I'm finding it difficult to take each day as it comes and to deal with my dear and very difficult Mom (98). Any advice?


My mother has been living in an old aged home in a little town in south Africa. I am the only child and I live in Sweden, and am over retirement age but continue to work to support her.
She was very ill in July, when I came to visit her, so I decided to stay and be closer to her because we all thought she would die within the month! I am without an income and relying on my pension and tithing blessings!!
She has bounced back, eats like a horse, is as stubborn as ever, and still demanding to leave the home...
I have arthritis and could not physically take care of her myself, or afford the cost of full time caregivers, so I cannot consider having her at home.
My problem is that she insists on climbing round, over or through the cot-side on her bed at night and sometimes has falls. She cannot sit quietly in a chair, but stands up and wants to walk (get out) every 5 minutes - I just hate having her in a restraining chair when I'm not there. I can understand that she is frustrated over losing her independence, but she refuses to (or cannot) accept the situation and does not accept the staff's efforts to encourage her, involve her in crafts, visiting others, reading, listening to music or news or sports - her prevrious greatest interests. She just sits and is miserable!!
Another problem is that I cannot decide on what is best ... I want to spend a lot of time with her, but is this disrupting her routine? Should I leave her with the caregivers to help her eat? Should I just visit 2 - 3 hours a day instead of 5-6?
Basically - I just don't know what to do for the best!
She has trouble talking - cannot verbalise or write what she thinks, but she seems to understand almost everything I talk about, if I do it slowly and in short sentences.
I would be SO grateful to get any advice on how to deal with this situation.
I have planned to be in South Africa with her until end of January and then return to sweden... I have to prepare her for this as well...
Thanks so much to anyone who has taken the time to read this and give me some feedback :)
Fern Girdlestone

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Sorry I meant to say, will be much harder for you.
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I like the answers you have been given so far. It is really important that you spend less time with her.
Because after she passes, if you have given too much of yourself the void this leaves won't be much harder on you.
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The need to move around makes me think of Restless Leg Syndrome - it like you're just compelled to be in motion to relieve it. My husband has this - we call it his "walkabouts". The meds really help this.
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You pull back gradually, and you avoid visiting while activities are going on. By the time you are ready to leave, she should be fully acclimated.
You also get her proper meds for agitation and to help her sleep at night. Work with the head nurse to make that happen.
You are a wonderful daughter to take all this time for her.
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Serendipity, now that - thank God - your mother has recovered and looks set fair to be around for some time to come, perhaps it would be a good idea to rethink your plans altogether. I agree with others that your spending - goodness! - practically the whole day at your mother's care home probably is stopping her settling well. On the other hand, you're only in the country at all so that you can see her, so I imagine it would feel wasteful not to spend as much time with her as possible. So, why not return to Sweden much sooner, resume your own life, and plan to return to RSA for a week's visit around Christmas and the New Year, or something like that?

If you do decide to return to Sweden, you can maintain communications by putting arrangements in place before you leave. Select the people at the home your mother seems to take to best and ask them, person to person, if they could very kindly set aside a little time to read your mother letters from you - three times a week, or whatever seems about right. Then you can send her little newsletters, photographs, post cards, cuttings and so on which might help to keep her memory of you fresh. Perhaps you could also get her a pretty pin board for these to be displayed on where she can see them easily, too.

Remember that many families do find themselves having to manage long distance relationships and they would all agree that you can only do your best. It's not as if you can pop back and forth for short visits; your mother is evidently not in any danger (may she live forever); so you'll just have to figure out the best schedule you can that can be carried on indefinitely, and do your best to find alternatives to actually being there.
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You're spending too much time with her. She has no need to find other things to do, as all she has to do is wait for you. Visit much less. Give her an opportunity to bloom where she's planted!

When you say she won't sit still but wants to be walking or moving around? I immediately think of her having some uncontrolled pain. Dementia often means that people can't vocalize that to you, but it doesn't mean they aren't uncomfortable. Pacing or walking about is often a symptom. I'd talk to her doctor about that...see if a mild prophylactic pain reliever on a regular schedule might help.

For her getting out of bed, we faced the same thing with my mom. I solved it by raising the head of the bed AND foot of the bed so she was in an awkward position and doesn't have the strength to maneuver from that position. Every once in a while, I'll find her with one foot over the bed rail, sleeping.
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Fern, You are not responsible for your mother's happiness. You can't make her into something she isn't. You were expecting her to keep going downhill, but she is rallying. Good for her. Perhaps she can't help trying to get up from bed and getting out of a chair. She might have be experiencing some dementia. Know that you are the daughter every woman wants. You have come to her side when she needed you to, but your life must go on. It's her choice to participate in activities and events at her new home. I do think you should back off from all the time you spend with her. She has no reason to interact with other people if you are there all the time. Know that when you go home in January, you have done everything right and everything you could.
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You can also have a talk with the aged home's coordinator/counselor. What you just asked, ask her/him. Get some feedback from them and do a game plan to try to get your mom more involved with others. After brainstorming with Jeanne's suggestions and talking with the home care personnel, set small goals for your mom. Don't overwhelm her or it would backfire. Start out small and work your way to the more involved or overzealous activities.
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Why don't you try visiting less? And perhaps schedule it to coincide with activities you could do together. For example, my visit to my mother's NH tomorrow will be during their "beading" activity and I will help her make a bracelet. Maybe you could exercise with her or do crafts or watch on the big screen television a sport she used to like. Try, "Mother I don't know how you stand it in this room all day, but I'm bored. I'm going down the hall to play bingo. I'll bring you along to keep me company and bring me luck." or "It is time to go listen to the young concertina player they've brought in for entertainment." Don't exactly give her a choice.

What do you do with her now for 5 or 6 hours?

If you could continue to spend large chunks of time with her for the rest of her life, that might be OK. But since you need to leave in a few months, I think I would try to help her integrate into the life of the environment she is in.

It doesn't seem like you have much to lose by trying to cut back on your involvement for a few weeks. She is miserable now. Making a change MIGHT be an improvement. Worth a try, maybe.
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