Yes, I am still a carer!

Share information, support and advice on all aspects of caring.
My learning and physically disabled son left our family home over 13 years ago and has lived very successfully in a supported living apartment alongside 9 other people with similar needs. Now in my mid 70’s I am still very much involved with the support of my son and I have a good relationship with his care provider who recognises me as a valuable member of my son’s support team. Although I no longer provide hands on day to day care I don’t really consider myself to be a ‘former’ carer and I’m sure I’m not the only person who would appreciate being able to talk to others in a similar position so that we can share experiences and information. There have been some dreadful news stories in recent times about abuse and neglect of people with learning disabilities which fills parents like myself with absolute horror at a time in our lives when we may becoming less able to deal with such emotional turmoil. I am fortunate that myself and some of the other parents/relatives of my son’s neighbors have become good friends and we support each other when the need arises but I wonder if Carers UK still care about people like me who are still actively involved with our family members care and support even though they no longer live in the family home.
Carolann
Hi Carol Ann.

I wonder if Carers UK still care about people like me who are still actively involved with our family members care and support even though they no longer live in the family home.


Interesting question ... ?

Suffice to say , fellow readers are interested in all aspects of a carer's life ... current or former ... and will assist whenever there is need.

I , myself , am a former carer ... now a decade in the past.

" Once a carer , always a carer ... the carer element never leaves the carer. "

As for Carers UK , little contact between their hierarchy and this forum ... has been so for close on a decade.

We only know what they are upto when they choose to let us know ... or post something on the main part of this site of which this forum is an annex ... of sorts.

A brief trawl through the threads under the various categories will reveal what's of interest to us.

Always room for something new ... and occasionly ... left field ( If that's the correct , modern day , expression for anything out of the ordinary ? ).

Others will no doubt drop into this thread with their thoughts and greetings.
I am in a similar, but not quite so fortunate position. My son has severe learning difficulties, brain damaged at birth, now 39. When the residential care home he was living in, he was moved into a supported living home with 2 other lads, which worked fairly well. Then that too closed, and he was moved to a tiny, cramped cottage which was awful. The ILF Fraud Officer became involved and insisted he moved yet again. Now he lives in a privately rented flat on his own, with carer support. 12 years of ongoing problems. I'm expecting a local government ombudsman's report any day now. My son also has legal aid.
Hi Carolann
There's no hard and fast definition of a carer as regards this forum, other then you are unpaid (the pitiful Carers Allowance doesn't count as pay). Just because someone's care burden changes that doesn't alter the fact they are still a carer, and you very much are.
I have a relative in a similar situation to you, and may well be there in a few years myself if I can ever get my son to independence.

Are you aware of Mark Newry who campaigns long and hard on behalf of people with LD? He's worth googling and following his blogs.
I wonder if Carers UK still care about people like me who are still actively involved with our family members care and support even though they no longer live in the family home.
Yes, Carolann - Carers UK DOES care

from our Community Guidelines
Welcome to Carers UK’s online community

What is the Carers UK Online Forum?

The Carers UK Forum is a supportive online community of current and former unpaid family carers who understand the ups and downs of caring. Our community is here for you to connect with other carers, support each other and signpost each other to relevant information, advice and support.
I'd still class myself in the 'carer' category even though my 93-year-old MIL-with-deep-dementia lives in a care home now.

The reason is I am still her 'care organiser' - ie, I pay her care home bills, I attend her NHS-CHC meetings, I liaise with the care home (and her family in the USA), and I am the person the care home phones about 'everything' concerning her.

I will also be the person organising her eventual funeral, and executing he will.

I think that makes me her 'carer' in that restricted sense.

I know, grimly, that if I went under a bus, the care home would have to deal across the Atlantic with her survving son, and that would be more complicated, especially in terms of UK bank accounts paying out fees, etc etc.

I can't really 'draw a line' under my MIL until, alas, her will is finally proved. Only THEN will I 'clock off' I guess.