My husband has just entered his fifth week in hospital. He was admitted with cellulitis and sepsis markers and he has leg ulcers which are not healing. He has been on bed rest during his hospital stay and his mobility, which was poor to begin with because of osteoarthritis and poor circulation, has been reduced to nothing. The physios in hospital have been trying to help him to stand, but it’s very hit and miss; sometimes they can get him upright and sometimes they can’t. Even when they do manage to get him upright, he is unable to move his legs to take a step. They have suggested that a period of rehabilitation (probably 2 weeks) would be the best next step for him, but he is refusing point blank to agree to it. So, they came up with a care plan for him to have carers 4 times a day at home, with a physio visit once a week. He has agreed to that, although previously he has always refused to have carers in the house (and I’m concerned that, once home, he will refuse again). One of the physios came out to the house last week, to check whether we could have a hoist (we can’t) and she also checked access to the property. There are two shallow steps leading up to the door into my husband’s room and she took the measurements of these.
It was decided that my husband could be discharged on Friday, but the hospital telephoned to say that he couldn’t come home because the transport company wouldn’t be able to get a stretcher up the steps. They said they would need to send someone out to conduct an assessment and this has happened this afternoon. The result is that there is no way they could get my husband into the house: not only is there the problem of the steps, but there isn’t enough room for them to turn the stretcher to access the door and, even if they could, the doorway isn’t wide enough for the stretcher to go through. (My husband is obese and the stretcher therefore needs to be wider.)
They said that, if my husband went into rehab and regained sufficient mobility to stand so that he could be transferred to a wheelchair, they would be able to bring him home. I’ve tried saying this to my husband, but he’s adamant that he won’t go into rehab and he becomes very angry when it’s mentioned. He says they’re having a meeting at the hospital in the morning, to try and find another option, but I don’t see what else they can do. Everybody agrees that the best thing for him would be rehab and the physios seem to think that he is likely to regain some mobility with intensive therapy, but he’s just not listening. He supposedly has the mental capacity to make decisions, so how can we persuade him to do what’s best for him?
Hospitals must ensure a safe discharge, if they can’t even get him in the house, then going home is NOT an option! The hospital either leave him where he is or make alternative arrangements. As his carer, you should be part of their discussions. To help his legs gain strength, a Circulation Booster might help, depending on his other issues. Might also help the ulcers too.
Thanks for your response, bowlingbun. I know he can’t come home unless they can get him into the house safely and they’re really trying hard to find a solution. Two more physios came out this morning to check again and they were talking about a different kind of hoist - one that used to be used a lot but isn’t used much now. If this is a possibility and if my husband can be transferred into a wheelchair, then they could bring him home. They have to have a meeting with their manager tomorrow morning (she doesn’t work Tuesdays) and then they’ll let me know the outcome. Goodness knows what will happen if this plan doesn’t work!
Jackie,
What about you? Do you feel you would manage with him at home and four care visits a day or do you think it would be better for you and him if he went to rehab?
To be honest, I’m dreading him coming home! I’ve only just been coping for around 7 years. His mobility has been poor and getting gradually worse, he has had repeated episodes of cellulitis, some requiring hospitalisation and some responding to antibiotics at home. He also has repeated ulcers on his left ankle which are extremely slow to heal - he’s had the current one for well over a year and it’s still not healing - as well as occasional ones on his right leg. He has to wear compression wraps on both legs, although he’s often in compression bandaging on his left leg because of the ulcers. He has always refused to have carers, saying “we can manage”. The first time he was hospitalised with cellulitis (as well as a UTI and sepsis), he agreed to have carers when he came home, but at their first visit he told them he didn’t need them, so they didn’t come again. Since then, he has refused point blank to have them. He has agreed to them this time, but I’m getting the impression that he thinks that once he’s home, everything will just go back to normal. He keeps trying to convince me that he can stand and that he is mobile, but the hospital won’t let him be. He still seems to be quite confused and is forgetting a lot of things; he keeps telling me that no one is treating him or dressing his leg, etc.
Quite apart from his physical problems, he’s very difficult to live with. He’s very demanding, he tries to control everything and he has to have everything he wants. He takes no account of the effect he has on other people and he is very good at gaslighting. He has alienated both our children (both adults, but both living at home with us). I could go on, but I guess you can see why I’m dreading him coming home! At the same time, I’m feeling so guilty.
You must tell the hospital that “at the moment” he needs to go into rehab. Even if he has carers 4 times a day, that still leaves you as the only carer for 20 hours a day! His confusion needs to be investigated before he leaves hospital, especially as his mobility is non existent. Do you think it’s the beginning of dementia or…? You know him better than anyone else.
In that case Jackie, you must let the hospital know this. The hospital think he needs rehab anyway. Your home is not suitable for a non-mobile, bariatric man. Care workers four hours a day leaves most of the care to you and you won’t be able to move him. Allow the hospital to put in place their original plan.
Don’t feel guilty. He needs more care than you can give and if rehab can get him mobile again - you and he will have a much better quality of life once he does return.
Jackie, if the house is not suitable and your husband is difficult, then he should not come back home.
Your situation sounds just like mine with my brother, who I ‘looked after’ for three years until his death. But unlike your husband, he realiized that he needed carers and he was very nice to them, a popular patient.
He was massively obese. He did occasionally have leg ulcers.
Problems included getting a hospital bed, which we bought ourselves, so the carers could turn him without hurting their own backs (they used slide sheets). When I first found bariatric bed suppliers for him he would phone them up and if they couldn’t deliver the next day, he turned them down. There were other aspects of his health he didn’t accept, and every time we went on a hospital appointment things went wrong. So it was fairly stressful. But I don’t think I could have managed if he hadn’t accepted it and if our house hadn’t been suitable for him. He was bedridden and in one room and I had several rooms, but it’s stressful having carers at all, because their understanding of the problems varies.
I’m sorry to read of your situation where your husband is likely to refuse to accept the situation at first, but you are doing the right thing establishing it wouldn’t work at home, and you need to get it established
now, while various professionals understand the problems, because it’s hard to get help once a situation is established.
It’s important to realise that NEEDS are more important than wants.
It might help you come to terms with your situation to write down everything he needed you to do for him firstly, before he was admitted, and secondly, what extra he needs now.
For example, think about pressure sores and ulcers.
If you look at the NHS Direct site, it gives all sorts of useful information.
From memory, patients have to be turned regularly, every two hours. Is this realistic at home? Can he even help you roll over? The carers aren’t going to come frequently enough to achieve this goal. How will he urinate and empty his bowels if bedridden? Who will manage this care?
Honestly, I think he needs 24/7 care and he’s only going to get that in a nursing home.
I struggle with my weight, he must accept responsibility for what he has put in his mouth, and the consequences. You are not to blame for his weight.
We are all responsible for our own happiness. It sounds like he’s not been pleasant for a long, long time?
You have a right to enjoy your own life too. You are wife, not slave or nurse.
Jackie
My circumstances are slightly different to yours. My late husband suffered strokes and vascular dementia. His consultant strongly advised me that a nursing home was in his best interests, and mine too, as he would have been impossible to care for even with some carers coming into the home. It broke my heart and our families too. However, it was his needs that were priority, not my emotions. I feel you must be very strong, and insist you can no longer cope. Your needs are extremely important, and if you dread the thought of him being home with you, then don’t. You have nothing to feel guilty about ( I understand guilt!) He will be safer having full time care, and so will you.
Thanks, everyone, for your replies and words of wisdom! I think we are making some “progress” today. They’ve had a meeting at the hospital and decided there’s no way he can come home at the moment. Apparently, the other hoist they were thinking of would protrude over the doorway, forming a tripping hazard, so wouldn’t be allowed. They’ve also spoken to the care firm and explained exactly how much care he would need and that the bed would have to be moved out and back at each visit and the care firm have said it would be too much for their carers, so they won’t be able to help. (Also, they still haven’t solved how to get him into the house!) He’s been referred to the Complex Discharge Team, who are going to see him tomorrow, with a view to “persuading” him to go to rehab. If he still refuses, they’re going to do a capacity assessment. I have to admit to feeling somewhat relieved that they’re the ones having to make the decisions because I’m sure he’s going to object very strongly!
Yes, none of the reasons for not sending him home are of your making.
His weight is really the biggest issue, something he has to take responsibility for.
Has anyone mentioned NHS Continuing Healthcare to you? If not, do some research, look for the CHC Checklist Assessment to start with, and do your own score of his current state.
Thanks, bowlingbun. I don’t hold out much hope of him ever losing much more weight - at one time he weighed 28 stone, has been as “low” as 20 stone and is currently around 21 stone, but he’s not sufficiently active and he eats too much to lose any more.
Yes, I’ve researched NHS Continuing Health Care and I reckon he would currently score at least 2 As and 4 Bs, which would make him eligible. Of course, that could all change if he would agree to rehab. He phoned me this morning while the Discharge Planning sister was with him and accused me and the hospital of conspiring to stop him from coming home. He let me speak to the sister and she said he was still refusing to go. I said I’d been told that, if that was the case, then he would have a capacity assessment, but she said he obviously has capacity. So, I told her about some of the strange phone conversations we’d been having: for example, they have discos on the ward (apparently, they had one yesterday) and there’s a woman a couple of bays down who has a police officer following her everywhere (although how he could see that, I don’t know!)
A little while later, he phoned again and said, “OK, you’ve won” but wouldn’t explain how and then he hung up. I haven’t heard any more since then, so I still don’t know what’s happening.
He will blame anyone and everyone but himself I’m afraid, but you are not to blame at all for the current situation, unless you chose the house deliberately so that a stretcher with an obese husband couldn’t use it years in the future?!?!
Do your children still live with you? Have you talked to them about what is happening?
You’re absolutely right, he never takes responsibility for his actions and nothing is ever his fault!
Yes, our son and daughter both still live with us (both boomerangs!) and they both have as little to do with him as possible because of his attitude. I have talked to them both (separately, as they don’t speak to one another and that’s another story!) about the situation and they both agree that he should be going into rehab. My son is particularly understanding of the situation and feels very strongly that his father has brought a lot of this on himself by taking no notice of advice he’s been given in the past by medical professionals. He has really lost patience with him. My daughter never had any patience to start with! She is a very different kettle of fish. She has what I am sure is an undiagnosed personality disorder (tending towards narcissistic) and has clashed with her father for years (they’re far too similar to get on!) I find myself permanently walking on eggshells, trying to steer a path between all three of them.
Hopefully with dad in rehab life at home may be easier. Make sure you don’t waste the opportunity for rest, peace and quiet. Unless he does something positive, he can never come home again.
Yes, life is already easier at home and I haven’t been doing very much at all since he went into hospital - haven’t been able to concentrate or settle to anything! Maybe when something’s settled (probably not until after the bank holiday) I’ll be able to get going again.
It will take more than a few days I expect. Think of it as a period of"treading water" and be sure to take advantage of a quieter life! When did you last stay in bed and read a book? Has an early night, a long soak in the bath? Take a long walk in the country? Pamper yourself, have a cut as colour at the hairdresser or similar.
Well, so much for “You’ve won”! I think we’re back to square one. He’s phoned several (more than a few!) times over the weekend and is back to insisting that he’s not going into rehab. He’s done a fair amount of ranting and he keeps asking me to explain why he can’t come home. When I try to explain it all again (and again), he comes up with “solutions” at every stage. When I tell him they can’t get him into the house he says, “Well, put in a patio door” and “You could cut the tree down”. I asked him which tree he was talking about and he said, “The one by the front door that’s in the way”. There is no tree by the front door and he wouldn’t be able to use the front door anyway, as there’s a tight, 90 degree angle to turn through to get into the house. He rang me at 10 o’clock last night and told me he was going to walk through his own door into his own house and until he can do that he’s going to stay where he is! In between all the ranting, he still seems to be very confused. Apparently, they were having a pantomime cum show in the hospital yesterday - he didn’t know what it was or whereabouts, but it was somewhere in the hospital. Once, he rang me to tell me he couldn’t find his phone charger - don’t know what he expected me to do about it. Then he phoned me to tell me he’d found it but what was the “big thing” I’d sent in with his latest supply of drinks, etc. (It was the charger for his shaver.) He’s also been very tearful at times, saying that it’s not just for rehab, it’s going to be for the rest of his life. I keep trying to explain that rehab will help him get back on his feet (literally) and able to walk again and that’s what he needs to do in order to be able to come home. He won’t accept it.
If he did agree last Thursday that he would go to rehab, would they just have taken his word for it, or would he have had to sign to say he agreed? I’m concerned that he’s going to say that he didn’t agree at all. At what stage does a decision “in his best interest” come into play? I’m hoping to be able to speak to someone “sensible” from the hospital tomorrow, but I’m not holding my breath for a positive outcome.