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Elderly parents
Original poster

Supporting end of life care, need help.

39 replies

MandarinDentistTiger · 14/11/2024 10:49

My DF has untreatable cancer. They have moved into my sister's home.

His health has consistently and rapidly declined. He was able to walk in short distances, no relies on a wheelchair.

Very confused, not eating, lost a lot of weight and is dosing rather than sleeping.

He is falling out of bed and is fragile. He needs support 24 hours.

We have been told he may not have hospice care. This week carers have been arranged in the morning to help him wask and dress. The situation is at breaking point.

OP posts:
Original poster
MandarinDentistTiger · 14/11/2024 17:32

Hospice at home might be worth looking into. It is interesting that is a potential option.

He was signed off from the cancer consultant and told there would be no treatment. He did not want any, it isn't an option, this is end of life.

I spoke to someone today in the district nurse team, they are looking at funding or confirming what is in place.

My siblings and I have POAs in place.

OP posts:
Radiohorror · 14/11/2024 17:17

I have recently been through this with DH. It is harrowing & exhausting. It made a difference for us once we got involved with the rapid response team & then got CHC for carers 4 times a day. It made a huge difference, although I was getting to overnight breaking point as he got up the end. See if your local palliative care team offer hospice from home. You can usually self refer & it will be someone like Macmillan or Marie Curie. Marie Curie do some overnight care as well.

Mumof1andacat · 14/11/2024 17:12

Would he be self funding for a nursing home? Are there savings over 16k? Do you have power of attorney?

Original poster
MandarinDentistTiger · 14/11/2024 15:37

We have been looking after him for six years. He has wanted to go all of that time, he is tired and feeling very elderly.

He had an untreatable cancer diagnosis a few months ago. He is struggling and wants to go to a hospice. He just wants to die.

He now needs 24 hour care. We are broken and exhausted. Perhaps be more understanding.

OP posts:
Notaflippinclue · 14/11/2024 15:09

This reply has been deleted

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OhshutupSimonyounobhead · 14/11/2024 14:45

Notaflippinclue · 14/11/2024 14:42

What does he want? Dying at home surrounded by family is best, imagine if it was you - what would you want?

Please ignore this OP, I am sure you know what is best for your Dad without an internet random making you feel guilty.

Notaflippinclue · 14/11/2024 14:42

What does he want? Dying at home surrounded by family is best, imagine if it was you - what would you want?

OhshutupSimonyounobhead · 14/11/2024 14:41

I have sent you a DM.

OhshutupSimonyounobhead · 14/11/2024 14:38

OP I work in this area. You need to ask the Palliative care team / District Nurse team to refer him to CHC for an urgent care home placement via fast track if no hospice is available. I have had patents be admitted the same day and it is fully funded through the NHS.

wheretoyougonow · 14/11/2024 14:37

Contact your local CHC office (Continuing Healthcare). If your father is on an end of life pathway they should be meeting his care needs and it should be free (in England certainly)

Original poster
MandarinDentistTiger · 14/11/2024 14:33

The GP is contactable by phone and has got some morning care arranged. They will come around 10am to help wash and change.

Night care twice a week might extend what we can do at home. He is very confused and declining every day.

OP posts:
Original poster
MandarinDentistTiger · 14/11/2024 14:29

Nurses are coming every other week. It isn't enough.

I definitely feel like they want him to stay home no matter what. They basically said, he is unlikely to have access to hospice care. I understand there are people with no-one. We just cannot continue to provide 24/7 care.

OP posts:
Mumof1andacat · 14/11/2024 12:04

Contact the gp for a review. Do you have the district nursing team involved?

IWantToGetOffHelp · 14/11/2024 10:57

I’m so sorry, it’s absolutely shit. End of life care is abysmal in the UK unless you can get in the right place. Once they are at home, they don’t get enough care and it falls on the carers. It nearly broke us as a family looking after my grandad. You have to shout load for support, however, once they have moved in with the family, you can’t really say you’re refusing to care for them which is what it took for us to get support.

Honestly, best thing to do is get them taken to hospital via ambulance next time there is an opportunity - a fall, infection, breathing difficulties etc. and refuse to take them home: They will get into hospice then. It’s a shit system.