Venting and/or worries about additional illness of a loved one post-stroke

Hello again. I suppose I just want to vent to like-minded people or those in a similar situation to me. Pre-stroke my mum has always been a low-level sickly person. Despite some fairly big medical events in her past, day-to-day she was always calling the doctor for small stuff and seemed to always be sent for blood tests and whatnot. So I am trying to bear that in mind… that was her base level and now I have post-stroke things on top of it to deal with.

Please leave a comment in solidarity if you are caring for someone and you’re just an ordinary, non-medically trained person doing their best and worrying frequently that you’re going to miss something or do something wrong?! We still don’t have carers coming (and no idea when they will) and I know carers aren’t nurses, but they probably have more of an idea than I do!

What happened this morning —>
I woke up late this morning to find mum dressed and doing some light housework (emptying dishwasher etc). This is all fine as she is mobile and can do those things. But shortly after she seemed to become woozy and looked off-colour. She expressed that her arms hurt, and I (trying to stay calm) asked her what kind of pain and found out that it was aching, as she did ironing yesterday and hoovered downstairs. Mum has always been very houseproud and I think this is another instance - we have already had one - of her pushing too hard and feeling poorly because of it. I got her to sit down (she won’t go back to bed) and made her a light breakfast. Her colour seems better after eating and now she is taking a nap.

It’s all just SO stressful. The ‘normal’ caring I can deal with because mum’s issues are more with speaking than anything else, and we communicate pretty well. But when she isn’t well I feel very panicked because I am not medically trained and it’s down to me to call the shots on what happens using my best judgement. It’s terrifying.

I did just go through a question and answer thingy on 111 website and that suggested everything is okay. I’m just going to keep a close eye on her, obviously. Thanks for reading if you got this far.

Hi @relaxcupcake unfortunately I cannot give any support from a ‘caring for someone perspective’ as I’m the one who had a stroke, however I can relate a little to your mum’s perspective.

I now realise that it’s a balancing act, a tightrope that I have to navigate each day between doing what I want to do, the same as pre-stroke, and what my brain is now capable of doing before it gets tired and says ‘that’s it’ and the fatigue hits.

Try not to worry too much, easier said than done I know, my husband hovered around me all the time, still does to an extent, saying sit down, relax, if he had his way he’d wrap me up in cotton wool and I’d sit on the sofa all day doing nothing, which is not good as the body is designed to move.

What I’m trying to say is your mum needs to do tasks in little spurts, then have a rest, doing too much in one go only leads to fatigue that will wipe her out

You too need to let your mum try but encourage her to take rest breaks and her tolerance levels will, hopefully, increase with time.

Best wishes

Hi. I am not a carer either. Like Mahoney, I only know what you it’s like from a survivor’s angle. Although you say ‘light housework’ survivors tend to think they can achieve more than their brain allows. If I do more than three or four things in a day, I am over my limit. The result of that is a need to sit and rest or to have a nap. Aches and pains after overdoing things is very common. If I do too much walking my weak side hip aches like hell. Just keep a watchful eye on her and don’t be over anxious.

Thank you both for responding and please know that I meant no disrespect or exclusion in asking for carer comments. The perspective of survivors is obviously the most valuable and respected in this space. I thank you both for commenting and adding your opinions.

Little bursts of activity is a good approach and one I will suggest to mum! Even pre-stroke I feel like she was always trying to do too much (I recall her saying not long before the stroke she didn’t like feeling her age and feeling like she couldn’t physically do what her mind wanted to achieve in a day). Soooo I feel like I need to speak with her about a reviewed approach to how she tackles things.

Thank you so much once again for commenting!

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Hi @relaxcupcake, I and my Sister are living with and caring for my 82 year old Mum who had a big stroke back in April 2020. I completely understand and relate to all that you have said as I experience the same sort of worries and feelings.

In fact I’ve found it quite comforting to know I’m not the only one who experiences this - so thanks for posting and being honest and open about your situation.

All we can do is our best and seek advice when needed. I’m learning to try and differentiate between what is a ‘real’ issue and what is being caused by anxiety and fatigue, but as you say - I’m not medically trained and worry constantly that I’ll make a wrong decision, so you are not alone !

Sending you my best and wishing you and your Mum well
Karen

Thank you @Craftchick :hearts:
I’m much the same way; mum is very anxious and - I say this with love - a bit of a hypochondriac, so it’s navigating that on top of everything else!

Today we actually ended up going back to the dentist again because mum has a swollen right side of her face. She didn’t want to go and made that quite clear, eye rolls and grumpiness and everything, but the doc put her on antibiotics and told me it was good we went.

The ‘child becoming the parent’ aspect of all this just sucks, haha. I don’t feel equipped to be making these decisions and dealing with all this responsibility, but here I am and I have to do it. GAH!

Thank you again Karen for commenting and making me feel less alone. It really does help. I wish you well also, and all the strength you need to get through this :slight_smile:

Hi @relaxcupcake, hope your Mum is feeling a bit better now and the antibiotics are helping.

It can certainly feel very lonely at times…and exhausting as you say. I haven’t had a full night’s sleep since she came home in April 2020.

The pandemic has had such an impact on everything as well - there is no knowing how much of Mum’s recovery has been affected by it. A lot of her anxiety is related to, and dictated by it. Just when we thought we had turned a corner and she was willing to try and get out a little more…Omicron appeared and we are now more or less back to square one. I’m hoping that when the weather improves and the virus numbers go down (if they ever do !!), we can pick up where we left off. Her mobility isn’t great but just getting in the car and going out for a drive makes a difference.

Every day is different and yet the same - if that makes sense. We keep on keeping on - trying to remember and remind ourselves of how far we have all come since the stroke…and hope for better times ahead. Stay strong and take care.

Karen

Hello, I’m new to this forum, and your post resonated with me so much. My husband had a stroke on 1st December which has seriously impacted his speech, writing and cognitive function. He was discharged from hospital after 8 days as he is fully mobile and able to carry out routine tasks, like shaving, showering etc. I find the responsibility for his health overwhelming at times and find I’m constantly on high alert, it’s exhausting. We have both speech & language and occupational therapists visiting who both encourage him to rest more, but he’s so reluctant to do so and then gets annoyed that he is not improving (which he is, but slowly)

Elizabeth

Hi Elizabeth @lizstorey94, welcome to the community. Stroke impacts both the person and their loved ones, albeit in a different way.

I can imagine how you feel, as my husband is constantly telling me to rest and take it easy. It’s hard to do though as I want to do what I used to do, feel how I used to feel and be the person I was pre-stroke, unfortunately, I’m sad to say, I’m not the same now, I have to strike a balance between effort and rest or I pay the price eg fatigue.

Hopefully your husband will go from strength to strength and improve as the weeks go by.

Don’t forget to look after yourself too. Wishing you and your husband all the best, take care.

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