Advice on family life post-stroke

Hi everyone, My husband had a serious stroke at the end of Sept which came out of the blue. He is 55 and his work does not pay sick pay meaning he went straight onto SSP as soon as he had the stroke. I work full-time, work from home, and can cover the bills. My husband came home 4 Nov and is making great progress but I get exhausted juggling caring for my husband, work, therapist appointments, and my teenage son, who is taking GCSEs this year. Physically my husband is improving, but his speech needs a lot of work and this frustrates him. I find the situation frightening, especially as no-one can really guarantee how well my husband will recover. Anyhow, any advice on how I can best support my husband, while also avoiding burning myself out. Any positive recovery stories also welcome as it is sometimes hard to see beyond the present to a time when my husband will be able to communicate a little better. Many thanks, Cat

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Hi Cat.I am sorry to hear about your husband’s stroke. There is lots of hope for you both. He is making progress you say and that is good. You will find words of encouragement from all on this site. His speech will improve. Have you help from a speech therapist? My story is also very helpful for you. I was in hospital for five weeks, unable to swallow or speak, no movement on my right side and fed through a nasal tube. I now walk well with the aid of a rollator, eat and drink normally and my speech is good enough for everyone to understand me, except my husband who is “wife deaf”. Look after yourself your son as well as your husband. Any help and advice I am pleased to give. Take care Lilian

Cat. Your husband’s stroke is very recent and he sounds as if his recovery is progressing. Stroke is very emotional for the survivor, partner and children. My partner thought our life was ‘over’ when I first came out of hospital it wasn’t but seemed so at the time (six years ago). I got him to join a local carers group and have time away from me to do other things. The Stroke Association can help you re benefits.

Six years on, our life is much better and we can enjoy short breaks and day’s out. As a survivor, life is still frustrating, but better than the alternative.

Hi Cat, as Lilian says there’s lots of hope for you both. From your message I see that he is able to access therapy and I hope this is for speech and language. If not ask your GP for a referral. Hopefully therapists can provide “homework” and repetitive work will help improve his speech. I hope you have the right detailed speech diagnosis so that you can apply the right exercises. You are around 12 weeks into recovery and this is very early days-measure this in months and years. His brain will still be in a muddle and trying to settle. Watch out for fatigue, anxiety, unhelpful thoughts, anger, all common after a brain injury and can make things harder. I guess he will have to do some speaking exercises on his own, never easy to be self motivated but hopefully with the right exercises and encouragement he will see some improvements. Repetition is the path to improvement. You can support but he has to do the work and be responsible for his recovery. I’m approaching 6 years into recovery after a haemorrhagic stroke still trying to improve! Best wishes

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Dear Cat

My speech recovered without therapy. I worked out that the speech thing involved
hearing a wall of noise from others, then
sorting the noise in to words then
trying to grasp what was meant then
Convincing my mouth to speak the words in reply.
After three months I could just about converse. After one year I could hold a conversation with tolerant people.
The problem is known as aphasia.

We recover at different rates. No two strokes are the same. There are apparently well over a million stroke survivors in the country.

I was paralysed at first. My right hand worked but no other limb. Couldn’t even sit up. On day four an amazing rush of energy rushed through my body and I got out of the bed and walked. By keeping every digit and limb moving I got good physical recovery. Miracle. Very rare but it happened for me.
For your husband, the brain will recover very well for about three to six months and quite well for about two years. Known as neuroplasticity. I call it rewiring. It is down to him to effect recovery. No one else can really help, we must do it ourselves. Being positive is vital.
The after care is atrocious. I hear that there are moves to train up medics to deal with stroke. I know one lad who is getting trained.
I live in deepest rural Essex and the support here was well above average. I am afraid it’s a postcode lottery.
I can drive. I am a chartered accountant but ability in anything like that has gone for ever. So I wait on tables and serve tea and coffee. This makes me feel useful.
I have two online pals at about 50 years old. They have both returned to work. About two years post stroke. Both found post stroke fatigue a big issue, but they worked around it.

Then we come to you. It is important that you do not burn yourself out. From day one I convinced my other half to ease off. After three months I managed to care for myself to allow her to take three days away. Visiting family.

Like others who have replied, I too am six years post stroke. I dig my very long garden. I adore the big black cat that adopted us.

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Hello @Imagine, (Cat), carers from a stroke survivor’s perspective are considered the a-team, it is important you get reprieve, as well, so that you can recharge your own batteries. How well your husband will recover is only measurable by the individual, the phrase, how long is a piece of string comes to mind with this question, as with length of time to recover. Every stroke is different, every brain is different. However, it is important not to drop the ball, and keep rehabilitation the primary goal. I am one year and a bit past a stroke from September 2020. I still have a lot to work on, and I have a lot of recovery left to go. I’ve given myself a two year basic schedule before reassessing where I am at.

How I have encouraged my partner to have a break, has been time away while a friend has “babysat” me, it usually has been a weekend away with her friends at their house. The longest was five days, but that came later on in my recovery. This can be good for the survivor as well, because friends offer a different sort of conversational care, it may help with aphasia too. If you’ve got the space, setting up a spot just for you might be a good plan, it’s good to let survivors get their independence back by themselves in a safe environment.

In the early months, I had nibbles, miso soup, cake, fruit, and a kettle close at hand. this way I didn’t have to bother my partner for food if I was having a bad day. If you have an stroke survivor group near you, it’s a good way to allow him to be around other survivors while you go off and do something else for an hour or two. If that group meets online, it usually is for a good hour. Check the net for groups near you or contact the stroke association. He might not be ready for this, considering the stroke was so recent.

As for worry, it will take time to notice the milestones, but there’s no point in worrying for both of you. Stroke is frightening, but as survivors we have proved that we are pretty rugged in the scheme of things to have managed to scrape through the ordeal. He will probably be having his own anxiety issues, your stoic will help lessen his anxiety. Easier said than done, but this is the recovery stage, it is the stage of getting better. For six months his brain is going mental with repair, neurological-plasticity is on overdrive, and this when improvements should be more rapid. It all slows down after that, and more adjustments need to be made. Help where you can, my partner only helps if I ask for it. This has been good because I’ve achieved some of my own successes by myself, and this has always boosted my self-esteem, but it depends on his level of care needed. Everyone is different.

Hi Lillian, This is really encouraging. He has a speech therapist who comes twice a week and we have some apps to use too. It is very reassuring to hear your story as I sometimes feel overwhelmed. Glad to hear of your excellent progress too. Take care, Cat

Hi John, I can fully relate to your partner. I felt like he would be placed into a care home and I would effectively be a ‘widow’. Things got easier and he came home but it’s been very hard. We had our first weekend trip away last weekend so I am hoping this is the first of many. Great to hear your progress. Take care, Cat

Hi Patricia, yes, he has speech and language therapy twice a week as well as homework exercises. He also has physical and occupational therapy too. It’s reassuring to hear that 12 weeks is considered early days and time is a healer, take care, Cat

Hi Colin, what a lovely message and I am so happy to hear about your recovery. My husband, Simon, is very positive and has started saying words and phrases. Today he said ‘I love you’ to me which made me cry. I think a cafe type job would be great for Simon in time. We have two guinea pigs and Simon loves chatting to them. They don’t know that his words are jumbled as long as they get some lettuce. Take care, Cat

Hi Rups, excellent advice here about taking time out. I have been so busy worrying about my husband that I haven’t given myself any me time. I’ll try to change that in the new year. Great to hear about your recovery too. Take care, Cat

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Cat,it does get better. We are away at the moment. It’s a bit of an effort for me, but does him the world of good. Interestingly, I do more when away, because I have to.