Hi. I'm having a bad day. Mum has been really demanding, and I'm finding it hard to cope. I have shouted at her. She lunged herself onto the commode (not to go to the loo) while I was making her lunch, and was screaming that she wanted to go upstairs but could not tell me why. I tried to tell her that it was dangerous but 2 mins later she did it again, resulting in me taking the commode away for her own safety. I took her out yesterday, but it nearly kills me as her mobility is so bad, but I can't just leave her sitting in the chair all day. Dad is at work 3 days a week still (he's 76), and he finds it hard to cope too.
Seems like mum is deteriorating again as her speech is quite bad now and her mobility is bad too. We have 2 carers to wash and dress mum in the mornings.
She seems like she has a form of dementia or something similar as she wails a lot and gets fixated on something and keeps on about it and there's no reasoning with her.
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lindsey48
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Lindsey you are bound to have bad days. When I was working with people who had dementia I always found a way to distract them. Is your mum still able to eat sweets. I found if I gave them a sweet that they need to unwrap it does seem to divert there attention from what they thought they wanted to do.
Perhaps you could get a wheelchair to take her out in just a quick stroll round the block would tire her out.
If also might be an idea to have a chat with her gp he might be able to help. Remember there is always someone that will have an answer. Big hugs to you. Janexx
All I can add to the advice already given is that loss of abilities and confidence does leave people frustrated and frightened. This may explain to some extend your mum's behaviour. Taking her out in a wheelchair will be easier for you, if mum does not want to sit in it, let her walk as much as she can but take the chair with you so that she can sit down when tired. It's always a step/a day with PSP.
I find it helpful to read about dementia. There are many paperback books out for caregivers living with someone difficult to manage and all of the different behaviors. Online is also good for tips. Sometimes just touching them and reminding them that you love them and ignore what they are saying. Sometimes it is best to turn your back and walk away saying " when you scream It is hard to hear you; please talk." I've in the past even said things like "Listen! You need to be very nice to me because you NEED ME!" It depends a lot how confused they are. But it is not good to have screaming...But really read read read and reread. I can list some of the books I've found very helpful. But just go to Amazon.com and search for "caregiver" and Living with Alzheimer's..or dementia.
Sometimes it helps me to think about little kids and how they continually want attention. When my husband says "well I'm going upstairs" We don't HAVE AN UPSTAIRS. And he wants me to stop what I'm doing and give him my undivided attention. Sometimes I scream at him, sometimes I cry, sometimes I give up, sometimes I write a post on this website. Also he is often terrified about not knowing what is going on and needs jusy to be touched or hugged. Sometimes I'm reassuring and always I say "Don't worry, everything IS UNDER CONTROL" The under control seems to calm my husband always.
Remember she doesn't know why she wants to go upstairs and in no way understands what is dangerous. Again think about babies or little children. Also the really great thing is to redirect them...like "Why don't you help me a bit with this" then give her some task...like folding napkins...or spreading the peanut butter..or setting the table if she is not too confused...or just carrying a plate to the table..It depends on where she is mentally.
As to bad days...most of them around here are bad, irrational, frustrating, exhausting, guilt making days. And sometimes I just can't stand another moment and I call a friend and talk. Or lock myself in the bathroom and cry.
Keep writing. Actually a Journal (Diary) helps. Just write it all down and draw mean pictures and say all the bad things you'd like to say but don't and buy crayons and make big scribbled drawings.
And always know you are already doing a great job! How many people would even try to do what you are doing. And YOU ARE NOT ALONE.
Husband did not want transport or wheelchair. We insisted on an occasion when grandchildren came to town to go to the giant Iowa state fair which he loves. And you know, he admitted he got to see more and didn't get so tired, and that really broke the ice. We can now go to car shows, etc. things he really missed or struggled through. WHEW, another hurdle! Hang in there!
My wonderful mother died 4 weeks ago and at the end she could not speak or walk and showed signs of dementia. The best advice is not to take it out on her by shouting. Pls take time to sit with her and talk to her. It is her illness making her that way and not her personality. The moment you get impatient, the more frustrated she will get. Try taking her out for a walk in her wheelchair, or go for a coffee. Enjoy every minute with that wonderful person-you should be both smiling (hard I know but ahe appreciates your support!)
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