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When the caring role ends - Carers UK Forum

When the caring role ends

Share information, support and advice on all aspects of caring.
This is a copy of an article I read, this something I have spoken about so many times but nobody seems to want to debate it or take it on board.
I have been here and can all too easily key in to this, it is far worse than is believed and too easily dismissed, it is correct that the emphasis is very much on the Carer but equally for a period of time the Carer needs their support to continue. Loneliness and depression is something people do not talk about, it is kept within as it is an embarrassing and silly thing to admit to and the easy remedy to give pills to cure the situation is not the answer, an easy one yes but it is something with support that the individual has to fight and climb out of that deep dark hole. This has been the motivation for taking on more voluntary work, to get out of that awful hole and keep out of it. We had been with the same surgery in various forms and names for almost 50 years, I had been a 24/7 Carer of my wife for 29 years but suddenly in the early hours of that dark miserable irreversible night just like a light switch being turned off my life dramatically changed. I was no longer a Carer, I had no focus, I lost a partner of 67 years, having grown up as youngsters together. Would the surgery phone me to offer support, advice or whatever? No, of course they didn’t! You are on your own, the records are amended, another patient removed and that is it, just cold, clinical, no feeling or thought but what else would one expect from a profit making business?


"Support for carers must not stop after the person they look after passes away or moves out of the home, a new report has urged. Carers need help not just to look after loved ones, but also to cope with the aftermath of their caregiving coming to an end, the International Longevity Centre UK (ILC-UK) said. People, often the elderly, who give up a caring role to which they have devoted much of their lives often suffer from depression, both the loss of a loved one, or getting used to them not being at home can lead to isolation.
The report urges Government, councils and support organisations to do more to help carers visit the people they cared for if they have moved into residential care, and also to provide extra support if they are dealing with bereavement. There are almost 1.3 million carers over the age of 65 in the UK. A long-term care role often leads to a decline in quality of life and happiness, the report said, and problems can persist or even become worse when people cease to be carers.
Helen Creighton, from ILC-UK said: “Carers give so much of their time to helping someone else and, quite rightly, the focus is often on the person who is in need of care. “However, when their caregiving responsibilities end it is essential carers are not just abandoned. Local authorities need to do more to help ex-carers make connections in their community and may want to consider setting up forums where ex-carers can come together to support one another.”
Bereavement is by nature traumatic, let alone when one has been a long-term carer (or perhaps even only a short term one).

I agree with you that the bereaved do tend to be 'abandoned' - not necessarily by friends or family - but certainly by the medics etc. When my husband died, I went from an incredibly 'busy' house with nurses etc coming and going, to...silence....

Personally, I would say contact your local hospice when you are first bereaved. Mine was wonderful, and sent over a bereavement counsellor, who was a real 'lifeline'. Hospices are 'death-oriented' and in a way, the bereaved can feel 'safe' there, as everyone you speak to is, by definition, 'acquainted with death'. It's the country they live in, and instead of feeling 'weird' and 'different' and even 'scary' as one can with non-hospice organisations, one can feel 'at home'.....

I agree that volunteering can really help too. It can give a sense of purpose, and also, I think, of 'continuing the fight' only this time for others, not for the person one has loved and lost.
Yes indeed Jenny I had a situation similar to yours with many and all sorts in and out night and day, constant movement, noise, chatter, even laughter but then unscripted that unseen hand turns the switch off and all that activity and focus is extinguished like a light. You are on your own because friends, family, social life, everything "normal people" take for granted vanished over the hill many years ago and try as you may it is hard to fit back in to those circles, they've all moved on! You having been somewhat stifled even find the mere act of putting a coat on to go out not easy to do, almost feeling of guilt as it's something that now is un-natural to you. Until you are put in this position it is hard to explain adequately to anyone, you aren't prepared or trained for it yet you have to deal with it.
Les, I would also recommend to anyone widowed under any circumstances, is to try out a widows/widowers forum. There are several, but the one I sort of 'gravitated' to (or just found, I guess), is WAY - there are two tiers - WAY is Widowed and Young, and was started first (not many 'young widows and widowers' - though even one is one too many....) and then I think they grew older, and so started another branch WAY UP for I think, over 50s.

The great thing about being in an 'all-widowed' forum is that like the hospices, we are in 'Death's country' so to speak. We can say 'anything', we can emote in any way, and it's 'OK' - we don't feel weird and no one is 'embarrassed' by us, or doesn't know what to say.....

I think, in the end, that we are all, each of us, in a kind of 'multiple Venn diagram' world, where we belong to multiple different groups, and overlap with some others. I live in Widoworld, and Cancerworld, and now Carerworld.....

And I think you're right - we live in these 'worlds' without training, but have to feel our way as we go. And they are all 'worlds' we'd rather not be in....
Thanks Jenny, without your contribution this would fall flat. Why are there always lots of peepers but the vasy majority always fail to offer anything? It is a very valid saying "It's good to talk" Jenny, I have sent you a personal message.
Les,

Maybe it is not discussed much because posters on the forum are either still immersed in the demands of day to day caring or recently bereaved/ adjusting to life after caring and it's too soon for them to be communicating about this. Likewise those able to talk about it (experience wise) and who are ready to do so, often leave the forum as part of their "moving on" from caring. It's a very personal thing.

Melly1
Les - there are, in fact, quite a few previous discussions on this topic in the "Former Carers" section a little further down the Index.

http://www.carersuk.org/forum/support-a ... mer-carers

and like Melly says a lot of people just don't want to talk about the subject once their caring role has ended.

I too, had no support from either my own or my Mum's GP once she had passed away - but then I didn't really expect any; they weren't that interested when she was alive so why would they be interested once she was dead ?

I had more support from this forum, my local Carer's centre (who run an ex-Carer's group for the newly bereaved).
Les Eve wrote:Thanks Jenny, without your contribution this would fall flat. Why are there always lots of peepers but the vasy majority always fail to offer anything? It is a very valid saying "It's good to talk" Jenny, I have sent you a personal message.
I can't speak for anybody else but I quite often don't reply to things I read because I don't feel I have anything useful or meaningful to say. I've also found that some of the posters on here know a lot about a particular thing (like bereavement or dementia for example) and I know they'll be along with good advice and support so I don't want to post something that might not be helpful when I know someone else will be along with something that is useful (if you see what I mean!).
Melly, I agree, it's a very personal journey.
I'd liken my own experience from the world of caring/bereavement into the 'real' world to that of the little boy who sees the emperor with no clothes...I could see the triviality of the world having dealt with the important stuff.
Jx
Les Eve wrote:Why are there always lots of peepers but the vasy majority always fail to offer anything?

I also read, but dont post f I feel I cant add anything useful (although my dad has died I am still caring for my hubby and my mum).
Also, dont forget that anyone can view the forum (including search engines). Most of the hits on a thread are by people who are guests rather than members and therefore cannot post, or by people who have already posted, but are interested to see what else has been contributed.