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What the heck do you do - Carers UK Forum

What the heck do you do

For anyone who is bereaved or no longer providing care.
Hi

I lost my brother at the start of September to Huntington’s he was just 47 . I’ve been caring many years it’s a slow disease with Lisa after loss though the end was sudden .

Being genetic it’s been a lift of loss grandfather , uncle and our mum when I was 12 and Mark was 6 .
I became his guardian after the death of out Nana when I was 18 and he was 12 . So have been caring and responsible since then and the bereavement is Otha brother and also like a child .

So now there is a huge void . I live with my partner and think can have some time to readjust ( do you ever ?) but guess will have to do something at some point . In fact has a disagreement with a friend who I think thought I should be out doing something useful straight away .

I feel physically terrible , emotionally fragile but know
How easy it would be just to sit in my pj’s all day .

How do people cope with this massive change?

Jackie xxx
Jackie,
you have been caring for a lot of your life and experienced a lot of loss, no wonder you are finding it hard to adjust. There a quite a few members who have experience of this and I'm sure they will be along. In the meantime, you might find this information helpful https://www.carersuk.org/help-and-advic ... ter-caring

Melly1
Jackie_1703 wrote:
Sun Oct 06, 2019 10:39 pm
Hi

I lost my brother at the start of September to Huntington’s he was just 47 . I’ve been caring many years it’s a slow disease with Lisa after loss though the end was sudden .

Being genetic it’s been a lift of loss grandfather , uncle and our mum when I was 12 and Mark was 6 .
I became his guardian after the death of out Nana when I was 18 and he was 12 . So have been caring and responsible since then and the bereavement is Otha brother and also like a child .

So now there is a huge void . I live with my partner and think can have some time to readjust ( do you ever ?) but guess will have to do something at some point . In fact has a disagreement with a friend who I think thought I should be out doing something useful straight away .

I feel physically terrible , emotionally fragile but know
How easy it would be just to sit in my pj’s all day .

How do people cope with this massive change?

Jackie xxx
It is time to develop any hobbies you have. Keep yourself busy and meet new people too. What about learning a new skill? Your friend is right, distraction is a good self help technique/coping mechanism.
Make time for exercise as well.
Hello Jackie
I understand where you are coming from! When my now late husband first went into the nursing home, it took me 12months to think straight. The garage was chock o block with things, He became a dreadful hoarder with his illness. Was when I HAD to sort it that started me on the refurbishments. So my point is, you will in your own time, not anyone elses, start to do the things you would like, or need doing. Sit in your pjs for a few hours if thats what you want to do. Believe me it wont last. No one person is the same, and some people including myself do not cope with being pressured.
Do you feel ready to start a list of things you would like, or need sorting? Little things, like a few hours out with your husband, when you feel ready.
A list is where I started. It may or may not suit you.
Take care, its early days yet, and its natural to feel fragile
From another that has been doing this most of their life,

You have been through an awful lot from a young age.
Consider that this is not just going to be a mourning period for your sibling, you will probably feel like because of the ongoing situation with your family you were never able to properly grieve others due to having to put on a front/be strong for others.

So part of me does agree with the friend in doing something, but in the same breath I feel like its worth taking a step back to rest, process everything.. and then get healthy, not just physically, but emotionally, maybe get that gp check up you might had put off, get any ailments which have built up seen to etc.. before throwing your self neck deep into something new. I mean regarding the PJ's.. doing nothing is still doing something.

I mean personally I would question if the friend giving that advice had actually gone through anything remotely like what you have before acting on their advice.. because what works for one doesn't usually work for all.

I'd imagine what you wanted out of life at 18 when you took this all on has shifted dramatically in the years/decades which have followed.. maybe take a break with your partner and get away for a week so you can evaluate together what you would like to do with the rest of your lives be it personal, professional, aspirations for retirement when the time comes, etc

Your closing a chapter of your life and beginning another, but just because those you care about are gone doesn't mean you love them any less and they'll always be a part of your life.. look at this as a fresh start where you now concentrate on yourself/your partner moving forward

Be kind to yourself

My condolences for your loss

Best Wishes
Thanks

Just taking one day at a time .

Jackie x
I found a book called Starting again by Sarah Litvinoff helpful when I was bereaved. Lots of good ideas to encourage you to think about what you want in your future, and what you don't!
I became so anxious after the loss of my Mother earlier this year (I cared for her for just under 3 years) that I am rarely able to leave the house.

I am gradually improving with the help of weekly berevenent counselling and the support of family and friends.

It is a slow subtle process and you will need to take it one dsy at a time as you rightly said. Best of luck.