Fibromyalgia Action UK


My 82 years old husband came home from hospital after suffering a stroke , he can use his Arms and legs and talk, but he just wants to lie in bed.

He has carers who come in 4times a day, and I can hear him telling them he just wants to stay in bed, and be left alone.

He was in hospital for 9?week, and has been home over 2 weeks, been downstairs three times, with help of Physio's , Psychologist , but always wants to get back to get back to bed.

DDistrict znurse has told him he will lose the use of this legs if he does not move more but to no avail.

What can I do?

27 Replies

He may have depression, very common after stroke. I know that's of no help, just going by my Husbands experience. Lou xx


Having worked in a stroke unit for 15 years, I can tell

You that he will feel very tired after all he has had a

Brain injury.

Also people who have a stroke always get depression

Does he appear to you to be depressed, after all you

Know him better than the district nurse. Let him have

Him breakfast in bed, and then tell him he needs to

Get up to have a shower or a wash, strip the bed and

Don't make it until after dinner then let him rest on the

Bed, it's very hard to look after people after a stroke

They appear to have given up on life.

You did not say how the stroke had effected his movements

But if he is having people I must think that he has lost

Some movement in his leg and arm

I can tell you that it's like greaving and he will feel just

The same as if he has lost a loved one only he has lost

Some use of his body and he will not feel the same as

He did.

If you feel that he is depressed you need to speak to

Your doctor, it's one of the things in life I don't understand

Is why when people have strokes they are not put on

Anti depressents.

I can tell you that he can continue to improve for up to

A year but as the month go on improvement will be slower

He may also have pain in his shoulder and can be very painful

Be patient with him it's so hard I know, but he will become

Himself again, get friends to visit or family just to talk to

Him that some times helps.

He's had control taken away from him like a child, people

Are saying come on get moving, when all he wanted to do

Is sleep.



You managed to put into words what I couldn't, thank you. x



I think that some times a stroke in away gets

Over looked it's a case of we can't see the brain

So it must be alright. People don't understand

Not even the nurses that visit after all they are

Not experts in stroke, they come round don't

Realy have time to listen, and learn to understand the patient and what there loved

Ones go through they need support as well.

I would not wish a stroke on anyone.

I hope your other half is on the road to

Recovery and that you both have your life




Yes he's doing really well had age on his side, used to cycle to work and back a total of eight miles a day, it really struck out of the blue. Lou x


Do you have social workers? If you

do speak to them they can probably

help. Do you have physical therapists coming in? Hope this

helps X


Hi Fluffymare

I am so sorry to read this, and I genuinely hope that you can find the answers that you so desperately desire and deserve. I agree with what vivien60 has written. I understand it can he hard after a stroke, as anything to do with the brain is exhausting and that it can lead to depression. However, it can make him worse by not doing anything at all.

I want to wish the both of you all the best of luck for the future, and I genuinely hope that he can make a full recovery in time.

All my hopes and dreams for the both of you.

Ken x x


I wish I could help, my father had the same problem with Mum. Dad was not prepared to be strong, and she got much worse and did lose the ability to walk.

Your husband must have had the stuffing knock out of him and all he wants to do is hide. You have to think what you want and don't forget to look after yourself. All the best.


My mom had a stroke and I found she was really tired and just wanted to be left alone, as I had worked with Stoke. And the elderly mostly I found you have to start getting him up now. Try and get him out of bed for meals and keep him up, but you got to be a bit firm in the early days as they can get round you in the first few weeks, get some support, ask question, I talked my mom to catch a ball again. Ha ha it was fun and she started to want to help herself more, she walked with a stick her memory is good I've got 99% of my mom back. she started doin Her exercises. Now she still has problems some days but she goes shopping and is now driving, walking and moms balance is goodm


The trouble is with my husband, he gets really breathless and agitated when the Physio's get him out if bed, and he has stairs to come down, which are proving to be a problem, and they said to leave him where he is when they are not there, which again is leaving him in bed a very long time.

They brought him home for a home visit before he was discharged he did the stairs, but frankly I think they said he coukd do more than he could daily, they sat him out in a chair for a couple of hours, and he was always in bed when I visited him, they did say he was reluctant to do much, but he does have heart trouble, and while he was in the acute Hospital it was discovered that he had an anuerysm 8.5cm which they said would kill him if they operated. So a little worried about that, said it could go anytime.

Just don't want to see him waste away in bed, as it really making my anxiety and Fibro the worst it has ever been.

If he does not improve shall gave to think of other options asvcaringbfor him at home is proving very hard, only me to do the caring.

He does have 4visits a day but they are only here for a few minutes.

My Son lives 1 1/2 hrs away, and my daughter in law is in hospital at the moment having complication with the birth of their third child, Ceasarean on Monday so they will hzve their hands full,


When my gran had her stroke she took to her bed, it was easier for my granda qndche let her. We tried to get her out but granda was prepared to leave her there and just trot food in and out. She never got out of the bed. That was not very 25 years ago and thankfully things have my bed on from there and depression with strokes is more recognised. As you have already been advised seek help for his depression and try to be strong in a gentle way.

Through all of that remember your own health and take care. My best wishes go to you both :)


How old was your grandma, my husband is 82 and he can walk with a Zimmer frame, to the bathroom but is getting weaker through staying in bed, and everyone keeps telling him if he continues he will lose all muscle tone. And he is losing all recollection of am and pm. Which is disturbing for me in the night, as he puts lights on and does turn them off, or is asking what time is it, and what he wants for his breakfast at 2-3 o'clock in the morning, intake a sleeping tablet and once awake cannot go back to sleep.

My anxiety and depression are the worst I have ever had them, kicking off my Fibro, exhausted in the day looking after him. Carers come in 4times a day, but only stay a few minutes,

If it persists shall have to look other options

Just wants to stay in bed, Physio's are trying with him, but he is very reluctant.


My gran was in her 70's so was granda. She gave up through depression and to be honest my granda let her :( you are trying despite the difficulties it is causing, so more power to you :) take any help you can get and don't be afraid to ask. Look after yourself though as I have said before as people can overlook the carer. Big hugs to you :)


Thank you for your reply,

My husband is 82 and I am having a real hard time with him, he can talk use his arms and legs , but just wants to stay in bed, and be waited on.

He does have heart trouble and discovered he has an aneurysm 8.5 which has worried me to death.

The trouble is i gve severe anxiety and fibromyalgia, which has worsened since he had the stroke in August going backward and forth to the hospital, now having to deal with him at home, I am completely shattered and feeling really unwell.

He has 4 visits a day from carers,Physio's, who are finding him rather unwilling to co-operate, when they get him downstairs for a few hours all he wants to do is go back to bed. He also is having a Psychologist visiting him, trying to get him interested in things

But when they have gone he just wants to lie in bed, I know it is usual to be tired after a stroke,mbut this cannot go because he will lose the use of his muscles.

I am the sole person dealing with this and I am very depressed.

The GP said all his obs are ok,mand he is more worried about me, asked me if I would like to go to a Psychiatric Hospital, because I feel suicidal, or put husband in Respite Care.

My Son has his hands full at the moment ,his wife is in Hospital. With complication having a baby, got to have a caesarean on Monday so I shall not be seeing him at the moment.

It never rains but it pours.



I just wrote a huge answer and whoosh it went I know not where.

I expect I wasn't ment to send it.

So just saying.

Hang in there it is early days for you both.

Throwing up a prayer for you.

X Ned X


I have been thinking of you on and off all week end.

How's tricks?



Tricks are not very good, I am so exhausted, with husband keeping me awake at night, even with a sleeping pill, I am shattered and feel very unwell, after 3 months of this I need a break, Taking care of a stroke patient is relentless, especially on your own, yes Carers come in but just for a few minutes, the rest is down to you,, then the Physio's, District Nurse, etc.,

My anxiety is running very high and fibro, feel very emotional and sometime suicidal.

Can't see the end of all this.

The Psychiatrist I see once in a Blue Moon said I need relaxation, fat change .

Thanks for your concern



I do feel for you. It must be so hard.

Apart from anything else anxiety is depressing and drains energy.

One thing I wanted to say but deleted it by mistake.

It is contrary to others thoughts were was.

We all have to cope with our bodies our own way. part of being knackered is the energy we put into wishing things were other.

If your husband wants to stay in bed don't worry about the knock on effect re muscles ext. when he feels a little better he will start to take interest in things I am sure.

Could you get social services to asses the house and maybe place a bed down stairs. You may feel easier if he is in the heart if the house so to speak. Even if he is asleep.

Get a commode if you have no bathroom. I have some sympathy with his reluctance to tackle stairs. I was knocked off me perch recently for 6 weeks and I really didn't have the energy even to shower. Even going to the loo left me gasping and laid flat.

And stick the radio on. Classic fm is peaceful. R4 sparks interest. I have just listened to all in the mind. Fascinating, twill divert your mind a bit. And might engage him.

Or my favourite is the old songs from my hey day. On sat tony Blackburn does a chart programme and covers 2 different years every week.

I do have some vague understanding of your worries. My son was very ill and I spent huge amounts of effort trying to inflict my ideas on was I thought was the best for him.

Until my mother pulled me up short. And said stop don't keep on all the time.

Thank you mother says I.

And I was young with a helpmate to share the physical work and emotional burden.

And he was only 7, and easy physically for me to manage.

It was the anxiety that did for me. And your carrying a double burden.

Remember all things pass.

One way or another.

And don't forget Depression is a bugger for clouding facts.

Throwing you both a sprinkling of star dust.


Hope star dust shines a little light in a dark corner.


Just thought.

Do you have a social worker involved.

Don't dismiss this if not.

I did. And eventually did get help. I wish I had met her sooner.



Hi Nedd,

I do have a Social Worker, Physio's, District nurse, etc., but they are here for a short time , and the rest is up to you.

Can't have a bed downstairs, because he needs a Hospital Bed, with a Air Mattress, they are Hugh and we only a rather small Lounge , besides it would mean he was downstairs and I would be upstairs at night, which means I would have to come downstairs to see to him, and he has this problem at the moment og mixing his am and pm's. The Anxiety is bad enough but the Fibro pain is really what does me, and the fatigue..Dr has doubled my sleeping tabs, but don't know how I feel about that

Having a job making him eat, I have no appetite myself, have to force it down, and thinking out appetitising snacks is hard although the district Nurse gave me leaflets how to increase calories, all stodgy things.

Depression on top of everything, that is what I am getting.

Thank you for your concern and I will look out for the Star Dust tou sent

The Samaritans have been great, just listening to you and being helpful

One piece of good news, my Daughter in Law gave birth to a baby boy yesterday

Named William Jack, been sent masses of pics and seen him on Face Time on my IPad

Pat xxx



How are the new family doing. Nothing like an addition to the family to lift the spirits.

Hope all is well.



Thanks Ned, They are doing fine, hope to see him soon.

My own situation is not much better, and my Fibro is as bad as ever, but looking at some suppkements to try to ease it.



How's that baby and how are you all doing.



Hi Nedd

The baby is doing fine, keeping my Son and his wife up at night, but that's what babies do.little devil

I have just started a new Antidepressant, Venlafaxine, getting a lot of unpleasant side effects, but only been on it for 14 days, hope this one works.

My husband is making slow progress, but I can see he will never be much better than he is now, his memory is very bad

He looks so frail. but have to carry on.

I hope you are feeling ok at the moment and I hope you and your family have a Happy Christmas.

Thank you for your concern, it is much appreciated.



Hi I hope you get all the help u can get as I never got any I had a stroke in February last year and because I would not let the add it me cos I know the put me on the acute wade and I had just lost my brother on ther 3 weeks before so I just got my husband to take me back fist think the next day they let my go hose cos they did not wont to corse me any more stree so I never got any help with Physio or any think just lots of hospital appointments that's all and I did get depressed cos I could not go back to work and not not do thinks I had always do the doctor give me pills for it but when I found out the I had got APS and that's wot corded me to have a stroke I told the doctor I did not wont them no more so I came off them. I was taking back in to hospital in December I had lost the use of my leg and numbness in my face did not feel good this time so they did all test put my on the acte ward right nest to the bed my brother die in was not happy so told them to keep the curtains shut on that side my test come back they sed it was not a stroke but all singes of a stroke so was going to have more test and the OT came to see me and asked me if I wo go in a care home I am only 53 just for 6 weeks rehab I sed no I work in care homes for 10 years I not going in one at my age they nothink wrong with them and I know the one they would put me in its nice but not for me so after 4 days they let me go home with conditions that I stay in bed till my rails had been fitted my husband had to go back to work and I had DN coming in to do bloods so had to get up at 5 in morning with my husband so I got the rails fitter about 3 weeks after now got OT coming in and DN And physio coming in to help me they sed I never got all this befour cos I wo not let them admit me so I hope u get all the help u need let him go for rest bite give u a brake from it all good luck xx


Depression after stroke is very common. It is harder to come back from than the stroke itself. Tell him you understand and you wont push him but he needs to meet you halfway on this one. Talk to his doctor and perhaps he may prescribe anti depressants. Im 18 months after stroke. Im still battling depression.


Hi Jennifer 53

My husband died in February, and since then I have moved to live near my Son, after a very traumatic 6 months.

I am slowly getting back to life without my husband, but thank you for your concern,




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