Respite for the carer

Hi there. My husband also had a sarcoma, just a different one, very aggressive and he went downhill very quickly over his last 2 months.

I was his full time carer, although did have hospice at home at the very end.

Its so hard to take a break, do you have any support as a carer? Are you able to leave her for a couple of hours so you can do something you want to? Choir was the only event I went out to every week ntil I couldn't leave him any more.

I don't really have answers, but hope you can find support to help you in this difficult journey.

Hi N99 

Have you had a carers assessment? Getting someone else to recommend you get a break might seem like you are just following advice to ensure you are there when you might be most needed.

<<hugs>>

Steve

Thanks Steve, I’m sure you are right.  My wife probably feels I don’t need a break, or she thinks I just want to get away from her..haven’t had much contact with anyone other than the hospital oncology section so far. I think McMillan will be getting involved soon though. 

Hi N99,

I'm afraid I don't really have any advice. Just to say I have empathy with you. 

My mum won't let me have time away to work, even though my brother can be there to look after her. It is crushing not being able to have one's own space and decisions. Giving myself respite makes her very upset, she says I have to be there because I'm her anchor. It is so heavy and so much pressure.

My heart goes out to you. People say, just get respite, get someone else to look after them. But it's so much more complicated- the upset that it causes the loved one, the guilt and cold hearted Ness that the carer feels. As well as the overwhelming need to be away, just for a bit.

Hi Gingercat

i find myself hoping the inevitable end will come sooner, and that will free me from the heartache and responsibility.  That in turn makes me feel guilty. We don’t yet have a regular visiting nurse, but I’m hoping when we do that she will suggest that I get a break. I might have to put the idea in her head though. 
Keep strong. X

I know, I feel the same and in turn very ashamed I would wish that. 

I remember wishing for the end with my mum who had dementia and had no idea who anyone was.

My husband on the other hand, only went downhill dramatically in the last few days, it was such a whirlwind of activity, there wasnt time to think of anyyhing else.

Once we had hospice support, they were very keen to make sure I got support too because as his full time sole carer, they could see I was burning out. Can you chase your hospice or dr if you dont have a hospice?

Gingercat, does your mum have a routine where she sleeps during the day? This could be an ideal time for you to get out and leave your brother with her. You absolutely need time away, please dont feel guilty for wanting and needing it. You will be stronger and more able to cope if you get some respite, and it would break your heart if you ended up sick and then unable to care for her. It wouldnt be like you were leaving her alone, yes she may not like it but she would be safe and looked after.

I know all this is easier said than done, I was lucky to get some respite nights from the hospice so that once or twice a week, i could sleep in my own bed. 

Hugs to both of you. Its sh*t, i find myself saying that a lot. X

Hi Melengwa, thank you for your thoughts and advice