Husband can't come home from hospital

Jackie
I know it is very hard, but please try not to engage with the conversations with your husband. He is obviously very confused and rambling. The hospital must know this. When my husband was in hospital, after strokes, and had delirium, after yet another very upsetting call ( accusations) I decided next time I would say bye bye, and switch the phones to silent. I did, because I was at breaking point. I felt just awful at doing so, but the nurse adviced it me it was in my best interest. You must give yourself breathing space. Sadly, your husband doesn’t sound as though he has capacity. This will be taken into account.

Hi Jackie,
I agree with Pet. For your own sanity, follow her advice. Do not engage with him about it. Let the hospital sort this out.

Melly1

Thanks, Pet and Melly.

Today is our 47th wedding anniversary. I’d left a card for him over the weekend and I phoned him this morning to wish him happy anniversary. He seemed a little bit brighter, but said he hadn’t seen anyone yet. Around half an hour ago, he phoned me and asked how many years we’d been married. When I told him he said, in a very tearful voice, “Don’t you think it’s time we turned those 47 into love, not hate?” then he hung up. I haven’t phoned him back; I really don’t feel I can keep trying to be “nice” all the time.

What a horrible thing for him to say, easier to blame you than accept responsibility for his situation.

Had a phone call from the hospital earlier this evening - he’s been vomiting “coffee grounds” (blood) and has been complaining of chest pains. They think the chest pains were probably indigestion, but they’ve made him nil by mouth and taken bloods for testing and they’re keeping a close eye on him overnight. I’ve spoken to him and he says he’s been feeling bad all day and is still feeling sick. He really didn’t need anything else!

Oh Jackie,

sorry to hear this. No he didn’t need anything else to go wrong for him, nor anything else for you to worry about.

Melly1

In that case he’s not fit for discharge anywhere is he?! This happened to mum in hospital and they put a camera down to see what was going on. Hospital had totally ignored me until this happened, then all of a sudden doctor wanted to talk to me asap!

The doctor saw my husband this morning and they’ve decided that yesterday’s symptoms were a stomach upset and he’s been prescribed medication. He phoned me this morning, saying he was desperate for some clean shirts. I was a bit surprised, as I thought they were keeping him in hospital gowns. Anyway, I phoned the ward and they said I could go as far as the door to the ward and they would exchange clean clothes for dirty ones. When I arrived, the little staff nurse asked if I’d like to see him, just for 2 minutes, so I was allowed to go to the edge of the bay to see him. I don’t know what I was expecting, but he looked better than he’s looked for some time. His speech was also clearer than it ever is on the phone and he was making more sense. Admittedly, I was only there for 2 minutes and I guess he was taken by surprise, but it has made me wonder how much he’s putting it on when he phones - isn’t that awful? Also, as it turned out, I needn’t have taken him any clothes, as he is still in hospital gowns and the only dirty clothes I brought home were one pair of pants, one shirt and one pair of trousers. I think he now has more clothes at the hospital than he has at home!

He phoned me soon after I arrived back home and it was back to the vague, slightly slurred speech and long pauses. He said, “You’ve got to let me come home” and, as soon as I started to speak, he hung up.

Later this afternoon, the little staff nurse I’d seen at the hospital phoned to tell me that they’ve found him a rehab bed and they’ll be transferring him on Saturday. It’s in a community hospital 40 miles away. I don’t think they can have told him yet, as I haven’t had a phone call from him yet!

Spoke too soon! He’s just phoned. Didn’t mention rehab, but said he’s still feeling very rough, still having chest pains and is very breathless. I was a bit concerned about the breathlessness, so I’ve phoned the ward and spoken to the nurse who’s looking after him tonight. He (the nurse) says he’s doing regular obs and they’re OK, and he’s stable. He did say that he’s still muddled and forgets things very quickly and he asked me if I’d noticed that. (Have I ever???) Anyway, he said he’ll keep an eye on him and if there’s any change or anything else happens he’ll phone me back.

The saga continues. He won’t be going into rehab tomorrow, as he’s got another infection and they’ve put him back on IV antibiotics. Don’t know what this infection is; the nurse said it wasn’t very clear, but the doctor took the bandages off his leg to check it and that suggests to me that it may be another bout of cellulitis. Or it could be a urine infection - apparently they sent a sample off last weekend and it was growing bacteria. So back we go to square one again!

Oh, and the OT for the local council phoned today because the hospital had referred him to her. She’s going to come and look at the accommodation (again; she already knows it because she’s been out before) with a view to making more space for carers to be able to look after him. She’s talking knocking walls down and rebuilding in a different place - I really don’t think so!!!

Oh well, sounds like he’s in the best place - and will be in hospital for a bit longer.

The OT sounds a nightmare, I hope she hasn’t been giving your husband false hope.

Melly1

They could redesign the whole house BUT at the moment he needs a TEAM of carers 24/7. Changing the house isn’t going to do this! I suggest that you ring Social Services that before any further discussion they arrange a “2014 Care Act Advocate” so that your voice,as carer, can be heard. No one seems to be concerned about your welfare or opinion at the moment. If they say they can’t do that, it’s not true. I have one for all meetings, when they started telling me one thing and writing something different in their records!!!

I think it’s a cheek, the suggestion of knocking walls down!! It’s your home too. Does she realise the chaos it causes? Brick dust is horrid to get rid of for a start. Occupational therapists are not architects!! Even the suggestion is adding extra stress and anxiety to you and very wrong.

Thank you, Melly, Bowlingbun and Pet. It’s a great relief o be able to come on here and vent!

I don’t think this particular OT has seen my husband - she’s from “Care and Repair”, part of the local council. I think she’s in cloud cuckoo land, if she thinks we’re going to be able to move walls. For a start, we live in a housing association property and I can’t see them agreeing to knocking the house about! But the hospital have referred him to them, so I suppose she has to be seen to be doing something.

I’ll look into the Advocate thing - I tried looking it up today, but I’ve had difficult phone calls with him again, so I’ve not been able to take anything in.

He’s been particularly bad today - he’s always more nasty when he has an infection - at one point I hung up on him because he was blaming me for his situation and telling me I don’t care, etc, etc. He’s still saying he won’t go to rehab and if they “come for him”, he’ll ring the police. It’s really got me down today

There’s a lot of people working in positions such as that who have absolutely no idea (or interest, I’d say) of what caring involves.

During a wheelchair appointment (to assess the Pressure cushion) we spoke of other things and the girly came out with:- “You’re not supposed to be in the wheelchair all day

She seemed to think that I should hoist my wife from the wheelchair to an armchair and back and forth several times a day - the increased number of transfers involved would have trebled the time that I already spend hoisting my wife daily, from 40 minutes to two hours!

You do not have to let her in. First he has to be fit for discharge, which he isn’t. Then there should be a Continuing Healthcare Assessment, involving you. Then they should decide how much care he needs for daily living. Normally, major building works come under the Disability Facilities Grant scheme. Care and Repair do minor works. Time for you to make a few lists, starting with the care you know he needs.

Ayjay, you’re so right! They have a set idea of what can “help”, but they don’t think through all the practicalities. Quite apart from the additional length of time it would take you to hoist your wife, they should consider the effect it would have on her (I’m guessing it’s not exactly comfortable for her) and on you.

Bowlingbun, I’m not stressing about the OT visit, because what she’s suggesting would be out of the question for several reasons: I’m pretty certain the housing association wouldn’t agree; there would inevitably be a financial assessment and we would be expected to contribute significantly to the cost, which we couldn’t do (we always come out as just above the level for support, but that doesn’t mean we have a lot of spare money!); I really don’t think I could contemplate the upheaval.

I’ve started the list!

Don’t forget to list any health issues you have too, especially blood pressure. If you haven’t got one already, it might be worth getting your own BP monitor. Mine cost about £25.

Yes, I’ll do that. I have type 2 diabetes, high blood pressure, sleep apnoea, arthritis and back pain (which my doctor reckons was caused by my attempts to move/lift my husband over the first years of his disability).