My Dad has PSP and I’m wondering if others can give advice on the most suitable adaptions to the home (particualry bathroom) for the months ahead please. I’m aware it is a dynamic situation so will need to keep changing but we are at the point where he is falling almost daily trying to shower himself (despite hand rails and a chair in his shower). He has a wheelchair and rollator to get him to the bathroom, but then getting in and out of the shower is becoming a real risk. If we were to renovate a bathroom to get us through the next few stages, can anyone give some tips? Is making a bathroom into a wet room the way to go? What mobility is needed to actually keep using a shower? Any tips, very welcome. Thanks
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Woodstock80
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definitely go for a designed wet room complete with wash basin that is wheelchair accessible. They are expensive (ap £10,000) but worth it as it will be accessible until he is bed bound.
We had our bathroom converted last year to a wet room. Due to the amount of times my husband was falling. We did have a quadrant shower cubicle, but with the constant falling, he actually broke the fittings on the doors. At times he struggled to get in and out,, Even with my help. So made the decision to have a wet room.
The OT then provided us with a mobile shower/commode chair. That has been a great help, as I can assist him with showering more easily. This shower/commode chair can also fit over a standard toilet,
The wet room is definitely a lot more practical than the shower cubicle, But due to the constant falling, I assist him for his safety and my peace of mind. This disease takes so much of their independence away.
Does your dad have carers who can help him shower.
Hi Woodstock80, from my experience from looking after my wife (PSP), I would advise organising all facilities at ground level. I put in a stair lift and regretted it, we got rid of it. You need a wetroom with a shower/commode chair that goes over the toilet & under the shower. We swapped our bedroom for the lounge so sleeping downstairs for wheelchair access to wetroom a conversion of a shower/toilet with sliding door outside, because of a need for space. We got a hospital bed latterly for easier handling and caring. Home adaptions are not always easy. Seek advice from your Occpational Therapist. I am in UK.
Hello Woodstock, we decided to convert our garage into a bedroom and wet room. This has proved to be a good move (and sooner the better). Like people have said before it is better to have a shower chair than a seat in the shower as there are less transfers to be made. Basin at the right height to accommodate the shower chair and space around the toilet. You need more room for manoeuvring than you think! Especially in the latter stages when you need help with standing too. It’s surprising the amount of equipment and space for this that you need. The Council can sometimes help with these changes. (If you are UK based).
We have had our Garage converted to a bedroom and wetroom, the wetroom (i.e. level access into shower) has made it a lot easier
As a first step I would say to get the OT involved. They are best placed to advise for a particular person; they can also help with getting grants.
Does he have any carers to help? If not, contact Social Services and ask for an accessment ( you don’t need any referral from anyone to get this).
We are having another of our PSP Severn coffee mornings this Saturday, your Dad should have got the What’s app messages. I know your Dad decided to stop coming, but you are welcome to come by yourself for a chat. We are going to St Fagans this time for a change
Thank you! Yes, my Dad can’t really leave the house now and it’s hard for my mum to leave him for any length of time. We are in the processs of figuring out the social care side and probably getting to the point where that is needed.
I would say they are already at that stage. They probable need someone to help your dad have a shower. You should also consider a bit of respite care for your Mum, a few hours where she can get away. We have a carer four hours on a Wednesday so I can go nordic walking with a group we both went to before. It’s really helpful to me to get away for a bit. Then other weekday mornings we have a carer for a hour to get her washed and dressed. This then allows me time to clean up after breakfast, hang out the washing, etc.
Another item they should start thinking about is an ‘advance care plan’. We have just started on this path. It was the parkinson’s nurse at the 6 month appointments who suggested this. They referred us to Marie Curie, who paid us their first visit this week.
If you do fancy meeting on Saturday, we plan on meeting at 11. I can’t book a table, so first one there will try and grap some. PSPteddy will be the marker.
I agree with all that's been written but would also suggest that the shower has both overhead and hand held shower heads. It makes life a lot easier. The OT suggested that the carers use a wheeled commode upstairs for my husband as its narrower and more manoeuvrable . It works well. Good luck and hope to meet you one day with PSP Severn.
Some good suggestions from other posts - get an OT in to assess, get a level entry shower and shower/commode chair. But to build on their suggestions and share what we did: we removed the bath and replaced this with a level entry shower. We also installed a shower rose with a separate hand shower.
However, instead of installing full height shower screen / doors, we installed 2 half height shower doors with hinges that allowed the shower doors to open completely flat against the walls on either side (180 degree swing) so the opening was as wide as possible. The half height shower doors meant that once I wheeled hubby into the shower area, I could close the half height doors and then reach in easily to help him with showering, while still preventing the splash into the rest of the bathroom. It also made it really easy to reach the taps to control the temp without having to reach through potentially very hot water. Then we installed a shower curtain which overlapped the half height doors, so I could still use the shower as normal, or hubby could shower himself when he was still able. I've tried to draw a picture, hopefully that makes sense.
Sawa, that is really kind of you to go to the effort of providing the picture, and it helps as it can be hard to imagine what these things look like. How did you get this made- was it all bespoke?
The council put in these type of doors for us. When the builders put in full height curtains the OT insisted they replace them with half height as they were a trip hazard
Everything is standard except for the half height doors. And even there we just requested the installer order a different size (they usually measure up and order to size anyway). It looks complicated but actually was easy to do. We don’t get any Council or government assistance here so just went with a local shower installation contractor.
hi, yes occupational Health are the people you need BUT we haven’t had the best experience from them until recently when we had to get more help and had to stamp our feet about it a bit. PSP gets lost between Parkinson’s and other similar diseases and it’s a postcode lottery for services. For various reasons, We did a lot of things ourselves like ramps and grab rails, purchased rise and recline chairs, wheeled walkers, wheelchair, tables. We finally got some wonderful carers to help with dressing and washing (no accessible shower, so bed baths) commodes and an accessible/hospital bed but it is miniscule and FiL hates it, as he had a double to himself for years before diagnosis and the disease means he is fidgety anyway even if he doesn’t mean to be, and there’s no room to freely roll into a comfy position.
Any accessible housing adaptations such as relocating a bathroom, installing a shower facility or installing a lift (can you imagine the upheaval!) can be funded through grants, means tested, but beware as they can ask for the money back if the property is sold on after, I think. If you have a local hospice they will be able to help too.
We had a grant (not means tested) that has to be paid back (less 5000) when the title of the property changes. Personally, I thought this very good since we would not qualify for a means tested grant.
First, it meant that the council designed the changes, arranged the builder and checked up on the work
Second, there is no interest on the money.
For means tested grants they will ask for some of the money back if the house is sold within a few years (5 I think)
I would ask an occupational therapist (OT) to visit the house and make specific recommendations for change before doing any work. Only once the OT has provided recommendations I would initiate alterations.Every journey is different. Despite making the changes that have my wife and I three years together, a time came when she had to be admitted to continuing care for the last two years of her life. Still, changes made for her will serve me well as I age in place.
So sorry your dad is going through this. In my experience adaptations were not helpful. My husband’s falls could happen anywhere and at anytime. It was not necessarily getting in and out of the shower or on a particular movement. Just anytime. Making adaptations not really helpful. In the end he needed carers to assist with showering and then eventually he could not walk anywhere without hand to hand assistance. Really hard to manage as you say this dynamic situation but I felt that adaptations would not prevent falls and would be outdated by the time they were done.
Whatever you do to adapt, bear in mind if it’s being done to make everything accessible then it should be VAT free.
While on subject of finance - have you applied for reduction in council tax due to “severe mental impairment” … horrible term but both PSP and CBD are qualifying
Hi I have PSP and I find that lots of rails helps. We are applying for home alterations to our bathroom, toilet area. I believe too much space can be negative however using a wheelchair makes it difficult. A wet room is the way to go.
My Mum had a wet room, with a shower wheelchair and bidet toilet. But eventually she had to be moved to a nursing home, where she still had a wet room and all the help she needs.
I have just joined yr group recently.My brother has PSPA.
On reading the replies you got re the bathroom, 2 people mentioned about accompanying yr Dad to shower and toilet. I wholeheartedly agree with them. Christopher is falling a lot.
Last time i was there, his son walked him as far as toilet, safely and when he left, Chr fell. He always has someone in shower. It's so diffucult, a fall seems to happen randomly, so if at all possible, our loved ones would neen to be accompanied on movement.
It's so good to be part of this group, thanks to all of you..
I am not Chr's carer, but give his wife little breaks.
I had our bathroom adapted last year. We previously had a walk in shower but I had it removed and we put aqua boards on the walls a grab rail for him to stand up and hold onto and non slip tiles. We have carers so whilst he mainly sits on the shower chair he is able to stand for a few minutes with assistance. We wheel him into the bathroom using his commode chair and then switch him over. He wears a catheter so doesn’t use our toilet, only the commode and he wears pull ups.
You should ask your OT if they can apply to your local council adaptions team for a grant. We have had a floor lift installed completely free of charge and now having our entrance doors to the house replaced and a ramp put in place to enable my husband to get in and out of the house using a wheelchair.
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Any ideas on how to get a bathroom converted to a shower./wet room with financial help from the local council?
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