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Hi new to caring - Carers UK Forum

Hi new to caring

Tell us a bit about yourself here.
I am 58 and caring for my husband who has MSA (multiple system atrophy). I am new to caring as I never raised any children, and for years my husband did a lot of the housework and cooking as he was early retired and I was working full-time. He is now unable to do anything for himself, and while I consider us lucky to live in a small, modern house that is easy to get a wheelchair and hoist around in, it is still a painful slog, terrifying and horribly sad. I am watching as every development his mum saw when he was a child becomes "undone": his last step, his last written word, eventually his last spoken word. My stepdaughter comes up when she can, but she's got two young children and works too. I have a substitute carer for when I go into the office (I teach at uni so only go in during term and work from home the rest of the time), but I find having someone else in the house while I am there intrusive.so most of the time it's just me and my husband.
It's been a steep learning curve: incontinence pads, NRS supplies, pressure sores, physio, OTs, DNs, etc. But the NHS has been great.
Still, it is desperately sad, but I am thankful that he has not got dementia, and that I am able to care for him at home where he can be surrounded by all his things, me, friends, the dog and cat.
Dear Leslie - how desperately sad for you both.

I'm glad you found the forum, there are a 'mixed bunch' of us, with a variety of carees (mine is my 92 y.o MIL with dementia, now in a care home), but also quite a few who are looking after their wives or husbands.

I hope you find some 'convivilaity' here, and some emotional support. The one thing we all know is that whoever our carees are, it's sad, sad, sad that they need care at all.

Kindest wishes, Jenny
Hi Leslie and welcome
I hope you find lots of useful info on here. My pet project is to encourage all carers to also care for themselves, on the basis that a burned out carer is no use to anyone. So that means self worth, socialising, some time to oneself, some exercise and fresh air, healthy-ish eating, counselling, mediation and support.
Sounds a long list (some can be doubled or even trebled up) but it seems you've got some of them covered already.
Just remember that caring situations can change and putting plans in place early or in case of emergency, can save a lot of stress.
Keep posting