Carers Chill4us | Carers message board

It wasn't until my Mum died last July, and I was no longer her carer, that I found out what it feels like to be excluded from things that had been available to me until then. Mum had vascular dementia and was losing her sight and needed my full time attention.
We, unpaid carers, are recognised as a valuable asset to society and GPs are told they must look after us. It wouldn't do for us to get ill, they would have to make other arrangements for the person we were caring for. We are offered chats with other carers over tea and biscuits just so we can know we are not alone.
The icing on the cake is the 'respite' break offered. Who in their right mind decided that to take someone with dementia away from their home and family, to go to a strange place for a few days and then to be uprooted again to go home, would be both good for them and a well deserved relaxing break for the carer?
I know there are many really good carer groups out there and lots of people doing a very worthwhile job looking after carers and I don't mean to sound negative.
However, what worries me is that once the caring role stops we are left to get on with it. This can't be good. We have to deal with a bereavement that really hits home. I woke up the day after Mum died and didn't know what to do with my day. It was as if I had been programmed to respond to the timetable of her day.
When I realised that I could do anything I wanted to do, I couldn't remember what I'd had planned before being a full time carer. Then, when I planned to do things, I felt guilty that I was being able to do what I wanted because Mum was dead.
Going back to work wasn't an option as I was retirement age and hadn't worked for several years so would be completely out of touch. Hearing about the current job interview techniques would have frightened me off anyway. Plus the fact that to go back to work would mean a whole new wardrobe, eating with Mum had added a few pounds to my once size 14 figure.
What's the point of this epistle I hear you ask. Well I'll tell you.
I am going to start an organisation for ex-carers and already have the right level of support for funding but need to know what other ex-carers think such an organisation should offer and whether or not it's a good idea.
Too many groups are set up by well meaning people who think they know what is needed. I need to know what is wanted.
It should be like chill4us. Carer led  and user friendly.
SO....get those fingers working and post ideas, tell me what would have helped you, let me know what isn't needed.
Thanks
 

 than999
This is your first post, please let our chill members get to know you more before they post any personal details.
You quote "it should be like chill4us and user friendly"
But we don't know you. How do you know us if you have only just joined. This is a private site.
With all Best wishes.

I suggested that Fairfew post in Chill after speaking on the phone, because I feel very strongly that there isnt much for carers when their caring role is ended.
As far as I understand, Fairfew is wanting to start an actual group for past carers to join in Reading.  It is not going to be on the internet,
She was thinking of having outings and holding events for the Reading past carers to have something to look forward to.

Fairview has also kindly offered to write a blog for our front  page, about the difficulties there are for past carers.

I hadn't realised that you were starting a local group Fairview. Our bereaved carers In Burnley Pendle and Rossendale have a group run by our local carers contact, They really benefit by it, they can access it for 3 years  & they also  have a craft group& then there is another group for moving on called \Friends in bereavement  & they have lots of social outings as well as meeting up once a month & have speakers at their meetings

Just to say good luck with the local group, it is always nice when we can meet up together n see who you have been "talking" to online

than999 Wendy for making this clear.
Sincere apologies to Fairview and wishing you every success.  33900
x

Fairview I commend you for wanting to set up a support group for ex-carers. I know how hard it is to feel alone and isolated and sad.
goo@@@@ with your venture. I am sure that it will be a success as you have the important ingredient to share with others - 'experience'.

I think it is a good thing to start a local support group for former carers - so I wish you every success in setting up the group in Reading.  Your own experience is an excellent starting point!

Daisy 

Good luck in starting your ex carers group

Ann x.  33900

Fairview has written a blog which I think will interest you.  I will post it later.

Thanks to Wendy for excusing my lack of personal details. I should have 'read the small print'
So...here goes..  I am 68, was widowed at 42 when my husband had a massive heart attack. Our daughter is 44 and lives in Kent with 3 of my 5 grandsons. Our son 42 lives in Copenhagen with the other 2 of the 5 boys.
I qualified as a nurse in 1966 at Kings College Hospital after doing my Orthopaedic training at the Nuffield Orthopaedic Centre.  I worked in the NHS for several years in A & E. before starting my own business which I sold some years later.
Briefly a car crash in France when I was 38 changed my life. I had a skull fracture and brain haemorrhage and was in a coma for 10 days before being flown back by air ambulance to Southampton hospital. Luckily the swelling from the bleeding had begun to subside so I didn't need an operation but had about 3 months in hospital recovering. When I had my first check up after leaving hospital l was diagnosed with narcolepsy and cataplexy as a result of the bang on the head. Believe it or not I didn't know what this was so had to look it up in my dictionary when I got home. Good doctor patient communication has obviously moved on a bit since then.
Five years later I was widowed and my son was at boarding school and my daughter at college. Not the best time of my life.
Let's jump a decade or so and do a quick recap. I was Chair of the Parish Council in Wiltshire where I lived before moving to Reading to look after my Mum.
I am a Patient Advocate at my local hospital, Chair of South Reading Patient Voice, Edit and read for Reading Talking Newspaper and am going to do something for ex-carers in Reading. I'm also going to have a cup of tea now.
You guys don't know how lucky you are to have Chills4us and I hope to be with you for a long time.