stair lift or bedroom downstairs?

[PeterPanandLostBoys]

My mum was diagnosed with CBD a couple of years ago. She is 77, lives with my dad, who is coping well as her carer, and I see them at least weekly. It’s heartbreaking seeing her deteriorating. She is becoming increasingly frail, and starting to struggle with the stairs. The OT has advised against installing a stairlift on the grounds that my mum would not be able to operate it herself. Instead, they suggest converting the dining room into her bedroom and creating a wet room in the downstairs loo. I’m worried that my mum would hate this, and it would be difficult for my dad to be on a different floor at night. She would never need to operate the stairlift on her own, as one of us is always with her. Any advice gratefully received.

[Millidog]

Hi, we went for a downstairs conversion after much similar advice. We were additionally told a stairlift could be hazardous in future due to impulsively a common symptom in PSPand potential situation where the PSP patient becomes unable to sit unaided, we're not at that stage but listing to the side does happen. We also went for downstairs considering as time goes on husband may be in bed longer and creating a room downstairs makes easier access to go to and fro and easier communication. I do sleep upstairs, I think it makes for a better nights sleep for both of us and I do then have some space for myself whilst carer is here. To overcome the upstairs/downstairs issue I bought 2 items, the first a plug in ring belt with pendant for husband. I have 3 plug ins - lounge, kitchen and my bedroom and whenever husband requires help, eg toilet in night he presses pendant and I can get there quickly...it works great and was very cheap from amazon. I have recently bought a Babysense 2 camera and comms system. It has a split screen monitor similar size to a phone which you can carry round, stand up in kitchen whilst making a meal etc and I have it by my bed at night and 2 cameras one positioned to view lounge chair and one the bed which I can switch screen over with press of a button. The system has a sound alert so if husband starts to move it alerts me and he can just call-out if he needs assistance, you can then press a button and talk to check if all OK, help needed etc. Again I've found this a worthwhile purchase. Like the situation you describe I was concerned how my husband might feel but as we built the rooms I focused a lot of what he would like eg bathroom style and bedroom colours etc. Its now his room and he likes it, plus as carers become more frequent it provides a private space for him dressing etc. I'm sure others will respond with useful experiences and ideas. Good luck with what you decide xx

[AliBee1]

Hi, We went with the stairlift option as we could not accommodate a bedroom downstairs although we did convert his downstairs office into a wet room, which worked well. However a year before my husband died he was no longer safe on the stairlift, even with someone with him. as he leant so far to one side, especially when poorly, and so we had to move to a bungalow. In the bungalow we had to once more convert a bathroom to a wet room but I bought a single bed so that I was still in the same room as him in his hospital bed which was very satisfactory and this could be done if you were converting a downstairs room. Good luck. Hope this helps. AliBee x

[45purple in reply to AliBee1]

Not an easy one. OT said no to stairlift as it wasn’t safe. Our dining room is now my husbands bedroom along with the kitchen as we did not want to separate the two. We are in the process of getting wet room downstairs using the utility room next to the toilet. Good luck with whichever way you go 💜

[Bergenser]

Knowing what I know now, I'm very glad we started looking for a bungalow as soon as we received my husband's PSP diagnosis. He fell on the stairs a few times in our old house and though he might promise to stay downstairs while home alone, he couldn't be relied upon. Since we moved to the bungalow he has used a stair lift in other places e.g. at the dentist office, it is difficult both because of his (lack of) balance and his impulsivity, so I can only imagine it being stressful if he had to use it every day. With daytime naps, and waking up at night, sometimes for several hours, it could be many trips between bedroom and living room both day and night. If at all possible I would go for the downstairs option.

[Kasenda]

I would agree with your OT that it’s more sensible to move the bedroom downstairs. It’s safer for everyone involved. All the best.

[David750]

Hi, we installed a stair lift before PSP diagnosis and regretted it. I agree with all said, a wet room downstairs (we converted a downstairs toilet and shower) and a bedroom downstairs (swapped our lounge for our bedroon) to accommodate a hospital bed are essential. I had a single bed next to the hospital bed, then to get sleep I moved my bed upstairs installing an EasyN camera system (no longer available) operated through my mobile with a two way baby alarm. Advances in communication (Millidog's example) recently offer greater options. Your OT is correct in the advice. All my very best wishes

[Pspuser]

Hi,

We are at a similar stage to you, and are in the early stages of converting a garage to wetroom and bedroom.

Currently awaiting an architect.

Have you considered applying for a Disabled Facility Grant (DFC)? As part of the process they will access your house for the most effective means of accommodating the person. In our case the OT immediately ruled out a stairlift. They initially considered a through floor lift, but it would require so many other changes to bathroom, doorways, bedroom. Everywhere would need to accommodate the turning circle of a wheelchair.

At least in Wales, (not sure about the rest of the UK), even if you don’t qualify for a full grant, the grant agent will act as a project manager and oversee the works.

The OT should be able to put you in contact with the grant agent

[Rose1sunflower]

hello, we converted our garage into a bedroom and wet room, so glad we did! He has his own space now. The worst part was clearing the garage out after 30 years of things being stored in it!

The wet room is so useful now he uses a wheelchair all the time. We actually use a shower/commode chair indoors, it is so much easier to manoeuvre. It is used in the wet room though, so he doesn’t have to transfer to a seat in the shower. The Re-turn is so helpful in helping him to stand when dressing him.

We also have a baby monitor as I thought I wouldn’t be able to hear him but I can hear the snoring without it!!

We converted the garage as it is connected to the house and our downstairs is open plan, so the dining room didn’t lend itself to be converted. It is surprising how much room you need in a wet room when your cared for is in a wheelchair.

Good luck with the conversions.

[Kelmisty]

Sounds like lots of good advice, my Mum has CBD and PSP, I agree a stairlift is not the way to go. She could try to get off it when it’s moving which wouldn’t be great. Whilst a downstairs bedroom might not be what she want it would be a better solution. Either that consider moving to a bungalow or ground floor flat?

[kafunzi123]

i bought a stair climber from VEVOR company in China for about 1000 Euros! It is great. Not only do I use it in the house, but also I can move around to the dentist and other doctors who are stationed in places which are not easily accessible. On the way I use it as a wheelchair! Check on the web!

[Licquoricelover]

I completely understand your concerns. We were unable to have a stair lift due to the configuration of our staircase. We only have a small downstairs cloakroom. Our OT suggested a floor lift which she applied to our local council and they approved it and paid the full cost. We did not have to contribute anything. Our Council adaptions team advised that stair lifts and floor lifts are not means tested which was a huge relief to us. We had it fitted in our dining room and it raises into a spare Bedroom upstairs. At. T he moment my husband can transfer from the lift using his walking frame into our bedroom but in time there is a bed next to the lift should his mobility decline.

I would ask your OT to make an application to your local council for assistance. We were very fortunate. I know some councils are in the red but it’s worth exploring. It’s made such a huge difference to us. I am caring solely for my husband. So this has minimised the risk of him falling. Good luck

[Sun-flowerwearer]

Hi

My 63 years olds husband’s progression has been very fast. This time last year he could walk up and down stairs on his own although unsteadily so we both moved downstairs and I put a double bed in the dining room .. tight squeeze but it worked.

By May 2023 he couldn’t get in and out of bed without my help and we stopped using the shower upstairs ..as his fall risk was too great.

The deterioration then started racing anway and he ended up in hospital with an emergency catheter issue. When he came out a few days later he could no longer walk at all!

So by september this year he needed a hospital bed of his own and to use a Sara Steady to transfer him from bed to chair and back. The OT had the bed put in the lounge and moved my single bed into the lounge too as he can then have my company all day and night, watch tv and I can be with him 24/7 as he can no longer do anything at all for himself including having a drink.

So in a year we’ve gone from managing stairs to almost bed bound … so just bear the unpredictable nature of PSP/CBD in mind when making any decisions … what seems possible today may be impossible next month!

[Rose1sunflower in reply to Sun-flowerwearer]

Totally agree, especially if any building work is involved. It always takes longer than you think! I’m so glad we didn’t wait to do the alterations when he needed them as it would have been to late. The OT has fitted a ceiling hoist in readiness. He doesn’t need it yet but I think we are getting very near to that time. The Re-turn/Sara Steady has really helped too.

[Leosta]

I would advise you to take notice of what Sun-flowerwearer has said.My husband is on a similar degenerative path to hers.

April 2023 he moved to the downstairs bedroom (built when we converted an old barn - in case I go off my legs, he said). He must be clairvoyant !

May 23 a medical bed was installed. He was still getting up and with my help walking with a frame.

By July 23 his legs were very weak and he could barely stand up.

August 23 he stopped getting out of bed and is now bed-bound. His 'rugby legs' have turned into sticks.

November 23 he started having problems with swallowing.

Now he eats little and sleeps a lot. He has lost the ability to speak.

Sorry, but it's important to realise that PSP/CBD is very unpredictable and as Sun-flowerwearer said, what seems possible today may not continue to be so.

I do hope you make the right decision for your Mum.

Best wishes x

[PeterPanandLostBoys]

I just wanted to belatedly reply to thank you for all your helpful advice and comments. My dad has been getting quotes for a downstairs wet room and we shall start the somewhat daunting process of clearing the dining room, in order to make my mum a comfortable bedroom downstairs.