My husband had a major stroke June 2022, he lost speech, the sight in his left eye and use of his right arm and leg. He was in hospital and then rehab for 4 months and had access to all therapies, he refused speech therapy completely. Since he’s been home his walking has improved with a stick and he was accepted onto a community rehab program however after 3 visits for physio and 1 for speech he’s now refusing to go back. The physio has bben for a home visit tiday but he just refused to do everything she asked. He does walk around the house but it is with a straight right leg, he just won’t try walking the way the physio has tried to teach him, also he won’t do any arm excercises. I’m at my wits end with him and evn the professionals are running out of ideas. Sorry for the length of this post, I’m so worried about the future and how long I can carry on like this.
Hi Shazam58 all us SS have to come to terms with what’s happened and too accept and it is tough the first few months but it does get better and staying positive and getting motivated is a struggle. Your husband should be grateful you’re there for him. But importantly your health and wellbeing is vital so ask everyone you can for support. Does your husband have any close friends who could support you and try to get him motivated? Hopefully other folks on here can offer further help. Our thoughts are with you.
Stay Strong Paul
Thank you for your response, unfortunately my husband refuses to see any of our friends he wouldn’t let anyone but me visit when e was in hospital and rehab. His Mother, who is housebound and Brother are 300 miles away. It’s not so much about motivation as he prabaly walks 2 miles a day round the house. I think its more that he doesn’t believe, or possibly understand because of cognition issues, that the exercises will help and he is just happy being able to walk as he does after 3 months in a wheelchair. Of course as he’s unable to tell me I’m guessing.
@Shazza58 it’s such a difficult position to be in as ultimately he has to want to participate in the rehabilitation process.
I would say try talking to him to persuade him it’s for his own benefit but if he doesn’t understand/comprehend that will be a waste of time.
Try having another conversation with the professionals, he can’t be the first person they’ve had in the same position, ask them how they got through to the others.
I wish I had a solution for you, unfortunately I don’t, hopefully there may be some carers here on the forum who have been in similar circumstances and can offer suggestions.
Take care of yourself too.
Thank you for taking time to respond. I have tried talking to him several times but he just wants to do his own thing.
Hi Shazza-- Do you think you could get your husband to look at this website? Maybe ask some questions of fellow stroke survivors? My guess is he’s afraid and thinks he won’t get any better and so has lost the “will” to try. Research has shown that they have taken stroke patients who have had no therapy for two years and after two years they began therapy, they showed improvement. So, it’s never too late. Also, physical therapy, including speech, is extremely difficult and tiring. It feels almost impossible to do the things they ask of you. It’s daunting to keep at it, unless you believe there is light at the end of the tunnel. I walked stiff-ankled for the longest time, and then I began to force myself to bend it. It took many, many months of forcing it before I began to walk more normally. Stroke recovery for many doesn’t happen over weeks. For many it’s months, or years. It’s a slow process, since the brain has to relearn/rewire–just like a baby learning to walk, talk and do things. If your husband could interact with other stroke survivors, he might begin to realize that there is light at the end of the tunnel. I was totally paralyzed on my left side. Now 4 1/2 years later I walk a mile a day, normally, speak, and play the ululele and piano. I know everyone’s case is different, but you only get to the light at the end of the tunnel by not giving up. I’ll remember you and your husband in my prayers tonight. Jeanne
Thanks for your response, unfortunately my husband has very limited reading ability. I’m still hoping he will cooperate in his own time, it’s just very frustrating as he is very determined by nature and I believe that if he accepted help he would improve hugely. Regards Shazza
Sorry to hear u husband will not try. The hardest part is that there is nothing much you can do expect be there for him. In time he might come round but till then try to encourage him with putting him under pressure ask him what he expects from life now and what ways can you both move on as a family. Sorry but there is no easy answers but the group will be there for you with kind regards des
This is so hard for you. I don’t think people realise it isn’t only the stroke victims who suffer, but people like yourself who have to live with the aftermath as well. There is not much more I can say, except I hope you find some support.
Take care, Jane.
Thank you for your reply. I have tried to ask him about the future but it’s dificult to understand as he cannot speak or write or use a keyboard.
Thank you, I do have support from friends and some professionals who I can vent to if needed.
Shazza Sadly, this all sounds very familiar to me. My husband had a stroke around the same time and lost his speech (which he has now regained) and use of his right arm and leg. His hand/arm are recovering but the leg is very slow progress. He is pretty much confined to a wheelchair. He will only do exercises on his terms which often do not really reflect the advice he has given. He shouts at me if I try to guide him. I am having flashbacks to when the grandchildren had the terrible twos. He has said that his anger and frustration spring from having nothing within his control. I have found the way forward is to give him a choice about everything so he does have some control at least over the little things. Do you want a wash today? How would you like to do this, that etc? What colour top would you like on etc? It makes life easier for both of us. I have accepted that his recovery is impacted by poor attention to detail on the exercises but living in conflict is equally detrimental. My husband would love to be mobile again. Yours has clearly made fantastic progress. Mine was stubborn before but the stroke has taken this to a new level. This doesn’t mean to say that his refusal to do exercises correctly or follow instructions doesn’t drive me crazy. I just have to remind myself that because of the person he is, he is going to recover on his own terms and it’s better if I just go with the flow.
Thank you for taking time to reply. It is so true when the experts say that every stroke is different. Some days I’m almost gratefull that my husband can’t speak because I know he would shout at me ut mainly it does exhaust me emotionally trying to work out what he wants.
Hi Shazza it is a difficult one for you determination is not something you can create the Ned and desire to be better and more mobile should push the drive, I know how he feel’s the multiple movements the physiotherapist s require of you to walk well are very daunting at first, it may be better that he builds them up and improvements will drivededir to be better
I think your husband might be trying hard to deal with one huge hurdle and until he somehow comes to terms with that all the other goals and targets will, in his way of seeing things, have to wait.
That huge, frightening, daunting, silent hurdle, is having to come to terms with being disabled, a life sentence with no known length. Something that despite waiting, does not appear to be about to disappear. So maybe wait a little longer?
He must find the need, the want to improve his lot. First he must learn what it is he is dealing with. This is not a broken leg that can be put right by waiting a little. Yet rushing around ‘doing stuff’ is no guarantee of progress either.
With effort and determination his situation can improve, but he must find that motivation. At times things move painfully slowly almost convincing you that you are stuck like this forever. Then there is a flash and you realize there is a direction to move in, there are possibilities and in hindsight you are making progress.
Looking back over all this I would much rather be the me I used to be, but slowly I am learning to accept how things are and I am hopeful about having a direction and being able to achieve success.
Sometimes doing nothing provides the break needed, the rest, which gives repair and healing a time to work.
All the best to you, yours and your husband,
he needs and appreciates your support,
be patient, there will be improvement.
Come back to this forum, ask questions, say how you feel.
Keep on keepin’ on
Thank you for your reply.
Thank you for your reply, I do find it hard when I see him makin progress in some areas (which is wonderful) but then in other areas he seems to not understand what he needs to do to improve, Regards
Use human psychology to get him to make the right choice, either dangle the carrot or wave the stick like cracking a safe you need to find that right combination to unlocking his motivation. It will boost you both mentally and seed up his road to recovery.
@Bobbi just posted really insightful thoughts imho.
As StrokeWarriors we all have different challenges and maybe those warriors who are the partners and family have the biggest.
As a warrior with the stroke I can feel in my body where my boundaries are and whether pushing on them has merit. I can also say with total conviction that the expert is the person with the body not the degree and a uniform.
For 2 years I’ve had a succession of PTs etc who can’t match exercises to a visceral understanding of where my development has reached. I’m just growing into some exercises ‘prescribed’ in my first month post stroke.
At the time that was a crushing experience. Honest and frank explanation of prospects seems to have been removed from the ‘professional’ vocabulary while the obviously ‘no-cloo’ expert is saying; " what you have to practice to improve is…" and I can’t get any activation so practice is impossible’
Coping with the continuous stream of unfamiliar feelings, possibly with altered emotions and heightened anxiety, possibly depression is a major drain on stamina & will , the adjustment maybe using most capacity
As Bobbi said; as the body owner something becomes noticeable (in my case a finger might twitch and the twitch can then be caused and felt on demand but not seen. After two months of making it twitch it will visibly move and a year later almost able to extend to push a light switch.
I can also say from my experience that my ‘spoons’ are less and get spent faster (Spoon theory - Wikipedia)
So being pushed when I’m not convinced that’s the right thing uses them up, frustrates, and angers - it’s a triple whammy when I’m already struggling. If your husband can’t/won’t? express all this he maybe doing really really well by a standard that’s not visible?
I believe a possible tactic is to be deliberately lucky IE watch for opportunity that arrives serendipitously and be prepared to capitalise. For a carer I guess that means observing asking, offering but you’ll have to evolve what works for all the warriors in your circle and it will be different in detail but possibly similar in the round to ours. One of Lea’s for me was suggesting we go for a drive to the beach, later a walk on the beach, then taking a ball to catch (which is still beyond capability but the arm of not the hand is moving better. Those two middle fingers are still incommunicado). The more tactics the bigger chance of finding useful ones, the more progress and then the more belief and so motivating and then progress so belief etc
Bobbi runs zoom cafes -1 today at 11 - (see the groups for ZOG) and I run a zoom meet every other Thursday - Next 23rd Feb - at 1300 on https://bit.ly/StrokeThuCafes that either and both of you are welcome to attend and speaking is entirely optional, we’ve at least one silent regular, others say little and some say lots. It’s always a small group
I also posted loads and loads of support group details a while ago in
I hope it gets easier for both of you. The 2ndry & tertiary affects are a whole other challenge only the peer support networks are aware of
Stay strong and flexible
Can you lookup Jill Bolte Taylor tedtalks. I had came across her when i had a massive stroke.
I lost my speech, i had paralysis on my whole right dominent side with sensory impairments. My language was damaged i knew what i wanted to say but my body wasn’t able to make the movements, to form sounds, and i have Aphasia so it was like all my words and spellings where in a filing system inside a snow globe. And someone had shook it!
Anything any everything i had learnt was inside this snow globe. I had to start filing and organising them by categories, by object, while unsrambling the words. This is very overwhelming.
He could perhaps feel that he has lost his identify and role and that their is no point due to sensory problems as my foot had felt like it was with a slegde hammer. He could be trying to protect himself from the pain.
He could have other issues that due to him not being able to communicate noone is aware of.
Its death of brain a hidden impairment so he wont have the movement so he will have to relearn these from memory. Its exhausting! Overload can happen very easily. There is no point in trying to tell him to do things as he knows you wont understand.
It like being like a child again and fighting for your independence. Show him the video or let him listen recovery does happen