Husband coming home next week - advice needed!

Hi everyone, I have just joined today seeking some advice on behalf of my husband.

On 10th January he had a long-awaited triple heart bypass. During the surgery he experienced a series of “massive” strokes. He has been in hospital ever since. He has made some brilliant progress. He can speak, not clearly, but I understand him. He is able to walk with assistance of one. He can eat and drink normally. Cognitively, he is very different. He has massive inattention to the left and he has hemianopic visual loss and can not see much at all. He has no short-term memory. Various other issues which I won’t bore anyone with.

He is however now coming home next week as he is really struggling in hospital and they feel he would be better at home. I am of course over the moon he is coming home but I am very worried about how we will cope. We have just had a second stair rail fitted this morning on our steep stairs and I am told that he will get a shower rail and possibly a stool to sit on.

Can anyone advise what to expect? I know it will be hard but I am hoping so much that being home will help him. I am under a lot of pressure from certain family members to allow visiting immediately but I think he will need time at home alone with me to settle. What does everyone think?

Sorry I went on too much - I would be very grateful to hear from people about their experiences and any advice would be gratefully received. Thank you x

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@gemurray welcome to forum, sorry to hear about your husbands health problems. hopefully when your husband comes home they give him a care package, if not chase gp for one. MEDIQUIP supply bathroom and home aids, they will also provide a shower rail. my stroke physio organised it all for me. In terms of visiting ask your husband what he wants, if he says yes limit family etc to a timeslot and small amounts of times. Personally I did not want to see or speak with any of my friends and family when I got home . it took me a few weeks to adjust at home. I still struggle talking on the telephone. At the end of the day it’s your husbands welfare you are looking at not pleasing family members, stay strong and visit us again and let us know how he is getting on. I would also start looking at what grants, benefits you would be entitled to. disabled badge etc. DASH is a good place to start. Others on here will also have other information for you good luck :grinning:

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@gemurray welcome to the forum although sorry to hear of your husbands strokes. A lot to deal with on top of heart surgery.

Make sure you get the OTs involved in him coming home to ensure you have all the things in place that you need before he gets home. Also look at a care package so you can have a bit of time off too. It’s harder than you think looking after someone & looking after you is vital.

As @chris67 has said I would ask your husband what he wants to do re visitors. I found them to be completely exhausting although there were some I still wanted to see (like my mum). I saw them for a limited time initially. People will understand.

You might need to move stuff around at home to make things easier - trip hazards for example.

Wishing you both all the best.

Ann x

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When I came home the Physio from the hospital came to see my husband at home and looked at everything we would need. We had 2 returns which my husband calls sack barrows! where I used to stand on and he pushed me into the loo or wherever in the house - don’t use them now! 2 wheelchairs one upstairs and one down. A seat to go in the shower and a stool for me to sit on in the kitchen. Also portable rails that went round the loo to help me get up.
We also paid to have a stair lift put in. It was expensive but I could not have managed without it.
As for visitors do what your husband wants. I only wanted family here and refused all friends coming until I felt ready. Your husband will be very tired and I found visitors tired me out and in fact they still do! Think it’s the effort of listening and talking. Love to see them now but pleased when they go home!
Good luck to you both and enjoy having your husband home. Janet

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Hi Gemurray–I notice you mentioned inattention to the left. There was a man like that when I was in the stroke rehab hospital. I noticed that several times a day a therapist would sit on the affected side and worked with him paying attention to that side. Physical and occupational therapies should help a lot. After my stroke, I tired quickly. JUst getting set up at home will be tiring. He’ll let you know when he’s ready for visitors. I think you should keep visits down to just close family and short visits–a few minutes. Also, for about six months after my stroke, my husband took over meals and housework. I was not up to much but my physical therapy. But bottom line, ask him what he is up to. I had a tub transfer bench in the tub that I could sit on and the shower sprayed in front of me. My husband stayed with me the whole time until I felt confident and strong enough to be left alone.(a few weeks) I had a toilet support for a few weeks as well, but could handle that by myself. We were told to remove any scatter rugs to avoid tripping. Things will get easier as he heals and gets stronger. But stroke recovery can be slow, so be patient. It does get better. Wishing you and your husband all the best. :slightly_smiling_face: :heart:Jeanne

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Check the free booklets that the Stroke Association publish they helped me a lot when I got home. I agree with all the other postings regarding visits they can be exhausting. Once your husband is home keep posting here there is a wealth of knowledge and helpful folks

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Thank you everyone. I really appreciate all the replies.

Is it common for the discharge process to be slow? Nothing seems to be happening and his level of distress increases every day he is stuck there :frowning:

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It can be slow if you’re waiting for things to be put in place for him to be able to return home. Keep chasing & hopefully it’ll be sorted soon xx

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Thanks to everyone who responded to my post - it was very helpful and I appreciate it.

He has been home now for one week today and it has been harder than I could have imagined. We do OK in the days, although the loss of vision is making him frustrated and reluctant to move about. The main issue we are having is night-time and I could use some advice or just to know that it is normal. He is very tired all the time, and so has a nap in the morning and one again in the afternoon, around 60-90 minutes a time. We go to bed for the night around 10.30pm and then the nightmare begins! He is up around 15 times a night, some times needing the loo (which he never used to do) and often just stupid things like waking me at 2am asking if we are going down for breakfast, waking at 4am talking about random rubbish. I am barely functioning due to lack of sleep and need to hear this will improve - please! Again, thank you for anyone taking the time to reply to me xx

@gemurray i think everyone under estimates tge challenges of caring for someone at home.

It must be really difficult for you if he’s not letting you sleep. Needing the toilet more could be something bought on by the stroke & if so will hopefully improve in time.

You may not want to but could you sleep in a different room? Tell him unless you can get some sleep you’ll be in no fit state to help him in the day.

Is he feeling anxious about something bad happening & therefore if he gets up he knows hes ok? Perhaps his mind is working overtime?

I was told day time naps are ok if they don’t interfere with my sleep at night. Could this be part of the problem?

Just some ramblings from me. Not sure if they’re any help.

Hope things settle soon.

Best wishes

Ann xx

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Hi Ann, thank you for replying to me!

We don’t have a spare room for me to sleep in, we only have a 2-bed and it’s us and adult daughter. Although even if we did, he isn’t “safe” to be left as he is impulsive and can barely see so if he was asleep alone (say if I slept in my daughters’ bed when she was at her boyfriends) then I would worry he would get up and fall in the night :frowning:

He does seem to wake up with things on his mind. Silly things. Maybe his brain is struggling to process things - I am glad you said that about his mind working overtime as I did wonder if that could be it. Last night for example, he woke up at just gone 3 asking me “what time the man was coming”. We had an appointment with a social worker today so I think that was on his mind. Maybe I should limit the info I am giving him during the day…

We have tried to limit the daytime naps but then he literally conks out in the chair so he does need them!

It’s such a difficult balance. I appreciate it is early days though.

Thanks for replying it helps me a lot xx

Its so difficult isn’t it. It does sound a bit like he’s getting anxious about things. Anxiety is common post stroke. I know i now get anxious about things that never used to bother me. It may be worth a chat with his GP as they might be anle to help.

Perhaps call the Stroke Association helpline as they might have some good advice for you.

Sending you my very best wishes.

Ann xx

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First of all you need to calm yourself down, take a breath and then another :hugs:.
I dare say you are feeling panicked and overwhelmed yourself, that’s when we start to catastrophise, going into the fight or mode.

This is a huge upheaval for you, a major derailment that needs setting back on a new track. To be honest, I think a lot of your husbands current behaviour is more due to the fear, anxiety, stress and disorientation of coming home, just as it is for you!

He went into hospital for a triple by-pass 10th Jan, comes home 2 months later with his sight gone and brain scrambled from massive strokes. He’s only ever known hospital bedside care (don’t know if there was anything in between) since he woke in that state. It’s a shock to his system, of course it is, and he is going to be feeling stressed, overwhelmed, scared, panicked, and goodness only knows how hard his brain is working to try to cope with it all.

Ultimately he is going to feel very tired and for quite some time to come! Healing takes an awful lot out of you and he’s had a double whammy. He is going to sleep a lot so don’t try to fight that.

I think it will settle down once you have all found your rhythm to coping with this new way of life. Just take it one day at a time, don’t add to the pressure by planning any further ahead than you have to. And maybe don’t tell him of imminent appointments until that day for the time being.

It’s only been 4 days, you’re going to need a week at least to adjust and settle into a rhythm.

All being well, these things will get better and you will get a good nights sleep, so just hang in there a little bit longer :hugs: :kissing_heart:

Hi my husband had his stroke in July 22 and his just coming back home this weekend He’s been in a rehabilitation hospital but not really got anywhere im hoping he can get abit more mobile when i get him home im feeling abit scared of how its going to be annd i think he is too

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@lynne_day923 i bet it’s great to know he’s able to come home bug of course it comes with many worries. It will probably be difficult for first couple of weeks until you work out a new routine.

Hopefully his mobility will improve when he’s home. It will take hard work & determination but am sure you’ll get there between you.

Make sure you take time for yourself too as it’s really important so you don’t burn out.

Good luck. I hope it goes really well.

Ann

Well the day has come and after 9mths my husband is finally home Before the stroke he was a very active man so this is not going to sit well with him .Iv been given exercises and stretches for him to do but could do with something to occupy his mind and get his brain working any suggestions

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Welcome home to your hubby. I bet it’s good to have him home although i have no doubt it will bring new challenges for you both.

Some of the things i did to keep my brain working are:

  • jigsaws
  • Brain training games - i use mindpal on my phone
  • Word searches
  • Colouring
  • Crosswords
  • Sudoku

Just a few suggestions.

What about joining the Stroke Association online activities? They run zoom sessions including quizzes, learning about stroke, chatting to others in similar situation, genealogy sessions. If it’s something he / you might be interested in you xan email them on

online.activities@stroke.org.uk

You can join as many or as few as you want.

Good luck. I hope it goes ok for you.

Ann xx

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My wife had a “massive” stroke in August 2022, she was in hospital for 14 weeks and then a rehab unit for a further 4, but which we had to remover her from. I was delighted at the prospect of having her home, but despite help from family and two visits a day from carers, I could never have imagined the sheer physical input required on a day to day basis, she has left sided paralysis. Fortunately her cognitive functions seem OK and her speech although slurred when tired is understandable. We have established quite a good routine, but night times were and still occasionally are very difficult. As well as needing the loo she suffered from painful leg spasms, which seem to be responding well to Botox. It wasn’t unusual for us to be up 8 times a night. She can be incredible unpleasant to those trying to help her and I guess as her spouse i take most of this anger. Her OT doesn’t think she is mobile enough to use a stair lift so for the 8 months my wife has been unable to access the upstairs of our house, where the showering facilities are and as a consequence I have to book into a local Travelodge once month which has an accessible room with wet room. Her psychologist says she needs powerchair to at least give her a little independence, the local health trust say she is on a waiting list but it will still be a year before she is even assessed let alone approved for one. The main issue is however the mood swings she suffers and the shell she is retreating into. I wish I had been better prepared for the hard work, the frustrations, the tears and depressions. Despite all this would I do things differently another time definitely NOT.

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