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New to group help with ppms - Carers UK Forum

New to group help with ppms

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Hi my husband had ppms I am feeling that although he has the illness and receives support what about us the carers who have a very hard job to keep all the plates spinning. I know it is very hard having an illness but caring is so hard when no one helps or understands how you are feeling. I know this must sound very selfish but I was just wondering if anyone else feels the same. Look forward to hearing your views. Maureen
Hi Maureen, I've been a carer for 38 years. It's definitely not selfish needing help, it's absolutely vital. How much can your husband do for himself?
It's also essential to get 'time off' both 'daily' and also for at least 'mini-breaks away' from caring responsibilities.

In the end, however sympathetic others may be, only other carers really understand the strain and stress. Do you find much 'carer camaraderie' on the various MS sites and forums? I do hope so. Plus maybe even practical suggestions/help?

That said, although there are definitely some forum members here whose carees are MS-affected (and slighter, but similarly 'debilitating' conditions like ME/FM etc), because we all wear, or have worn, the carers T-shirt in one respect or another, we do understand what it to be constantly 'on guard' for another human being - it's the 'end of carefree life' isn't it?

Do you and your husband get any 'nice times together' where his condition can be 'minimised' at least mentally, if nothing else?
Morning thanks for your replies it’s nice to know someone else out there has gone through what I am feeling unfortunately we don’t have many nice times now as I feel all I am now is a carer . He can dress himself and shower with some help but not much else I sometimes feel he could do more and that just frustrates me I do go out with friends but feel he resents me for that. It’s so good just to put down in words what I am feeling. Thanks for being there ;) m
I found tiredness to be my biggest enemy. For years I was expected to carry on regardless, I developed a very serious illness as a result. My husband died suddenly of a massive heart attack in his sleep, soon after his father. Caring for four elderly parents, all living nearby, all ill, all wanting us; caring for a son with severe learning difficulties; as well as our own business and a national club was just too much in the end.
Now (after major surgery) I have finally learned to be kind to myself. When I'm tired it's best to leave the housework and rest instead. I'm streamlining everything as much as possible, getting rid of furniture and other household things I don't use any more, I've had the garden flowerbeds flattened and grassed over, and had a patio built so I can enjoy the garden without always looking at work that needs to be done. I use a dishwasher and a tumble dryer. Every job avoided altogether, or minimised, or done by someone or something else, is time and effort saved.
It's so important to keep up friendships, that has to be "non negotiable". Does he ever go out now? Can he use a mobility scooter? Attend any clubs?
Ultimately, we are all responsible for our own happiness.
I've had seven operations, one life saving; I've been in a head on smash that nearly killed me, left me unable to walk for five years, until I had my knee replacements. I'm STILL HERE, still able to enjoy nature, watch the clouds scudding across the sky, feel the wind on my face, watch the squirrels etc. etc. There is so much to enjoy even if you can't get out there and do the things you used to.
Are you OK financially? Claiming Attendance Allowance (over 65) or PIP (under 65)? Carers Allowance? If in doubt, get in touch with our CUK helpline, email is best.
Hi thanks for all your advice this is the first time I have reached out to other carers because I do believe no one knows what we have to do except other carers and I do believe that it is the end of a carefree life sorry for being so negative but I must just be having a bad week great to hear from you all x😃
Are you getting any help at all at the moment?
Hi no help just now as husband under 65
You are still entitled to help. As he is JUST under 65, I hope he is receiving the mobility component of DLA/PIP? If not, be sure to apply asap, because if you qualify below 65, it continues until death, once over 65 on the date of applying, you will NEVER be eligible.

Have you asked Social Services for a Needs Assessment for your husband, and a Carers Assessment for yourself? Sometimes services are available that are not advertised very well.

Our local Carers group have coach trips, pamper sessions, a Christmas lunch etc., both carer and caree can go to these things, and not only does it reduce isolation you can learn lots.