Supporting end of life care, need help.

[MandarinDentistTiger]

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.

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.

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

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.

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.

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)

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.

I have sent you a DM.

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.

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.

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

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.

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.

We couldn't get a hospice place for my terminally ill parent. I managed to find a bed in a BUPA nursing home and they were brilliant. Really cared for parent and us too. Parent died within 24 hours of arrival. It was as if they felt it was OK and just let go.

I'm sorry you find yourself in this situation, it's just awful on every level.

Having been through this with my mother recently, and having seen a friend go through it with her husband, it is far more complicated can this.

It can be traumatic. Promised 'hospice at home' doesn't always amount to what you think it does.

So sorry you are going through this, op. There is good advice about about where to go to get care put in place / referrals made. I've found Marie Curie very helpful with end of life care information and support.

Do you have Marie Curie nurses available locally?

@MandarinDentistTiger op, you say he is falling out of bed? Does he have a hospital bed or is he still in a normal bed? Have they provided other aids and equipment? It’s very much up to the family whether or not they feel they wish and are able to keep him at home, hospice at home services are generally postcode lottery but it sounds like you all need a plan in place asap as it sounds like he is declining fast. As a family you need to be extremely clear to health services whether or not he could stay home if a certain level of support is available, this will include discussion around end of life medications. In my hospice, patients are assigned a community palliative care nurse to coordinate this,offer support annd andvice and lease with GP / district nurse service but, again, postcode lottery means variations in care approaches. Generally with the elderly,terminally ill patients, ( as opposed to working age ) lack of availability of hospice beds tends to mean they are signposted to NH care if family are unable to manage. Ps. Even if someone is elderly and in a NH, our hospice community nurses and other hcps’s still visited to give support and advice, but I know everywhere is different.

If he is eligible for fast track CHC a nursing home placement might be an option.

Hospices tend to be reserved for patients whose symptoms are not being managed at home.

Has he got a hospital bed and air mattress? Have you got just in case meds incase he gets symptoms?

If he is eligible for fast track chc you might be able to increase how often the carers are coming in and possibly have some night sits as well.

I don't think his symptoms are being managed at home. He is confused, weakening and will not eat. He will not talk about pain. This half life is awful.

He has an airbed. We have been told no to sides. I have asked someone to come out and assess him.

The problem is, we have no idea what is possible, never mind if we can ask for it. This thread has been super helpful. Thank you all. 💐

In our case hospice at home was a godsend as we're Marie curie for overnight respite occasionally

That sounds life changing.

I've taken a few days leave because I'm so tired. I work full time. I will worry about managing work and care on Monday.

Like a lot of people in this position, I have dependant children and elderly parents/in laws. All of this, GCSEs. scout camp weekend, school events. Life was a was a lot before this diagnosis.

Hospice care now tends to be reserved for those who are struggling with symptom control, however if you are wanting a residential placements most care homes will offer end of life care ( nursing home would be best as nurses on site but a good residential home with district nursing could work as well. If your father is sadly in the last 6 months of his life and demonstrating rapid decline he should be entitled fast track CHC funding to support this.

Give the district nurses a call and ask for some urgent support.

Thank you.