My husband is in a care center. I haven’t been able to see him since March. I speak to him every day on FaceTime. He has a hard time communicating. His carers are saying that he is very fidgety and has anxiety. His personality is not really given to this condition apart from the disease. Can someone describe this condition, by their personal observation of what it might look like to be fidgety and have anxiety?
He is an invalid with PSP. He sometimes will not quit trying to get out of a chair or out of bed. If he did get out, he would fall. He does not “connect the dots” that he can’t physically do it.
I would appreciate anyone to share their experience in this area with me. It’s very hard not to be with him. It appears to me he’s getting worse. Thank you so much in advance!
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Moojuice219
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My husband was an endless fidgeter - could never sit still . I had a basket of fidget toys which we found really helpful rubiks cube Type toys and a fidget quilt for in bed. This really helped to keep him calm and prevented many a fall.
The fidgeting in folk with neurological illnesses can quite often be caused by agitation and anxiety. Could you discuss with his medical team any medication that might help? Impulsiveness is another symptom of PSP and I’m afraid ‘connecting the dots’ as to the dangers of getting out of his chair/bed and risking a fall will just not be apparent to him; the disease has robbed him of that reasoning. It must be so very hard for him given that he has lost the ability to communicate to get his carers to understand his needs. Hopefully, they will be fairly clued up on this illness because understanding the various symptoms will make life easier for not only them but for him as well. These diseases are very challenging for not only the sufferer but also the carer. There’s a lot of information on this forum covering different topics of the disease, which can be accessed through the search box and a trawl through past posts will offer a lot of information. That said, we are here to support you as much as we can, some are sufferers, some are still caring for a loved one, for some the journey is over; we all have in common the fact that we completely understand and although it’s not a one size fits all disease there’s a heck of a lot of advice to be had on here spanning the years.
I do hope that you can get something sorted out to make life for your husband a little easier and also to ease your anxiety especially as you have not been able to see him.
My heart goes out to you. My mother has Alzheimer’s and has been rushed into hospital. She is exactly the same. Covid is causing so much damage to people, regardless of if they get it! Add PSP or any other neurological disease into the mix and it’s not a pretty picture.
Sending big hug and much love from a very exhausted Heady!
My husband's fidgeting and anxiety were almost always caused by constipation which was a persistent issue with him right up to his last day. Like Tippy, we also tried to give him something to hold. He would work it kind of like a baby will do with the edge of a blanket. He couldn't use his hands for anything else, but seemed to be able to do that. Maybe it reassured him that he could still feel? I always wondered. . . . .
My mother with PSP has a lot of restlessness. She will lie down but want to get up frequently and not know what she wants to do, so after I help her up, she will sit on the edge of the bed and then lie back down. This could happen several times during a nap. She used to be restless at night too but fortunately that has calmed down.
Recently I figured out that she also frequently awakens and raises her head to see if there is a caregiver sitting in the room. If no one is there that is when she starts trying to get out of bed, to look for someone. So I’ve started spending more time in there, or if I see her looking up I call out and say, I’m right here, I can see you, you can go back to sleep. I also got her a hospital bed that lowers close to the floor, to reduce risk if she does try to get up.
Another thing is when she sits down on the toilet, she’ll hold the grab bar and stand up and sit down multiple times, up and down, up and down, before she finally sits down and has a BM . I don’t think she has any control over the bouncing up and down, but it does make me crazy so I sit just outside the bathroom and turn on some music.
On the sofa watching TV she will sit forward, lie back, sit forward, lie back. I check if there is something I could do to make her more comfortable but the restlessness seems to be part of the disease along with the impaired judgment about one’s capabilities.
Occasionally unusual restlessness and fidgeting in bed in someone who is ill can be a sign of shortness of breath or low oxygen levels so sometimes that needs to be checked.
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Seeking some Advice on PSP
Incontinence
Sleep medication
