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Hello - Carers UK Forum


Tell us a bit about yourself here.
I’m a carer for my husband who is bed bound with secondary progressive multiple sclerosis, in partial remission with hairy cell leukaemia and has a benign tumour on the pituitary gland which has resulted in diabetes Insipidous. He needs 24 hour care as cannot do anything for himself. He is leg fed, superpubic catheter and has a stoma....oh and suffers with pressure sores. He currently has a grade 4 on his lower spine. Life is not easy. I get 16 hours a week respite by way of direct payments...yippee....lucky me! I attend to all his needs and personal care. I have good days and very dark bad days! I haven’t had a break for 5 years other than a weeken last year, which I had to fight for with social services! Anyway...hello everyone 😊
That sounds extremely grim for both of you - I'm sorry. I haven't anything 'helpful' to contribute, but hopefully others here may be able to point you in a direction that at the least can get a little more 'time off' for you.

It seems despearately 'unfair' that on top of MS, your husband has cancer as well. But then, cancer is no 'respecter of persons'. My very fit middle aged husband was diagnosed terminal 'out of the blue' one summer some years ago, and did not last out the year.

Life is very hard sometimes.
Hi Jackie
Nice to meet another MS family.
My mum has secondary progressive too, supra pubic catheter as well.
I think we will end up down the stoma route sometime in the future, as her bowels cause her (and me!) grief 24 hrs a day. But not being discussed at the moment.
She has incredibly limited mobility and cannot do anything for herself ( apart from lift her cup to drink & lift her fork if food is all cut up small)
I live with her at the moment, but am moving out soon. My mums mood swings are the most difficult to deal with, and she can be very verbally violent towards me.

I agree with Jenny, you definitely need some more time off for you. Are you in contact with your local carers support group?