Coping with a decline in mobility

[Wombatz]

My wife was diagnosed with PSP 18mths ago. Like many others her balance has deteriorated rapidly. We have been advised to prepare for single floor living. I have talked with my local PSP Support Group and have determined that a stair lift is not a long term solution.

We have looked at possibility of a small ground floor extension. Currently we only have a over bath shower on the first floor.We need to install a large walk in shower or wetroom.

If possible we would like to maintain normal living status.

Has anyone had any experience of through floor lifts use/manufacturer etc.

I know they are very expensive but so is moving house

[Millidog]

Hi when considering future needs I looked briefly at lifts and found costs of £20k upwards. I decided against pursuing this for a number of reasons - loss of bedroom and living space to accommodate the lift, space available would be in room corner so not the most practical for furniture placement and moving around, thinking cost outlay wouldn't add value/may even reduce house value if future sale needed but primarily I felt a downstairs extension would better allow for easier speed to give care and for transport from bedroom & wetroom to kitchen and lounge for Psp partner as mobility diminishes and provide access to garden maintaining more normal life and involvement. I was concerned that transporting up and down in lift would be more problematical and if partner becomes bed bound maintaining upstairs facilities would mean increased isolation, greater distance to react to needs involve constant up and down stairs to provide it. Hope these considerations help

[Usamom in reply to Millidog]

your wife was diagnosed about same time as my son.does your wife have trouble with falling and her site? My son has both symptoms plus I’m noticing his mind is not as sharp as it once was. Thank you for any help.

[Wombatz in reply to Usamom]

Sorry for the delay in replying. My wife does fall often a lot of times it's over balancing spacial awareness is a problem she will overreach. She has no problem with her sight. Her mind has slowed and she has difficulty finding words and having conversations at times She has nightmares and will talk in her sleep this will happen for a week and then stop for several.We have a local support group run by the PSPA and by meeting others we can see it's different for each person.

Hope this helps

[T-val]

Hi, I thought I would just let you know that my mother came to live with us during covid after breaking her sacrum and coming out of hospital. We did not have time to make the changes we thought we needed ie wetroom so we swiftly bought a stairlift (from facebook marketplace!!) and have a swivel seat over the bath for Mum to shower which she does daily with the help of 2 carers. She is now in the final stages of PSP and still manages the stairlift (2 carers assist her to walk to it with her frame). Her bedroom is downstairs and we do have a downstairs toilet but she is now using the commode in her room. Your set up may be different but I just wanted you to know that we have managed very well with those quick adaptions almost 2 years ago. I hope that helps x

[Wombatz in reply to T-val]

Thanks I am relatively new to this and am gaining a lot of knowledge fast

[redyi]

Hi we made a bedroom downstairs and were fortunate enough to have a shower room downstairs too. However, due to the rapid progression of the PSP my husband was only able to use these facilities for a few short months. He got up a number of times in the night and because of the high number of falls he had I finished up sleeping downstairs and waking every time he got up. In the end Social Services together with the support services deemed it was no longer safe for him to be at home and it was having a serious effect on my health. This is something to bear in mind when considering spending money on your property. My husband is now in a local care home where I visit twice a day and now I know he is safe and cared for. This condition is heart breaking for those suffering it and their carers.

[Wombatz in reply to redyi]

Many thanks for sharing your experience

[Wombatz in reply to redyi]

I have got to know others from our local support group and it's a cruel illness you show the strength I am sure I need.

[LuisRodicioRodicio]

Hi Wombatz!

Our case:

A 140 m2 apartment in which the bedroom, an adapted bathroom, the living room and the kitchen and auxiliary caregivers' room and services are on the same level. Displacements could be made in a wheelchair if necessary. We have an emergency clinic 300 m away. and hospitals at 8 and 15 km.

A community elevator easily put us in contact with the street and the surroundings of the property.

We thought that, as far as possible and reasonable, the best for the patient was the care in her house.

Under the direction of a "main caregiver" of the family, experienced personnel were hired 24/7, seeking that all the people involved had sufficient physical and psychological rest.

Hoping to be useful.

Hug and luck.

Luis

[AJK2001]

I know someone who had one installed and they were very happy with it. However I would say the key thing is a wheelchair accessibility. Whether this is for a shower or just moving about the home. Mum's apartment had wide doors that made life so much easier. When she visited us, we could just about get the wheelchair through to the living room but because of the angle of the door, not the kitchen. So make sure whichever route you take, you can manoeuvre a wheelchair easily. Having a wheelchair accessible shower made life so much easier and I would definitely recommend.

[easterncedar]

We had good luck with a stair lift. We maintained 2-story living throughout. It was only the last few weeks that we had a bed set up on the first floor. He showered in our shower over bath as well, until he couldn’t stand at all and I was bathing him by hand. He did have some weeks before the end stage in residential hospice where he was showered in a chair. A lot of it was very difficult, of course, and I looked into various equipment purchases and making renovations, and now suppose it’s as well I didn’t. We put handrails everywhere.

[sherlock19]

We were advised by a visiting OT on home layout etc for my husband who has rapidly advancing PSP. She advised against a stair lift as my husband had very little balance even at the time and there was a high chance of him falling off the seat either during operation or at the top of the stairs when being repositioned. She was also very helpful in advising on the sizes of the rooms needed for sleep and showering when considering wheelchair and moving and handling equipment.

We went with a through lift as we had a decent space and position for it. However make sure when you get quotes that you ask for their second hand prices as they can fit and install reconditioned lifts and you get significant discounts. We paid around £10k for a Wessex one which is a lot BUT my husband has made a lot of use of it and it’s been invaluable. He used it when he was walking and couldn’t manage the stairs and because we got a bigger lift which could take wheelchairs it is still in constant use now.

Hope this helps. Good luck!!

[Podengo]

I have followed this site for a couple of years. My husband was diagnosed with PSP just over 3 years ago. He is now immobile and has serious cognitive impairment. A year and a half ago , we decided to redo a section of our main floor to help in keeping my husband home. We also did this knowing that it would help me also as I aged. It was a good idea as the stairs now offer challenges! We widened the hallway and doorways. Our new bedroom is large and accommodates a hospital bed(covered by Medicare) and a double bed for me. We have a large bathroom with roll in shower. A small laundry room is also attached to bedroom. The money we used was our future trip money , but so worth it. It helps when your daily life is filled with sadness and challenges. There’s a certain piece of mind having my husband here even though it is hard. We just hired a healthcare worker, which gives me a break. We live in Cape Cod, MA and I will gladly share any suggestions to you if needed. We’re working on getting more equipment covered by insurance. Fingers crossed! Take care.