Well, the OT came this morning, as arranged, and at least she didn’t suggest moving any walls. She said there was still the possibility of building a ramp to the door to the dining room (the room which is now my husband’s bedroom). This was suggested previously but it was going to cost too much and it would also take up all of the patio and a fair chunk of the path around the back of the house, so a compromise was reached, giving us 2 wide shallow steps that he could use with his frame.
She had a look at the dining room and talked about carers, hoists, etc. She seemed to think a fixed hoist or a ceiling hoist may still be a possibility (not what the physios had said previously and the thought of what it would take to install a ceiling hoist fills me with dread). Of course, she said all the other furniture in the dining room would have to be moved out - the dining table is already upended in the porch and the chairs are in the loft; don’t know where I’d put the dresser and the rest of the furniture. She then suggested that another solution would be to change his room to the lounge, which is a bigger room, and make the dining room into a sitting room for me. I must admit, I hadn’t even thought of that, but I can see that it could be a solution. Unfortunately, that would also involve moving out a load of furniture because it wouldn’t all fit in the dining room.
It’s been a bit of a trying week, too. The hospital is beginning to relax the visiting rules a bit, so I was able to visit him for an hour on Tuesday. It took me the first 20 minutes to sort out his clothes, as they’d managed to mix them all up, clean with dirty. He also told me to bring home quite a few of the drinks I’d taken for him. He was in bed but had been sitting in his chair in the morning - the physio said he’d been a bit unstable in the chair so they’d put him back in bed. He still has an infection (a UTI), so is still on IV antibiotics.
His phone calls this week have been all about making the house suitable for him so that he can come home. I think the final straw was today when he said, in a very nasty voice, “Have we got a marriage or not because that’s what this is all about!” and hung up. It’s a good job he did hang up because I was sorely tempted to say that no, we didn’t have a marriage.
So he can’t even stand steadily and they are talking about steps for a Zimmer frame!!!???!!!
Ridiculous. If they can’t even get him steady in the hospital, this is a non starter.
Most importantly, it still doesn’t address the issue of how much care he is going to need. Until they can prove he can manage without 24/7 care, coming home is not an option.
Sorry, I’ve confused you! We already have the 2 shallow steps which he WAS able to negotiate with his frame; the OT was revisiting the idea of a ramp. But yes, he’s still a long way from any kind of mobility. I wish I knew how to make him see sense and be reasonable about going to rehab. I dread his phone calls because he’s either ranting at me and trying to bully me into letting him come home, or he’s tearful and very sorry for himself. Either way, it’s emotional blackmail and he’s trying to guilt me into doing what he wants. I realise that he’s ill, depressed and probably very frightened, but there’s just no reasoning with him.
I’ve just had another phone call from him, going on about how he’s ill and there’s nobody to help him. He said again that he can get out of bed, stand and walk around, but “they” won’t let him. Then he became tearful, saying he’s got nothing to look forward to. Then he asked me what I was planning for him and when I asked him what he meant, he just said, “You know what I mean” and that was the point where I lost it and said, “If you mean going to rehab, then it’s not up to me” and I hung up. I really don’t know how much more I can take.
How is he phoning you? Does he have a mobile? The nursing staff need to know what is going on. Can you record his calls? All I can suggest in the short term is blocking his number.
Yes, he has a mobile. We took him one of those easy to use, large button phones for the elderly and he still has problems using it. He’s always telling me he can’t hear me and I end up having to shout. He talks over me and hangs up when I say anything he doesn’t like.
I have told the nursing staff about his calls but I don’t think they’ve really taken on board what I’m trying to say. He doesn’t show his attitude to other people.
The latest update from the hospital is that they’ve stopped the IV antibiotics and they’re waiting for a rehab bed for him. I don’t know if they’ve said anything to him, but I’ve only spoken to him once today. He was asking about the OTs and physios “we see at home” and I was trying to get him to understand that it’s the hospital physios and OT who are making arrangements at the moment.
It’s been a few weeks since I posted and what a roller coaster it’s been! After 8 weeks in hospital (including another 2 urine infections) my husband was transferred to a rehab bed (yes, he finally agreed to it!) in a local(ish) community hospital. At first he seemed to be OK with it - the food was better and the physio spent time with him each day explaining his situation and what he needed to do to try and regain strength. Unfortunately, this state of affairs didn’t last long and it’s been going downhill ever since. He decided he couldn’t do his exercises - “don’t people realise I have osteoarthritis and I CAN’T do these things?” - but he blamed everybody (nurses, physio, OT) for “not allowing me to walk”. He’s insisted all along that he can stand by himself and walk with a frame, but conversations with the nurses, physio and OT have confirmed that he can’t. He still has to be hoisted and most days when they ask him if he wants to sit in his chair (a super, all singing, all dancing chair), he says no because it’s not comfortable - I’ve tried it and found it really comfortable. Then he complains about being in bed all the time and says “they” won’t let him sit in his chair.
The OT came out to the house to assess what would be necessary for him to be able to come home. He took loads of measurements and photos and the result is that we need a ramp to get him into the house, then the external doorway leading to his current room would need to be widened to get him through it. But his current room isn’t big enough for his needs - he needs a bariatric bed and a hoist - so we would need to convert the lounge into his room and this means that 2 internal doorways would also need to be widened and a hoist fitted (not sure what kind of hoist). And of course, they’re still talking about 2 carers 4 times a day.
After a couple of weeks in rehab, I had a long conversation with the physio and the OT and they said that he wasn’t even trying to do the exercises and, although they had succeeded briefly (with great effort) to get him into a standing position, he was unable to move his legs to take a step. As a result they said that he needed to go to a temporary placement while the house situation is sorted out. Not at all sure that the house situation can be sorted out - the Care and Repair OT is coming out with a member of the “technical team” to see what can be done - and it could take “months”. He appeared to accept it at first but then, last weekend, he was re-admitted to hospital with yet another UTI. He was only in for a couple of days then he was transferred back to rehab and since then he’s become really intolerable. He says he won’t go to another place, he wants to come home and that’s the only way he’s going to get any better. He’s started being objectionable to the nursing staff and the physio and OT, he’s not eating and he’s constantly phoning me, crying, and asking me to “give him a chance”, “back him up” and “let him come home”. He won’t listen to any explanations from anyone, he says he’s going to take them to court if they try to take him somewhere else and he’s going to discharge himself and come home by taxi. He still insists he can walk and that, if he can come home, we’ll manage like we did before; he doesn’t need carers, he doesn’t have carers in hospital (!!!). He keeps saying he can’t take any more and I’ve got to help him. I’m so close to the end of my tether and I feel so guilty. I don’t know where to turn and I’m sick of spending a large part of the day in tears. I know he’s being looked after and that he needs to go to the temporary placement, but I’m scared about what’s going to happen when they try to move him. They have done a capacity assessment and decided that, at the moment, he doesn’t have the capacity to make a rational decision about his care. That’s started him ranting about not having a mental health problem. I know he’s upset and, probably, very scared but how am I supposed to deal with him?
I do feel for you. Since he is doesn’t have mental capacity at the moment, he will have to go back to rehab. He won’t have say.
The changes being proposed to be done to the house sound drastic. They will take many months to organise, get funding for and then to happen.
Since he is being so beastly to everyone trying to help him I really don’t see how you can have him home if he is going to be the same to you, as unlike the staff you won’t get to escape home at the end of the day.
Of course he would need carers!! Personally, unless he gains mobility I can’t see it working him being back home. He will imprisoned in his room, with four care visits a day. You need to let all involved in his case know now that you aren’t prepared to look after him unless he is mobile again.
If he lacks mental capacity, they should have a Best Interests meeting. This raises a lot of issues. Of course he can’t go home as he is, why did they even measure up??? Whose house is it? Did he do a Power of Attorney? Who is going to pay for the adaptations? Do you have a joint bank account??
I agree the changes to your house do sound drastic., and may well affect the value of your property if they are permanent.
carers 4 times a day two at a time will be very expensive for the Council. Are you self funding? I know people who the council have refused to fund this as a care home can work out cheaper.
Do you have any POAs for Finance and the other one for health?
There comes a point where you have to consider yourself and whether you can care for him at home .
Jennifer
The lack of capacity appears to be specific to his inability to accept his condition and make a decision regarding his treatment; there has been no suggestion that he is generally lacking in capacity. The physio told me over the phone about their decision that he lacked capacity; it seems the decision was made by the physio and the OT and the consultant agreed. I don’t know if that counts as a Best Interests meeting. They did tell me that a placement has been found and agreed, but they needed to check that it had all the equipment he needs. That was on Thursday and I haven’t heard anything since.
As for the alterations to the house, I think (hope!) that they’re just going through the motions of exploring all the options - that’s the impression I’ve been given. The house is owned by a housing association and I really can’t see them agreeing to it all. The OT told me that, because my husband’s name is on the tenancy (it’s a joint tenancy), they have to try all the options to get him home as that’s his expressed wish. I’ve received the means test form for a Disabled Facilities Grant but I think the outcome of the financial assessment will be that we’ll have to contribute a substantial sum - something I’m not at all happy about.
I don’t have POA: when they told me last weekend that he’d been re-admitted to hospital because he was unresponsive, I decided the time had come to broach the subject with him, but since he’s been back in rehab he’s been so objectionable that I haven’t really had the opportunity. Besides, the mood he’s in at the moment, he’d probably refuse because he’d say I only wanted it so that I could put him in a home.
Yes, we have a joint bank account, but I also have one just in my name - opened years ago and never got round to changing it (thankfully). I think I need to do a bit of juggling between accounts, although the financial assessment for the DFG will take my money into account as well as his. If it comes to funding his care, then I think he would have to fund some of it himself, but I keep asking about a CHC assessment, although nothing seems to have been done about this so far.
Everybody else (nursing staff, physios, OTs, my own doctor, our “children”, etc) is adamant that I won’t be able to give him the care he needs; the only person who can’t see it is my husband and his attitude and behaviour are really preying on me. I feel like I’ll be the one needing care soon - in a mental home!!!
Sandy
Even the most patient and calm person runs out of steam! Fighting alone with the powers that be is very frustrating.
Your post is not very helpful.