Hi, Colin is struggling to stand and get up from his bed now, I’m trying to encourage him to carry on and being very patient, but it can take 15 mins just to transfer from bed to commode.
I know there is going to be a time soon when he just gives up trying.
My worry is what happens then, will he just poo while he’s in bed and how do I clean him up, is it like you would a baby or is there a way that he doesn’t loose his dignity, this is really worrying me, I know he will hate this, any suggestions on anything would be appreciated.
Thank you
Love and hugs
Helen xx
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Helen119
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My son was very demoralized when he first urinated in bed. We found out later he had aspiration pneumonia. Both myself, his paid caretaker, and primary doctor tried to reassure him that accidents happen. After the third time he accepted what PSP was doing to his body and that he had NO CONTROL. We, the caretaker(s) come up with the solutions, not for prevention, but for creating a more acceptable.......outcome.
For me, I think my son pooping in his diaper was far better, much more acceptable, than the many days in-between where he was constipated. My poor son.
PSP takes many things.
When the accidents came we just cleaned up after my son. Can you imagine my son's loss of dignity (55 years old) both for his inability to give notice and second to being cleaned up by his 77 year old mom?
If this is too difficult for you...if you can afford it, a NURSING HOME, can take over the tasks. My mom did NOT have PSP. She had a stroke, but my dad placed her in a NURSING HOME for the two years of her decline. Each day he would arrive at breakfast and leave after dinner....until she died. Her wish was to remain at home, but he felt she would receive better care from both the Nursing Home and himself.
My son expressed a strong wish that he remain at home....and except for the 7-8 days of being hospitalized (with his 2nd bout of aspiration pneumonia) I was able, with God's grace, to honor his request.
Colin wears a diaper, so it can be caught in there, I’m sure he will accept it, as there will be no alternative.
So nice that you were able to grant your sons wish to stay at home,so much nicer to be surrounded by familiarity, Colin’s wish is to stay at home, and I will do my best to have him here.
I so agree about the constipation!!!! So, now we are cleaning up poop. Every couple/ few days , we have a 24 hour poopathon!!! He has finally seen the benefit of letting me help with the clean-up. Poor man. I am so much better at it. I was a granny nanny for grands and know all about Huggies etc...I can change a poopy diaper on a running 3 year old!!!!😆
Hi Helen, get a stand aid. This will help Colin pull himself up and you can then turn him, so he can lower himself onto the commode. It saved Steve the indignity of messing bed. That and being totally constipated.
This is the hardest part of PSP, I wish I had given into it, accepted and not spent so much time fighting the inevitable. Ask the professionals for advice, if he loses control of his bowels, get someone to show you what to do. Don't stay in the dark, like i did. I remember not being allowed out of hospital, until I could feed and change my baby. Not one person,EVER showed me how to do anything for Steve and I let them get away with that. For the sake of Colin's dignity, ask for help, no matter how embarrassing it might seem.
Brilliant Anne, I was wondering if it would be the right thing to ask, I have the hospice OT coming again soon and I will definitely ask the best way to clean him, they are bringing me this thing that sounds like what you suggested.
Your right no one has offered me any insight on how to do things, I have had to teach myself, as you and probably most others have. But you just gave me the confidence(almost permission) to ask, don’t know why I felt I couldn’t.
Thank you for the bravery and openness of your post Helen. I'm not there yet, but I don't think it will be too long. You ask the question I've been wondering...
I'm not sure if I have posted this before ,but in a "sticky situation" try shaving cream.I Made my owns stand for my husband to lean on for cleaning ,very much a life saver.
Hubby was at that stage whilst I still had him home, however he is now in care, 2 weeks ago, and pees and poops in the incontinence aids, when he doesn't have gout, he can use a sara steady to pull himself up with assistance and go to the loo, but he is getting weaker and weaker, sometimes they use a hoist, to get him to the commode/shower chair, sometimes he has accidents, I clean him up when I visit, he has just accepted it now as par for the course, the whole system is going back to the baby stages sadly, especially when his brain is so so good.
Like others have said this is a difficult thing to cope with and you have had some excellent replies. Nigel has the same problem but not all the time so he always wears an incontinence pad as we are never sure when it is going to happen. He is allergic to the elastic in some of them but I have found some great ones that are not too expensive on Amazon. The OT provided us with a Rota Stand Patient Turner which are less cumbersome than the Standing Aids and which I can manage despite having hip problems. Nigel also has a hospital bed with a washable mattress and which means that I can bring him up into a more a sitting position before he gets up, although he still needs help. He cannot rise from lying flat. I hope that the hospital OT will be able to help you. Just ask for everything as it can take ages to get stuff once it becomes a crisis.
Hi Helen. I agree with Heady and if he can't use the standaid then you should ask for help to get a hoist. It doesn't sound to me as though Colin is incontinent yet and it is so demoralising for him to mess his clothes so getting him onto the commode quickly would be my priority. I was horrified at getting hoists but in the end they were a saviour.
So sad to read this but I’ve been there with dad, sadly it will have to be in incontinent pads and yes sadly do everything in there! Really you need carers!!!! In between carers you’ll need to call the district nurses!
When a so called professional told me this for the first time, I went ever so slightly mental and near enough told her to foxtrot oscar!
I haven’t read the other replies yet, so forgive my reply if it appears harsh, my heart breaks for you x
Thank you least you made me laugh with your foxtrot Oscar, I think I’m beginning to realise I will need help, just not quite there in my head yet, strangers coming into my house, doing what I should be doing, and all that, now doubt I will get there in the end.
Helen, one thing I have learnt, the most important job in caring for your husband, is being his wife! To be very blunt, that doesn't include wiping his bum. Anyone can do that. OK I accept that includes you, been there, done that. But only you can tell your man you love him. Let those strangers into your house, let them do the necessary. So you have the time to sit and hold your loved one's hand. My biggest regret is, I didn't do this enough. Too busy trying to fight and control, instead of accepting and loving my husband.
Thank you Anne, I will try and remember what you have said, I can see me being the same as you, trying to control and stay on top of things, I will let them get me some help, as I know this will help me on the long run, and of coarse will help to make Colin feel better, as hopefully like you say I will have time and energy to be, just be, with him
Definitely not superwomen, feel like a walking dead today, feel very worn out. I will ask for some help, I’m struggling now, Colin seems very demanding and very grumpy, I know I need help, thank you
Helen, I would recommend a hospital bed if you don't have one yet.
Although what everyone says is true I didn't have anyone in until Chris needed palliative care. He " performed " a lot and unpredictably. When he needs cleaning up you can't wait for carers. What I did was arrange for a sitter who could clean him if necessary so I got a break.
Work out what fits your needs best. And be ready to adapt as things change.
I already have a hospital bed and hospice OT is bringing round more equipment next week, I will be asking for help, see what I can get and go from there.
by all means try youtube.com for info on how to do various things with a patient. I have found watching more than one on each subject is very helpful. If you have care givers that come in you can ask them how to do various things the right way, assuming of course that they were ever taught the right ways to do things. There are a few books relating to these things, the other thing but more involved and time consuming is you can sign up for a nurses aide course.
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Seeking some Advice on PSP
Just need to share
