C hasn't dressed/undressed himself for about three months so imagine my surprise when I woke this morning to find him up, dressed and drinking a cup of tea he had made. Of course his bed was wet but that paled into comparison. What a pleasant way to start the day. And sun is shining after four days of rain so I may even catch up with drying laundry today. How simple things make such a difference.
A very pleasant surprise: C hasn't dressed... - PSP Association
A very pleasant surprise
21 Replies
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What did you slip into his Horlicks? Can I have some!!!
Lots of love
Heady
in reply to Heady
Actually Heady we wouldn't mind some Horlicks - not available here!
Well done "C" lets hope he keeps it for a while. Good start to the day. Janexx
Unfortunately the good start has not continued. He went back to bed for his morning nap, for which he doesn't undress completely, and ten minutes later he and the bed were wet through again. Clouds covering sun, wet laundry draped everywhere and a mountain queued up next to washer. Back to normal with a vengeance. Oh well it was lovely for about half an hour!
Heady in reply to
Oh well never mind. You have one more treasured memory! S woke up saying that he felt very confused today, to me he seems fine, if not a bit more alert than usual. Maybe it's because I made him get out of bed and sit in the sunshine (yes, it's actually out here in UK!) and do some reading, instead of having his morning nap! Perhaps I should make more of an effort to make him do something after breakfast, instead of sleep!
You'll have to think hard to see if something different had occurred to get C up and about!
Where abouts are you by the way?
Lots of love
Heady
in reply to Heady
We live in a village just outside Fethiye in south west Turkey. And since I last posted it has started to rain again so the day is a total wash out!
It must have been good while it lasted.....just didn't last long enough. Wishing you many more good moments.
X
All I can say is thank god for tumble dryers. Never wanted one never needed one but I'm pleased I got one. Think I would of left home by now without it. Most days I have two kylies at least one complete set of bedding and two outfits plus towels flannels and pj's and that's without my stuff lol. Janexx
Oh, it's so good not to be alone with this! He feels better, too, when I tell him that this incontinence is something almost everyone is dealing with - a downer, but NOT HIS FAULT.
Tell him not to worry we just make a joke of it all now. It seems to me that sometimes as I get his pad off he starts wetting so it's quick quick to get him sat on the toilet. Even sitting on the toilet he can still manage on the odd occasion to be positioned wrong and it shoot over the seat and onto the lower half clothes. The carer's got him on the glide comode over the toilet and he managed to aim thru a half inch gap between the bottom of the glide comode seat and the top of the toilet. Hope if you read this to him he can see the funny side of it all. Janexx
What am I doing wrong? It seems like every time I take S to the loo, most sprays everywhere bar where it's meant to!!! I really feel this is the worst part of PSP. I can cope with the rest, but the constant wet pants, trousers, bed, I struggle. Advise please!!!!!
Lots of love
Heady
in reply to Heady
Oh Heady I totally agree. The incontinence is so hard to cope with. And I have no advice to give whatsoever. After yesterday's good start he managed to wet the bed, and himself, four times in twenty four hours thus using our entire stock of rubber undersheets, plus wetting two duvets. Today the sun shines and I am frantically doing laundry so he can have a bed to go to again. The struggle goes on.
Heady your not doing anything wrong it just seems to be part of the male make up. Have you got kylies (the padded washable drawsheet) for the bed I find that most days that does save the sheets etc. When I put his pads on I put the larger part at the front (was trained that way) because men wet at the front.
is he spraying as you take the pad off ie fresh air and standing triggers the action. If so hold the pad till he is half way down (easier said then done) if he is not getting himself in the correct position make a routine. Everyone tells Brian make sure Boris (penis) is tucked think they forget to do that themselves. My next trick I'm going to try is distract him while I get him de-padded and on the toilet. Hope this helps. Janexx
in reply to jzygirl
Jane I meant to ask what a kylie was when you mentioned it yesterday but I forgot so now that' s cleared up. But no kylies in Turkey unfortunately. However your tip about putting the diapers on back to front shall be tried out shortly and I should have thought of that, it is obvious. Keep the top tips coming!
jzygirl in reply to
Pattz you might be able to get the disposable ones from the same place as the pads. Think they would be called bed pads. If not look in the disposable nappy isle in the supermarket because they do children's version for when they 1st come out of nappies. They not so absorbant as the washable ones but if you put a towel or half an old sheet over the top they do help save all the bedding because they have a waterproof back. Janexx
in reply to jzygirl
Jane the disposable ones are here and we tried them when the incontinence first kicked in last June. He just threw them out of the bed so I stopped using them. However, we've just had a long conversation about how we can better handle it and I shall be trying the 'bed protectors' (literal translation of Turkish name) from today. Your washable ones sound much better but they ain't here. I have also used old towels in the past and shall be trying them again too. I plod on.
Jane I recognise all of those situations. Good to know I'm not the only one struggling here. As for a dryer, it would only be needed on a handful of days per year here but, wouldn't you know, those are the days when I need to do most laundry. The struggle continues.
I am fortunate that John isn't incontinent but still use apad at night . I buy the larger ones . I do the same thing place the larger side to the front . makes the world of difference . I have even cut one in half and placed it between if he has. Been extra heavy. all this saves me having to get him out of bed .
I also use Kylie draw sheet but then place a puppy trainer pad on top these are also waterproof Then put the sheet on top .
We have had the extra problem of the penis becoming retracted .Its all sent to try us .
while he was still able to use the toilet I made up what I called a diverted. I cut out piece of plastic which I would hold against the inside of the toilet to guide the flow . I didn't always work but helped .
now Of h happens to be still dry in the mornings . I quickly undo the pad and use a different gadget . I ordered a rubber pubic pressure cone which o have attached to a tube and bag . I can manage to place the penis in and hold against him I tilt the bed so that it flows downwards . . I doesn't work while in his chair because he needs to be fully inclined so then I hoist him over a commode chair . the Ot has been marvellous and tried a few chairs before we came up with the most suitable .
it took me a while to get use to hoisting and handling the trousers but I am now ok generally with it
if you have trouble when dressing to pull the tops down properly at the back and front . Cut up the sides on both sides depending ho long waisted the person is of course . my husband very short so it has Ben a problem . you can thn pull the back right down and the front covers the front as well . I have cut them but yet got round to stitching them , !!
the puppy training pads are cheaper
what barrier creams do you use , The nurse gave us Cavilon cream but this made the skin red . I thn tries Bepanthem baby barrier cream and this is great . no more soreness .
Barrier cream - gallons of Sudacrem. And just back from town with bed protectors, sunny day so most laundry dried and we are organised once again. Plodding on.
Incontinence does seem to be a issue with psp that doesn't get mentioned! I'm caring for my mum who is living with the condition. I referred mum myself to a continence advisory service and they've been very helpful. Mum wears the pull up pants at bedtime and thanks to continence referral we now get those on the NHS. Several Layers of sheets on the bed helps too! Mum sometimes wets herself without saying anything or if she laughs Etc but you just have to make light of it. Mum was taking Tropsium chloride as that's meant to help stop night time urination. It worked for a while then didn't anymore. Mum also prone to UTIs so have to be aware of that issue too. Mum also has commode next to bed. For gents this looks good but I'm not convinced by the female version
Mum also goes from chronic constipation to diarrhoea. I increased the fibre in her diet but now if I give any laxatives like movicol or dulco lax she goes to the extreme! Feast or famine 
been the odd accident in B&Q too! But you have to laugh about it as nothing else you can do!
Fingers crossed our loved ones have few toilet needs tonight and we all get some sleep! 
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