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End of Life Void - Carers UK Forum

End of Life Void

Share information, support and advice on all aspects of caring.
Hello,

I moved from Wales (temporarily) to care for my dad, he is end of life (we've been told) and have been here about 3 months. He has pulmonary fibrosis, lung cancer, lymph nodes and we think colon cancer.
It feels like I am on a depressing rollercoaster. There are times when I think he wont make it through the night (it is a night like that tonight) then he seems full of beans again.

I am not 100% sure when I am meant to call the hospice because it changes so rapidly, I am going with what I have learnt so far and my gut instinct I guess.

How do you cope with this up and down, feeling relaxed.......then on edge, listening for his breathing and then not worrying about it because he seems fine.

I think we are nearing the end as he isnt eating much now and he is sleeping more, but I thought that about a month ago. Its so confusing and something I simply cant do anything about apart from provide him love and what care I can give.

Any advice very much appreciated; it feels good just to have shared what I feel tonight
My mum spent her last year in a nursing home.
I never knew if she was going to be on her last legs or fine, so I sympathise totally with what you are going through.
Are you getting any regular support from nurses or carers so you can have some time off?
Is dad getting Attendance Allowance, and NHS Continuing Healthcare, free care at home?

I googled "Signs of Dying" and found some really good articles (but gentle and easy to read) about how the body gradually shuts down.
It mentioned fidgeting with invisible crumbs about 2 weeks before death.
I was so glad I'd read that, as it described very accurately what mum did.

If you haven't done so already, you need to investigate funeral directors, so that when the time comes, you can just give the firm of your choice a call, and they will do everything you need.
I know it's horrible to think about, however much better to do it now than in floods of tears afterwards. I found my husband had died of a heart attack in his sleep at the age of 58. Traumatic doesn't begin to describe it.
Thank you so very very much. It really does help to hear that someone else understands!

Dad has a carer come in 3 times a day for about 45 mins in total throughout the day. He doesnt need much done but the carer does the comode, washing and meds to take the pressure off me, especially on the days that I am working from home. Nurses arent coming in at all really. We have seen 1 from the hospice and then we I had a moan 1 from the district nurses. But then he hasnt been in any pain or any real symptoms until the last 24hrs. I am still waiting to hear about attendance allowance.

I am doing as much self care as I can, and getting out to see friends. I have worked in life limiting illness for many years but not face to face with end of life. So emotionally I feel as resilient as anyone can, I feel at peace with the life/death cycles and myself and my dad have spoken about it for years and we have already paid for his funeral. Which, I know, wont take away from the grief I will experience when the time comes. I have felt as if he is holding on for xmas day for some reason, as it will only be he and I on xmas day. He doesnt really have any other family apart from me.

It was very helpful to hear about the fidgeting and crumbs. He woke up in a full body sweat this morning and said he was brushing dead skin from his chest and then his bed last night...I didnt have a clue what that was. He had another hot sweat this evening.

I cannot imagine what you went through (and what you still go through maybe) to have experienced such a heartbreaking situation losing your husband at such a young age so suddenly. My heart goes out to you. xx