Challenges of caring for a stroke patient

My husband at the young age of 59 suffered 2 strokes but was lucky in that it affected his recall, dysphasia and very slight right side (This has righted itself). My biggest problem is dealing with the solitude that you experience with a partner that is exhausted from trying to process, listen and talk at work and then comes home and is frustrated, tired, never smiles, half glass full very negative and not the man I remember. I feel guilty of I go out, even though he doesn’t mind. I feel helpless even though I continually have to remind him of how lucky he was, consultants and stroke clinician say how amazing he is doing, be patient, be kind to yourself, and it’s exhausting. He will put a facade on to others but not me……I get the real man. Just wondered if anybody else has experience of this. To top it off, having a live of music, since the stroke, his hearing/audiology has changed and this is his biggest cause for unhappiness. Stroke didn’t affect that part of his brain but it has only happened since the stroke. Hearing aids now and not a happy bunny. Tired now as 2:37am. Offloaded

Welcome to the forum.
In 2006, when I was 54, my life was changed forever by an 18 year old who lost control of his car and hit my car head on. I loved my old life, fit, strong, always on the go, up for anything. In one enormous bang I became someone in constant pain, who could hardly walk, waking up to 13 times a night. Knee replacements in 2009 and 2011 helped but I can’t kneel down. My shoulders, elbows, wrists, fingers have arthritis. I missed my old body every day. By chance I was driving my late husband’s Range Rover, not my Escort. The police told me I’d have been killed if I’d been in that. I don’t need reminders. I know I’m lucky to have survived but that doesn’t help me actually live my “new” life with a seriously damaged body. Your husband is struggling, doing his best in difficult circumstances. He doesn’t need reminders that he is “lucky”, every day is tough. When did you last have a holiday, a chance to relax, together? Your " old husband is still there, inside himself, as I am. I now have a different life, but it took time. Try to think of what you are both going through as a mourning process, grieve together, but find a way of working round what has happened. Does he need a less challenging job? Can life at home be less demanding? Are you both worried about finances?

Something like this turns your life upside down. Everything changes and it takes time to get used to the new circumstances. Some of it you may never adjust to.

My Dad had a massive stroke at 52. It took his right side and most of his speech. He learnt to walk again and to speak - with dysphasia and some confusion of words. All battery chargers or rechargeable items were shavers. Even his toothbrush.

His big love was photography, something he’d taught me. He was so frustrated that every camera out there was configured for the right hand, which he’d lost use of. We gave him a pocket Instamatic (yes, it was that long ago) which he could hold upside down and although he was delighted to be able to take photos of his grandson - later, grandsons - he was unhappy at the poor quality of the photos. In 1984, four years after the stroke, I found a standard film compact camera that did everything automatically. I bought it, tested it out left handed, and Dad got it for Christmas. He loved that camera.

Dad lost the ability to drive, and he regretted that terribly. And, he hated being seen in public, at least to begin with, until he was able to go out for walks with Mum and his grandson. Especially his grandsons when the second one came along. By that time he had his camera and had mastered it.

He was able to hear music and appreciate it still, but he lost the ability to read and follow print - at least, more than a couple of paragraphs - because he couldn’t retain it long enough to make sense. He was, before the stroke, an avid reader of crime novels, and missed that terribly.

Mum, on the other hand, struggled with the loss of intimacy - holding hands, kissing, especially. Probably sex, too, to be honest. She was forced to be the decision maker, which she hated. There were no quiet chats, no easy silences. Everything had to be planned, so Dad could cope with any trips, even shopping. She found that very hard, because to begin with at least, he followed her around like a puppy, uncertain of his surroundings, unsure of what was happening, and even when he recovered some of his memories and became more comfortable with his situation, Mum felt she’d converted from a wife to a nurse. And she knew that wouldn’t change.

Writing this sounds as if they were depressed all the time. It wasn’t that bad. They were devoted to each other. When Dad was dying, he made me promise to look after Mum, to see that she was alright. It took him a long time to get the words out, due to the stroke he’d had 32 years earlier. His last words came out much easier: “Pauline, I love you so much.”

A stroke is life changing. It’s a head injury with brain damage in layman’s terms.
It can change personalities or throw them askew for a long time.
My mother has had several TIAs
Do you have a local stroke club? can you get to a meeting yourself and speak with the meeting organiser? he/she might have some good advice.

Work will be exhausting for him let alone the frustrations he goes through.
He must be absolutely wiped out after the day.
His brain is working hard for his physical movements and then functioning for work and human interactions on top of that, it will be draining everything from him.
The same will be for going out - just for a walk would be tiring but then socialising would be as hard as work and he needs his energy for work the next day.

It must be absolutely devastating for him to have such a change to his body and life.
He needs rest and sleep.
Don’t feel guilty about going out if he isn’t bothered about going, it is probably too much for him after a taxing day at work, he might be glad of the time alone to rest/sleep to recharge for the next day at work. You are lucky that he is happy for you to go out, understanding your need to have some life.

Focus on his needs for rest and your need for fun, get a balance of you going out a couple of times a week.

Try some fun things on tv like sitcoms, some evenings he might need to just have dinner and go to bed or a nap or an early night.
Sleep is a major thing for stroke survivors, fatigue is a massive factor with recovery because the brain is working overtime and overwhelmed.

Try some sitcoms or comedy shows to see if it brings some fun back, it might take a while, he might be too tired to process it.

Focus on what he can do, if he just needs rest, let him have the rest for a few months and review.
Can you have a friend of his visit just for a short while, tell him only 20-30 mins for a cup of tea on Sat or Sun afternoon? A dinner party/takeaway with friends round, will be too much.
My mother can’t cope with more than two people at a time.

Post stroke is a time of constant adjustments to the lifestyle changes for both of you as he goes through recovery stages and plateaus.

Luckily for you both he is back at work which is a major thing to be grateful for, you are not pushing him in a wheelchair or spoon feeding him in bed all day.

My mother is not good with television that requires concentration or memory of the last few episodes, eg soaps (hurrah I can’t stand them!) or complex dramas etc. She loves simpler programmes now, like sitcoms, bake off, escape to the chateau, traffic cops she adores which she probably wouldn’t have bothered with before! She likes sitcoms the best.