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.
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.
Janet
@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
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.
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
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!
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.
