What the heck do you do


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

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 When caring ends or changes | Carers UK


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



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.