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Struggling - Carers UK Forum


Share information, support and advice on all aspects of caring.
Hi I am new to this forum, and getting to a point of feeling so alone. My husband had his first stroke 2yrs ago and made good recovery apart from a loss of peripheral vision (meaning he could no longer drive) he was only 64 and previously v fit and healthy. He then had a subsequent large stroke last October when he was throbolysed. My problem is I have a man who is continually unwell, he has had lesions removed recently probable skin cancer, diagnosed with rheumatic arthritis, and had his appendix out all in the last year as well as his stroke. He has continual brain splitting headaches, dizziness sorofound it affects his balance, and chronic fatigue. The medics can give us no answers other than to say "this shouldn't be happening" apparently all his PBS and test suggest he should be fitter than a 40yr old. We have had no follow up from stroke clinics, I just feel so lost alone. It feels as if I am watching my husband fade away in front of me. He can't leave the house now other than to go to hospital appointments. He spends half his day in bed, and the other half on the sofa. . . . . . . .help xx
Hi Jenni,
Such huge changes in a short time would make anyone struggle. Don't try to be Superwoman, you should be getting some help. Have Social Services drawn up a care plan for your husband, and done a Carers Assessment for you?
No nothing from social services. Trouble is my husband struggles with the changes and doesn't want people to pity him. If he would accept a wheelchair we could get out more but he won't, he also seems to play down a lot of his problems when he sees the medics. Thanks so much for quick reply. Nice to find somewhere I can talk freely x
Regardless of what your husband wants, you are still entitled to a Carers Assessment from Social Services. My mum also refused to use a wheelchair, ended up being housebound for 30 years. I was disabled for five years after a car accident, my mobility scooter was wonderful. Happily after two knee replacements, I can walk well again. Is it fair that he should also restrict your life by steadfastly refusing to use a chair/scooter? Has he ever tried one? Do you have a Blue Badge, or has he refused that too? I have been a carer for over 30 years, at one stage 5 members of my family were entitled to DLA care at the same time! Counselling has been very helpful to me, it won't change your husband's health problems, but it might help you deal with it.
He does have a blue badge. Husband is an absolute sweetheart and I understand some of his refusal to accept disability. The most frustrating thing is we have no answers, which means we have no answers for the future. V difficult to plan our life. I was working as a community psychiatric nurse up until January when I was forced to give up work, so have a good understanding of the system. I just wish health services would be more wholistic. All these problems in one body must be connected but each one is treated individually. I am struggling with loss of my career, loss of my healthy fit husband, and loss of friends and social life. He is struggling with constant pain, fatigue and loss of independence x
In view of your background, I suspect that everyone thinks that you are "capable" and don' t realise that you could do with some support (there are a number of us, me included, that this has happened to). When my son was brain dsmaged at birth, I realised that many of my hopeas and dreams had gone. Since then, I have studied for an honours degree, with a hyperactive son with learning difficulties living at home, and done all sorts of other things which have made life interesting. In between there was a period of depression, what would have helped hugely would have been talking over my feelings with someopne outside the family. Do consider counselling.
Hi Jenni, and welcome,

I think struggling with the loss and the whole way your life changes so drastically so quickly is really hard to cope with. I also find I feel very passive now - I can't do an awful lot for myself as everything revolves around my son. Of course that's the way it should be, he's disabled and I'm not, but it does mean that everything in my life is restricted in the same way that his is. I expect it feels a bit like that for you, plus adjusting to such a big change in your husband, it must be very tough.

I can't offer any pearls of wisdom other than keep posting and keep talking, other people understand and can at the very least be supportive and let you blow off a bit of steam if you need to.
Thank you mum who cares xxx
And thanks bowling bun. Sorry i didn't see your last post for some reason until now. I am struggling with depression. I have had a couple of attempts at counselling but find it difficult as I can "see" the next question coming due to my mental health background. My GP has been brilliant and supportive whilst I was trying to work at same time as caring, but now I have given up work I don't have a "reason" to keep going to her ie for sick notes etc
Well done on your studies, it is something I am considering doing is some more studying, but at the moment feel so overwhelmed with everything including financial crap I'm not sure I would be up to it xx
Are finances a big issue for you? The Carers Uk helpline is good at helping with money matters. They made me £50 better off!