Caring for terminal patient at home or nursing home

[Totallybannanas]

I finally spoke to st Luke's today and they advised us of our options going forward for when my dad becomes poorly. They said he may have to go into hospital, or he could choose to go to a nursing home or stay at home and have carers come in, but this would only be 3 times a day and because he lives alone there would be periods where he would be on his own with our carer unless I stayed.

My dad wanted to stay at St Luke's hospice , but they only take patients a few days before and only if they have a bed. I am completely blind sided right now. Dad really wanted St Luke's or to die at home. But I am worried how I will have to care for him if he stays at home, as I am his only main carer and my sibling is unable to. I would have to go sick or give up work as couldn't leave him alone especially overnight and if he really wanted that I would do it. But if he chooses to go to a nursing home, they would get him in before he becomes acutely unwell to give him time to settle. I didn't ask if this would then be his place of death, or whether he would still have an option of a hospice. He was only diagnosed 4 weeks ago with oesophagus cancer. He is so depressed as he can't eat normal food. Despite being 80, he has never been poorly and vulnerable before 😥
Can anyone advise?

Ring your local cancer charity. Macmillan? Sorry, I’m not in the UK. Otherwise, see what his doctor can advise. Sort out all powers of attorney etc this week. Try and get him to his bank to get your signature on his accounts.

Caring for someone until death mostly on your own is hard. If he went into a nursing home, the caring and medication would be done by them and you get to be just his daughter.

You write as this decision is fairly urgent. I’m so sorry you are going through this. Hugs from Australia coming your way.

Thank you

Another shout for contacting Macmillan. I would try and avoid end of life care at home and consider other hospices. They are the pain management professionals, which just isn't possible at home with three visits a day. So sorry you're both having a terrible time.

My friend recently died 9wks after diagnosis and as the cancer spread to her brain she needed looking after 24-7 so had to go to a nursing home. Was so sad as she was only 57. She died there, they don’t move them to a hospice once in. She had same issue with hospice, as it was around 5-6wks she was in the home before she died and they said hospice’s only take patients with a few days to live.

Hospice. I’ve cared for a parent dying at home before and I vowed I would never put my family through it. My experience was that the community nurses do not have the authority to give the level of pain relief a dying person needs so each time they’re in pain it become a fairly long and traumatic wait for a sensible amount to be prescribed. They were all lovely but they were out of their depth. I’m being somewhat cynical here but we were pushed to care at home and we were told that actually it was a very peaceful process - it wasn’t although I accept that it is for some people and that we’d have a good care package - we didn’t.

Having done both I would choose hospice. They were absolutely amazing and managed pain in a way that was impossible at home. I’m so sorry you’re going through this. It’s incredibly difficult. Hospice do make everything easier.

Nursing home. That was the best option for my mum - the idea was that she had the option then to move to a hospice but the end came much faster than anticipated and she stayed there until she died.
It really was the best option - they had nurses available round the clock to give pain relief and carers to do the physical care and as a pp said, we could just be there with her, as much as we wanted and needed. They were happy to provide a folding bed if we wanted to stay overnight.
The level of care was outstanding - the carers were so lovely with my mum, a couple of them would drop a little kiss on her head after combing her hair - I know that sounds weird but it was so moving to see.
They were very supportive to us and made it clear that was part of the package - brought us tea and biscuits, food if we wanted, made us feel cared for too during an awful time.
The last few days can be very very tough in terms of care so it is something to consider carefully.
Take care of yourself - sending hugs.

I’d opt for nursing home with the option to move to hospice at the last min if possible. That’s what we did as home just wasn’t possible. My relative wanted to be at hospice and we were able to get them there but it was v last minute, we were there less than 24hrs so just be prepared for the chance it might not be possible if things change quickly. I’m so sorry you’re going through this, sending love.

We were told of a hospice at home package and that we’d have really good support which largely failed to materialise. It felt like we were always chasing them rather than someone looking at his case and saying will need x, y and z.

Id say nursing home as they will be on top of things. It does sound as though he’s a bit down and needs to be around people rather than alone.

Many patients die at home with support of GP and District nurses, carers do personal care not pain management.
Pain is managed with a 24 hour pump and Fast track funding provides carers

Hospices have nurse led beds for those who wish to die there and Specialist beds for those whose symptoms mean they need constant monitoring or adjustment

Please don't inform people they can't die peacefully at home if you don't even understand how community EOL care works.

Many patients die at home, that's true. And what's also true is that many aren't able to access adequate pain relief, despite pumps and staff coming in. So while you might not have seen the worst of the system, others have.

Your sounds like it comes from the angle of professional knowledge. Whereas the poster was sharing their actual experience.

I’d hope that even with professional knowledge you’re able to acknowledge that there can sometimes be a big difference between the theory of what’s available and how things work, and the reality.

eg. Where we are, it routinely takes an hour just to get through to the GP practise. For anything. So nothing thats done through them or supported by them is a calm experience.

Yes professional
It grates that people dismiss EOL care at home when they clearly don't even understand that carers aren't the ones providing pain relief that's all.

My dad died 2 weeks after being diagnosed recently. He didn't want to be in hospital as he hated the one overnight stay he had. He was at home for just over a week and it was massively difficult for my family caring for him.
We had to have a special bed delivered and set up downstairs to help stop him getting bed sores.

As he deteriorated, he could barely eat anything as cancer had spread to his throat. He would call out constantly for sips of water. Noone got any sleep.
The carers came in 3 times a day, but the rest of the care and toileting my family had to do.

He wanted to be in a hospice. Luckily we managed to get a bed 5 days before he passed.

The hospice was amazing. Someone there all the time, calm and peaceful.

I am so glad he passed there, 14 days after diagnosis.

Do not underestimate the amount of work caring for someone terminal at home is. By being in the hospice we could concentrate on saying our goodbyes, not worrying about the technicalities of his personal and medical care.

I wish you all the best in this very difficult time.

Just wanted to add, we were eligible for overnight care at home. However in practice, this only happened twice as they were so short staffed.

We were provided wonderful EOL care at home for MIL with a strong support of nurses and carers.
I would still not advise it, it was extremely difficult both emotionally and practically and it took a terrible toll on us all.
In a home or hospice you have small pockets of respite, even with the support we had it felt like a relentless struggle.
I'm so sorry you are having to deal with this, hopefully you can come to a suitable arrangement and cherish the time you have left.

In their last days someone may need more than can be provided at home by one person with no special equipment or nursing skills. What kind of additional help is available depends very much on where you live, and without knowing that no one on here can really advise you.

What we can say is that promised help has sometimes turned out to be hard or even impossible to get when we needed it. As local services struggle to meet their commitments this is only going to get worse. @FeatherDawn is right, carers aren't the ones providing pain relief, but they're the ones who are there when the surgery is closed, the district nurses can't be reached or can't get there till tomorrow, and even personal care takes two people to provide with dignity and comfort.

It’s a lovely sentiment but my personal experience is that there is a huge disparity between how community end of life care is supposed to work and what actually happens. You sound like you know what you’re talking about though so it’s heartening to know that in some parts of the country it is happening as it’s meant to, but please don’t dismiss those of us who have struggled to care for our loved ones in their final days at home without adequate pain relief, overnight care or anything else we’d been told was standard.

If you do go down the home route, ask if hospice at home is available in your area.

When my husband died we were in a similar predicament with no hospice spaces available. Hospice at home meant daily visit from a district nurse and I could also call them for top up pain relief plus a visit from the hospice nurse every couple of days.

Speak to Macmillan about the practicalities - what level of care you would need to do etc. My husband had head and neck cancer and ended up with a peg and being tube fed, and also a trachy which both required a lot of looking after.

I must say it was by far the hardest thing I've ever done and it's made me very certain I wouldn't put someone else through that. Mentally it was a hugely damaging experience and if I had my time again I would have encouraged other options.

"grates"?

What "grates" is being told that overnight care will be available. That people will come when you call should condition change. That you'll be supported. Only to find that actually there isn't enough staff to make this happen and your relative is left crying in pain while you struggle to get them out of their own faeces.

By all means continue to live in your idealistic utopia, but don't expect anyone who's actually been through it to believe that the expected level of care will be delivered.

With both professional and personal experience with this, I don’t feel there is adequate support for EOL care at home with the current set up. My mum is a district nurse and her team provide the majority of the clinical care to palliative patients in the area. They are short staffed and overwhelmed quite often. Charities who previously provided vital care eg Marie Curie, don’t seem as present as they were 15 years ago when I nursed my best friends father at home (I am a cancer nurse myself). Hospices are incredible places but reliant on charity funding to survive, hence only being able to take people for short periods or when death is imminent. This is why is am not in support of the assisted dying bill without proper government funding to provide people with a choice of how they die.

OP has anyone been able to give your father a prognosis?

Also let down by services, and had a tough time caring for a dying parent at home (despite also having a big family to pull their weight). What makes me really angry is dad died at home, 2 months in bed, having being registered at same GP practice for over 50 years, which was also about 100m up the road. He was always so loyal to GPs and never over used them, yet In 2 months dying at home we never had a home GP visit. He used to say to me ‘don’t I deserve to see an GP?’. Instead we spent ages on phone, trying to get pain relief, or hospital bed or a hospice referral. I used to think if someone actually came to see him they would be able to see what’s needed, and suggest it to us. When I asked for a home visit, they said no, and to just describe what was wrong or that we needed. We had to ask for things that we didn’t know were available- we got an OT for equipment 10 days before he died, and hospice were due to make first assessment visit the day he died. All predictable but 2 months of nothing. If he’d been seen at beginning am sure GP would have actioned everything immediately.

Hospice care is also patchy, and you don’t get to choose an alternative hospice- it’s postcode dependent. Sorry your going through ot

Every situation is different , and I'm sorry you are going through this.

My mum was given a terminal cancer diagnosis , I was able to move into hers to care for her in the last week's of her life . I had hospice input for her medication. .
One morning I couldn't wake her ( coma ) , they came out and called a district nurse , they attempted to fit a catheter but was unable to do so . There wasn't a bed available at the hospice so we're talking about putting a carer in for 3 times a day to help turn ( stop bedsores ) & clean her up etc .

I was caring for her by myself so asked what would happen the rest of time re turning , helping tidy her up for continance issues etc as couldn't manage to do those things by myself . They basically said leave her like it until carer came .

Then then phoned the hospital about a bed , but was told no bed available as actively dying anyway ( I was on the floor sobbing by now . It was horrific and many hours had passed )

They phoned the hospice again and a bed had become available and she was taken in . She died two days later , never gaining consciousness .

Unless you have a lot of help , 3 visits a day in many occasions is not enough .

End of life care at home is exhausting distressing and gruelling, and will not ensure a pain free death.

Could you get a live in carer, or 1 for day and 1 for night, for the duration of his end of life? If he wants to die at home..