I've been trying to find a solution to an issue we've been having which only started a few nights ago - bed stripping. My mum (has PSP - aged 64) strips the bed every night and I was wondering if any of you have had similar problems or if you have any suggestions as to how to deal with it. At first, it was just the duvet cover but this morning we found she's moved on to the pillowcases as well...
Before this started we (my brother and I - we've both been caring for her during this quarantine) noticed she's been fiddling and fidgeting a lot more, like pulling/stretching on her clothes when she's sat down watching tv, and fiddling with the hems of her clothes. To help with that we give her a teddy to hold and play with, but it doesn't really work at night because as soon as she puts it down she'll forget it's there to help.
I tried to search the posts on here but nothing really came up so I figured I'd make a post, I've been trying to do a bit of reading and bed stripping is also common in autism - I read it's due to sensory input which is interesting so I'll definitely be looking into the more. I feel like there's still so much more for me to learn about, even PSP so if anyone has any helpful links, please do drop them below! Anyways, I'll stop babbling! Yeah, if anyone has had any similar problems and have any suggestions/solutions, please let me know, I'd appreciate it so much
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artycarer
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Hello! Sorry, I don't have a solution for you, except to say that my guy went through a similar phase relatively quickly. Chasing symptoms is such an exhausting part of the psp caregiver's life, but everything is a stage, and I can only suggest trying not to fret and to step back from anything that you can. Best wishes, ec.
My hubby was a constant fidgeter. I had looked at a weighted bed cover which is apparently like being hugged. I never got around to buying one but might be worth considering.
I had a bag of fidget toys we always had near they were used throughout the day whilst sitting in chair, car, hospital appt etc they really helped though his concentration was limited to around 20 mins it kept him calmer.
we've been thinking about a weighted blanket but obviously because of current delivery situations (amazon could take up to a week to deliver) we weren't sure if it'd be worth it, but i think we will in the long run - my mum's only about half way through the stages so, it could be a good investment! thank you so much for you reply! xx
I tried a weighted blanket for a while but it didn’t work for my husband. He didn’t like the heaviness. Everyone is different.
I would find his side of the bed totally pulled apart in the morning. He doesn’t do that now. He scratches himself and we give him CBD oil to help calm him as well as medication to help him sleep at night.
Tippy has given you a very useful tip - fidget baskets are often recommended for folks with Alzheimer’s. Their fidgeting often comes about due to anxiety or agitation necessitating the need to be doing something with their hands. My husband had a thing about constantly going to the bin to throw something away even though there was nothing in his hand, he’d even do it when we were out and I’d have to go in search of a bin. He had to shake it off his hand rather than just drop it in as you would do normally. Now, this could have been due to the hallucinations that he experienced but I think not as it was always so regular - it always started each morning after his shower and then intermittently throughout the day. It was easier to go with it than fight against it. Do have a chat with her medical people when you get a chance just to see whether it may be anxiety induced and she needs something to calm her.
Best wishes to you and your brother as you try to cope - sometimes we just have to go with the flow and accept that these things are caused by the damage the illness is doing to the brain - heartbreaking doesn’t sum it up.
my mum does that too, she won't have much to throw away but feels like she HAS to throw it away in the bin, even though the main bin we have (which is in the kitchen), is kind of a mission for her to get to when she's sat in the living room on the sofa - she'll often abandon her walking aid just to get the bin which isn't ideal, we've had a few falls in that area so we're trying to think of ways to make it better! I will see if I can have a chat with the doctors for sure about it, that's a good tip, thank you so much,
Ah i couldn't put it into better words Hils, thank you so much for you help! Hopefully it'll smooth things out in the long run x
Have no experience with this - but wonder if a blankie would help.
If the feel is important, maybe a few pieces of different textured materials to trial which is most favoured.
Made my grandson a satin one which went everywhere with him.
Also think the weighted blanket is worth trying. Or just a wheat bag and see if that helps to hug close to her face, or for fiddling with. Warm or cold.
Hope you find something that helps. It doesn't help now to say it is a fad that will pass! - but it will, no doubt.
These are our experiences or informations on this regard after 8 years after the first symptom of PSP:
1) Flushing of face, neck, and upper arms. Patient can burn-up in a room over 18 degrees. The condition is probably HYPOGLYCEMIA which can occur to people suffering a rare condition as PSP. The patient need a sugary snack of something like biscuits mashed up with tea and or cup of tea with a little sugar to bring the blood sugars back to normal.
2) Temperature (fever) often sky high and then back to normal. Sweating quite a bit and can wake up in the morning with pyjamas wet. Never sick even when temp was over 100*F (38*C). Keep hydrated. For caution, ask the doctor to visit.
3) Aproximately from the 4th year from the first symptom and increasingly we have observed that she feels warm, even with noticeable sweating but at the same time with quite cool feet or hands.
In this situation, she tends to remove blankets, sheets, diapers and clothes.
Especially after taking food and going to bed for a nap or night rest, she complains systematically and persistently until we free her feet from any coat and cover her body with just a sheet. This is how she falls asleep (after taking a Lorazepan pill at dinner). We always keep a dim light in the room and the sound of a low volumen radio with music.
Once she fall asleep we cover her body (except feet) with an additional light quilt or a thin blanket, leaving free space around the neck and head. We turn off the radio and make two night visits to correct situation if necessary.
This is how we are achieving quite nights so far.
I hope these suggestions give some favorable solution to you.
Welcome to the forum but I’m sorry that you have a need to join.
I’m not experiencing bed stripping issues but my husband has decided that the top sheet is a foreign object. He kicks the sheet to the end of the bed and then he gets tangled up in it. I have no clue why this is suddenly an issue but I got rid of the top sheet simply to avoid conflict. I also stopped using a cover on the comforter. I just wash the entire comforter when necessary.
The original weighted blanket is called “magic blanket”, that’s the one I ended up getting and it is very helpful. Here’s the link with the story of how it came to be invented.
The blanket is 15 pounds and my husband can’t lift it. Every night I tuck his arms inside the weighted blanket and it prevents his hands from reaching for the stars throughout the night. He says that the blanket is soothing and when I put it on top of him he gives me a little humming noise as if he’s being hugged. I believe that it calms him down and his jerking movements seem to be less frequent.
I wonder if your mum might be more comfortable with softer, maybe flannel sheets?
Today I noticed that hubby was staring at his fingers like he’s never seen them before. He was turning them over and over again. I asked him what was so fascinating and he couldn’t answer. I handed him a glass of water and that took him out of the trance. Fidgeting is very common with him. During meals he’ll try to pickup the smallest speck of food from his plate. It’s such a small amount that I can’t even see it. But he’s very pleased when he gets the sprinkle of food all of the way up to his mouth. Now that I’m writing this I’m wondering if he’s doing this because it’s easier for him to swallow the smallest of portions? Maybe it’s time that I start puréeing his food?
Basically there are a lot of firsts with PSP. We all scratch our heads and wonder what the heck. Everyday is new and somewhat mind blowing but we figure out what works and what doesn’t. As soon as we get used to how I things are going, well... it won’t be long before we’re scratching our head again. Just live for today and keep trying new things. It just makes life more interesting.
Hello Artycarer - I use a weighted blanket at night. This, and clonazapam are producing better sleep results. On the upside... I guess it's better stripping off blankets than p-jays or clothing. The downside... it's more difficult for my cat to get under the covers. I don't mind the cattitude she gives me about it, as she sleeps about twenty hours out of a day as is.
I thought when my husband 'worked' the edge of clothes, etc. that it was like something a baby would do with the edge of a blanket while sucking its thumb or finger. I think a baby is discovering touch and it's comforting somehow. Maybe as someone with PSP is losing their sense of feel it is also comforting. As someone said above., this stage didn't last long. You'll soon be on to another stage.
My husband thrashes and pulls all the bedding out at night too. I tried to figure out what meds needs to be adjusted. Bad enough that I have reverted back to baby mode: light sleeping, becoming immediately alert for any noise. Getting up from bed, rollator motion, thrashing.. EXHAUSTING. I am sure my mood would be better and far more empathetic with more sleep..oh well.
What is far more disconcerting is him becoming more oblivious to what I am asking of him. Its usually about things he's doing that are in direct opposition to his safety. I think he's just not processing. Then he gets sensitive about my tone..ugh. then I have to gently let him know I am just trying to keep him safe, stop a fall, stop a choke.
Thank God for yoga..keeping me sane and putting my feet up before dinner and I crash for 20 minutes. Thanks for letting me vent.
Next question: I live in So. Cal. Who comes in to make an assessment of what I need for my husband in our home. Do I call for palliative care and is that through hospice, which is doc. ordered.. it's been challenging trying to reach the neuro during covid but I will persist. Suggestions?
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