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?

Is there any chance he could be placed into some sort of rehab unit on his release instead?

The responsibility for his rehabilitation cannot be placed on you given he has and will do nothing positive about his situation.

Don't worry OP, you don't have to look into the services, it will be sorted from the hospital. I'm a hospital Occupational Therapist and have done home visits with exactly the same scenario to look at what equipment/adaptations would be needed to enable a patient to go home and be as independent as possible. He won't just be discharged with you expected to deal with it all.💐

"Don't try to be helpful".
I hate this attitude. The hospital staff, OTs/Physics are not the enemy. They will be trying to help her husband and help her come up with a solution to enable him to leave hospital safely.
If you don't feel you can have him home, I would encourage you to be honest with them, talk with the team and work through a solution. There may be alternatives to home (depending on the trust/location/available options/funding).
To "not be helpful" is just spiteful.

As well as practical stuff what sort of emotional support are you getting? My friends DH had complex medical issues due to type 2 diabetes and he didn’t make any attempt to lose weight and change his food intake though advised and ended up very disabled. Though she loves him she was deeply frustrated that he wouldn’t take any of the advice. Their house was adapted but it is a 1930’s style semi and they did have a room downstairs he could use and a downstairs loo. I know you are going to be in the thick of juggling so much on a practical level but please seek some emotional support.

I am a hospital social worker and deal with similar situations all the time.
I would suggest speaking to the hospital physiotherapist and occupational therapist and voice your concerns. Ask them, after surgery what sort of rehabilitation will they be providing? If they think he is suitable, they may be able to refer him to in house rehab into another hospital, if this is available in your area. At rehab they can potentially help him rebuild his upper body strength so that he can transfer independently from chair to toilet etc. He will be provided with certain equipment for when he’s discharged and he will potentially need to stay downstairs with a bed, commode, and any transfer aid and have carers to come and help him through out the day (short term plan). Long term plan he will need to be referred to the social services Occupational Therapy team who can assess him for major adaptations (DFG) in his home and if eligible they will apply for a grant for him for and complete any work carried required, provided he owns his own home and is eligible for a grant. If you need any other advice let me know and I hope it all works out. The first few weeks are always the toughest and then you will get into a new routine and things will get easier.

My uncle had a stroke last year. Thankfully minor in comparison to others but he was struggling with his left side. The house had to be assessed before he came home. I'm not sure who came but it was the hospital that who spoke to her about it.

If he needs a room downstairs converted to a bedroom, then that's what he needs, it seems (maybe incorrectly) that you're not really concerned about him, but more you and the children. If he's only 48, why won't he be able to get off a chair? I understand the dialysis is an extra stress/ concern, but May people,do quite well on dialysis and lead ok lives waiting for a transplant if they are suitable. Yes he may need some help,to begin with from you, and some consideration in the house regarding where he can be initially, but depending on him (and you) at his age I would have thought recovery could be quite good?

@45Degrees Perhaps I wasn't clear or perhaps we have a difference of opinion, but I definitely did not mean to be spiteful. I also do not be 'be deliberately unhelpful'.

What I meant was that for too many of us it's too easy to try and be a people pleaser or to say 'we'll find a way' or 'we'll manage' and in these situations and overworked OT jumps on that glimmer of hope and agrees the discharge. And then once the patient is at home and the family can't cope it's a million times harder to get support because the patient referral has to start all over again.

IMHO the OP needs to be realistic about what she can and can't do to ensure the best possible outcome for everyone involved.

They will likely first send him for a rehabilitation stay to build up some strength in doing basic self care tasks.. There should be a home visit before he is discharged. His team should have occupational therapists, physio therapists and social workers involved. You should be part of the discharge and transition planning. Ask around and talk to his team.

The reality is based on what you have said is that the downstairs living room would likely be recommended as his bedroom and would be converted. Far from ideal but safety trumps his lack of self care and health management.

If he needs a room downstairs converted to a bedroom, then that's what he needs, it seems (maybe incorrectly) that you're not really concerned about him, but more you and the children.
But we only have one room downstairs. If that is converted into a bedroom where will the rest of us spend our time?
I am very much concerned about the children and the impact it will have on their lives.
A rehabilitation place sounds like it would be ideal. If he can build up his strength enough to move about the house independently then that should be manageable.

If that's what he needs then that's what he needs though sadly. Thousands of people unfortunately have to make the same compromise and have a bed in their living room. No it's not ideal but unless he is fit to get upstairs either independently or on a stairlift then there are few alternatives.
The kids will adapt. You all will.

My husband became an amputee nearly 2 years ago. You will need a bed downstairs initially, that was a condition of him coming home from the hospital. It's not easy to get help so don't say you will be fine/ can manage or it will be harder to get help later. He will have a commode for downstairs probably. Has a prosthetic leg been mentioned?

Needs must, I was downstairs for nearly a year after a big accident with a commode, had a throw over it when it in use . Wasn't ideal but 6 year old ds thought it was brilliant and always asked to do a wee in it !

You'll be in shock at the moment but things will settle down, near his discharge they we'll start looking at home and making it safe. As someone said up thread they'll be looking at a safe sideways transfer rather than crutches and walking straight away,that will come later with physio I imagine.

We only have one room, I had a bed in the front room and made the best of it. The kids will be fine, it'll be your husband whose life has changed beyond all belief, kids adapt easily.

48 is very young so you need to come up with some sort of plan that will work for the next few decades. Most terrace houses are very narrow and not terribly accessible. Could you move somewhere where you could buy a more modern house that is accessible?

The reality is OP that having a parent with a disability does impact on kids. You can't really avoid that. Same as if you had a disability or a serious illness or injury. That is part of life. Your attitude (and their dad's attitude) will make a far bigger difference in how resilient your kids are than the fact their dad will have an amputated leg. The more accepting and positive and no big deal you are - the more your kids will be too. Assuming they are young, then you turn things into games and make it fun for them

I am an OT that deals with this sort of thing in the community. The reality as others have said is that he will have to come home at some point with a be bed and commode downstairs. Adaptations can take a long time to assess and then happen.

His whole team will look at what he can and can’t do and how your house can be adapted. Eg for a stair lift can he safely get on and off/weight limits/will one fit on your stairs. After that a plan will be agreed to ensure he access to essential facilities. A discussions about moving house may be part of this.

A DFG can be used to help fund this. The DFG is means tested. Look on this website www.foundations.uk.com/ for more info as well as a calculator to tell you how much you may be eligible for. Be aware that if a spouse works this can greatly reduce the amount so it is worth checking.

Your husbands life is about to change drastically, the kids will adapt he most likely won’t. If you aren’t willing to change the front room to his bedroom then you need to separate and he can go on the list for housing. Obviously that’s the last option but he needs somewhere to sleep, go to the toliet etc and that will be downstairs. If you aren’t willing to be reasonable then maybe you should separate and he can get the care and space he needs.

This sounds very difficult for you. How has he not got the upper body strength to support himself on crutches? Is he very overweight? Has he not taken on board advice on how to manage his diabetes?

You have a kitchen right?

You will manage if you want to
while considering other options like extension or stair lift or moving house.. rent this hpuse out and rent a all one level flat for a year?
Do kids like him does he treat them welll?
Woukd they prefer him there rather than not? Or visitig him part time?
Do you want to stay married to him?

If he is overweight, it sounds like he needs to spend some time in rehab to lose weight and build up upper body strength.
If you have a stairlift (you can buy or rent them) that will make a big difference to how he can get around.
As others have said it's not spiteful to not be too helpful - you need to make clear you have 3 kids and need to work to keep a roof over your head.
He needs to take responsibility too, lose weight, do exercises and get himself as healthy as he can be in the context of his condition.
I would push for some time in a rehab ward.
Although I don't know how good physio is etc - the people I've known who've gone into hospital after falls have come out permanently bedridden, but they were much older.
You said you have a Victorian terrace - does it have an outside loo?
If not, is there an outhouse where one used to be and you could put in another one?
Or is there room for a shed where a loo could be put?

Had he got parents he could stay with? He sounds incredibly selfish. I'm diabetic and 49 and I can't believe he's let his health get so dire. Sounds like he doesn't want to live.

Are you ok?

OP, if you can't move - and if you're the only one earning I can see that being financially difficult- can you adapt the house?

Is the kitchen big enough to make into a kitchen/living room?

Or is yours a Victorian house where two reception rooms have been knocked into one? If so, can you reinstate the wall with double doors between the two halves? That way you could have a sitting area you and the children could use, either with the doors open or with them closed to keep noise from disturbing either party.

Otherwise could you make your bedroom into a bed-sitting room you could use yourself and to watch TV/videos or play games with the children?

With this kind of procedure they will be looking to have him up and about quickly, he can go to a rehab facility temporarily. A stair lift might be the solution to keep you in your home. He needs to take control of his health though, and you need to prioritise yourself and the children, refuse to have home home until he can care for himself

That sounds horrible, OP.

As others have said, contact your council for a home assessment. Round here it's the District Council (I think), and Dept is Adult Social Services. I had to wait 3months when I hurt my knee (again), but I think they do urgent referrals eg if someone is in hospital. Occupational therapists come round, assess and provide.

There is often a care plan set up by the hospital for someone being discharged. I am sure this covers about a six week period and may involve eg Red Cross workers. Need to push this with the hospital as sometimes it's a bit hit and miss (and bloody patients tell them they'll be fine, no need for anything, and they listen). As PPs have said, emphasis you cannot be full-time carer.