I’ve posted quite a lot on the forum since February when my 77 year old mum had a massive stroke. The word “rollercoaster” doesn’t go anywhere near describing the pain, worry and stress we’ve been going through almost constantly since then.
I’m having to manage her care for her complex needs in an NHS which is reluctant to address her issues thoroughly. It’s utterly draining.
She is currently in rehab following a short spell in hospital with aspiration pneumonia; but has just been diagnosed with yet another UTI.
I’m constantly advocating for her and as a result, every few weeks I get burnt out, depressed and anxious. It’s a huge battle to ensure she gets the care she needs.
We’ve no idea if she’ll get through each infection. Each set back is so frightening. The emotional toll this is taking is huge.
I’m at a loss as to what to do. I’m single so have no emotional support easily available, and the local Stroke Association and local NHS mental health provision is non-existent for carers.
I call the Association helpline when i need to, and when i can afford to, i pay for private counselling.
I do have siblings but I’ve given up asking them for financial support - they can’t help in other ways as they don’t live nearby - but it’s like pulling teeth and adds to my stress levels.
I also work full time (I’m self-employed).
I know I need help - everything feels so uncertain. It’s not getting easier.
Any advice on coping with this high level of stress for months on end wouid be welcome.
I’ve searched the forum but can’t find a relevant post.
And a few others that are just Google plus a little critical reading
I hope some of these provide you with a helpline where people have ideas about respite breaks and support agencies and counselling etc
I would not dismiss people like Alzheimer’s just because they’re directed at a primary cause they’re still got experience of caring
@EMG72 sorry to hear you’re str7ggling. It really is difficult to take all that on yourself. I know your sisters live away but maybe you can ask them to schedule some time for them to visit for a few days to give you some much needed time for yourself. You’ll probably need to be firm but has to be worth a try. I’d rell them you’re about to break & if they don’t help a little your mum will have noone. Sldo maybe they can help with some things that perhaps can be done via phone or email.
Also consider taking some time out from visiting your mum. I know that’s a hard thing to do but she’s in a relatively safe environment & it will do you good to have some time out so you can go back stronger.
Simon has provided some good links but also speak to your GP. They should offer support to carers.
Hope your mum’s infection clears soon & that you manage to find some time to have a break.
Hello, sorry for the delayed reply. My mum was in rehab (but they were too short staffed to give her any!) and is now back home.
My siblings are all men and won’t visit for any length of time. I’ve given up with them as it’s often much more stressful dealing with them on top of everything else. I have no option whatsoever.
As another carer recently told me: they don’t want to help otherwise they’d find a way. It’s a common issue among families. And it’s devastating behaviour.
@EMG72 it’s really difficult when people who should be helping don’t. But like you say it’s best to try & find ways without them so you’re not adding to your stress.
Hopefully things are a little easier with her being home. But i guess in some ways more difficult too.
The advice about having some time for yourself is important though. Even if it is just an hour for coffee or something. See if a neighbour will sit with her. Our local council offer a volunteer service where people call in to help others in need. Maybe your council do something similar. It would give you a break for a couple of hours perhaps.
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