Palliative care at home, what don't I know I don't know

[TeenToTwenties]

Distraction technique, see posting time.
Lost this post once already.

Mum, 90, fainted/collapsed Tuesday. Told yesterday entering palliative care, we would like this at home as also have relatively fit Dad, 96 too. I live 2hrs away, and have a DD with MH difficulties...DB also lives best part of 2hrs, is fab and pulls his weight but less resilient.

Any answers to questions or info from anyone who has sadly trod thus path already much appreciated.

. There are so many different roles. Is there a main role who helps liaise
. We self fund, what is funded by us and what is NHS
. Will anyone help emptying room downstairs, (3 piece suite needs to go) or us that all on us
. Is there a whole family approach or just patient
. How long to get everything up and mum home, 2 days, a week, 2 weeks
. Do they do 'all about me' for the carers on family, interests, or do I need to invent it
. Who looks after me if I am keeping everyone else going

What other info do I need to know or ask

Pick a question, please don't feel you need to write an essay.

Don’t bank on getting CHC. Currently my mother is totally self funding despite hospital doctors reckoning on 2/3 months to live. She was turned down. Now in nursing home and declining steadily. Care home think she is now eligible for FNC funded nursing care.

when you say you need to clear the lounge of a 3 piece suite. Is this because the is for micro living? Two thoughts on that. Won’t your Dad need the sofa once the lounge is returned to a living room and not a bedroom? Does he have a garage that the excess furniture can be stored. And yes you will probably need to move it yourself. Or donate to BHF and they will collect it provided it’s in saleable condition and has the fire compliance tags still attached.

You will need a lot of equipment. Hospital bed. Wheeled commode. How will mum
transfer from bed to commode? Will she need a Sara Stedy or a hoist and sling (that will need 2 carers to operate)

We are buying adult pull ups in bulk from
Amazon. My mum is isn’t truly incontinent but it takes so long to arrange
2 carers and the full body hoist for transfer she can’t hold on that long.

self funding is eye watering expensive. Mums care in a nursing home is £10,400 for July.

Your mum is as able as she will ever be today. But that could change rapidly. Work out the cost of 2 live in carers 24/7 and you will have to provide them an allowance for their own food as well. A care home might be more economical. I know my mum hasn’t the funds to afford to go back to her own home. And even if she did the house could never be adapted as well
as her care home bedroom with en-suite shower room is.

Lots of really good advice here but looking after at home is hard as it's the time in between the visits where things go wrong. My husband's cousin is approaching the palliative phase of mnd. She can just get out but things are progressing. She has a good friend and a brother who merrily said last week in front of the mnd nurse that they would look after her at home as she said she wants to die at home. I was very tactfully trying to agree but exert caution and things might change and hospice might be needed. I'm thinking waiting ages for the district nurses to give the just in case medicines or if she gets really agitated. I don't think her brother will cope with that just knowing his anxious personality type. I'm a GP so they do listen to things I say but I did feel the nurse was being very optimistic.
I hope you do manage it OP and I'm sorry your going through this.
My late husband died at home. He was 50 and a very tall man and I couldn't do any personal care for him. He only had 2 weeks at home but that was exhausting and I was a fit 48 year old and it's only 14 years down the line I realise how hard it was.

I’d be very very careful about agreeing to do this at home. I cared for a terminally ill older relative at home for six weeks in my 20s and it’s one of the hardest things I’ve ever done. I can’t imagine doing it as a 90+ year old.

Even with carers coming in, it’s a lot of time when it would just be him, and inevitably that’s when things happen. It was producing the food, making it suitable. Dealing with getting hold of district nurses and people
who are meant to turn up and either don’t or turn up when you’re not expecting them. Changing pads when you’re between carer visits. Doing the vast quantities of laundry. Getting the shopping done. Welcoming the visitors and absorbing their emotions too.

It’s considerably easier having someone in a nursing home, with their care needs taken care of by professionals who are there 24/7 and not having to worry about laundry or meals. Then visiting is much more about relationships rather than getting things done.

As for who takes care of the carer? Nobody. You’re just expected to get on with it. And once mine was out of hospital and back at home there didn’t seem to be any way out of dealing with everything. My work was incredibly flexible and it’s before I had children but even so it was so very very hard. You also end up having to manage on little sleep for an unpredictable length of time.

And finally...

Ask questions about what to do when your mother does die. I mean, literally, when she breathes her last. Who to call, what will happen. Ask the palliative team, and make sure you have clear instructions depending on whether it's office hours, their working hours, weekend, middle of the night. It may be the GP, or the palliative team, or the ambulance service.

Ideally you will have someone with you from the palliative team at the time, or an experienced end-of-life carer, but that may well not happen.

There is no need to rush. If you have been instructed to call 999 (or 111) the call taker will assume this is a sudden arrest and start pushing you into doing CPR etc. Do not do that.

You need to have her DNAR/ReSPECT form to hand, and when they ask "is the patient breathing" say "this is an expected death, she has a DNAR". They will then understand the situation. An ambulance will be sent, but not on high priority. They will validate her death and tell you what to do next.

Thank you for all additional replies. I have not read them yet. I will when I have time.

A couple of answers.

. We luckily have plenty of funds to pay for care.
. We started live in care 3 months ago, we want this to continue wherever mum is as dad will need support.
. Dad can not and will not be doing any care.

I lasted 36 hours with carers & the district nurse before my mum had to be sent back to the hospital & eventually to a care home where she died. With hindsight it was an unsafe discharge, she was supposedly mobile with a frame but it took 2 district nurses & 2 carers to get her onto the commode, or I had to get my brother, my son & son in law to do it. I was lucky that there carers turned up double handed as they had someone else who needed 2 carers on the round, I told them I was struggling & asked them for advice, they recommended dialing 999 as she was unsafe to be at home. Think long & hard if you can manage, it's not just during the day, what if she needs the toilet in the night, if she is downstairs would your dad hear her or if he didn't & she had a fall there is potential she could be on the floor all night.

My 90 year old Mum recently died on palliative/end of life care after 3 years in a Care Home. They kept her very comfortable once she stopped wanting to eat and she was very well sedated by the drug regime. She passed peacefully after two weeks. Not sure home is the best environment for this. A hospice or nursing home might be easier on everyone.
Best wishes.

Great advice here . My stepdad was in a respite home, now back jn his house. Mum his sole carer, she's 84, he's 97. It's bloody hard on her.
But, the home was awful, it sent me into despair that at 2k a week, it still broke me seeing him in there.
It's hard, the whole thing is unbelievably difficult.

Yes. The nursing home will at least offer you a cup of tea when you visit her.

I inspect care agencies and 'all about me' information contained vary wildly in thoroughness. Personally, I'd recommend you do your own so carers really get to know your Mum or, if the care company do it, you ensure input.

Hi op. I am sorry to hear about your mum. I am sharing a link with you I hope this will be helpful. If you give them a call they should be able to answer your questions and help you get things in a sort of order of priorities. They may well be in your mum's area too.
They can also offer support for you..by listening so you can get thoughts out there which can help clear the head for a while.
www.mariecurie.org.uk/information/getting-care

I have just read all the replies since my last post. Thank you all so much for your support. I am sharing the thread with DH, DB and SIL.

Everyone has been really helpful and we are taking in your warnings.

Mum was moved this afternoon to elderly ward. We went to do evening visit. Not happy, like a greenhouse, no air conditioning, but worse no heat mitigation techniques bar 1 fan. Eg tinfoil on windows, windows shut in day, sufficient fans.
Out of hours.
No option to return to AMU.
We were politely assertive.
Got an extra fan, but more importantly got mum on IV drip to keep up fluids. Brought fan from home, using wet paper towels. More bearable now 11pm.
This is wrong ward, wrong level of care.

With info gained from this thread we now have a list of options, a list of questions, and a hope of a plan to get mum moved ASAP to give breathing space for further decisions.

I am staying all night if needed to ensure she gets care needed. I can collapse tomorrow and tag team.

The hospital liaison sorted out everything for my mum - including delivery of hospital bed/commode/slide sheets etc which was all done within 24hrs.

Get a ReSPECT form completed while your mum is in hospital before coming home. My aunt didn’t and when she died (palliative for 6 months) the family had the added trauma of the police turning up that afternoon to question them…

If you choose a decent nursing home, she will likely get better care there than in an NHS hospital.

It is normal in a nursing home to have an ensuite room. So privacy rather than
curtains round the bed in the NHS.

MN is so supportive.
People who just look at AIBU don't get the right feel at all .

I suspect with a full time live in carer and enough funds that paying for extra care, assistance etc isn't an issue, it'll be very different from the situation many of us faced.

I'm fortunate to have not faced this yet with a parent, but I helped nurse several family members in their last week's as a teenager, just being an extra pair of hands. It's tough, time and day and night lose all meaning, but I didn't regret it. Albeit I know I didn't have the main burden of care, which would have been harder.

Most people trying to care for a loved one at home don't have r the resources for extra carers, so undertake a lot of the care themselves, which is absolutely exhausting, and can sometimes mean the dying person is without adequate painkillers or assistance until the next carers visit.

Your mum won't be in that situation at least, so it'll be different.

Best of luck down this incredibly difficult road.

@Hohumbrumbrum We do really appreciate how fortunate we are to have the choice of paying for care.

My dad passed two weeks ago in hospital, in a fantastic ward. But before he deteriorated the plan was palliative care at home with carers 4x day, under CHC already in place.

we were so pleased in the end that didn’t happen, as the last few days it was hard to know what to expect. We had nurses and doctors available and advising.

for us, palliative care would have been a combination of district nurses daily, hospice at home advising and carers. We’d moved furniture to accommodate a downstairs bed in an already heavily adapted house.

if you have 24 hour care in place plus nursing support it might be manageable. But if bedbound you’ll need two carers for personal care. You need someone to decide when to administer end of life drugs, and confident they’ll attend when needed.

best wishes it is not an easy time x

I'm sorry you are going through this. We've just been through it and I can't recommend care at home. It's an absolutely awful situation for the family. Brutal. It's left me saying I'd go into a nursing home and a hospice if it happened to me.

If funds are no issue find a nice nursing home.

In addition to recent cancer death we also cared for an elderly relative at home with a round the clock care team which was better because she didn't have cancer and wasn't in horrible pain . She was just elderly infirm incontinent not with it she just faded away very slowly looked after by the carers. It wasn't anywhere near as stressful for the family.

The issue with cancer is it can take a very long time or dependent on what organs its interfering with xUse considerable distress and will be very stressful for your father and other close family as well as being painful and undignified for your mother.

My very fit elderly Mum got seriously ill very quickly with cancer in 2024. I moved in to her house to care for her. District nurses got involved once she was terminal. I contacted social services when she fell once and they got aids installed straight away. District nurses did all the palliative care. Mum died peacefully at home after 3 months. I couldn’t have managed without my daughter to help in the last 2 weeks to turn her etc. Social care could have provided visits up to 4 times a day but it didn’t suit end of life care tbh so we didn’t use them. Hospice beds are like gold dust so that wasn’t an option unfortunately. I was very traumatised by the experience but glad she died at home.

A friend who is a midwife nursed her husband at home as he died from a brain tumour. She said afterwards that she wished she had taken up the offer of a hospice space as then she could have focused on him, his emotional needs and their relationship instead of sorting out laundry and meals.

Mum doesn't have cancer. She is currently pain free. But she struggles with breathing, swallowing, getting in enough food and drink, and now not mobile. But cognitively good, we were talking about the tennis again, hoping for the Fery v djokovich (sp) in the final

I couldn't get out of the hospital last night as entrance doors weren't doing their automatic thing. Eventually found a cleaner who said look for a green button. Found it in a hole in a hoarding, hiding because they are doing works.

Then my car was saying door open but I couldn't sort out which so opened and closed all.

Then I couldn't get out of car park due to different works, ended up going out entrance ignoring signs as no other traffic.

Then to top it all when I got back to parents house I couldn't get in as someone had bolted the front door!!!! Phoned live in carer who luckily answered and came down and looked after me.

Have dozed but woken up so distracting myself going off topic.