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
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.
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.
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.
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.
Because after she passes, if you have given too much of yourself the void this leaves won't be much harder on you.