Hi - I just joined and am glad to finally be here.
Last Nov my lovely husband (81) had a mild stroke, on top of long term heart disease. He’s not badly incapacitated but still needs some support.
I am 70 (how did that happen?!) with my own health challenges. Having had radiotherapy for cancer 26 years ago, I now have Pelvic Radiation Disease. The main feature is constant danger of bowel and urinary leakage and accidents. This makes it difficult to plan trips without knowing where the nearest bathroom is, while also having to have a change of clothes, just in case. It means I’m constantly on alert which is exhausting.
I have had my own training business for 30 years, love doing the work and connecting with clients. But I just don’t have the energy or time to do that right now. Which has a massive financial impact.
I’ve got a lot to learn about the support available for carers. I’ve got a small pension, don’t know what else I can - or even if I can - claim.
I’m hoping for some connection with like-minded people here, and look forward to meeting some folk at the zoom-coffees. Thanks for reading.
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Hi and welcome to the Forum. Glad you have found us.
Your situation resonates with me as my husband, Graham suffered a stroke at New Year 2021/22. IT meant we had to close our small business and I had to give up work to care for him. After a short improvement he went downhill and needed more and more care. At that time he was 66 and I was 62. I am now 65 and he would have been 70 last January.
I know exactly what you mean about continence problems. He often didn’t know and I had to be on the alert. At the worst I was up 3 times a night, changing him and the bed as even with pads he managed to flood them. I lost track of how many times he had hospital visits and I had a bag with replacement pads, and clothes as I could guarantee that he’d need changing in the 2 or 3 hours we were there. Trips out became a trial and then stopped happening! Even going to the village pub for a quick bite to eat became “rush rush - oops too late”.
Regrettably Graham also had prostate cancer, heart failure, a collapsed lung, and a host of other things going against him. He died suddenly in hospital as we were planning his discharge from multiple organ failure. His body just gave up. So now I am rebuilding a life for myself which is difficult from having been 24/7 caring and on edge/always alert to a stand-still.
Do you have any help at home? Does your GP have you registered as a Carer? Have you had a Carer’s Assessment recently?
Others will, undoubtedly, chip in with more advice and probably ask a few more questions to check so they can point you in the direction of help.
Feel free to ask anything you like as no one on here judges as we have all “been there” and we “just get it”! No such thing as a silly question - just questions to which you don’t yet have the answer.
We are all carers or former carers and there is a wealth of knowledge and information here for you.
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@TrudyDem Hello and welcome to the forum. I’m sorry to hear about your husbands stroke and your pelvic radiation disease.
I’m glad you found your way here, there’s always someone online - carer hours are like that - the general chat is on this discussion thread: https://forum.carersuk.org/t/roll-call-may-2026/128436?u=victoria_1806
The Carers UK helpline can offer more advice about Benefits or you could try the benefits calculator: Benefits calculator | Carers UK
helpine: Helpline and other support | Carers UK.
I helped my Mum care for my Dad who had heart failure, Atrial Fib, Rheumatoid arthritis, Bladder cancer and vascular dementia…and some organ damage. We were lucky that Mum and I could tag team. We had our bag of things for him trousers, pads etc. So I know exactly what you mean about toilet mapping and being prepared.
I look after Mum now, who has two cancers.
I left my full time job and have a small business mentoring clients in my former industry. FYI if you have some hours you could/want to work you may want to explore Flexa: About Us | Flexa Careers
It gives candidates the ability to search for flexible roles
I hope those links help
best wishes to you and your husband
Thankyou for the kind reply. Really appreciated.
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Many thanks for the detailed and kind reply – very much appreciated.
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Welcome to the forum. I’m glad you’ve found us.
Is your husband claiming Attendance Allowance?
How does his stroke affect him?
Do you have Power of Attorney for him?
Carers UK has a great helpline which can go through your finances confidentially, it’s quite likely that you qualify for Attendance Allowance too. I have a lot of experience of benefits as the result of helping family members, but the helpline staff are the real experts. They made me £50 a week better off many years ago, so I like to sing their praises.