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New here, and not sure where to turn... - Carers UK Forum

New here, and not sure where to turn...

Tell us a bit about yourself here.
Hi there,
I care for my disabled mother who suffers from MS, and has done for 25+ years. I have cared for her my entire life, and her illness is only getting worse. I am 21, in a full-time position (due to financial issues I have to work), and wanting to start my own life.

My father, who is nearing 60, is struggling with lifting my mother on and off the toilet, in and out of bed, and on and off the sofa. I also struggle with her weight, due to the fact that she has no limb control/power at all now. I am wondering what help is available, I have turnt to the council, however she does not "qualify" for the highest rate of disability benefit, so she does not qualify for carers. We cannot afford private carers, but I am wanting to begin my adult life, and this entails moving out.

As hard as it is to admit, I don't trust my father looking after my mother on his own, he works from 3am-12pm so that he can be home with my mother so she a) isn't alone, and b) she is safe. This has taken a toll on him and often he is asleep for most of the day.

I'd like some advice, or just someone that won't judge me for wanting to leave home. Please help. Anything will be valued.
Hey, nobody here will judge you badly, far from it. :)
Go on girl, go make your life :) :) i am sure wotever the circumstances your parents would not want you to feel trapped.

I am bit concerned that you believe that help is not available from Social Services purely based on the benefit she receives. Or did I read that wrong??
Seems to me that your mother is due for a new up to date Assessment of her Needs and that your father (and you) could benefit from a Carers Assessment. More information can be found on the Main Website here. That is what I suggest should be your starting point.

MS is horrid. A pal of mine cared for someone with PP MS. All heartbreaking. I will call in another time if I can to see how things are going for you and your parents.
Welcome to thd forum. From what you have written about your mum, I'm confident that she should be entitled to much more help. Reapply for PIP (formerly DLA) asap, ring them and return the form promptly. Then ask the GP, Iideally in writing, to arrange an NHS Continuing Healthcare Checklist Assessment. Google this for more information. Go back to Social Services. They should look at what mum needs, and you need. I've never heard of an LA restricting eligibility based on benefit entitlements.
Hi Courtney and welcome
I, for one, don't blame you in the slightest for wanting to start your own life. Of course you do. No-one else here will either. I would think and hope that your parents don't want you to give up your chances either. Have they contacted the MS Society and asked for advice?
When you say Mum doesn't qualify for carers, do you mean she has had a 'needs assessment' from SS and your dad has had a carer's assessment? Then they turned both of them down? Good grief.
In which case I think an appeal should be instigated. Sorry can't tell you how but someone on here will know.
Have your parents been in touch with the Occupational Therapist? My Mum, granted MUCH older than yours, had ceiling hoists installed 'on loan' (no cost) to enable her to be moved from place to place. Before that she had a standing aid which helped her move from chair to commode etc. With both I was able to manage on my own when needed. Do get them to contact the OT either through GP or SS.
If Dad is still working, and you haven't mentioned their ages, I would suggest that he is still young enough and capable enough to sort out help and advice from all the groups, websites and LA aid out there. That's not to say you can't point him in the right direction. However seeing as Mum has had this condition for so long, what exactly have they been doing to help themselves? I do hope not using you as some sort of unpaid carer. My DIL has MS and she and my son are on top of all research, help, medication and whatever can possibly aid my DIL with her condition. She was diagnosed about 15 years ago and uses a mixture of diet, medication, pure common sense and upto date information to manage her condition. They actively tackle the problem, they don't wallow in it.
In far future years you may have problems of your own to deal with. (NOT wishing you any). This problem is your parents' and they have to deal with I, but NOT a the expense of your life. If they have grown to rely on you, then it was very wrong of them and it is not wrong or blameworthy for you to break loose now and live your life.
Parents have children to love and let go, not to provide free labour. As you will when you have children of your own.
Kindest regards
E.