Dear Family Advisor
My mother's caregiver is too controlling and won't take direction from us.
Last updated: May 26, 2008
My mother has Alzheimer's and has had a live-in caregiver for seven years. He has been excellent with her, but he's quite eccentric and has put demands on our family that have become more and more restrictive. Recently he added a "no talking" rule, meaning that we're not allowed to talk to him in her apartment unless it's necessary to discuss something important. And, no, I'm not kidding.
My sister is staying there helping out, and he banishes her to her bedroom in the evening because he says she "distracts" my mother. He won't let us have any say in our mom's care. As I type this, I realize it sounds ridiculous. We've let it go on far too long because we felt that he was providing very good care to Mom, but this has gotten outrageous. What should we do?
You're right. No caregiver should go this far, and it's good that you recognize this. It sounds like he's not only taken over your mother's care -- he's taken over her home and her life. In fact, he seems to be in a power struggle with your family over what's best for your mother. You need to have a frank talk with him about it, and that means you have to accept that you may need to let him go -- or that he'll walk out.
First, though, I suggest that you make sure he doesn't have access to your mother's finances. I don't mean to suggest that he's stealing from her, but you need to make sure your mother is safe on all levels. If you end up needing to terminate him and he's disgruntled, you want to know that he doesn't have a way of taking it out on your family or your mother.
Then set up a time to talk to him about the situation. Plan it with him ahead of time and make sure you have help for your mother, if necessary, so that he's relaxed and not distracted. It would be good for you to have support, too -- your sister or husband, for example.
Most important, you need to let him know who's boss. If he has sensed your reluctance to fire him, he may have taken advantage of it to assert more control. While making it clear that you greatly appreciate all he has done for your mother, strongly remind him that he works for the family. You can do this in a firm, nonthreatening way, but you shouldn't back down, even if he threatens to quit.
Start with the no-talking rule. Tell him that this simply won't work; it's essential that he communicate with you and your sister on a regular basis. If he'd prefer to have a regular check-in time to discuss issues, set up a time that's convenient for him and you. But he needs to know that you will still call him, and your sister will ask him questions, whenever either of you wishes to. If he's very busy with your mother and it's not a good time for him to talk, he can get back to you as soon as possible.
Let him know that your mother's home is her home, and you want it to be a place that's comfortable for the entire family. As long as your sister is there, it's her home too, and she's free to move about and see your mother as she wishes. If seeing her gets your mom more stimulated than he'd like, or even fidgety, that's okay. That's part of family life. Remind him that your days with your mother are limited, and you and your sister both intend to be with her whenever you can.
If you wish, you could encourage him to talk about his frustrations or needs. Ask him why he thinks your mother shouldn't see your sister in the evening. He does spend more time with your mother than anyone else, and he may feel that following certain protocols are in your mother's best interest. Discuss with him whether there are other ways to handle these issues. You may choose to agree to some rules or boundaries, but that's your decision, not his.
As any family caregiver to a parent with Alzheimer's knows, it's an extremely difficult job. He may have instituted certain rules and schedules to make his life easier. Having lived with your mother for several years, he may also have come to feel that he's more family to her than her real family. This is understandable, but not acceptable. If you really value the kind of care he provides, it might help to juggle his schedule or make some other provisions that allow him some breathing space. Think about what might be best for all of you. With your sister there, for example, perhaps he doesn't need to live in your mother's apartment.
On the other hand, there are caregivers who take advantage of their situation, and his behavior may merit closer scrutiny. It may just be a case of him spreading out and feeling like he's in charge -- or it could be something more alarming. It's good that your sister is also living at your mother's apartment, because she can monitor what's going on. This and your conversation with him can help you better ascertain the situation.
I hope that you'll be able to resolve this issue with a firm conversation, but if he chooses to leave, that's OK. I know how hard it is to find the caregiver who is "just right" for both our parents and us, but if he can't abide by your wishes, he's not the right one. Don't let anyone push you out of your mother's life.
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