Here I am in a Saturday night, feeling so lost.
My husband (64 and perfectly healthy in every aspect) suffered a stroke in October, taking his right side and speech. He has been home for 4 weeks now. I am lucky to be able to work from home in the short term.
The first week left me thinking, I am out of my depth here, I am never going to cope! The care package i was given was just not working out, not their fault , but i was able to feed him, dress him and change him when necessary and not on 4 specified time slots. That became more of a problem than a benefit as the first call was 6.30 am
During the second and third week, i found my feet and got some routine going and felt quite confident that this was all going to be alright!
My husband started his physio which has got him walking some steps with the aid of the worktop/stick. I was so thrilled for him . He also had managed to get control back of his bladder/bowels, all was going great guns. Of course, he was tired but on the whole things were looking positive. Did a lot of sleeping but we could have 2 or 3 hours awake several times a day.
This last week we have hit the fatigue wall. He is so tired, probably as a result of his physio 3 times a week. The period of time he is awake is just diminishing . It is becoming impossible to take care of personal hygiene , feeding & drinking sufficient fluids, a few exercises for his physio and generally getting him to engage in a window that is just shrinking!
Today , he has literally been awake about 2 hours in total at various points before just falling asleep. Then you get the added complications of constipation and today we seem to have lost control of the bladder again.
So yes, Saturday night, sitting here typing this probably feeling a little sorry for our situation but hopefully this is a temporary setback. Are all these things quite normal, I guess there are going to be 1 step forwards etc days.
I guess i am looking for some reassurance as I really dont know what to expect.
Hi Jan @Stringyj welcome to the forum. Sorry your husband has had a stroke.
Stroke recovery can very much be 1 step forward & 2 steps back. Your husband could well be suffering fatigue after all the physio etc that he has done. I know in the early stages after my stroke I was so fatigued I couldn’t do much & slept loads.
I don’t know specifically about loss of bladder control again it could very well be fatigue related. It may be worth checking with a dr.
If your husband isn’t eating enough try adding some supplements to his diet. You can mix things like marvel dried milk powder into things like tea & viffee, yoghurts etc. Or you could try something like complan. Speak to his GP about something for his constipation if it doesn’t resolve…you can buy things like movicol, fybogel from a pharmacy.
Don’t forget to look after yourself too. It’s really important to take time out for yourself so you can provide the support your husband needs. You will get into a routine in time too.
Sending you my best wishes.
So sorry you have had to contact us. Please come here for support whenever you need to. Or you can post here if you need to shout at how awful the world is.
Many of us here were healthy when bit by stroke.
The tiredness seems to be unavoidable. Please google ‘A letter from your Brain’. It explains how it feels to recover from a brain injury.
Please believe that things will get better. I suggest you keep a diary. When you feel that nothing has improved you will look at it and see how far the 2 of you have come together.
Hello and welcome.
Much of what needs to be said has been in the two posts above.
You might find 40 things to know: what would you underline add or delete
Welcome - what we wish we’d heard at the start
There are lots of posts from people travelling the same path as you on here.
Your best friend perhaps will be the magnifying glass to search for some of them. Because some have developed over time you’ll get a picture of the journey (which none of us can guarantee you but) most of us know improves over time. You might like to watch these three or four minutes of video from my wife and I..
Most important thing to say to you is to look after yourself as others have already said but importantly include not feeling guilty about when you need to take time out, reaching out for support wherever you can get it eg family friends local support groups & charities, stroke association helpline
Lea (wife/ @BakersBunny ) is trying to get a carers zoom cafe re-established on every other Friday see Quick reminder for today's carers cafe and equally you and or husband are welcome at the Thursday afternoon zoom I run see Thursday online ‘cafe’ (also Carers)
Stroke often (always?) comes out to the blue and completely alienate everyone concerned from everything that you have known - spouses get overlooked by the medical profession
There are some important reasons to embrace physio in the first few weeks BUT that is when there is often the least spare capacity (spoons!) to deal with it.
might be wiser to give the priority to recovering from fatigue and sleeping - You probably won’t be told but to be optimum physiotherapy as recommended by national care guidelines is for minimum of 3 hours a day! Reality is often an hour a week of which only a third is actually survivor exercise or learning to repeat exercises and their own
Keep on asking, celebrating, having a cathartic scream or rant etc when you need it. The more you read here the more you will be able to formulate and recovery strategy.
@Stringyj welcome and sorry to hear about your husband. Everyone’s recovery will be different. Fatigue is terrible can’t believe how much it affected me. Hopefully things start to improve soon. Is there any way your care package could do afternoons or early evenings to help you out? It may be worth talking to them. Don’t try to go it alone you will burn yourself out. Just remember it’s a big change to your life as well as hubbys. Wish I could give more advice. Some great words from @Janetb @Mrs5K & @SimonInEdinburgh
In addition to all the above many GP surgeries offer support to carers. Speak to your GP about using this service.
Thank you to everyone for the reassurance and advice!
Today has seen my husband almost wake up from the sleeping trance of the last week. First thing, he seemed to be in pain all over his body when i tried to wash him. He fell aslep but only for 20 mins. He awoke a completely different person! No pain, a renewed energy which i haven’t seen anything like for over a week. He has been engaging , as much as he can ,and was awake for about 3 hours before having an afternoon rest.
It really is just about taking each day at a time and dealing with it.
Thanks once again, and its good to know that I am not alone.
Great to hear your husband is a little brighter today. Hopefully that will continue but like you say one day at a time.
That’s great that has to have been such a nice surprise for you & probably him
Post strike is like buying a £100 car that rattle & lurches and you have to guess if stuff is worrying or not
Yes you have to take everyday as it comes - so don’t be upset depressed or anything when there’s a down day .
Some folk find it useful to keep a diary so on the less good days they can look back and see that the good days previously and that there has been progress over the interim .
If you’re seeing it as one step forward one step backwards you need to look from a slightly different perspective so not over a week but for a month for example.
Oh Jan, I can’t help you or offer any wise words but I can hear how sad and worried you are. I’m sending you strength and love. I would say get advice on the deterioration of your husband from a professional.
Don’t try and do it all on your own!
Love Sam xx
As everyone else has said, welcome to the club that no-one wanted to be part of.
We’re a ragtag bunch who are all in different boats but sailing the same sea on similar journeys.
I’ve just started an online zoom carers cafe on alternate Fridays at 3pm. so if you fancy joining in, there one this week.
This is the link https://bit.ly/StrokeCarersCafe
Hope to see you
When you say someone is sleeping lots and you are told thats normal, dont always believe it. After a lot of digging and several blood tests, it turned out that the pain relief patch my husband was using was the culprit!
I had assumed the patch was there because of his stroke. It turned out that after a fall in hospital (dont ask about how that happened), an xray on his right shoulder which showed some impingement , that the pain patch was first used.
It turns out that the impingement was probably there before the fall and as such, no injury!!
The med was halved and an improvement happened within days. The med has now been removed.
Lesson learnt-dont assume anything is right without checking.
As lee can’t speak, it must have been so awful for him trying to do all that was askec during physio when you just want to sleep!
Thanks for sharing
Being without words must be terrible isolating
What non verbal Comms do you have between you? You said above “engaging” so I guess there’s some
I’m glad you found the patches work contributing - but us stroke is do need lots of sleep so had a guess it isn’t 100% the culprit
Lea @BakersBunny is is working to get the carers cafe running - it’s early days so has the sort of attendance I had at the beginning but I think @DonnaW & @TrevorNaidoo Have found talking to have offered a bit of a break and is a chance to share ideas
Lee is more accurate with head movements than the yes or no that he says. He is also very very good at speaking with his face.
Communication is not a big problem between us as we know each other so well but i know to look at him for an answer not just listen.
I totally agree about tiredness, and yes lee is still very tired but nowhere near how much he was when on that med. He tells me when he is tired instead of just switching off , even when standing up on the molift or during physio. That was scarey!!
All the other side effects that were brought on by the meds have gone too. It feels like this is the start to making things happen now.
It’s great to hear that things have improved now that the patches have been stopped. It does ho to show that we should question things & nit assume because that’s what we’ve been told.
Hopefully now he can start making a lot more progress.
Wishing you both all the best