is there. She may not do things as perfectly as you do, but she is probably doing an acceptable job. If not, then you need to get someone else completely.