Diary of home adaptations

[AnishH]

hi everyone in case this helps.

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)

[carehope]

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 !

All the best to you and your Mom .

It sounds as if her care is in capable hands !!

Take good care of yourself ❣️

Elise in NY

[AnishH in reply to carehope]

Thanks Elise. Yes and everyone’s house adaptations are likely to be different. One thing I forgot to add was which of those were game changers

I would say the wet room and the mobility bed would stand out.

[Amypops]

Thanks Anish. This is really helpful.

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.

[AnishH]

Hi Amy

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!

Wishing you all the best.

[Millidog]

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 .