I just need to talk.

My 40yr old husband had a haemorrhagic stroke 9months ago. Now he has left side weakness and struggles with his mobility. He has come a long way and I am so proud of him. He often has moments throughout the day when he is really down. Some days he doesn't say much to me. He was in hospital /rehabilitation for 6months. I was at home with our 3 children. 5yrs, 2yrs and a 6 day old baby at the time he became ill. Some days I find it hard to believe that this is our life now. We talk often about everything, but I still get scared and worry a lot. Some days I feel so down myself, especially when he's not said much. I have to keep going and stay strong. I'm still on maternity leave and going back to work next month. He hopes to return to work soon also. He wants some normality back in his life. Which I completely understand and I think it would be good for him also. Sometimes we have a great few hours but then by evening he's quiet and I know it's hard for him. Especially when he can't play with our kids like he used too. I'm not really sure what I'm asking but I just needed to tell someone who may understand our story.

Hi Soke, We are all ages on here, but some are in the same position as you. However, all of us can relate to you both. Sorry about his stroke but, as you say, he has come a long way. However, he is not the person he was and, like all of us, has to accept he is a new version of his old self. Nine months is still relatively early days. I am 14 months post stroke and still have ups and downs. What depresses me sometimes is knowing I cannot go anywhere of my free will. I walk with a stick, still have post stroke fatigue and could wish my weak arm more able. I miss long country walks, going abroad and going to the theatre. That said, I am in an up mood today and am cooking lunch. My partner and I still have short break holidays and I enjoy our garden and tv.

Try to do what you can together and with the children. He is likely, given time, to improve further. Make sure his return to work is phased and he does not overdo it. Best wishes to you all.

Dear Soki
Sorry to learn of your husbands stroke. What a dramatic disaster for you all.
Lets look at the obvious. He has lived. Most of us die. So he is a very special man. He has been chosen to live and in my opinion there must be a purpose for that.
Finding that purpose is , for me, very hard indeed.
Stroke very often comes with its own built in depression. He needs to fight that off and perhaps he has done so.
I have fought off the depression, but I have got "down" after about 15 months (I am now 18months). I don't do much. All my limited energy is fully used just to keep certain household tasks under control. As I don't do much, I have so little to say.
I am looking to find the "new me" and trying to do things that are the "new me". But it is much much more difficult than we can imagine. Same friends, same family, same house etc but I am not the same person and I do not fit in at all.
When I have a rare good day, I am expected to be the person I used to be. As though I am now better and can return to normal. No way. I will never be better. There is a bit of my brain that is dead and its not going to come alive. There is no return to normal. Maybe a new normal .
No doubt he looks very well. Most of us are disgustingly well tanned. It is not just difficult, but nigh on impossible, for your friends to see him looking well and to graso he is not at all well. If he had lost a leg then sympathy and understanding abound. But lose a chunk of brain and no one really wants to know.

Thank goodness your children are well under 7. They can grow to know their "new" Dad and not harp back to old Dad.

You say he has good hours and is then quiet. Is it that he has used up all his energy and his brain now demands rest ?? I think of this as having a couple of AA batteries and if I use them up then I am finished for the day.

No two strokes are the same, but for me 9 months is nowhere near enough time to return to work. Has he (or is he able to) got all his benefits ? Returning to work might be a long term answer but is that happening soon ? He may wish to get back to work, but he will not become well just because he is working. Would he be better in a different line of work ?

There is so much to learn about stroke. Not so good when we are the guinea pigs !

Finally, I have banged on about what its like as a stroke survivor. But you are a carer. Maybe you would benefit from joining a carers group. Then you would be with people who understand your position. My local stroke group have a brilliant carers group.

Best wishes and say hello to hubby from me

Thank you for listening John. I'm just so thankful that he is here . Yes the return to work will be phased and to a more suitable role .

Thank you Colin. He is indeed a special man and our faith has gotten us through everything so far. We feel blessed. We've spoken about how young the kids are and that they should cope well. They are already they are relaxed around him which is good.

We are still being assessed for benefits and the return to work would be very slow. His employer has been very supportive throughout. He would be in a new role.
I've not had time to go to a carers meeting but have met another mum at playgroup going through a very similar situation and it's has helped to talk. I do hope to get along to one soon. Thanks

Well done Soki. You are doing well. Just remember to look after yourself as your family need you fit and well,

Soki, I'm sorry to be a brit brutal but It is usually a while before the penny drops that the stroke is going to effect one's life for ever. Most of the problems you mention will ease with time but some things may never come right. My doctor gave me that advice in the first few days and although I didn't want to hear it, that was a very sensible comment to make.
You are obviously doing all the right things, welcome to this forum which is full of caring people.

Clearly no two strokes are the same, so recovery will vary widely.

I was in hospital for 2 months, and unable to eat/drink for a further two. However, I was able to return to work (albeit on a phased basis) after 9 months, I too had a supportive employer and line manager. It then took me a further 4 months to work back to full time (and some find that too much for them).

But now, 18 months on I am back working full time - but with a different working pattern which gives me one day off per fortnight - which I find essential for recharging the batteries.

So there is hope - but he/you will have to take it one step at a time, in a way which works for you both - not for anyone else.

Hi Soki
I'm sorry to read your story but can relate to this too. My partner had his Stroke in February 2017, he spent four months in hospital and is still undergoing therapy at home (although this is coming to an end soon). We have a 17 month old son and whilst my partner has made amazing progress, he is stuck between two moods of completely elevated or completely withdrawn. Sadly it's more of the later recently as I see him pine for his old life and see how frustrated he is that he can't be the dad he would like to be. It's put a massive strain on our relationship as I try to juggle work/ parenting/ being there to support my partner, I feel like I've become the "bad guy" in the relationship as my words of encouragement are dismissed and I can't seem to say the right thing. I'm struggling to keep my chin up and feel so sad for our beautiful boy who must be picking up on this all. It's a tough road, I can't help but feel there's a long road to go down still. Wishing you lots of luck on your journey and a smooth return to work for you . Natalie

Hi Natalie,
Thanks for reaching out to me. I too am very sorry to hear about your husbands stroke and how it's affecting you and your son. Things do get better a bit by bit. Since I first posted my husband is remaining positive and working very hard with his physio at home/gym. He is still improving and his moods are much better now. I've learnt to relax a bit more and enjoy our time together. We went away for a few days to the seaside, just me & him so we could both recharge. Thankfully we have a great family who help out a lot. It is a long road as you say and sometimes it's hard to see just how far we've come. I am thankful he is here. Luckily we had a joint sessions with a psychologist whilst he was in rehab. It was a great help and something I would recommend if you are able.
We are having more good days and great moments now. I wish you more great days ahead too.




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