My husband was diagnosed with PSP in June 2021 and we have seen a marked decline in his health over recent months. He has now almost entirely lost control of his bladder and, although he can still just about take himself to the bathroom, he really needs assistance to change his pads and there have been a lot of accidents. Changing bed sheets is becoming more frequent because he forgets to get up at night and even if I check on him, he sometimes does not want to get out of bed to go to the toilet. He's a big man and I'm not very big, so moving him and ensuring he doesn't fall is taking its toll on me.
I am about to arrange for a daily carer to come and get him up in the morning, shower/wash and dress him and get him downstairs for breakfast. This will ease the burden a little but as his only main carer it is becoming tough, especially as I am still working (mostly from home) and there is also the likelihood of a house move to somewhere more appropriate to live.
If anyone has any suggestions that could help from their own experiences, I would welcome them very much.
With regards to his incontinence, a catheter has been suggested but I'm not sure whether this is something we want to do at the moment. Thoughts please. Thank you.
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JAK63
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If you cannot manage him physically, the only 2 options are mobility equipment of the sort they have in care homes, or a care home. My pop had an issue going to the toilet as well. Mum was managing with a urine bottle, but she couldnt cope in the long term as he was getting up every half an hour. He was also just messing the bed and floor as well. He went into a care home. One thing I would say is that at the care home when they use the hoist to move him from bed to recliner and reverse is that there is a rule that two people must be present when the hoist is being used. Sorry I could not be of any more assistance.
Hi , I to am the carer for my husband who has PSP. Now in our 7th year. He too is a large man so I understand your problem with trying to lift your husband. Be careful remember to look after yourself. See if you can get the large blue bed protectors that are used in the hospital to cover the bed sheets. There is also a urodome , this fits over the penis and is connected to a urine collection bag that can be used at night so that the need to get up to go to the toilet is eliminated. You may need to upgrade to a more absorbent nappy or pants for your husband. We are in Australia all of these products are supplied to us through my husband’s Aged Care Package.
My wife was unable to walk but could still weight bear. We started using a Sara Stedy and that worked well but eventually had to change to a standing hoist where we used to pull her into a sitting position, put on her harness and use the hoist to raise her up so she was standing on the hoist platform. From there it was relatively simple to manouvre the hoist into the bathroom, get it into position and lower her on to the loo seat. Once she was ready, again the hoist just raised her back into a stance and she could be delivered back to bed or a chair. Institutions do use two staff to do this but I never found the need for someone to help me use and control the hoist and our carer also had no trouble. I hope you do find a one storey home though .... I certainly could not have managed getting my wife up and down stairs.
Oh JAK63, please please find a way to get more help. My husband died from PSP in 2019. I’m 77 but feel 10 years older having “wrecked” my body caring for him at home for way too long. He had many falls and was quite physically aggressive in the later stages. I’ve a bad shoulder, bad back, left hand which is still painful, and other aches and pains which I believe stem from my caring role. Don’t rest until you’ve found more help. The price you are likely to pay is just not worth it. PSP is a truly cruel disease. I’m afraid I’ve no suggestions to help with the issues you mention. My best wishes to you.
I agree with Happyme2, bed protectors called Kylies (get on Amazon) with wings that tuck undr the mattress to keep in place under his bottom (very absorbant), to save washing sheets. I used these for my wife.
What you need to do is engage with your GP surgery and get advice and help from their long term illness nurse practitioner; your local authority Occupational Therapist and their Social Worker to create a care plan. PSP is a difficult condition to manage on your own so don't try. You are going to need a lot more help once incontinence and mobility are compromised by the PSP. You will have to apply for CHC funding to cover the costs of this. The social worker and PSPA will help with this. Best Wishes
This is so familiar to anyone who has been on a journey with PSP. If you haven't already, please get your GP and Community/District nurses involved, also OT and physio.
As you are in the UK, there is a wealth of help out there for you both.
Firstly someone has mentioned a Sara Steady, which is invaluable for moving someone from a to b within the house. Also a commode which can be used to go over the loo. I too am small, 5ft and my husband was a 6 footer, but it is amazing what you can achieve, especially with the right equipment which the NHS can provide at home.
Your nurses/surgery may have an incontinence service. We had a wonderful team working with us who got him to use a Conveen, an external catheter with small, bag which can be emptied during the day and a larger one for overnight. This was prescribed for him and saved numerous falls and considerably reduced accidents. One tip, especially if your husbsnd is tall is to go for a longer tube rather than the standard which eliminates the risk of it being pulled off.
We downsized when we retired and Chris insisted on a bungalow. We were then able to make adaptations to accommodate his needs as he deteriorated which enabled him to stay in his own home until he died Christmas 2019.
Please, please talk to your GP. He together with others should be able to help get things in place to help you both including CHC funding which will be invaluable when the time comes.
Hi JAK63 I would speak to your doctor to get Social Work involved. We did and I now have carers 3 times a day. It’s hard to except but it was needed as I had carers stress. I worked in care and we used a Eurodom on men at night it’s like a condom and the end attaches to a night bag also as someone said Kylies are great. Good luck on getting the help you need.💜
I don't know if this will help with his bladder control, but my wife was going to the toilet on average 15 times during the night. We finally go the GP to prescribe a bladder control tablet "Mirabegron 25mg". We now go only 4 times through the night on average.
Hi Jak63, my Dad is in his 8th year with PSP. It's been a whole-of-family effort to care for him as he's moved from one stage to the next. His ability to toilet deteriorated quite significantly a few years ago and we moved to bringing a urinal to him. Once he was unable to stand with a walking frame, we would bring him to standing using a Sara Stedy (later a Sara Flex). At night he could use a urinal bottle initially with a one way valve to avoid accidents. As that became harder for his hand function and the accidents increased, we persuaded him to go to a uridome (like a condom sheath that has a tube to a bag). He didn't like the idea at first, but soon realised it was a relief not to have to get a bottle or worry about accidents. I don't know whether you have community nurses who can fit them, or whether you have a Continence Association with specialist staff but hopefully you do and they can advise you.Take care of yourself, I know from our own experience how exhausting it can be, and you are an angel to keep trying. It's such a cruel condition for the person and the people that look after them too. I hope you can find a carer and other supports so you can take some time for your own self-care xx
I am 81, male, diag PSP 5 yrs., continent but with 'urgent needs'. For night I use pee bottle by my bed, for my personal use, which is godsend nightly, and also for times when I need (just occasionally) every half hour. My friend has pee bottle he can use in the bed ... I am envious, but fear for the accidents!
This maybe no use for you, but wish you luck in 2024. TimbowPSP
In our case we did not have Incontinence situations until the disease was well advanced.
"mb2roger" has had to manage incontinence in the early stages of the disease and communicates the following experience that I think is interesting:
"While wearing comfortable pull ups as a back up we obtained an improvement but these supports were helpful for a short time, and then my mom agreed to trial an in-dwelling catheter so she could sleep better through the night, with no limit to hydration after dinner which was beneficial. My mom continued with in-dwelling catheters for her remaining years. There are pros and cons with any treatment or strategy, and an in-dwelling silicone catheter was what afforded my mom a better rest. An in-dwelling catheter does require regular replacements (my mom's Homecare nurse, in Canada, changed her catheter monthly) and careful hygiene practices to avoid / minimize infections. My mom's GP sent a standing urinalysis order to a neighborhood lab so we could check for infection whenever we suspected this (symptoms can be atypical, like confusion and excessive fatigue versus pain and fever). "
I add that the use of "test strips" Combur-10-Test” can be interesting.
Urinary incontinence. Martina_MP and Kayelless provide these comments:
This development is very common. Not to worry; it’s manageable. Yes as Kayelless says, get a supply of the larger washable pads (such as 34”x36”) and put one on top of the sheets. I actually put a disposable underpad on top of that. So then you only have to change the pads and not the whole bed. Also use thicker pull-up underwear (or diaper) at night; Tena Overnight is very good absorbancy, plus put a “booster pad” inside. The booster pad adds absorbancy but allows liquid to flow through to let the pull-up padding absorb also. We have tried several and I think TotalDry Maximum Boost ups (in the US) are good. I don’t know what they have in UK but apparently they are called nappy booster pads there. You can get smaller washable under pads, seat size, for your recliner and wherever else you habitually sit.
Nightgowns might be easier to manage than pajamas.
I totally agree with my colleagues on the urgent need to seek effective and efficient help.
hi jak63, my mum has PSP but also has other issues like arthritis,
have you checked whether he has a urine infection? It’s the only times my mum has ever had bladder issues
The thing I most recommend is getting in touch with adult social care to get carers in four times a day, especially if you don’t want him in a care home, the girls have been absolute life savers and if you don’t like the carers keep complaining to the care agency until you find what you feel is right for you. If you don’t like the agency you can always ask to change. It’s been a nightmare but after 5 different care agencies I have finally found one where the carers are great, it’s just the office staff that are a pain but I can deal with it
The second is to get an occupational therapist to provide you with what you and your husband need in the home to make things easier, they can even provide a hospital bed, the hoist or Sara stedy, a chair and anything else they think you may need.
I also recommend you get in touch with your local hospice, ours is St Christopher’s and they have been amazing providing support not just for her but for me as well, they have provided physio which our borough is really terrible at providing, I have had to battle to get physio for my mum. Anyway, maybe your speech and language therapist can advise and refer you to the correct place to where you are in the U.K.
My husband had convene, like a condom but with a short tube at the end attached to tubing leading to a urine bag. This was changed daily and a great help. In our area, East Midlands UK we had a continence nurse referral by the GP.
Avoid catheters if possible as urine infections are then more likely.
so sorry you to have to deal with this horrific disease.
Home care every morning for 2 hours are a start. My husband is a VETERAN and they give him 16 hours a week. My friend is not incontinent but wears a brief at night as he has limited movement in his arms and cannot use a urinal bottle. I have seen the safety/ tube to a bag but it in irritating. I have a pad called “quick change” that is disposable and forms an extra barrier around his penis. My husband has no use of his legs ( except to have pain in). I hope you get your help and enjoy ant time you have with him.
Thank you everyone for your support and very helpful suggestions, I have taken a number of these on board and will be seeking further help and follow-up on some of the suggestions you have offered.
This is a very good forum and I'm sure I will be seeking further guidance from this as we progress. 🙏
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