looking for former carers to share their experiences

[tinkq]

Being a carer can be a full time job and when it ends, for whatever reason, it can be traumatising. You were needed almost every second of every day and used to not thinking of your own needs, instead putting others before yourself.
Death of a loved one is something incredibly hard to deal with but inevitable for all of us, as I was once told "the only things in life you can’t avoid are death and taxes".

As I was looking through some forums for carers I found a topic called "ex-carers".
One quote in particular stood out and I wanted to share it. If this strikes a note with you we would love to know about your experiences and feelings as you are perhaps dealing with a change from being a carer why not leave us a comment below!

" A ship sails and I stand watching till she fades on the horizon and someone at my side says “She is gone.â€

[zavrou]

When my husband was alive I was visited by an association called Carers For Carers or something like that. They said that they were there to care for me. My husband had five people who assisted him with personal hygiene and who operated on a rota system and were in everyday. This was in addition to his doctor, his respiratory nurse sometimes a physiotherapist and at the end Marie Curie Nurses every four hours from early morning til late night. Then he died. And I, who had cared for him, waited on him hand and foot,(and who would still be doing it gladly) and who now probably needed someone to care for me never saw any of these so called carers, apart from his doctor, again. My husband and I lived very solitary lives, friendships go out the window in the face of extreme illness and they knew our situation. So where exactly does the Caring for Carers kick in. I am grieving, my heart is broken, there are days when I do not want to go on and these people who are supposed to be supporting the Carer are nowhere to be found.Do not be fooled by these organisations or those who tell you that they are looking out for you. All they are doing is handing out pamphlets and brochures and things that you probably already have and know and patting themselves on the back and telling themselves that they are doing a good job while they collect their wages. Caring for my husband was the best thing I ever did. I would have done it for another twenty or more years If it meant he would still be with me and knowing what I know now I would not let these people in the door.

[charles47]

Hi Zavrou. This is an issue that comes up quite often in my area. In our carers centre, we take the approach that anyone who has gone through your situation is still entitled to our support, especially in areas that are linked to caring - such as money issues, etc. Our main problem is that funding for carers usually stops as soon as the caring ends, so we have to find other ways of providing that support.

We've been pushing for recognition of the needs of people who are in your situation, and there are signs of recognition in one council at least that this is a serious issue to be addressed.

[zavrou]

You speak about funding as a reason for care to fall away. Well my take on that is that for a pathetic £55 per week we save the government millions so when we need help and or care why are we hung out to dry. It is said that it is not unusual for a spouse/partner to die within (I think) four months after the death of their loved one so surely a visit once a month for those four months would not be onerous. My own circumstances are such that the death of my husband has left me feeling empty and that life is not worth living without him. I am told that this feeling will pass but it would be nice to know that if it doesn't someone out there would care.

[Saoirse]

I know that a former Carer can suffer bizarre health problems when they stop caring. Apparently when you're a Carer your body produces a cocktail of chemicals and hormones that help you to cope with the stresses and strains (physical and mental) of caring.

When you stop being a Carer, the hormones and chemicals are still racing around your body but they have nowhere to go, so you start to feel ill. Dizziness, light-headedness, memory problems and shaky limbs or numbness are some of the 'symptoms'. There's not a lot you can do about it, but wait till it subsides after a few weeks. I found exercise helped to lessen the effects.

[charles47]

You speak about funding as a reason for care to fall away. Well my take on that is that for a pathetic £55 per week we save the government millions so when we need help and or care why are we hung out to dry. It is said that it is not unusual for a spouse/partner to die within (I think) four months after the death of their loved one so surely a visit once a month for those four months would not be onerous. My own circumstances are such that the death of my husband has left me feeling empty and that life is not worth living without him. I am told that this feeling will pass but it would be nice to know that if it doesn't someone out there would care.

I completely agree, Zavrou, and were it left to me there would be more support. But services cost money and carers centres need funding to keep their doors open at all - many services for carers have been cut, or lost altogether, around the country. At the carers centre where I work we aim to keep providing services for two years after caring, and beyond where we can. But some services we provide on behalf of social services and we cannot do this for those services. Which is why as part of my job I've been arguing for some years for more recognition and support for people who have been carers - especially those who have been bereaved. We're just now seeing a shift in understanding of this issue.

[Guest]

Hello Zavrou,

I am not sure if this will help and you may already be doing this or thought of this, but I have found CRUSE, the voluntary bereavement counselling service to be helpful. In my area they offer a weekly group drop in session and I have found the people i have met and the stories i've heard to be a real source of comfort and inspiration.

Relative strangers have helped me to grieve and start to come to terms with the loss of my mum, as I start to get back into work. I wonder if there is a CRUSE group near you, or whether you could find a few other people like yourself.

Go well

[NanaNana]

Zavrou and Saoirse, with all this end of care health issue talking - you're scaring me. It's only been a month, is that what I have to look forward to? After the adrenaline of doing jobs and duties has worn off?
Really?

[lell7]

some people will be in better situations than others when caring ends, just as there are differences in the support different carers get. We ignore our own needs for years, because we have to, to keep going. suddenly to have to re-evaluate our lives following a bereavement is a physical and psychological shock.After years of no 'me time' at all, we suddenly have nothing but time. My experience has been that strangers/acquaintances have been much kinder than family, perhaps we have to take into account the effects of bereavement on them. There's also guilt, for those who didn't help and know it - too late for them to change that now, so they re-write the script in their heads, and the carer can come out of that as the baddie, or so I'm finding. No idea where such animosity is coming from, it's all I can do to get out of bed but I'm getting such harsh attitudes from the people I thought cared about me that it's hard to see any point in going on. If the experience is better for you then good, but those who are struggling need to be able to express that somewhere and hopefully this forum is that place where they can let out some of their distress without being judged.

[crocus]

it's all I can do to get out of bed but I'm getting such harsh attitudes from the people I thought cared about me that it's hard to see any point in going on.

Im so sorry lello.
Try and be gentle with yourself at the moment. Try and do one thing for yourself that is nice every day. It doesnt have to be much - a hot nice smelling bath; a mug of hot chocolate; a few flowers in a vase; a favourite walk; maybe a new lipstick, or listening to favourite music.
Its time for yourself at the moment.
xx