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Posted: February 28, 2005

Practical Caregiving

What to Do When "Things Change" in Caregiving

We all know that "things change" during our caregiving experience. Mom or Dad don't think the same way, can't do what they did before, and seem to stubbornly resist the extent of care that might be needed. What's more, things change for caregivers too -- the stress, the hours, the demands and emotions.

But what happens when you are faced with a specific situation brought on by such changes? Millie is finding out that her mother suddenly needs round-the-clock care, and Emily is seeking a solution to the caregiving stress that has her crying all too often while her family does not help. These are among the latest problems in my e-mailbag. Let's see what can be learned.

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Dear Jean:

My mother is 82 and still lives alone, but I am starting to worry about her. She is in the beginning stages of Alzheimer's. She has her days and nights mixed up, accuses the rest of the family of stealing from her because she can't find things, thinks she sees children playing when there aren't any and believes the radio is actually "talking" just to her.

I check on her every day, and she is still able to fix herself meals and take her medicines. What I am most concerned about is the fact that she tends to wander. The neighbor saw her walking two blocks from her home. When he stopped and asked her where she was going, she told him she was going home. But she was walking the wrong direction! There have been a couple other times she wandered away, and someone had to bring her home.

What can I do about her wandering?

Millie A., Hartford, Connecticut

Dear Millie:

Alzheimer's is such a horrible disease. Mom had it. You are right in being very concerned about your mother's wandering because as bad as it seems now, it will only get worse. The mother-in-law of a lady I work with disappeared for 18 hours. She was found an hour away, and she didn't remember how she got there. You must do something right now to prevent that from happening to your mother. The result could even end up worse, of course, if you don't move quickly.

I can see some major potential problems you may not be aware of; I know them because Mom had Alzheimer's disease. I imagine that things now are not even remotely like what they have been all your life, and it's so hard to change our thinking patterns. It's so hard to face these facts. I saw Mom's mind deteriorate, but it took me a long time to realize that it wouldn't stop. When she did something unusual or dangerous, I relied on what I had remembered as her manner and thought that would be the only time it happened. But it just isn't and wasn't that way.

Someone with Alzheimer's or dementia can be very good at covering up their memory problems, but only for a while. They know they are not doing things right, and they know they are not remembering clearly. It embarrasses them, so they try to hide it. So would you, and so would I. This is natural.

Your mother has her days and nights confused, gets rid of things but doesn't remember doing it, sees children when they are not there, thinks the radio is talking to her, and worst of all: she wanders. There is no way she is safe living alone. It's time for you to arrange to have someone with her all the time. Even then, she might get away because no one can stay awake 24 hours a day to watch her. It's such a scary thing, and she could put herself or someone else in danger. Mom started a fire on the stove and couldn't move or say anything. We were just lucky that my son walked in at the right moment to put it out. Only after it was out could she shout, "Fire!" You don't want your mother to do something dangerous like this.

I think you should definitely contact your local chapter of the Alzheimer's Association. They can help you understand the disease and the problems associated with it. They can also give you ideas of what to do, but the decisions will always have to be yours. She is your mother and her care and safety are your responsibility.

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Dear Jean:

I'm looking for some kind of support. I have worked as a CNA (Certified Nursing Assistant), and my family thinks that I should be the one to take care of father since I already know how to provide nursing care. Sometimes I get real stressed and cry a lot. I can't get away, and my sisters don't help at all. Do you know of a website where I can blow off steam and vent a little?

Emily V., Columbia, South Carolina

Dear Emily:

You do need someone to talk to who has been or is in your situation, someone who won't judge you because of your feelings -- which are normal, I might add -- and won't try to tell you what to do. The forum on our own website CaregiversHome.com is open, and we encourage people to use it as a meeting place to share their feelings and questions in postings for others to read and answer. It's there to help people just like you. Other people may have terrific ideas, but until you can learn those ideas, you can't decide whether they would help you or not. Try it out by clicking here.

Also, is there any way you can have someone come in once a week so you can do something you enjoy? It would make such a difference. Call your local churches, hospitals and your friends to see if they would do this for you. Even a couple hours would help. There are some people who actually want to help on a volunteer -- no cost -- basis. They enjoy helping other people. You can usually find them through churches.

It is fairly common for one child in a family to take care of their parent. For some reason, your family either can't or won't help. Sometimes it's because of their responsibilities to their own family, and sometimes it's an emotional thing. Either way, they are unable to help. Try not to be bitter toward them because bitterness won't help you and it could endanger your relationship. You are the one who will always know you did everything you could to take care of your father when he needed your help. Perhaps your family even wishes they could help, but they haven't told you.

Taking care of your parent is extremely frustrating, stressful, and I do understand why you might cry a lot. Just remember, you are not alone.

© 2005 Pederson Publishing, Inc. All Rights Reserved.
Commercial use, redistribution or other forms of reuse of this information is strictly prohibited without the prior written permission of Pederson Publishing.

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Please send me your questions, comments and issues regarding the practical side of caregiving at ASKJEAN@caregivershome.com, and remember to take advantage of our professionals and experts in the Ask an Expert section of our website. You'll find it in the left column on our homepage.

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