Clothing for PSP patients: My wife has PSP... - PSP Association

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Clothing for PSP patients

jimandsharynp profile image
31 Replies

My wife has PSP and currently wears "normal" clothes (pants, t-shirts, female tops, house dresses. She is using Depends. I can see the day coming when I will have to move her using a Hoyer lift. We have the lift and the sling part has a hole in it for potty purposes. What clothing would be best when we use the lift? I see a problem removing the Depends once she is in the sling of the lift. Should we switch to adult diapers instead of Depends? Anyone with experience or ideas I'd appreciate your help.

Jimbo

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jimandsharynp profile image
jimandsharynp
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31 Replies

Hi JIm,,, it's all very difficult when we got to the hoist stage I gave up on trying to keep normal clothes happening

mainly using adult nappy sheets on wheelchair and a sarong from waist down and normal shirts on the top. With winter a few months away you have made me start thinking about what to do will be interested in everyones ideas

Also we find the hoist fabric wears down the skin it contacts so I have made some soft covers to attatch with velcro, has made the world of difference. Suzy Nth Qld

cabbagecottage profile image
cabbagecottage in reply to

Hello Susygid . I am glad you mentioned about the skin and Velcro .

I am having a big problem with handling the straps . Never in my life have I had a skin problem my hands are as touch as old boots but since doing this they are dreadful the palms of my hands are very dry and the skin is breaking down and sore it's from all the tugging . I have put something around the wheelchair handles to softened them when I push . I had though about getting some nightshirts and either cutting the back off at the waist or at the side seems .

I Ts dreadful when you are not incontinent but lack of mobility makes it impossible . It has been the bane of our lives for a long time first of all when he was more able to walk although with great difficulty , when I thiNk back how did I manage , or him , and now back and fore the commode .

in reply tocabbagecottage

try using cotton gloves for a while and maybe some paw paw ointment on your hands, common issues as we are washing hands so much and perhaps we are a bit run down.

cabbagecottage profile image
cabbagecottage in reply to

haven't heared of paw paw cream and yes we are washing hands so very much aren't we. it's a vicious circle .

cabbagecottage profile image
cabbagecottage

8 am in to similar position with my husband so will be very interested in how others have coped with this problem

We are us ing a mobile lift at the moment but I cannot move it myself but manage to take is wheelchair to th hoist raise and changes to a wheelie commode .

I am awaiting now for two ceiling hoists one over his armchair the other over the bed . I won't have to lift to transfer then anymore

We have been using a sheath and bag for him to wee but I have new succumbed to usIng pads at night and during th day if I go out for a few hours.

I have been looking at clothing now ready for when he uses the ceiling hoists . At the moment I have slitting open the front of his trouser to gain access for him to wee. This is no easy task because his penis is retracted and when on the commode in particular will not reach the container . I have a gadget cant think of a better word for it lol it's a tube attached to a bag , I then place a rubber cup shape over the penis .It is in a very restricted area . While in his chair or bed works fine maybe this will work better with the new lift .

So come on now all the men put your thinking caps on Do u know of a Better way to manage his problem .

Back to the clothing will wait with bated breath . I know you an get some trousers with flaps front and back .

I must say that I worried about using pads thinking it would impair his skin but so far haven't found that so .

oops54 profile image
oops54 in reply tocabbagecottage

hi there my husband has a catheter attached,so that is one less problem i have to worry about, regards christine Ballarat vic

cabbagecottage profile image
cabbagecottage in reply tooops54

Has he bothered with any infections at all , they keep telling me there would be , I think it would be much easier for him and myself

oops54 profile image
oops54 in reply tocabbagecottage

yes he did he has had three infection, but the catheter was changed ,he dose not get them any more as he takes an antibiotic every day has done for the last eighteen months. regards

Mum wore dresses and skirts right up to the last few weeks of end stage before going into nightdresses for comfort. The hoist slings didn't cause a problem and skirts and dresses seemed fine in them . You get used to positioning things for various uses. I think it's important to consider the wearer's comfort but also their pride . mum preferred to be clean and dry so didn't mind using pads . But in the end adult incontinence pants were best for her. Best wishes x Dianne

jimandsharynp profile image
jimandsharynp in reply to

Dianne, did your lift have a hole in it for potty use? If so hoe did you manage to get incontinence pants off or out of the way of the sling she was sitting in? Anyone else please respond with ideas. I guess I need a more detailed explanation if you have time.

Jimbo

in reply tojimandsharynp

It did not have a hole, the way the slings wrapped round left a large area where you could actually remove things before lowering the hoist. There are several types of slings as far as I can tell. These were more like 2 giant straps so they could be positioned before you lifted.

oops54 profile image
oops54

hello jimbo ,my husband is high care ,we have two carers come in to shower him,on the other days I help with one carer we take him to the toilet in a wheel chair, we both help him to stand I pull his pj`s down then his pull up`s down ,then i clean him up as he is incontinent.then sit him on the toilet put new pull up`s on and pj`s .I find this is much easier than using a hoist a hoist would have been way to hard we are all done in ten to fifteen minutes.This PSP can be a very degrading illness for both of us . good luck christine ballarat vic

cabbagecottage profile image
cabbagecottage in reply tooops54

We stopped using the toilet whe it became too difficult to get in and out of the toilet and unfortunately carers are not 24/7 Re they . I Made up a splash guard out of plastic at that time .Any port in a storm .

cabbagecottage profile image
cabbagecottage in reply tocabbagecottage

Whenever I ask about a catheter they tell me that they can cause infections .

cabbagecottage profile image
cabbagecottage in reply tocabbagecottage

It's all the small everyday problems that take the time no sooner than you step off the roundabout you are back on it again ,

jimandsharynp profile image
jimandsharynp in reply tocabbagecottage

Cabbage, did you use a portable potty or normal toilet? How did you manage to get him on and off the potty? Did he wear disposable pants and how did you get them up and down? Thanks for your help. Please, more details.

Jimbo

cabbagecottage profile image
cabbagecottage in reply tojimandsharynp

jim , It started with the OT supplying us with a wheelie commode chair , he was still sleeping upstairs at that time and I would transfer her onto it and wheel it into the bathroom . they are suitable to wheel straight into a walk in shower at that time he was able to take a few very gingerly steps . When it became impossible to manage anymore to transfer from the wheelchair and through the toilet door downstairs I. started to use it while downstairs until that time we had been managing to use the toilet . The commode chair has a potty that slides out from below while he is still sitting on it to I have access below to cleanse his bottom . What we do for love !!LOL

The next step was they brought him a standing frame but he was unable to cope with that didn't have the strength .

So they brought us a an Arjo Sara 3000 lifting hoist . He isn't incontinent so can ask if he needs to go .

We are suppose to use it at all times to transfer him but I cannot move and turn it , I now use it by transferring him into wheelchair and then pushing it to the hoist , strap him in and raise him , he isn't really taking much weight the knee part of the hoist appears to take the stress of this away . . While raised I change over to the commode chair while sliding his trousers down much easier also to check the bottom for any sores . He doesn't wear underpants just his trousers . I get the soft jogging ones .

Then I lower him and bobs your uncle . It's at this time I am finding it diffilcult for him to wee . He was using a convene and bag but that kept on coming off and causing more of a problem I think I have written that I am now using a different gadget with bag attached . We don't get too many accidents . When he has finishes I clean him and reverse the raising etc .

You might even manage to push him in the commode chair back and fore I find it a bit too heavy . Have even tough about having the carpet taken up and laying a wooden floor In that case I might even be able to manage to push the hoist myself .

I have asked them now if I could have the ceiling hoists instead which should stop me having to lift him when transferring . . I am worried about how I will get on with it but the OT seems to think it will be ok . I am able to roll him over in bed and get his trousers on , we do have carers but I like to and he like it if I see to his bottom half . The lifting is my only problem . I will let you know how we get on with the dressing and undressing when we get it . I started to have the carers to help with his getting in and out of bed . I have done most of the rest before they come

jimandsharynp profile image
jimandsharynp in reply tocabbagecottage

Cabbage, what a wealth of information you have given me. Can't thank you enough! Jimbo xox

cabbagecottage profile image
cabbagecottage in reply tojimandsharynp

Jimbo who would have thought we would be talking on this subject with complete strangers , I sure you never did but needs must ,have you ever seen a continence nurse , they are very helpful and supply pads for you Glad to be of help I think it's what we all like being able to do .

jimandsharynp profile image
jimandsharynp in reply tocabbagecottage

Cabbage, yes, I find we talk about lots of things on this site. I'm thankful that we can and don't have to soft-petal things. It's good to get right to the subject root.

tursiramad profile image
tursiramad in reply tojimandsharynp

Hi, Jim. I hope I can meet you and your wife next Support group meeting on February. My mum use disposables underwears. I do transfer her from the wheelchair to a commode over the toilet. That help her because she can rest hers forearms on it. When I have her standing back to the toilet I lift up her home dress and hold her at the back side with my left hand, with the right hand I pull down the underwear and then sit her at the commode. To get back to the wheelchair when she has finished, I do help her stand up and using my knees to hold hers, I hold her home dress with one hand and with the other hand I pull up the underwear. I'm doing this for now, I don't know for how long this will be. She is getting more weak and more difficult to hold her during the transfers.

Ruth

jimandsharynp profile image
jimandsharynp in reply totursiramad

Ruth, thanks for the input. Hope to see you in February. Jimbo

jimandsharynp profile image
jimandsharynp in reply tooops54

Thanks for your help. What is your plan when he can't help by standing?

cabbagecottage profile image
cabbagecottage in reply tojimandsharynp

the ceiling hoist should help with this

cabbagecottage profile image
cabbagecottage in reply tooops54

Do you love in a bungalow or flat , I cannot manage to get the wheelchair into the toilet , although now my husband couldn't stand long enough to be able to do all that . Do you live in the uk . We live in Wales , at what point did they arrange the catheter . I am sure it would make things such a lot easier for us . We were using a convene but because he is so retracted it was difficult to put on and would also slip off . Became more trouble than the worth

cabbagecottage profile image
cabbagecottage in reply tocabbagecottage

The last reply was for oops54 lol

oops54 profile image
oops54 in reply tocabbagecottage

hi cabbage no we live in a house we are from australia. but we did have our bathroom and toilet room renovated,so we could fit him in.good luck . christine

greyhoundmom profile image
greyhoundmom

Hi Jim,

Here's a different type of lift that doesn't use a sling setup...

rehabmart.com/product/quick...

We're not quite at the lift stage yet either...not looking forward to it.

-- Connie

cabbagecottage profile image
cabbagecottage in reply togreyhoundmom

That might be the best bet for Jim at the moment , all depends at what stage anyone is . .

We had been really pushing ourselves to manage on our own which is in some ways good they t

advise you to keep your mobility but don't kill yourself doing so like we were . the OTS won't reccommened them unless it is necessary .

We have brought his bed downstairs now it is a hospital bed all singing and dancing . I have put it in the dining room , got rid of an armchair and a sideboard they went to charity and have bought a smaller chest . in place of it . I still sleep upstairs , O wasn't looking forward to it I slept on the settee for a while in fact I have had pretty grotty virus and have stayed where he can hear me downstairs .

You do get used to it I have strapped a remote doorbell to the side of the bed which he can press if he needs me along win a baby monitor it works for us . My husband is eighty and I am 77 I will do everything I can to continue looking after him in the home we have been living in for 48 yrThankfully he isn't a large man and is still very good natured .

jimandsharynp profile image
jimandsharynp in reply togreyhoundmom

Mom. That is amazing! Thanks for sharing. Its another option. After a night of rest my dear wife is easier to handle today. I appreciate you post. Its people like you, willing to share, that make this site great. Jimbo xox hugs

cabbagecottage profile image
cabbagecottage in reply tojimandsharynp

Jimbo it's easier said than done but try not to think too far ahead . Although I understand you want to be prepared and know what tools are out there if needed .

Not everyone is the same by any means .

My husband legs were collapsing a very long time ago , He never wears slippers and I make sure his shoes re secure . It does seem sometimes as if they have no feeling in their legs or feet on top of tht the feet can sometimes distort .

In my husband case he has had extremely bad kneecap pain and has a patella femoral replacement in the one knee . This took quite a while to recover from .

It has taken me and him quite a while to understanding how to deal with lots of things , including recognising if he is receptive at any given time . By that I mean he might ask me to assist him in adjusting himself in his chair or even transferring him but he is unable to so at that time . Left alone for a while I can return and he does it more easily . Has anyone else found this so .

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