Nightmare journey

Hi, my name is Sue and I am writing about my husband Ian.

Ian had his massive stroke nearly 26 months ago and to be honest because of the severity of the stroke I've found there has been no help available.

Ian was in hospital (3 in fact) for 10 months and eventually we found a care home willing to look after him. Up to this stage he had been assessed and turned down by 12 care homes in our local area and further afield. Many more I contacted but they said no as he has behaviour issues. This is caused by the fact he had 40% brain damage (frontal lobe) at the time of his stroke. Now nearly 2 weeks ago he was moved to an annexe of the hospital for a psychiatric assessment. We are not sure what will happen to him after this assessment.

The stroke itself has left Ian with left side disabilities. He is in a wheelchair and basically cannot do anything for himself. He does not cope at all well and of course since lockdown things have got a lot worse. When he was in hospital I visited him everyday for several hours. Then with the move to the care home which is a considerable distance away I have visited 3 or 4 times a week. We spent the day reading, in the garden, doing exercises and board games. I felt the stimulation was so important. Then lockdown, need I say anymore.

Ian has had a very difficult time and still it goes on. Personally I wondered if anyone out there has had a similar stroke journey. I would love to hear from you. Even though I have family and some lovely friends I do feel very lonely at times.

Kind regards


Sue, I have not had a stroke experience like the one you are going through. My stroke was 2 years ago and thankfully I am doing quite well, although I don't have much stamina.  All I can say is that the brain does rewire itself.  I was completely paralysed on my left side, now I can walk a mile a day.  Your husband has suffered more brain injury than I did, but that doesn't mean his brain won't do some rewiring.  That means he can have some improvement over time.   So, don't despair.  I went to a psychologist for 2 or 3 months.  She helped me find ways to cope with what I was going through.  Maybe a counselor could help you.  I know what it's like to feel so alone.  Right now your whole life is, of course, revolving around your husband.  You are probably exhausted with going back and forth to his care home.  Try to find something to do, that is just for yourself--like a bible study class(which I do), a card group, etc. to inject some friends and happy moments into your life as you deal with the difficult part.  I'll remember you and your husband in my prayers tonight.  Love, Jeanne

Dear Sue

I missed your post. 

Only when another person replied then I saw your post. 

Did Ian have a clot or a bleed ?

Whichever, he has really gone thru the mill, hasnt he.

At his stage muscles can start to cease up so I hope he is moving every muscle to keep what fitness he has so far achieved. Recovery can come at any time. Never give up, its never too late for the brain to restart.

I hope Ian smiles several times a day, smiles work miracles in our brain

Best wishes





Hi Jeanne

Thank you for taking the time to reply to me. It's good to hear your stroke journey. I am very impressed you can now walk a mile a day, quite an achievement.

 Since the restrictions were lifted, after lockdown, I was able to visit Ian in the garden, under a gazebo for 20 minutes once a week. Unfortunately by this time he was not in a very good place, a lot of it was the lack of stimulation. Ian demands a lot of attention which I was able to give him before lockdown. He did understand some of what was going on but when we had a video call he expected me to visit. At least now he is in the hospital annexe we get a 45 minute visit indoors, this is much better for him and me, the garden visits I found very stressful.

We did have a very active Social Worker who arranged someone from the brain injury unit to visit Ian before lockdown. This was very useful as he talked to some of the staff in the care home too. Her contract ended in June but I will always be grateful to her for the help she gave to us both, I trusted her too which was very important.

At the moment I am hoping this assessment will be of help to Ian, I have to stay positive. Like you I enjoy walking and sometimes meet up with friends, weather permitting, to have a long walk.

Kind regards



Sue, youve had a tough time. I identify with your story, its awful. I echo what others say, its never to late to make improvements following a stroke but set backs (no matted how small) will take the wind out of the sails...

My concern is who is supporting you? Here in my 'patch' of Swansea we have a great carers centre who are there to support people going through similar experiences to yourself. There are national organisations too,  its worth searching around for a relevant service. Our helpline 0303 3033 100 may be of some help to search some options.

 Its really important you accsss support for yourself, i cant stress that enough. My work is generally 50/50 when i work with a family. Looking out for carers is a natural part of my role.

I do hope that you find some support, answers and help that will aid you and Ian through this difficult time.

Best wishes,


Hi Colin


It is good to hear from you. Yes Ian had a blood clot, it was all very sudden. He was always very active and had spent the day before in the garden, it was the heatwave in July 2018. He had been bowling that week too which he really enjoyed.

As you say exercise is really important and I tried to do the hand and arm exercises with him at every opportunity. My son did too on his visits. Unfortunately after such a long spell of not seeing either of us he finds the most simple task extremely difficult now.

I try and stay positive, I am hoping this assessment will be of benefit to him.

Kind regards




Dear Sue

Ian same as me. A clot out the blue. I was quite fit for my age and when younger i was very fit. Not stong, but stamina and fitness. I lived on a tennis court, just social tennis, but it gets us fit. Most of us survivors were fit. I dont think many will survive a stroke if we werent fit.

Every stroke is different.

best wishes



Hi Sue,

I was a less severely affected version of Ian when I had my right-brain stroke ten years ago. I had few outward behavioural issues but internally was torn in half with depression and anxiety, trying to make sense of why life had done such a terrible thing to me, half-paralysing, part-blinding me and leaving me unable to eat or drink or be continent. Stroke at any time is a very difficult thing indeed.

Time is, thankfully, kind. With great medical care I overcame the depression, anxiety and almost all other deficits. Ian's saving grace is that a stroke in the right side of his brain should still allow him to be able to speak and engage in therapy. I eventually got back to working full time, travelling alone internationally and now complete half-marathons. My depression is long resolved and I deal with anxiety now better than I did prior to my stroke.

As others have mentioned, you need to look after you. You sound to be doing everything you possibly can and should be proud of that.

I found a lot of my issues in dealing with others was because they truly could not relate to what I had been through, which I think now is understandable but at the time being fobbed off with "at least you aren't dead" or "a wheelchair isn't so bad" is no comfort at all and left me feeling more isolated than at any time in my life. My marriage foundered because I could not drag myself out of that dark place for two years and my wife just fell out of love with me. It was awful but she did reject support from or meeting others.

Find other spouses and carers to talk about this, please - your local Stroke Association may have a carers or local group you can engage with. There are many positive stories of people and families that came through the darkest of days to find that better times lay ahead.

Stay positive and post any thoughts or feelings here, you should always find a friendly voice or two.


Keep well now, both of you,

Damian (Eurocracy67)



Hi Jason

Thank you for taking the time to write to me. After 26 months this is the first time I have actually been in touch with a group. It is good to share information and also get encouragement from other stroke survivors and carers. I know everyone says I need time for myself but it is very difficult, my whole day and sometimes night is taken up with thinking about what has happened to Ian. I just can't switch off. Walking for me is a good therapy. It is a little easier now that I can visit Ian, even for a short visit.

I do appreciate the information you have given me.

Thank you, Sue

Hi Damian, it is so good to hear about your stroke journey. Thank you so much for sharing with me. I notice everyone says how having a stroke causes such great anxiety. Ian has been like this too, frustration also. This is partly why he has behaviour problems, caused by the frontal lobe stroke. There have been many upsets as a lot of staff do not understand this type of illness.

We just take one day at a time, that's all we can do. Covid also has not helped the situation at all, not just us but everyone.

Regards, Sue


Sue, you are most welcome :)  Its great that your reaching out, sometimes it takes people decades to seek some support. Your doing well!

Best wishes,