My partner had a stroke 14 months ago and he is making good progress especially with his speech but still gets tired very quickly. I know this is normal during recovery but I was wondering if its something that will improve or if it will be a long term thing. He will sleep for a couple of hours after his first carer visit. This is when they wash and dress him and have to turn him in the bed etc. Then he will wake up around dinner for an hour or so then have more sleep in the afternoon. He can go from being wide awake to wanting to sleep within a few minutes and I can tell when he is tired as his speech is not as clear. He did really well yesterday when we had a review of his care with social services. They were asking him a lot of questions. He got tired after a while and they asked if he wanted to stop but he kept going. On a different note I have noticed a change in me since he has been home in that I used to be shy and quiet but when it comes looking after him I have become more confident in myself and if I notice any issues with his “proper” carers I will say something whereas before I would keep quiet thinking they know best as they are the experts. Maybe I’m just being protective and he always looks to me for reassurance so now I don’t care about upsetting people if something needs to be said! We have been really lucky with his carers. He gets on really well with most of them, we both do but I feel better knowing I can voice my concerns if needed. Rant over!!
@paula123 fatigue is something that can last a long time and it really is very individual. Some people get very little fatigue others suffer loads. It also doesn’t follow that someone who had a large stroke will get bad fatigue & vice versa. Having said that it often improves over time.
It is about learning to manage it and stopping before the fatigue catches up. The level of activity doable will vary for everyone.
I am over 3 years on & still suffer fatigue but it does take a higher level of activity before it hits now.
It sounds like his stroke has given your confidence a boost too. You have to speak up otherwise things won’t get sorted.
Well done, sounds like you’re doing a great job of looking after your partner.
It’s never a rant and that’s what we are all here for, to listen, help and support any way we can
Kev was put really put through the mill in his first year post stroke with infections, pneumonia and sepsis, that must have taken an awful lot out of him and his immune system certainly must be low as a result of it all. It could be, in part, why he is sleeping so much, aside from the stroke fatigue. Does he sleep through the night?
A good diet rich in fruits, vegetables, lean proteins, and whole grains provides essential nutrients will help build up his immune system. Maybe try a nutrient boost such as Ensure or Complan, one high in proteins. Or is he still being peg fed? I note he’s still in bed, does he have frequent opportunities to get out and sit in an armchair? Being stuck in bed and armchairs all day every day can tiring in itself from the sheer lack of physical as well as mental stimulation. Plus he has the added challenges on his brain with his cerebral palsy.
It all must be very mentally fatiguing and physically draining at times
How are his moods now, have they evened out any?
I used to be the same until we had kids, they soon bring you out of your shell
And just as importantly, how are you doing now. How are coping with him being home. More importantly, are you getting to knit or crochet any more teddies. You should post a few pics sometime, we’d all love to see them
Hi, thanks for replying. Yes he is still peg fed. He is starting to eat a bit better but needs to be small and soft. The dietician is keeping an eye on things and the more he is able to eat they will reduce or change the peg feed so he is not having too many calories. We try to get him out in his chair for at least an hour a day. It stresses him out a bit as he is still scared of the hoist so tries to avoid it but he does settle when he is in his chair. We are trying to build up the time gradually. On a good day he can manage about an hour and a half then he gets tired and I get him back to bed. I am doing well thankyou for asking. Yes I am still getting time to crochet teddies. His carers go mad for them so they have been paying me to make some for them! I will see if I can work out how to add some photos. Thanks again for replying. xx
I’m not sure if I have done it right but hopefully you can see photos of my latest creations! There is Eeyore, Stitch from lilo and stitch, and a fridge with food that I made for my niece’s little boy.
I just love this rant, If only all rants were like this
Well done Paula for adjusting to life under difficult circumstances. How wonderful it is that you have developed as a person in the process.
The recognition of the change which is very positive whereby you are now able to be assertive and express your thoughts, views and expectations with regards to standards of care. You are the one who knows best how to care for your husband - the other carers should take their lead from you. I believe Kev can speak for himself and so can communicate directly with the carers and ask for what he wants, but on occasions you may have been his advocate.
So pleased for you both. And so very happy that you have good carers who you get on with.
Oh they are adorable, my daughter would have loved them when she was little, it’s just the sort of thing she always played
They are wonderful, well done
Yes there is one carer that can be a bit rough when moving him. He’s always in a lot of pain and any movement needs to be slower and gentle but now he tells her if she is being too rough and she apologises. Apparantely other people she cares for have said the same but she’s getting better.
Hi - these things happen, and sometimes or maybe often they may not be aware. As an example, my Mum is petite and most of her carers are like “giants” compared to her. When they are dealing with her, she is almost like a baby or small child in their hands, yet they are often not gentle and so she ends up shouting as she can’t speak. Sadly the carers don’t try to understand or interpret what the shouting is about and carry on regardless.
We (family) have learned through experience to nip this in the bud and so in our capacity as advocates, we explain before [new] carers start Mum’s background and care needs and then if we hear sounds of distress we intervene. It works fine. We get the odd carer (there is a high turnover) who takes exception, but this is not a problem as we have developed an excellent relationship with the care agency management and owner and we have been given direct access to them in case of issues.
Now everyone knows where they stand and things run fairly smoothly.
Hi Paula, from what I have gathered we are all individual regarding our recovery.
I am now six and a half years post stroke, fatigue has been a lasting issue for me. I think you just need to find ways to best manage it. A nap during the day and an early night works for me but we are all different.
I also need to plan my day and now know my limitations.
Hope all goes well.
Hi Paula, it’s 3 years and a few months since my stroke. I still need 12 hours sleep every day but that’s down from 14. My wife is also very protective of me and gets irritated with anybody who places me in any sort of danger, so people out and about who don’t look where they’re going and look like they might knock me over. She’s a star, I married a good’n.
Hi. Thankyou for replying and to everyone else who has. It’s good for us both to know. I started worrying when he wanted to sleep more thinking he was getting poorly again! . Hearing from everyone I now see that 14 months is early in terms of stroke recovery. By the way I completely understand how your wife feels!
Bless you @paula123
What a lucky man he is to have you!
You never know how your relationship might change with one partner poorly
Well done to you for stepping up, absolutely brilliant to hear! You should be proud of yourself!
My husband has stepped up to support me it’s wonderful and I am so lucky.
Fatigue is so common in various severity. I have it bad but not for sleep, I have absolutely no energy it’s makes everything difficult. I am 2 years since stroke , it has improved a little but still ruins my life. Whereas my other stroke effects are now liveable.
Good luck keep going it’s a very long road
Thankyou for your kind words! It means a lot. Its good to hear from everyone who knows what we are going through. Thinking back to the nightmare when he had the stroke I just remember hearing that he would make the most progress in the first six months but not to expect much after that! Thats obviously not the case. Although he has the added complication of cerebral palsy meaning its likely he will never be able to walk again, he was only just managing before the stroke, he is making good progress in other ways, particularly his speech and swallowing which was affected the most. He also kept going into hospital with infections, sepsis etc but has been ok since december so things are going well and its good to know the tiredness and fatigue is normal and can last a long time so we know what to expect. Best wishes to you and your husband xx
. Hearing from everyone I now see that 14 months is early in terms of stroke recovery. By the way I completely understand how your wife feels! 
