My partner had a stroke 6 weeks ago and we were given lots of information a few days ago from a lovely lady from the stroke association including about this forum. The stroke badly affected his speech and swallowing but it has improved enough that we were told yesterday his is medically fit for discharge. I was over the moon and terrified all at the same time. We want him to come home so I can look after him but as he has cerebal palsy his mobilty was getting increasingly worse even before the stroke. Now he needs moving about using a hoist. We have been told we need work done on the property to widen doors etc as its not suitable at the moment for a wheelchair and I wondered if anyone had been through something similar where they had to have work done to have a loved one come home. So sorry for going on!!
@paula123
I had a stroke 2 years ago. We just had a wet room fitted, it took about ten days and both my wife who is my carer and I found it very tiring and stressful, but now it is done we are grateful and pleased with the results. It took a two year wait before anything was done. It was paid for on a council grant I think. Among other things knocking down an internal wall and rearrangement of the plumbing was part of the process.
Don’t ever refuse anything, you will end up on the bottom of the list. There are all sorts of things, additions and modifications that will make life easier for you and your partner.
Get used to us here on the forum and get to know us, we are pleased to share and be helpful if we can. We are good at listening too, so let us know about the downs and the ups of this change of pace that has affected your life.
The first year or so is full of uncertainty. No one can give you definite answers but I assure you we are here for one another and for you in particular.
As a carer you have been affected by stroke, and your life will have been turned upside down, you might feel alone but there are millions of us. There are ways of keeping in touch and sharing the grief, the jokes too, believe it or not.
I’ve bent your ear for long enough, but don’t go away, we all have one another and somehow we will be here tomorrow, the next day and beyond.
Paula 123. There is so much help out there. Before I left hospital a Physio met my husband at our house. I had a wheelchair but nothing was said about widening doors and as far as I am aware our doors are normal size. I came home with 2 returns which I used to stand on and my husband could pull me around the house. One for upstairs and one downstairs. They were great. Few weeks later the Council workmen arrived. They put a folding bar around the loos so I could get up more easily. Grab rails in the shower and a handle outside the back door which I still hold on to help me up and down the back doorstep.
We have steps down to our garden and they put up a handrail by the steps so that I could get down to our summerhouse.
I had a hospital physio come to the house once I got home to do exercises etc and get me more mobile. She was amazing in getting things done.
Good luck with it all. It will get easier but it does take time and patience!
And I can run on even more than you or Bobbi!!
Hi @paula123 I’ve just popped in to say hello and welcome you to the forum. I have no advice on this aspect as my stroke didn’t require any adaptions. I’m sure there will many more members coming forward over the next few days with more good advice as @Bobbi and @Apple have given. Stroke survivors and carers are always popping in as and when they can, helping to keep each other sane. Weekends on the forum tend to be slower, naturally, so keep on checking in
Your partner is going to be quiet and sleep a lot as brain recovery is tiring, so don’t be alarmed by that. In these type of situations we expect the worst and it all seems so very daunting, the fear of the unknown. The occupational therapist should just about everything he will need except maybe structural adaptions, but enough for you to manage. And you will probably have care workers in a couple times a day too to help him. And don’t forget, this is all stuff you would have eventually had to adapt for anyway with his cerebral palsy. It’s just come a lot sooner than you thought.
But don’t ever forget you need care too, so take breaks whenever you can, take all help offered if only for your own sanity. Maybe join any local carers groups you have going in your area, they will all be in the same boat as you and can be good for building a support network for each other. You could start that sort of thing now before he comes home.
…and, like Bobbi, I too can go on a lot longer than this, fortunately this aspect of stroke is out of my league so can’t say much . . . I say “fortunately” for obvious reasons
I wish you are and your partner a very happy homecoming and try not to worry too much, it can be such a draining emotion and the half of it is pointless until he comes home. Planning and preparation is a far more useful and healthier for you than worrying too much
Hi Paula and welcome to this forum. We are a merry band of stroke survivors and their carers and families. We have all suffered very different types of strokes and are on very different roads to recovery. I can only speak as a stroke survivor but I do know that we were both very nervous about me coming home after 5 months in hospital.
Feel free to join in the chat going on and ask questions when you have any worries or if you feel the need to have a rant or a moan, which we all do from time to time. There’s always someone here who can offer you some advice or offer a shoulder to cry on.
Good luck with everything and I hope your partner’s home coming goes well. Look forward to hearing from you.
@paula123 hi & welcome to the community. Good news that your husband has been declared medically fit for discharge. My advice would be to ask the hospital what they are going to put in place to enable him to return home safely. As a minimum i suggest you need an occupational therapist assessment at your home so they can assess what might need doing. You could also try your local council to see what they might be able to help with or adult social services.
Be honest with the hospital about how you can / can’t manage & don’t agree to anything you might regret later…it’s so much harder to get things in place once you are home.
You’ll be nervous to start with but will soon settle into a routine.
Don’t forget to look after yourself too & take time out when you need to.
Welcome.
We were in the process of having our bungalow adapted for my husband who has a life long disability which, like most physical disabilities, was getting worse with age, so they didn’t have to do anything specifically for me. What I did need though was plenty of time and sleep (still do on occasion) and I do find that some of the gadgets, like the tin and jar openers, that he has aquired over the years are also usful for me. As others have said, take whatever you are offered. We have both found the Occupational Therapists to be particularly helpful.
Thankyou so much for your reply and from others. It means a lot. I know what you mean about the ups and downs. There have been so many in the past 6 weeks. Today was a down day. Apparantely he has been mad at the nurses this morning and when I was there he was coughing almost constantly. When they did his obs his temperature was up a bit and oxygen levels had dropped so it looks like he could have a bit of a chest infection. I have to admit I have shed quite a few tears this afternoon after reading all the lovely messages I have received. Think I have been bottling everything up since it happened trying to be strong for Kev. I guess its good to have a meltdown every now and then! Our families are very supportive but its amazing to hear from people who understand what I am going through. Going to try and relax tonight. Tomorrow is a another day. Hopefully it will be a better one
Thankyou so much for your reply. It really means a lot to me to know there are people who understand exactly what I am going through. It wasn’t a great visit this afternoon. It looks like he has got a bit of a chest infection now. We have got some adaptions already in place like a walk in shower, hand rails in various places etc but for a while he hasn’t been able to get out of the front or back as there are quite high steps so waiting to get ramp installed as well as getting the doors widened etc. Now physio and disability grant team need to come and see if they can also install a ceiling track for a hoist. Physio say his balance and mobility progress have plateaued and although it may improve in the future its possible he will stay as he is. Its just all a bit overwhelming at the moment but I’ll get there! Thanks again for replying to me
Thankyou very much for your reply. I really appreciate it. Yesterday the therapy team started talking to us about the options available for discharge but kev was taken ill (he had passed out during physio earlier in the day) so they are coming back on monday. They did say that if we both wanted him to come home so I can look after him then he would have two carers visting four times a day to help with washing, dressing and moving him in the hoist etc but occupational therapy would need to assess the property to make sure there is enough room for all the equipment needed. Will hopefully be able to discuss things more when Kev is feeling a bit better. Thanks again for replying to me.
Thankyou for your reply. I really appreciate it. I great to speak to people who understand what I am going through. I am so glad I got the courage to join your group. He has had a bit of a down day today. Looks like he has got a bit of a chest infection now. So many ups and downs in the last six weeks its hard to keep up! Thankyou again for replying to me. Paula
Thankyou for replying to me. So yesterday the therapy started to talk to us about the options for discharge but he was taken ill (he had passed out during physio earlier in the day). They started telling us that if we wanted him to come home for me to look after he would need two carers visting 4 times a day to help him with washing, dressing and using the hoist but occuptional therapy would need to come round to check there was enough room for the equipment needed. Hopefully when kev is feeling a bit better the therapy team can go through everything in more detail. Thanks again for replying to me. Paula
Just wanted to say thankyou for replying to me. It is great to hear from people who understand what I am going through. There has already been so many ups and downs in the past six weeks its hard to keep up. It looks as though if he were to come home for me to look after he would need two carers visting 4 times a day to help with washing, dressing and using the hoist but occupational therapy need to visit the home to check there is going to be enough for the equipment needed. Thanks again for replying. Paula
Hope Kev feels better soon. It’s good that the wheels are in motion to get things you need in place before he comes home. They will all help but i’m sure it’ll still be difficult.
Medics often talk about plateaus and not progressing further. A lot of people have proved them wrong & hopefully that’ll be the case for Kev too but it takes hard work & determination.
Use the time he is in hospital to rest a bit & build your strength up for when he comes home.
Just thought I would give you an update. Had an assessment with occupational therapy at our home today and they have said kev can come home!! Just have to move some furniture around in his room so the hoist can go all round the bed as he will be spending all his time there for now. Disabled grant lady was there at the same time so they are going to work with each other and she is going to try and rush through the building work as a priority . Also decided to change bathroom to a wet room . Just waiting to get care package in place as he needs two carers visiting four times a day . I don’t mind how long it takes now i know he can come home
Good news! I’m really pleased for you. You will find your way through all this. It has been done before and you will begin to see how it all fits together. Each case is different but it all follows a pattern.
Like your husband I came home bed bound and in need of a lot of support. Both my wife and I thought that is how things would stay. No one told us any different.
In actual fact mobility and outlook did improve but it was very gradual and over quite a long period of time. Sometimes I felt awful, useless and was certain I was going no where.
I was lucky to have a partner who is patient & supportive but I think we both went through periods of despair. somehow we managed to continue. It hasn’t always been grim and we have had our moments but some how we are still here and two years after the stroke I have made some progress and still believe that there is better yet to come.
It certainly seems to be a long road but making an effort and not giving up is worthwhile. I haven’t been the luckiest symptom wise, but whatever and whoever, stroke is life changing and it seems going back is not an option. I believe being brave and moving onward regardless is the best policy.
My advice for both of you, if I am fit to give it, is work hard at not obsessing about stroke, look around, smell the roses and take part in life as best as you are able. There is a tomorrow, you are alive, make the best of that.
Stroke is an elaborate trap that must be escaped.
Oh yes, value yourselves, make a return to self esteem and self confidence. You are both worth it. Your partner will appreciate you metaphorically standing up straight. Do not be bowed by events.
keep on keepin’ on
My apologies for taking so long to reply, it was my birthday a few days ago and I have been unusually busy in a number of directions.
Thankyou for your reply. I am feeling more positive today. Maybe its because I’m keeping busy getting his room sorted. All the equipment is being delivered on Monday. I do worry about his first night home and its just us in case he needs anything and I can’t help but as someone else said its the fear of the unknown and am sure we will be fine. Ever since he had the stroke what I have found strange is how everyone keeps asking me how I am. I kept thinking he’s the one thats had the stroke but the support for both of us has been amazing. Someone from the local carers support group introduced herself while I was visiting the other day so they have got my details now. His speech is improving. Because his mobility was so poor before the stroke due to his cerebal palsy I asked about the chances of him getting back on his frame. They told me the best we can hope for is that he might be able to do a couple of steps to transfer from wheelchair to his main chair hence why we need the ceiling track hoist but hopefully he can prove them wrong. If not we will make it work. Better get some more work done before visiting
Happy belated birthday
The simple reason being, you matter too!
You are in this together, and as Kev’s carer, you need to watch your health too.
Now here’s the long answer
Your husband is receiving all the care that he needs. But who is looking after you?
Your health could very easily suffer as a result of your loved one’s suffering. It’s very easy to neglect yourself, you don’t even notice it half the time, when you are so busy caring for loved ones.
Whenever someone is seriously like that, it has this domino effect that creeps in gradually over time. The anxiety and stress, not eating/sleeping well puts your body in a vulnerable position.
The psychological and emotional trauma of it all can very soon lead to your own physical illness or major trauma! So if you don’t look after yourself, you could very well wind up in a bed next to him.
Above all else, you need to take all the help you can get or that is offered.
You are going to need to eat well, sleep, talk to others, take breaks plus taking timeout for yourself…to do things that will take your mind off all things stroke and cerebral palsy for a time…even if only for an hour a day. And grocery shopping doesn’t count; I’m talking about “me time”!
Don’t forget to keep up with your own medications if you have any, keep on top of medical checks and take your blood pressure regularly.
And if Kev’s interested and feeling physically up to it, maybe he’d like to join us on the forum himself sometime
Our families are very supportive but its amazing to hear from people who understand what I am going through. Going to try and relax tonight. Tomorrow is a another day. Hopefully it will be a better one 
