Advice needed

Hi everyone, following on from my earlier post about my husband having a stroke on Christmas Day he has improved a little, his speech is not good but it is improved but he still has a lot of weakness on his right side so that he is unable to get out of bed or walk. I have had a phonecall from him which was hard to understand but he had finally been moved from emergency floor into a stroke ward after 5 days and he is under the impression that they are looking to discharge him. Much as I want him home I am terrified, I have no clue how to look after him. We live in a flat with a tiny lift, I don’t even think it could fit a wheelchair with a person pushing it in there. I do not have transport, no way of getting him home, I know absolutely nothing, he only had his MRI on Thursday and we do not even know yet what actually caused the strokes (he has had several apparently) I feel sick with worry of how I am going to cope with caring for him as well as caring for my elderly dad who lives with us. How am I going to move him around, get him to the toilet, look after his hygiene needs ? I feel like I am going out of my mind. Is it true that they can just boot someone out of hospital like this without even talking to me first? I will be telephoning them later because he may just not really have undersood but there never seems to be anybody that can give me any real information so I wanted to ask people here who have been through this what was their experience of being discharged.

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Hi Yvie. When I left hospital an occupational therapist met my husband at our house to see what equipment I would need. They provided a wheelchair- you can get different sizes- a “return” which I stood on so my husband could push me to the bathroom. Handles on the wall so I could get off the loo and grab handles in the shower. I came home by ambulance. You should be offered carers. Usually two people who will come in 4 times a day to help your husband shower, get up in the morning get dressed and get to bed at night.
There is help out there but make sure you let the hospital know your situation. Good luck and try not to worry too much.

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Hi @Yvie
I was just replying to the other thread… And I’ve some more notes to make the will be helpful to you and others and I will alert you when I’ve done that today

@Apple has spelt out one reality. Mine matches more or less.
I came home by ambulance, I wasn’t discharged until I could safely walk to the toilet and back albeit extremely slowly.
I had had conversations and so had my wife with the occupational therapist and visits from the council installation team.

Famously it is a postcode lottery. Where I live in Midlothian there is poor post hospital arrangements. 50 yards up the road is the Edinburgh boundary where they are apparently much better. Fingers crossed you’re in one of the best locations.

Most of the scenarios that you will encounter have been dealt with by the help care staff before. I would suggest cultivating some warm relationships with a few - my wife made home baking to take in for the nurses on the ward! -

I must repeat that you have to look after yourself as the anchor for hubby’s recovery. Some anxiety management techniques such as controlled breathing and focusing on a happy image sound as if they will do you some good. Anxiety causes physical symptoms which cause further mental symptoms and you can do without all of that while you focus on the pragmatic :slight_smile: Ask your GP (and you might look at YouTube and other public sources of guidance - if you search anxiety management in this forum by using the magnifying glass above that will also show you resources)

Take a deep breath :-), stay positive :-), know that there is a good post stroke life - it may be on a completely different trajectory to the one you were on, in fact there is now deleted post that said how good post stroke life was having had the realisation of how ephemeral it is and how the stroke event was a turning point -

Those with the best recovery are those who have the best attitude :slight_smile: there is period of adjustment which includes mourning prior to acceptance and then healing of more than just the physical brain but post stroke life

Hugz Simon

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Hi, my own experience is very different to that mentioned. I was discharged to a rehab unit which covered mobility and speech. While there it included OT.
I could only walk a short distance beforehand and that was only by holding onto a person either side.

I suspect this rehab is far from universal.

My home was assessed while I made a brief home visit, strongly recommend this as my grab bars would have been in the wrong place.
I returned home a week later.
Thanks
Nigel

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I live in Bristol. Just to give you an example, after 3 weeks in Southmead hospital (first week I had aphasia where little to nothing of what I said was understood, plus I was in an intensive single room) like Nigel, above, I was moved to NHS South Bristol Community Hospital for rehabilitation in Hengrove for 4 weeks. Only once I could manage stairs was I finally sent home.

That’s my case, but you can look up the rehabilitation hospital to see if you can find an equivalent one where you live. Of course, there was a wait to get into the one in Hengrove, but I wasn’t even close to walking, so had little choice.

Good luck, it’s not at all easy to work out, but I believe you’ll find a way once the right people start helping you, ciao Roland

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I think it probably varies slightly from place to place. I was in hospital for the first two weeks and then went on to a halfway house that had individual rooms and bathrooms. I wasn’t allowed home until a step was placed in front of the front door and an additional rail put up on the stairs (done by the hospital via social services) . I was also given a perching stool and wheelchair.
I doubt he will be allowed home until his home circumstances have been assessed and he is considered fit enough to be discharged.

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@Yvie you need to get the occupational therapy team involved which should be arranged by the hospital & they should visit the home to see what adaptations etc are needed. You need to make them fully aware of the issued you’ll have getting him in / out the home.

They can send people to rehab facilities too once they are no longer needing medical intervention & that should provide the rehab he needs to get him to a stage where he is safe to go home.

Please talk to the medical professionals to put your mind at rest and ease your worries.

Best wishes

Ann

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Thank you Ann. Things have been in limbo because of Christmas and new year, there have been no specialist staff around at all, just two very overworked nurses keeping people ticking over. I am hoping that today, the day after new year, that more will be done for my husband and we will have some kind of plan. My husband was confused when he rang me and I now realise that I cannot necessarily take everything he communicates to me because some of it is not true and his speech is not good so he is difficult to understand. I asked the nurse about him and she said there would be nothing done until Tuesday because there was nobody there! Yvie xx

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Hi Roland
Did you get help at home from Sirona ? I have gone back to them recently and got further physio at home.
Cheers
Nige

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Yes Nige,

I had helpers at home and a physio once a month for 6 months from Sirona. Now I have physios that come weekly, and these are kindly paid for by a charity called The Royal Society of Musicians. I also had an excellent counselor from the Bristol After Stroke charity for about 6 months, so this has come to an end, but I go to their meetings every fortnight

ciao, Roland

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@Yvie i hope now the holidays are over you can get things sorted for your husband. The holidays do tend to mean lots of things are left in limbo. Keep pressing them though so you get the answers you need.

Best wishes

Ann

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Your husband is not confused, if he’s anything like I was when in hospital after my stroke, he has a perfectly sound mind and that is how you should speak to him. It’s the Aphasia side of the stroke, he may overcome this quickly or it may take months, even years to overcome for some.

But if he has managed to contact you by phone/mobile and actually speak to you, all be it garbled, then I recon there is nothing wrong with his understanding.

When I was in hospital, I heard one nurse say to another, while they were tending to another stroke patient, “I hate working on the stroke wards”. I couldn’t say or doing anything because of my own condition and the fact I couldn’t speak. All I could do was cry.

Don’t you go making that mistake with your husband, don’t hurt him that way. Because chances are he knows everything that is going on around him, he knows exactly what he wants to say, he just can’t get those words from the brain to out of his mouth. But he will and could be any time soon. You need to work with him to help to be understood until he can do it for himself.

I was in hospital during the lockdowns. One day I tried, really really tried, to send a message to my sister. Apparently I did manage to send her a dot, a full stop. She was over the moon and in tears because she now knew I was still alive and recovering…because I’d sent her a dot :wink:

So don’t mistake his garbled communication for confusion. Encourage him, it will improve over the coming weeks and months.

A comedy by Morecambe and Wise always springs to mind when I think of my struggles with Aphasia:
“I’m playing all the right notes, but not necessarily in the right order.”

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You are right and I don’t think he can’t understand but he tends to assume things and also he has very vivid dreams which tend to get mixed into reality when he has just woken up, his epilepsy meds cause them. He woke up and there was a wheelchair next t to his bed and he assumed it wa for him and they were discharging him, he was totally convinced he was coming home and of course immediately phoned me to tell me at 7am! . In fact the wheelchair was for the man in the next bed. I realise Robin (my husband) does understand things, he is pretty sharp actually but sometimes the processing of the information and his memory and finding the names of things and people is a struggle for him and takes a while to unpick it all. . He was like that before due to his epilepsy. I would say his speech is almost at the stage it was before the stroke now because it wa not perfect before but he tires quickly and it worsens when he is tired. I am so grateful and relieved can communicate with him. He has to work on being able to stand and walk which he cannot do yet but I am hopeful that with time and work he will recover at least some mobility. The Morcambe and Wise quote is spot on and very funny, Robin would appreciate tnat. x

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@Yvie i totally understand the vivid dreams bit & getting muddled up with real life. I get many vivid dreams now - only since I had my stroke, and they do seem very true to life. I’m 2 years post stroke & still get them a lot although they were more like nightmares initially. It’s so disappointing when yoh wake up to find you can’t walk or run after all. I think it’s probably my stroke meds that cause the dreams as know of others who get the same but wenall had different strokes.

Sending my best wishes to you both.

Ann

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You’ll have to show it to him :smile:
I found it was a weird kind of sleep I had in the beginning. Whether it was I was sleeping lightly because the brain couldn’t switch off…lost the switch in the stroke…I don’t know but it was a matter of separating the dream from the reality when I woke. I think I heard just as much in my sleep so its understandable how Robin put 2 and 2 together when he woke and saw a wheelchair, remembers a conversation overheard in his sleep.
The dream stage of sleep is when your brain processes the information gathered during the day. But with a stroke brain everything is disrupted in some way while it sorts itself out. He’s got the builders working on his brain night and day, the plasterers, the electricians and computer experts all scrambling to get his back up and running again. It just takes time, lots and lots of time, but you see more improvements in the coming that’s for sure.

And it’ll probably be better once he’s home with not as much external activity going on around him to confuse, certainly nothing as busy as a hospital.

It’ll all come in time, but in the mean time it feels like wading through molasses. At least you know his brain is working overtime to get back onboard and that’s another positive sign :smile: Any and all activity is going to be very tiring and draining, there’s going to be a lot of stop starts ahead but it’s all good so don’t worry.

Where ever possible, let him try to do things for himself before you step in. Speech still slurs for me when I’m tired 3yrs on but I also still mild Aphasia. His speech should improve a lot more over the coming weeks, maybe try getting him to read out loud when he’s home, that really helped me.

And in the meantime, you should learn to relax and accept. Try to relax and enjoy this time you have apart without the need to feel guilty. Take this time out to mentally prepare yourself for his home coming, both mind and body :people_hugging:

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When I had my stroke A team was sent ahead to look at my home and make sure everything was in place for my safe return .This was very thorough.There were aids in my bathroom,toilet,kitchen etc.And frequent visits from stroke team after.y return.Try not to worry.Yvie.

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Hi vie I wasn’t discharged till I could do certain things like walking a little bit, able to make myself a cup of tea and get up and down stairs albeit walking sideways and gripping the banister wx all my strength. When I was discharged I had someone come in every morning until they were satisfied that I could wash and shower, dress myself, get downstairs and make my own breakfast. My husband put up handles to make me feel safer but the discharge team made sure got all the things I needed and physios came atound3 times a week. I was lucky in that my sister in law was able to come and care for me in the 1 st 8weeks so my husband could go to work but im sure you can get help if you ask for it. I know that I got better much more quickly at home than in hospital but I was made to do things even when I felt unsure. Please try not to worry. My husband and family have been the best support even when I’ve been moody and not good company. It already seems as though he’s making progress and as long as he realises he has to work at it, his progress will carry on. It’s a well known fact that you make the most rapid progress in the first 3 months and then it slows down so constant repetition is key to the brain making new pathways. Don’t be-fobbed off discuss your concerns wx his consultant aand never be afraid to ask for help . Good luck love and virtual hugs Suzywong xx

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Thank you for your advice. Almost two weeks on from his stroke and his speech is affected but he can talk much better. He is still leaning to the right because of weakness but he can stand with a frame and one nurse instead of having to be lifted up by two nurses and held up. Though he is wobbly I am hopeful that with exercises he will very slowly improve. I am told that he will remain in hospital, receiving the therapies he needs while it is still benefitting him and should know this week what the overall goals and plans might look like. I visit every day which is no mean feat when you are using public transport, I manage to stay 2-3 hours and then I have to head back home because my dad needs to be cared for also. I feel wretched when I leave him. The one thing that really is starting to concern me is that he doesn’t really want to eat and has lost a lot of weight. Can strokes affect your appetite? He used to enjoy his food so much. I try to take him things he would like but are healthy like yoghurt, smoothies and fruit though I did take him some shortbread biscuits because they are his favourites but I try to keep it as healthy as I can. Sometimes he eats it but often it is still there the next day and I have to throw it away. I know hospital food is not always the best.

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Hi @Yvie
Yes appetite is often affected.
Taste too.
There are some food supplements that our generally suggested & @EmeraldEyes Will be able to give you a name of.

Eating because you know you have to not because you want to is something some #strokeWarriors have to build into their post-stroke recovery routines.

Are you sound as if you’re doing an amazing job :slight_smile: Remember post stroke life is a new normal, a marathon, so remember to look after yourself and in no way should you entertain feelings of guilt about any of the choices you make to protect your resilience and sanity and good outlook.

The others have been giving you good advice :slight_smile: look up on any plans that are made now as being temporary and speculative rather than long-term. Don’t stick to the plan when reality is changing - hopefully for the better. Do recognise there are still ups and downs to come

Good luck
:slight_smile:

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Hi vie I too lost dramatic amounts of weight at the beginning. I really struggled to eat anything. I thought it was because I hated my hospital experience so much but it was the same when I came home for a few months. I started eating little and more often as I knew I had to put goodness into my body. You will find it’s common because I was weighed every week I was in hospital. Keep on taking him tasty morsels and at the moment I wouldn’t worry about it being healthy or unhealthy as long as he fancies it. I think it’s because we are ao immobile at the start we don’t raise an appetite and if he’s a stress bunny like me he’s probably worrying about e writhing. With me, when I’m stressed I don’t eat and lose weight… try to keep on celebrating the little successes he’s having and tell him he will get better each day albeit slowly and our body needs food for the energy we burn on this journey … I’m so pleased he’s being kept in till he’s more ready . A friend I met on my ward was worse than me and went to a rehab unit for 2/3 weeks where you are given much more physio attention.ask if this is a possibility for your husband . These u it’s are few and often far away. My friends husband was only able to visit over the weekends as he couldn’t manage on a working week but it really helped her. Try to keep smiling . I know it’s as hard for you. Your love will help even if he thinks the moment he’s not worth it. Please keep us updated and please let him know there is light at the end of this long, lonely sometimes journey but he has to fight and never give up trying. Wish I lived nearer so I could chat with you . Many hugs Suzywong xxxx

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