Any suggestions: Can anybody help me with... - PSP Association

PSP Association

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Any suggestions

maeve profile image
8 Replies

Can anybody help me with this problem. My sister is in a nursing home - the care is wonderful and staff are kind. My sister keeps ringing her bell constantly for the staff, when asked what she wants or needs. The answer is "I don't know". The staff have tried everything to find out what the problem is and drawn a blank. I have tried talking to her and explaining the consequences of keep doing this. This behaviour is totally unlike her. Is it frustration, or attention seeking . I am at a loss, have tried everything, feel I am banging my head against a brick wall. Has anyone out there having a similiar problem and maybe has an answer to explain this sort of behaviour. Help

Maeve

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maeve profile image
maeve
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8 Replies
dllera profile image
dllera

Hi Maeve -has your sister been diagnosed with PSP? There is a stage of OCD types of behaviors - my dad went through this and would call for someone constantly - but once something gets in their head -it can be hard to get it out. I would suggest that the nursing home get her up and move her from where she is sitting to another spot. This should help a bit. Make sure they understand that she is not trying to be a nusance but it is definately part of the disease.

Danielle

maeve profile image
maeve in reply to dllera

Hi Danielle,

Thanks for this insight. Yes, she has been diagnosed with PSP, 3 years ago.I will try your suggestion and speak to the nursing home.

Maeve

peterjones profile image
peterjones

i know this sounds a bit harsh but couldnt you take the centre part of the bell out just for a couple of hrs and ask the staff just to keep an eye on her to see how she goes she might realise that she has to do without it sometimes you have to be cruel to be kind peter jones australia

DianneH profile image
DianneH

I think your sister is probably just needing to see someone now and then I think they do feel afraid from time to time. My mum does the opposite, she gets up and does things instead of ringing her bell and this is dangerous and one of the reasons I had to give in and put her into care. It would be understandable for other people to say that they suffer from dementia but I think it is purely their inability to communicate or to realise that they can't do the things they want to do. I don't think the answer is to remove it. But I think the other suggestion of moving her to a new area occasionally may help. Mum loves to talk but because it takes so long and she is so quiet people sometimes think she is not able to have a conversation and she needs to be with chatty people to keep her responsive and aware of her surroundings.Have you thought about a volunteer visitor? Ask the PPA if there is someone in your area as sometimes our loved ones just want to have someone chat to them.

jimandsharynp profile image
jimandsharynp

I'd suggest that if they check on her and she's ok in every respect and has rung the bell a few times within minutes that they remove the bell for an hour then replace it. I'd ask myself "how necessary is the bell? Are they checking often enough that a bell isn't required?". If they check often why the bell. Is she in with another patient who could control the bell if she needs help? Maybe have the bell a little less convenient and slightly out of reach, or sight, so it takes effort to get the bell. Just a few thoughts but I'm not in your position so it's tough to judge.

Jimbo aka Jim P

SheilaN profile image
SheilaN

Hi, if absolutely everything (including urine infection, skin integrity problems, build up of wax in her ears, even the smallest possible iritation) has been ruled out I would agree that removing the bell but keeping an extra eye on your sister might break the habit. If she hasn't been there long she might be feeling insecure or confused.I hope ypu can find a solution.

Take care

Sheila

m-ms profile image
m-ms

My Mom did the same thing. Only when we would check on her she would want to use the bathroom. She wouldn't always "go", but it was what she needed to do, for what ever reason. Many times it was frustrating but at the same time, it would, as with so many aspects of this disease, break our hearts.

Removing the bell scares me. An emergency can arise, and she would be helpless.

This is one of the reasons she is at the facility and we pay to have professional good care. And if they realize it is part of the disease they should be understanding and be able to do a quick check on her. With my Mom it was a phase of the disease, and she no longer does this anymore.

peterjones profile image
peterjones

from peter jones i did say try to take away the bell for a couple of hrs to see how she goes i never said take the bell away completely i think that would be cruel and if the staff kept their eye on her for that time to see how she went i just want o let you know i have psp and have had it since 2004 they thought i had motor neurone for two years and was treated for it and was told to go home and get my affairs in order what a shock that was \\ now my speech has has got worse and i fall over backwards so its not an easy life but you have to go on and make the best of what time you have im sorry about your sister and her problems

but im glad she has nice people around her and i thank them\\\\ peter jones australia

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