I don’t know what to do?

I posted a little while back about my husband, Robin, who had a stroke on Christmas Day. What has subsequently happened is quite a long story so please bear with me.

Robin initially started to slowly improve, he stopped leaning to the right, he went from needing two people to haul him out of bed to being able to walk with a frame and one person to steady him. His speech was improving but his confusion and delusions were still there though he seemed to start realising he was sometimes having a delusion or thinking his dreams were actually a reality. His word finding and memory were already compromised because of his epilepsy and something we managed together pretty well. He was moved out of a stroke ward onto a ward for people waiting for discharge. He still needed a lot of care but the plan was for him to go into respite care to continue his recovery.

The respite care was something I was talked into as I initially wanted to bring him straight home but I was told that they felt I would not cope well as I also care for my elderly dad who lives with us so, though I felt conflicted, I agreed for him to go in respite.

He was in the discharge ward for 6 weeks waiting and during that time he has had 3 falls, the first two he just bruised his backside but the last one, which happened a week ago, he ended up breaking his upper arm and collarbone, he tried to get out of bed in the night and fell, there was no nurse, she was making a cup of tea and left the ward unattended. He was sent back to a medical ward to deal with his injuries.

He has deteriorated rapidly in the last week, his cognition is terrible, he talks nonsense, he has become combative at times and will not keep his arm brace on, he was refusing medication, water and hardly eating, since Christmas he has dropped 2 stones. He is not the man I know and love dearly.

The thing is I understand that dementia is more of a risk for stroke sufferers but I wonder if this is just the result of him being stuck in hospital, depressed, missing home, with no interest in reading or listening to music, he now cannot walk with a frame because if losing the use of his right arm while it heals and he is laying there all day with no stimulation so no wonder his brain is inventing stuff.

The hospital said they wanted to get him walking again and then he will be put back into the discharge process and the interminable wait for a care home willing to take him for respite. I am at the stage that I am thinking that he needs to come home where he can be comfortable, with somebody who loves him and to be able to have some routine and stability, somebody who will do strengthening exercises and talk and engage and perhaps have a trip outside in a wheelchair, some fresh air, a life.

I feel that my darling Robin is slipping away and I am now convinced that if I had stuck to my guns and brought him home 6 weeks ago he would be in a much better place mentally, physically and emotionally and he would not have a painful broken arm and collarbone. Do you think I am being realistic? I made my first decision with my head not my heart and I think I was wrong. I feel like I need to get him out of there, I cannot stop crying. Any thoughts and advice would be appreciated by you as you have real experience.

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I can’t really say from a medical standpoint what further treatment your husband needs and why he is being maintained in hospital, but for me, after a week in the stroke ward, coming home home was just the tonic. Although, returning home didn’t make a difference to my symptoms per se, it did mean my brain had the grist it needed to get the mill grinding again.

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Yvie. So sorry to hear your story. I suppose it all depends on whether you think you can cope with both your husband and your father. I had 5 weeks on a stroke ward and was desperate to get home but when I was home to start with it did make a lot of work for my husband. Simply getting dressed, needing food cut up, bathing, going to the loo etc etc.
If you decide to have your husband home make sure a physio visits your home to see what aids you will need such as grab rails in the shower, a rail near the loo to help him off the loo, a wheelchair and the piece of equipment that was most help to me was a “return” which I stood on and my husband then wheeled me to the loo or anywhere else in the house. I had one upstairs and one downstairs. Also he should come out with a care package. I was offered 2 carers 4 times a day but didn’t take it up but it sounds as if you will definitely need help.
As to whether you are being realistic I don’t know. It will be a lot of work. Can you talk it over with the physios at the hospital to get their opinion?
Whatever you decide I wish you good luck and please let us know how it all goes

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Hi Yvie
When I was in the rehab unit it was mentioned to me over and over not to fall. Not sure if this was not to ruin their statistics or because of possible injury to my head.

I would say with two people to look after, think if that was possible for you on a bad day, terrible cold, strength to hold someone up or pull someone up from the floor.

Care packages if agreed do take time to organise.

You will almost certainly have to fight, ring up, chase to get what you think is the best solution. As I understand it, unless you have power of attorney, the hospital can listen to you but that’s all. It is worth considering for financial and health matters. It’s quite easy to do on the government website. Don’t be fooled into paying massively over the odds for some solicitor to do it.

Hope this helps
Nigel

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@Yvie so sorry to read all this. It myst be really hard for both of you. I agree with @Apple in relation to bringing him home. You shouldn’t underestimate the challenge & i think a care package would be a must as would making sure you have the right aids & adaptations in place.

Getting home is definitely a boost but you need to be prepared for the eventuality that that alone might not change how he is.

I think you need a frank discussion with the professionals & then take it ftom there.

Whatever you decide i wish you all the best & home things settle soon.

Best wishes

Ann

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having been in hospitals for 2 months after my stroke, I vote for your changed viewpoint; don’t beat yourself up about it, though, you are doing your best, and the path is unclear…

good luck, Roland

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Hi @Yvie
I agree with it everything everybody including you said above

I’d be looking for advice from the various agencies such as age UK, your local council, the Stroke Assoc’tn :iphone: 03033033100 / :incoming_envelope: helpline@stroke.org.uk etc maybe citizens advice

I think yours and Rups point about being happier at home therefore some grist to start the mill working is probably correct as is some exercise & joys in life

I wonder whether looking after two people is twice as hard or only one and a half times as hard as looking after one. I only have by comparison experience of our second child arriving and it didn’t double the work of looking after the first one.

Are you getting some care and attention to? You will become the fulcrum around which everything resolves and depends upon if you are looking after both

I send to you my best wishes
Ciao
Simon

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I am sorry to hear of all this, Yvie. I can’t advise you what to do obviously.
I had a mini stroke whilst a Carer and dealing with all the different challenges that arose . It’s not an easy job, as you know. But I am glad (on the whole) I did it. Certainly do not blame yourself for the failings of the hospital and rehab unit, it’s something I also had to put up with in other ways and probably we all have. Your husband might improve if he is home, but it’s really important you get excellent support for yourself from people who will deliver what they promise and let you have some time off and take up some of your tasks. Best of luck, whatever you decide to do!

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Hi @Shorn just popping by to say welcome to the community. Hope you are doing ok after your mini stroke.

Best wishes

Ann

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@Shorn Just popping in to welcome you to the forum and look forward to seeing you around :smile:

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Thank you. I am very encouraged by the support and caring on this site. It’s very heart warming!

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