House not accessible for disabled husband

[Elisheva]

My husband is currently in hospital. He has chronic diabetic foot ulcers and is now facing a leg amputation.
Our house is currently completely inaccessible to somebody who cannot walk. I don't think he will have the upper body strength to use crutches so will have to be in a wheelchair, but how will that work? What will happen? He won't be able to get anywhere, bathroom, kitchen, bedroom etc. I don't even think he'll be able to stand up from the armchair by himself.
I understand that there are grants and that houses can be made accessible, but obviously that will take time. What will happen in the meantime? Has anyone experienced this?

Not the same thing, but my uncle was paralyzed in an accident before I was born - high level spinal injury so from the shoulders down. Generally hospital wouldn't allow the patient to be discharged if the home was unsafe or inaccessible.

It may be worth explaining the situation to them and seeing what they can advise.

I lost my ability to walk two years ago. I had a stairlift put in fairly quickly and my bathroom was converted to a wet room. The occupational therapist came out and did an assessments before I left hospital. I have various pieces of equipment around the house supplied on permanent loan from the nhs. The local council organised lift and bathroom. Again, via OT services.

Physio won't leave him long before getting him walking. Though the absolute key to success is his motivation and effort. If he sits all the time, he'll never walk. I say this as a life long amputee (45 years) and I've seen hundreds of people losing legs later in life. In terms of house - a commode is probably a good short term option. Physio will work on upper body strength too. There are other walking aids - zimmers with wheels. Re chair - one with a very high seat maybe best.

If you have a room downstairs that could be turned into a temporary bedroom and him use a commode until you can get a stair lift fitted. Not ideal. I visited a gentleman this week as part of my work and this is what he was doing after an amputation. your dh could use a wheelchair to get from room to room downstairs assuming doors are wide enough. this gentleman was doing this and was in a very small terraced house. He relied on someone to empty the commode. Do you own your own home. As above councils can do adaptions fairly quickly.

Is he likely to have a prosthesis fitted in the longer term?

If he does have an amputation, there will be a lot of input from occupational therapy and other services before he is discharged. They will visit your home and assess it to see if it can be made accessible, but he may be transferred to a rehab unit for a while before discharge (if you are lucky).

My father spent six months in hospital in his 60s and was discharged in a very immobile state, needing hoists and carers to get into his wheelchair. Before he was sent home there were various minor adaptations made to the house (ramps, grab rails etc), but there was already a ground floor room he could use as a bedroom, and a ground floor shower room and toilet.

Do you own your own home or rent? Would it be easier to move to somewhere more suitable rather than trying to retrofit your current house? I don't think the NHS or social services will pay for major adaptations or building work (eg to put in a ground floor bathroom) if you own your own home.

You may be eligible for a DFG

www.gov.uk/disabled-facilities-grants

let me know if you have more questions

You should definitely have an mdt (multi disciplinary team) meeting to discuss discharge. OT should do a home environment assessment, also if he can't mobilise on stairs you might need to look at single floor living until any needed adaptations can be looked at. I'm in Scotland and we can look at building grants even if you own your own property but this is dependent on an assessment, it's unlikely that this would be done in time to leave hospital, but the hospital OT would refer on to their community colleagues.

After surgery he will have rehab with the physio and Occupational therapist. The focus is usually on a safe sideways transfer rather than a standing transfer/walking. Particularly if his remaining for also has ulcers. Depending on how he progresses and how quickly he heals (which can be a problem for people with diabetes) he may be considered for discharge, or may need to go for a longer stay in a rehab ward.

The OT will need to assess the house to see whether it is feasible to get him home soon (possibly bed downstairs, commode, strip washing, care package if needed, and then refer on to social service OT for "Major adaptations" like stairlift/shower/ramping access etc, or talk about other housing options.

He should also be referred for his own wheelchair, and to the Artificial limb service in your area, which would have someone you can talk to about prosthetic limbs and sometimes had it's own psychologist, to support with the emotional changes of what's happening.

I used to work in this area, so I appreciate it's a lot to get your head around. Ask the ward to refer to an OT of you want to start talking about the home set up and what to expect

We own our home. He is only 48, we have three children and I work every day so he would need to be able to get around the house independently.
There would be no room for him to have a downstairs bedroom. It's an old Victorian terrace house which we were planning on doing a bit at a time, and it's not very big. There is a large step into the house, and one down into the kitchen as the doorways and stairs are very narrow.

I don't know, it all feels so hopeless at the moment. He also has kidney failure so will be looking at dialysis at some point this year.
I am trying to keep it all relatively normal for the children. I don't know. I don't think they should have to live with a commode in the living room. How would that even work? Would we have to send them out each time he needs the loo?

You turn the living room into his bedroom and everyone starts living in the other rooms.

You think about moving.

You don't need the additional stress on top of this nightmare medical crisis but you do need to move house to something more suitable. Is that an option?

You seem to be very negative in your thinking OP (perhaps understandably). You have identified that he may have issues with his upper limb strength. So what is he currently doing to improve this? Good upper limb strength will help him keep him independence.

I’d be asking for a social care needs assessment. Sometimes patients get discharged to a temporary stay in a care home while their home is modified for disabled access or their home is sold and a suitable one bought. You’re in a Victorian terrace so probably not modifiable, may want to start looking around at bungalows.

You seem to be very negative in your thinking OP (perhaps understandably). You have identified that he may have issues with his upper limb strength. So what is he currently doing to improve this?
Nothing. He is doing nothing about any of this, hence he is a 48 year old diabetic with kidney failure, foot ulcers and loss of eyesight.
My oldest is doing his GCSEs, my youngest is only 8. They are my priority here.

I am so worried that they are going to send him home and I will be expected to give up everything to care for him.

Call social services and ask for a social care needs assessment. Make it crystal clear that you are not in a position to become his full time carer.

OP, it sounds as if you are ready to bail TBH. Is he really not trying to help his recovery, depressed, just him?

I'm currently caring for a bedbound DH (decades older than yours) and have long known that unless you're able to function as a team, in all sorts of ways for at least most of the time, it won't work. We do and it does but it is incredibly hard on us both. You have children in the mix and perhaps need to give the whole situation a lot of thought re what you really can cope with going forward.

Push for him to go to rehab. If you can't look after him, tell them. He is probably going to tell them that you can sort everything. You don't have to, you have a job and three kids.

They might be able to help with sorting his diabetes and diet. Although I get that this will all be a bit late.

If I was in your position, I might refuse to have him back.

Refuse to have him home without everything in place.
Do you want him home at all? Are you considering separating?
He could live nearby in a suitable flat and see dc whenever.
If you planing to separstae he could maybe claim housing beneit in his own right? Or does he haVe a paid job, getting sick pay??
Any friend of his or rreative with more suitable accomodation?

I think I would be reconsidering my whole relationship of I'm honest OP. He doesn't seem willing to help himself, and that has clearly been the case for a long time.

Truth of the matter is he will be discharged home and things will be far from perfect, bed downstairs etc. Presumably it's his house as well so you can't refuse to have him back. They can put in adaptions and equipment in as needed (chair raiders, grab rails, commode etc), maybe even carers. Longer term they can do major adaptions such as stair lifts and wet rooms (if needed). The cost of this would depend upon your savings. I don't see the point of getting any assessment done now, as you don't know what his level of function will be.

You'll have to fight your corner on this but you'll be fine. Don't try and be 'helpful' nor try and be the one to come up solutions. OT need to do an assessment and you need to be clear how much you are out working.

It sounds similar to my late parents house
step to get in.
step to get up /down the kitchen
very narrow
they owned and they had a stair lift phi on and wet room bathroom
they still slept up stairs and had a commode downstairs
wasnt ideal and my dad hated it
very limited mobility for my father due to diabetes and that he didn’t want to move

the saying use it or lose it is very true

Well presumably if you gave up your job the mortgage and bills wouldn't be paid and you and he and your children would soon be homeless which wouldn't help anyone so I doubt if you would be expected to do that.

Thank you all for replying, I will look into the services you have mentioned and give it all some more thought.