my view on home adaptations is you are always a lap behind the deterioration. That said all the changes we made have had a positive benefit and happened just in time.
The timeline is only 16 months and I don’t think we are anywhere close to the end.
I have placed spend in brackets.
Note: my parents live in a small 3 bed terraced house in outer London (Zone 5)
Oct 2023 - Acorn Chair Lift - Refurbished (£2.7K)
Reason: Unable to walk upstairs. Adamant she wanted to stay in her bedroom.
Nov 2023 - Divan replaced with a mobility bed from Opera Beds. £2.7K bought on Finance
Reason: Unable to swing legs high enough to get on to bed.
Dec 2023 - Upstairs bathroom made accessible. Full suite replacement. Grab Rails. But not a wet room (£7K)
Reason: Old bathroom had a bath which was impossible for her to get into.
Feb 2024 - Further Grab Rails installed (£50)
July 2024 - 2 seaters Sofa replaced with a single seater riser recliner (£500)
Reason: She kept sliding off to the right. And was unable to get up without assistance.
August 2024 - Downstairs bathroom made bigger and converted to a wet room (£0 - Obtained through Disabled Facility Grant)
Reason: The upstairs bathroom just was too small and didn’t work for her.
I see further adaptations in the next 6 to 12 months as follows
• Move mums bed downstairs
• Possibly convert back half of living room to a bedroom.
As I said I’m just writing this in case it helps someone. PSP is horrible but with thoughtful adaptations you can keep your loved one at home but of course at a cost.
Anish (son of mother suffering from mid stage to advanced PSP)
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AnishH
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Hi Anish ! I think that your detailed list will be very helpful to many people who access this site. As you've pointed out, the adaptations are an ongoing process. Between the 'out of the blue' atypical diagnoses and the challenges that they present , it makes a difference to be able to see a "list" ! So thoughtful of you to take the time to do this !
The wet room, hospital bed and riser recliner chair has been a game changer for my husband. . Well for me as well too. As it makes life easier for me to assist my husband in his on going needs.
I'm about to move my Mum from her three-storey house. a 2-hour journey away to be nearer me and a couple of other friends plus much better public transport. She will not listen to any of us that buying another (though much smaller) house is still not a sensible move. I think I'll show her your list to try and explain again why we all keep saying that a flat would be much more sensible.
Ground floor or single floor living would be a must in my book. The awful thing with PSP from our experience is the ‘shelf life’ of many solutions is quite short. Sadly whilst buying a house may seem fine for right now. In the future climbing stairs gets way more dangerous.
Even with a chair lift, coordination issues make getting on and off unsafe. My mum nearly fell all the way down were it not for my father and my last second save as she was teetering on the edge of the seat without a belt!
Hi thanks for sharing. If it helps others the advice we were given for my husband was to think about things and prepare before you need them as changes can happen quickly. Fir equipment in the UK the OT service are generally good at providing equipment and changing what's required as needs change - chairs, hospital beds, shower chairs, stand aids to sara stedys etc and if needed fitting hoists but having a suitable space to work with us probably the most important consideration. Knowing that upstairs access would become impossible within quite a short time we avoided spending on stairlifts, upstairs bedroom reconfiguration and bathroom refit and went straight to a downstairs plan. We converted part garage and part extension, many others, have done garage conversions or adapted dining rooms , swapped lounges to bedrooms and ensuites etc. The initial cost is probably higher but in the long run likely more cost effective. Even with a 6 month plan to completion timetable where we thought we woukd have plenty of time for my husband to tranistion we were actually finished onky just in time as his mobility had deteriorated. With such a conversation you are able to start with clean slate in fit out and we ensured we had a level access wetroom, with sliding door, non slip floor, walk in shower, wall hanging sink, was/dry loo, grab rails, bedroom space for hospital bed, shutter so light could be filtered, storage for clothing and aids etc. This has helped as illness has progressed and we haven't had to think about new changes when we don't have time to make them. Perhaps key to this was getting my husband on side and ensuring he had a lovely room as such a change I appreciate can be hard .
this is a great list and I am sure will help others. My dad has late stage CBD and we went through a list of adaptations as his condition progressed. Although dad was happy with his stair lift, it was very expensive and probably the most short lived and don’t think in hindsight was a wise move.
Adapting the downstairs of my parents house was by far the best outcome. It’s tough as even thinking about it was a loss of independence however it happened quicker than anticipated and having his bedroom downstairs with a modified bathroom has resulted in a better quality of life for dad and mum who is his primary carer.
hi AnishH, thank you for that information, l also had a lot of items provided by my NhS neurology health team, ie perching chair for kitchen which is fully height adjustable , a two tiered trolley on wheels also height adjustable, bed rail to assist getting in and out of bed plus helps to turn over and shift in the bed, toilet assist rails, comfort height toilet l provided myself, shower rails and also another banister so l have one each side of stairs as going up l tend to lean backwards but coming down not a problem.
I hope this information helps others as well, l found if you do not ask you do not get
June 2021 - Diagnosis - discussed moving to a bungalow (from 3 story house).
July 2021 - Bought a second home (bungalow) in the UK instead of a planned holiday home abroad. Ready December 2021, with adjustable bed and recliner sofa. Bungalow already had accessible shower and grab rails at the front door. Spent much time in the second home.
April 2022 - moved out of the house, to temporary accommodation. Spent much time in the second home.
June 2022 - moved into accessible bungalow with large rooms, clear hallway, two bathrooms and 6 inch front step. Ordered walk in bath and Japanese style toilet. Spent most of the summer at the second home.
August 2022 - broken heel, rented wheelchair and OT ordered riser/recliner, walking frame & toilet frame. We installed rubber ramps at front step (standard size, approx £120). Replaced rented wheelchair with lightweight (CareCo) self propelled.
At this point we would have been unable to cope in our old house or the temporary accommodation - and we were unable to get up the 2 steps at the second home, or in and out of our cars.
Installed walk-in bath and Japanese style toilet October 2022. Replaced NHS riser-recliner with custom one February 2023.
Used cars and second home again once fracture had healed, but still needed wheelchair when ambulatory. Bought a second wheelchair (all terrain), used it on travels. Bought riser-recliner for the second home.
Started planning wet room conversion September 2023 - done in February 2024. By then we had stopped using the walk in bath as it was no longer safe. Social care provided grab rails by bed, in hallway and in wet room. Social care provided shower chair in the wet room.
Started asking for OT/PT advice about walking aids December 2023 as the ones he had been using were no longer fit for purpose. Got referral for wheelchair service.
Started planning access ramp for the second home March 2024.
April 2024 - bought disability vehicle - people carrier with swivel/lifting seat. Got wheelchair from wheelchair service - difficult to use in the house and very heavy to put in the car.
June 2024 - bought another disability vehicle because of a delay in repairing the swivel seat. Bought a light weight transit wheelchair - much easier to use in the house and lift into the car.
July 2024 - bought U-step walker. OT provided Sara Steady. Difficult to get Sara Steady through the hallways/doorways (damage) and to turn it in the bedroom (carpets).
OT provided drop-down toilet rails in the wet room, as the standard toilet frames were unsafe.
OT provided hospital bed. We had to give away some large furniture to make room for the hospital bed and other equipment. My husband refused to sleep in the profiling bed.
September 2024 - OT ordered hoist. We tried it once and sent it back.
October 2024 - access ramps were finished at the second home. Never used.
October 2024 - District nurse ordered air mattress for the profiling bed. My husband slept in the profiling bed for three nights before going to hospital.
Looking back on the list - we used a lot of money on equipment and adaptation, but sometimes got it too late. Most things would have been even later if we had waited for social services / OT/PT/wheelchair service.
The decision to move to a suitable bungalow was the most important one. No amount of adaptation would have worked in the old house. My husband wanted to wait - but it took us a year to complete the move. In hindsight we were lucky, the dimensions turned out right, we had seen other bungalows that I think we would have been unable to stay in for later phases. The ramp at our home was so important and must have prevented a large number of falls - it was inexpensive because we only needed a 6" (15cm) rise. I brought a tape measure to all the viewings once I had realised this.
I also realised it was "lucky" that the bathrooms were relatively large and not opening to a narrow hallway or small bedroom. Accessing the bathrooms was the most difficult thing when travelling or visiting other people, I couldn't have coped with such difficulties at home.
The walk in bath was a conscious decision knowing it wouldn't be used for very long - my husband loved it and got a lot of comfort and pain relief from it.
The wet room conversion took time - still very much worth it for the wellbeing of having frequent showers.
The custom riser recliner was amazing - he spent so much time in it and was able to mobilise (even when he shouldn't) and stay comfortable on good days and other days, it was also the base station for his neuro physio.
The grab rails were great but we wouldn't have known any earlier exactly where they needed to be. Some grab rails in the wrong places caused issues because he would impulsively grab them.
So I struggle to see how we could have timed things much better or made better decisions.
Your decisions were spot on and well thought out, you could have done nothing more - reading your experiences and seeing this play out with my parents highlights how quickly and unpredictably this disease develops. In reflection Dads conditions seemed to outpace the speed with which adaptations could be delivered. Bless you and thanks for sharing.
Thank you for all the info you, and others, have provided.
We're in a very difficult situation with my husband and I'm blocking out in a sense with how I'm going to resolve this.
We moved from South Africa in 2017 and converted a stand alone double garage into a small 36sq.m 1 bed bathroom, lounge and kitchen, cottage and loved it. This is on our son's property and having them so close has been a blessing.
However it's now a huge problem with limited space in which to move around in.
The Council installed a drop down grab rail next to the toilet plus a few other grab rails where possible.
There is no space for a wet room conversion and my husband hasn't been able to shower for more than a year due to difficult access into the shower.
As he manages to stand for a few minutes I do a bucket wash with standing and then seated in his chair.
Currently he can still shuffle around the end of our double bed by holding onto the sliding cupboard doors to assist him. Then there are grab rails attached to the windowsill which he holds onto while positioning himself to get into bed.
There is also a grab rail which is supported underneath the mattress.
There is no space to push a wheelchair around to that side of the bed.
When the initial assessment was done by an OT they had no conclusions as to what other, better options there were to us swopping sides in the bed.
There is no room for a hospital bed when that becomes more apparent.
We're in a catch 20 situation financially as well after spending a large amount of our savings to do the conversion. The rate of exchange is R23 to £1 or worse and we don't earn £'s.
We also don't qualify for any benefits.
Besides paying towards our share for monthly utilities, Internet etc, there is no rent paid.
We feel we need to hold onto every last penny which is most likely going to be needed for, if possible, home care or a care home.
We were shocked to learn the cost of private care here.
We can't afford to move and rent somewhere else.
My husband did say that the only way he is leaving the cottage is in a body bag and this breaks my heart.
Apologies for unloading our situation here, and not contributing in this instance.
Thank you for all the wonderful carers who offer so much advice and care x
I feel for you, these conditions are difficult enough if you have the ideal home environment and I'm sad to hear of your struggles.
I wondered if your husband's size and balance would support the use of a smaller showerchair on wheels or a commode chair rather than a wheelchair? These may navigate tighter spaces.
I also forgot to mention, but at a time when there was too much equipment in our bedroom, the "Rotunda" patient turner was really helpful (provided by the OT). This relatively small / moveable piece of equipment would let my husband pull himself up to standing (e.g. from the side of the bed) and turn around (e.g. to transfer to a wheelchair) and again to transfer from wheelchair to toilet etc. It didn't have the convenience of transporting my husband between rooms the way Sara Stedy would do, but it worked in much smaller spaces. You might ask to try one - ideally before it is needed.
Some feedback. We saw the OT and she arranged a mobile commode, mattress topper and the Mo Lift.
The Mo Lift has been a life saver for now as my husband can more easily be transferred from and into bed and to his chair with less risk of ending up on the floor.
Unfortunately the pressure wounds on his heels are really bad again. He saw the nurse at our surgery and he has started a course of antibiotics. His pain level is 10. She also referred him to the Leg Club in our area, which we attended on Friday. A team of nurses wash and dress the wounds of patients and see around 40 people each Friday.
The nurse also requested a visit by a Frail Care Nurse. We'll be seeing her this week.
I have no idea what the Frail Care nurses do, besides assessing the frailty level. I believe she will change the dressings.
Thank you for the update. The Mo Lift looks very useful, I wish I’d seen that a year ago 🙂 it looks like it would make a real difference.
I’m sorry to hear about the pressure sores. One of our district nurses was very passionate about correcting e.g. incorrect placement of the mattress on a hospital bed - ours had a short extension that was placed at the foot end of the bed and she went through the trouble of moving it to the head end as she said the heels could get pressurised in the small gap.
I hope your husband can get the heel wounds healed, I know too well how infections can take hold and no one should have to deal with such pain. You are doing amazingly in a difficult situation. 🌻🫂
is the stair lift still functional for your mom? I want to get one but am hearing that she won’t be able to use this in future. She can only get up/walk with help - basically wheelchair bound and can’t be left alone at all.
Yes it is still functional. However, I would be surprised if she’s still using it by this autumn. She will - I predict - need to move downstairs in the next 3 to 6 months.
Your chairlift purchase needs to be balanced against the cost of it, your mums need to stay upstairs and the likely lifetime of her using it.
For us I’d say it was worth it as it was refurbished and we got it for a third of the usual cost. It’s given her nearly 18 months of still being in her own bedroom.
I should also add from Day 1 we never let her get off and on independently. She always has to have someone with her.
All the best. It’s never easy and I hope you arrive at the right decision for your mum
Thanks so much. We want to put it in but need to do it for 2 floors. My mom’s carer thinks it won’t be of use for long. I would like to see if maybe we can get a refurbished one. My mom’s carer thinks is already mostly in a wheelchair. I hate this awful disease - it robbed my mom from me.
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