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Are you a Disabled Carer? - Carers UK Forum

Are you a Disabled Carer?

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I'll be very surprised if I am the only person who is disabled and Caring for someone who is disabled and yet the situations we encounter are rarely if ever mentioned or discussed, so I have decided to start a topic that would address the challenges we encounter.
My partner has Cerebal Palsey and since about a decade ago, due to a change in her prescribed medication, this has resulted in her/us having to contend with MH-related issues. Suffice to say, life since then, has become even more 'interesting! :roll:
I was born with a very mild form of Spina-Bifida, which as I have got older, (I'm now 72) has led to having one leg amputated below the knee, whilst the bones in my other foot don't function properly either, so quite often I am using a manual wheelchair.

I am wondering how other people in the same boat as me, have found the level of support they get from Social Services etc, plus what other challenges they have encountered. It also seems to be an area of Caring that is very rarely discussed and I'm not aware of any sources of information and advice that specifically cater for people in our situation. I'm not expecting anyone to be as 'up-front' about their particular circumstances as I have been, but I would have thought their feedback could well be of great interest to others.

I have joint problems and my mobility was deteriorating, I was then waiting for an operation, I was in great pain and on crutches and using a wheelchair scooter for distances. I was still caring for S (active child, autism, related learning disability and challenging behaviour when anxious ...) No help provided. My friends moved in to care for him whilst I was having my op and when I first came home. They even wanted him to change my surgical stockings, help me wash my legs and feet etc (after my op I wasn't allowed to do certain movements for 12 weeks.) Luckily someone at the hospital saw more sense than the social worker and arranged for rehab care at home that was extended. It was the same when I fell and ruptured my ACL. No help.

I'm under instruction not to care for anyone ever again! Nevertheless, if I don't do things for my brain damaged son, no one else will. He lives on the edge of the New Forest, staff won't even take him for a walk in the Forest he loves!

Yes, I am disabled and have been since injuring my back whilst working 27 years ago.

However, now that I am older, it becomes more difficult due to my back problem flaring up!

Whilst my Husband was hospitalised for a quadruple by pass, I was still caring for our Son. My back locked solid and I could not walk due to severe pain; fortunately this eased very slowly with pain killers to help in the process but this made life very difficult having no help. I felt under so much pressure to get well but with back problems often it is a slow process but becoming stressed due to the situation that I was in didn't help.

A year after my Husband operation our Son who is severely mentally ill had a stroke and once again I was left with 2 men to care for.

Six weeks ago I awoke with the same problem and this time it is taking a lot longer to get right. I fell off the bed awkwardly in May and my problems have gone from bad to worse! Once again I feel stressed worrying about how long my back will affect my mobility!

My Dr did not send me for an x ray but I requested an appointment and discovered I had spondilosis. My Dr had conveniently ignored the notes from the Dr I had seen at the hospital walk in centre many weeks before.

These are very worrying times for Carers who are disabled on top of caring for family members. Its so difficult to get an appointment.

I am fortunate to have a very good chemist who have helped so much throughout this period.
Stone the crows! The situation I am in is pretty mild by comparison to those who have posted here before this, I just hope that you're all getting the support you obviously need. I've just managed to book a reassessment for the two of us by a Physiotherapist, but I've no idea when that will take place yet.