Hi, just thought I’d share this. Sole carer for my husband. I’m finding I get overwhelmed every couple of weeks and the only thing that seems to ease it is a good cry. At first I wouldn’t allow myself to give in to it but now if I need to I wait until I’m in the shower or I go into the garden or when I’m walking my neighbours dog. It seems to be a reset for me. I don’t like to let my husband see me upset. Any other carers out there feel like this?
I’ve been reading your struggles and you sound as if your doing good and sensible things
The question of how carers cope is a good one to share
My wife runs zoom call every other Wednesday normally 1030 for carers to share a sympathetic ear and a coffee and chat
Its on https://bit.ly/StrokeCarersCafe
Next is 1st March
@Winnie39 you might like too join too?
Stroke survivors also experience that.
I lost the old me, your husband lost the old him,
you lost the old him, too.
It is a grieving process, perfectly natural I believe.
The tears are, strangely, sometimes enjoyable and there can be a sense of relief.
Keep on keepin’ on
Incidentally I allowed my carer, my wife to see that emotion.
I believe that in sharing we are that bit closer.
Hi Simon. Thanks for taking the time to reply. Mornings are usually pretty busy for us but it’s good to know about this.
Hi, new to this as my husband had his stroke 5 weeks ago.
Thought I was being selfish when the tears came, so glad I joined this site.
It doesn’t make you feel so alone.
Hi @Food a good cry can do us all good at times. Hopefully you’ll find lots of support and info here.
Wishing you and your husband all the best, take care
Welcome to the StrokeWarriors club (ie those of us who now wobble & our families
I know the ‘gang’ here will give great support. I hope your journey is a good one. We wouldn’t volunteer to be here but now we are there are some positives that help if embraced like appreciation for life
I just sometimes feel guilty and if I am honest, selfish when it isn’t me that has had the trauma of a stroke.
I really do appreciate your support.
Shazza58, I know exactly what you mean. My wife had a severe stroke in January last year and came home on 1 April. I have been her 24-hour carer ever since (supported by four care visits per day for pad changing, personal hygiene stuff) and will remain so. It’s relentless, and although I try to stay positive and cheerful it does get to me every so often. It’s a combination of the grief and loss, the physical isolation, that I just can’t do any of the things I used to like to do myself, and what appears to be a blank future. But at least these online forums do remind us that we are not alone. Take care.
Have you investigated carers respite?
Thanks for your reply, I know things could be much worse and I should be thankful fie the things my husband can do for himself. People tell me to make time for myself but what they don’t always understand is that at the moment I’m not comfortable leaving him on his own for too long and he doesn’t think he needs “baby sitting” so won’t accept carers. Regards
Not ready to yet but maybe in the future. Regards
My wife is blind, i had a stroke on the 30th of December 2021 and I’m stll depressed, fatigued , disorientated and right side weak but beteen us both we get by rather well i believe. I have had to give up taking my dog walking, got a dog walker, i have a problem with falling over and Linda my better half worries when i am out of sight as i worry about her tripping. Luckily my eyes still work so I’m able to sort out our meals, tablet’s and letters and our kids do my thinking for us, i SUFFER with brain fog, it comers on at the most inconvenient time. The worst was not being allowed to drive it really ties you down
Enough of the moans, we take life as it comes always with love and a bit of humour, we have been married over 50yrs and she’s my best friend. We also have good friends who take us out for lunch and coffee. We hopefully will continue to live our lives as fully as possible.
As Monty Python said" Aways look on the bright side of Life" what’s the point of making yourself upset you can only do what you can do what you and strive to push the barriers a bit further bit by little bit if you can’t dont worry , it’ll wait and try tomorrow . AlwAys try and smile.
Hi Shazza, my mam had a stroke in January and while shes been lucky in that she not been left with any physical weakness she is often very confused and can get quite angry and frustrated. Shes 91 but was very fit and active prior to the stroke. I do the majority of the caring and yes, its very hard and i cry alot, my husband is wonderful. Like your husband my mam hates the idea of carers so at the moment we are just having to cope although at 91 ultimately know itcwill have to come at some point, especially as i work too.
Yes i know what you mean im writing this now crying i feel so angry with him and feel so alone.we reached the 1 year mark this month and he still is having trouble walking and using his left arm hand im fed up at telling him to exercise i get to the point where i feel i can’t do this and then feel a horrible person .if he’d be abit more motivated we can go for days and don’t speak only when he needs help im at my wits end
Most of the family seem to have disappeared my daughter doesn’t understand and just gets angry with me as for my husbands family don’t hear from them my husband is a person who doesn’t speak about how he’s feeling and worries and analysis every thing thats probably what caused his stroke high blood pressure im glad i can come on here and rant you will probably here from me soon
There are support groups around for carers including giving respite breaks
You might find one amongst this list
Do you get out of the house, away from your husband, how often and for how long.
How do you get your groceries?
Hi my husband had a brain bleed 3 years ago. He has cognitve impairment and aphasia. He also has cerebral amyloid angiopathy which apparently caused his stroke as well as high blood pressure. He regained his upper body well but still has issues with his right leg and walking. He is very motivated to improve on his recovery but is not very good at self initiating his exercises or activities. I find i have to organise all of this for him, he can longer drive and everything he does including walking takes such a long time. He suffers from fatigue but tries to fight through it. He is generally happy and positive which makes my caring role easier.
I can now leave him alone for up to 3 hours at a time depending on how he is feeling. I walk my dog for an hour every morning which sets me up for the day. When he first came home from hospital i didn’t think i would ever be able to leave him . I had to allow him to manage his own risks to a certain degree which i found really hard, still do some days. We have found our own way through this and you will too. Good luck to both of you.
Coming up to the 4 week mark of my partner’s stroke so it’s still early days. A clot‘s left him paralysed left hand side, getting some movement back in the leg but arm and hand steadfastly not responding yet. Speech and swallowing has improved. He can now get from his hospital bed to wheelchair with just me helping. We both consider he’s come off relatively lightly but know our lives have changed.
I’m now getting to that point where holding my breath and ploughing through it all…well the cracks are starting to show. I’m so tired but can’t sleep. Taking a couple of the old type of antihistamine, the 4 a day ones, helps me get to sleep. I asked my doc about it and he said it wasn’t a concern for me to be taking them this way, your situation may be different. That exhaustion and fog are similar to that I had when suffering from bouts of moderate into severe depression and I recognise it as an unwelcome visitor but at least all the therapy and sessions I had to undergo for years has prepared me in a weird sort of way…
He has some very low and emotional periods which know will happen. And I try my best to lighten him …and I really try to hold my s*it together when in front of him. But after the physio took me on one side and told me she wanted a ‘home visit’ to assess the house in prep for return, I was fine until I sat with him and in an instant, that tsunami of emotion just overwhelmed me and the tears flowed. I’d promised myself I wouldn’t to do that in front of him. I think it was just reaction to something positive that was going to happen out of a mess of uncertainty.
So far I’ve cleaned the house, scrubbed carpets, walls and ceilings to an inch of their lives. I’ve been for walks and watched the sun rise and shared the moments with him via WhatsApp. I lovely friend who’s just lost her husband told me she tries to see or do something beautiful every day…watching the moon with the dog, observing and listening to a bumblebee in the garden flitting around the flowers. It’s something I’ve tried to take on board and I remember now it’s something that was encouraged in the depression therapy I had a few years back. Have a small note book and pencil. Try and note down something really good each day that you’ve experienced . You can open the book when you’re low and realise good things are still happening to you.
On the way back from the hospital this afternoon, I had my phone connected to the car system and was playing some playlists from Spotify (the free version…). I’ve always been an introvert but singing my head off whilst driving trough town …well I think it helped. Also allowing yourself to tell friends and family that you are fine but you don’t have the energy to talk with them at the moment can we do it tomorrow is OK too…
Once he’s home I’m going to have to include a selfish couple of hours per day just for myself. I think it’s really important to get tired in a healthy way, … a routine of some good physical exercise. A bike ride, swimming every other day, gardening…sofa yoga! I found it really helped with depression and it has to go somewhere to coping with this.
Not sure what the future holds but I’m determined to be positive about it.