I’m looking for advice as I’m currently caring for my Dad with terminal cancer of unknown origin.
he was diagnosed in December 25 after being admitted to hospital for feeling unwell. The diagnosis was a complete shock for all, metatastic cancer in his lungs, liver and bones and he was given a weeks to 3 months prognosis but told to prepare ourselves for weeks.
He has been cared for at home since, the first weeks were fine and due to high dose steroids he was buoyant and very accepting of it all. Now his steroids have been reduced to minimal dose and he’s using oramorph more regularly although isn’t in vast amounts of pain.
what I’m struggling most with is the uncertainty and his changing personality. He’s become very bad-tempered, complains about everything and plays off friends and family who visit, telling them all I’m essentially doing bad job of caring for him. He gets confused easily and now I’ve stopped myself from correcting him all the time as I can see he is getting distressed about his confusion.
he think he should be in the hospice and for the last 3 weeks has been arguing with me and the palliative team that the system is failing him. I understand he can’t be admitted until he is ready and in the active dying phase - can no longer swallow, not eating, sleeping all day etc - but getting to that point and watching this decline alone feels like it’s going to be harrowing. We have carers helping with his washing, bowel accidents etc and regular district nurse visits. His skin is getting more compromised but being managed. He also got shingles a few weeks ago which added another layer of stress but that’s calmed down now.
I guess the way I deal with things is to try and be prepared, to know what the signs are / could be that tell me he is nearing the end. Like how quickly can he go from still eating to not, still swallowing fine to not. Is it a gradual process that happens slowly over weeks or is it one day fine the next day not fine?
I moved in with him in December and usually live three hours away, I’ve had to step away from my life and business to be here for him and I’m massively struggling to cope with it all. A few people have advised me now that moving him to a care home may be a better option so I can be his daughter and not his carer and prevent further deterioration of our relationship but I just don’t know what to do. His wishes are that he wants to die in hospice not at home.
Hi Michelle111 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community, and I can see that you're going through a very difficult time right now.
The online community is divided into different support groups so I'm going to recommend that you join the supporting someone with incurable cancer group which is where you can discuss your emotions about the prospect of losing your dad, as well as practical issues about palliative care and end of life.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
Sending virtual (((hugs)))
Hello Michelle (Michelle111)
A warm welcome to the Macmillan Online community, although I am so sorry to find you joining us under these circumstances. I am Brian, one of the Community Champions here on the Community.
So here's a link to some information i hope to help you understand just what is happening at this time:
End of Life - the last few weeks.
We also have two groups you can join and the links to these are below
Supporting someone with incurable cancer forum and
You ask about a hospice and you can find full details about Palliative Care Support and information by contacting Hospice UK on 020 7520 8200 or www.hospiceuk.org
You can get help as a carer from The Carers Trust on 0300 772 9600 or www.carers.org
Finally our own Support Line is there for you on 0808 808 00 00 (8am to 8pm 7 days a week) please do give them a call.
I hope the above helps.
Best wishes - Brian.

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