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Elderly parents

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

65 replies

TeenToTwenties · 09/07/2026 04:45

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.

OP posts:
PineappleCoconut · 10/07/2026 03:34

Sending Flowers

Does the live in carer you currently have have experience with palliative care at home in the UK?

DF’s arranged an awful lot, and confidently badgered the GP surgery to provide many items he needed, some of which they’d refused to prescribe before, telling me to buy - both before he needed palliative care and after.
Including ensures drinks, inco pants & pads, barrier creams and dressings before, then later drinks thickeners, sliding sheets etc.

She also pushed for his GP to do a home visit, week before he died, so that he could sign the death certificate. I think she said it needed to be done within his last month/weeks? or he’d need the coroner report- I don’t recall exactly but she was quite forceful in getting that home visit.

Existing carer and I filled the ‘all about me’ form for new live in carers.

We arranged hospital discharge with help from PALs - were some hospital issues before his discharge. We had a bed arrive the morning after discharge agreed. His transport took a little longer, I later found out I could have paid for private ambulance service to get him home faster.

Bed was arranged and installed, very quickly, nurses brought EOL drugs, and we bought everything else we needed like over bed table, bed bath necessities, quick dry bedding, baby monitor, sippy cups . It was a few years ago, I remember being frequently dispatched to nearest large supermarket with a random list of things.

We moved his furniture to the garage before bed arrived to make room, friends helped.

It was the GP surgery social prescriber who arranged CHC funding for a second live in carer.

Once approved CHC covered the cost of certainly one, IIRC both, live in carers, for his final days. But it took about 4 months with much chasing to be reimbursed those costs. So keep all carer bills filed well & scanned, they requested them many times despite approving the costs the day after his hospital discharge. Social Presciber also filled in Attendance Allowance change to overnight care rate form.
While in the end DF and I could afford his EOL care, we had no idea how long it could take, and the costs mounted very quickly. So even if you say you fortunately don’t need it now, ask someone to fill in the forms for you - ask the hospital to help?

District nurses were already attending regularly for home blood tests and dressing changes before his last hospital admission so we knew them well. They administered the drugs he needed, sometimes appeared randomly, latterly had to be called.

Unfortunately we and his carers never pushed for a morphine driver or similar, I didn’t know to ask, in the end the EOL drug bag was never used, but we did have to wait for DNs to come out when he was agitated, usually in the early hours, and needed more medication. Which was a shame, and distressing to watch whilst waiting. Perhaps it wouldn’t have helped, he did have a habit of pulling off wires and IVs when confused in hospital.

It was mostly his two carers, I would go home at night, and often be summoned back in the small hours. Occasionally other family visited, and sometimes I got another agency carer into help for an hour so we could all have a break.

As for help for family, I cried on my/his GP and his Social Presciber rather a lot, during and after his last hospital admission, and was prescribed anti depressants. I arranged and paid my own, very necessary, therapist. The last hospital stay was traumatic, for me and him, for many reasons.

My essay makes it sound like my DF was home for months. I think it was less than a month. He rallied a couple of times. We had family members fly in to see him and say goodbye. He sat up one day and requested a beer. We watched some tennis, listened to music, had cats visiting. And other days I helped change his inco pads, while he just moaned and tried to hit me. It was exhausting, but I’m glad I made him as happy and comfortable as possible.

At the time I hadn’t been to a hospice, have since to visit a good friend, and I think I would prefer one for me if needed. I wouldn’t want my DH or children to care for me in the same way. Plus the drugs. He should have had more when needed and I do regret that.

Whatever you and your family decide, I wish you strength and peace. There isn’t an easy way, you just try to make it easier. Flowers

Cheese55 · 10/07/2026 06:16

Soontobe60 · 09/07/2026 06:42

How frail is your DM? Does she need continence care? Is your DF able to physically meet her needs? The fact that you’re 2 hours away means that in reality all the day to day care will fall on your DF, and that’s a big ask at his age. So you may want at home care, but is that feasible?
A friend of mine supports patients who have been sent home on palliative care and are near end of life. It’s bloody hard work for all concerned. Support services are stretched to the limit. Speak to the Macmillan team who will know what support is available in your area and timescales involved - this is different in different areas across the UK. As others have said, try to make sure all support is in place before your DM comes home.

In my L A , home carers can manage personal care, it will not be down to the husband to do this. Its a fairly standard request and yes to PP who say palliative does not mean E of L . Its also a myth that LA will try and family to do everything but you will have to move furniture!

MontyDonsBlueScarf · 10/07/2026 06:27

As others have said, the palliative care team is key, not just in providing care but in communicating and coordinating all the other things you need. There's a lot of kit that can be very helpful but as it's quite specialised you may not even know it exists so you're not in a position to ask for it. Get a referral as soon as you can,

When my DH was ill he jokingly described my role as 'project manager'. The people in the NHS are great but they are hamstrung by antiquated systems and structures. There is a real need for someone to make sure that everyone knows what everyone else is doing and nothing slips down the cracks. For example I would often pass on information from the consultant to the GP, the GP was always grateful as it took forever to arrive via the official channels.

In practical terms I recommend that you get a hard backed notebook and write down every conversation with everyone together with any action promised and what to do if it doesn't happen. You think you'll remember but you probably won't.

My top tip for right now is not to accept a discharge until you actually have all the equipment, referrals etc that you need. They need her bed and they will focus on whatever they need to do to release it. Once she is discharged they won't be on the case with the same urgency and you can be left waiting days for something you really need.

Good luck, it can work well for everyone with the right support but sadly that doesn't always arrive automatically.

thejelliclecats · 10/07/2026 06:56

We went through this a few years ago with MIL and I would honestly suggest not having her at home.

TeenToTwenties · 10/07/2026 14:21

Thank you all again.
Have moved mum to private wing in hospital (apparently any profits go back to nhs which is nice).
We have breathing space now.

OP posts:
Iamthemoom · 10/07/2026 14:29

Sorry you’re going through this.

Having done both I would opt for hospice every time but the hospice was lovely, very caring staff, beautiful environment and very close to my house.

I would visit the alternative options first. Then decide. If hospital or care home was the only option I’d choose home.

In my experience of caring at home no one ‘cared for me’, family organised the space, we got almost no help until final week when we had help from hospice at home.

Randomchat · 10/07/2026 14:48

My mother-in-law died at home with live in care and we wouldn't have managed without them. I'm glad you have that in place.

Fil wouldn't have been able to cope with the stress of being the only person in the house with her. He spent lots of time sitting by her bed and that was better for him than if she had been in hospital. They watched lots of tv, read the newspaper, sat together in a familier place. But he panicked whenever anything happened- if her breathing sounded hard, if she called out, if she woke up and was muddled. He really needed someone else in the house the whole time.

We didn't have waking overnight care but towards the end the carers did take turns with us to stay with her. Which was above and beyond. We were very lucky. We had had the same carers on rotation for a long time so they really knew and cared for her. And were comfortable around death. Not every carer is so maybe make the situation clear to any new carers so they can withdraw if they're not the right person for the time.

We had mostly good support from community nurses and doctors but like anything it's a bit hit and miss. If they're urgently busy with someone else they can't urgently come to you. So just be aware of that closer to the end.

No-one really looks out for you I'm afraid. Line up some understanding friends and lean on them. Or talk to us. Lots of us have been there unfortunately.

Tiredandannoyed2023 · 10/07/2026 14:57

Sorry you’re going through this experience. Ageing parents plus other family commitments is really tough.

I work in community palliative care. The main people in support at home will be your mum’s GP, district nurses if she has nursing needs and social services. Specialist palliative care has strict criteria for accepting referrals so that’s not an inevitable source of support.

InQuiresandplaceswheretheysing · 10/07/2026 15:09

I think your ‘fit’ 96 year old dad is really, really going to struggle with having your mum at home for palliative care. Especially if you and your brother are not close by.

TeenToTwenties · 10/07/2026 19:30

InQuiresandplaceswheretheysing · 10/07/2026 15:09

I think your ‘fit’ 96 year old dad is really, really going to struggle with having your mum at home for palliative care. Especially if you and your brother are not close by.

The more I find out the more I agree with this opinion.
I think it is off the option list.

OP posts:
TeenToTwenties · 11/07/2026 08:08

UPDATE

Care at home totally ruled out.

Thank you everyone

OP posts:
MontyDonsBlueScarf · 11/07/2026 11:15

Thank you for taking the time to update us.

Just wanted to say don't be tempted to beat yourself up for not being able to comply with your mum's wishes. Both my parents, and my DH, wanted to stay at home, but there came a point when they realised that they would be more comfortable in a care setting. When you're well or even when you're quite poorly, it's hard to imagine what it's like to be very poorly indeed and the level of care you might need then, so I suspect that changing your mind is quite common.

Thinking of you and sending love.

Stickytreacle · 11/07/2026 11:37

I think that's a sensible decision under the circumstances. Sending you all my thoughts and I hope everything turns out as well as can be expected for all of you.

Randomchat · 11/07/2026 16:07

Best wishes to your family. Take care

Randomchat · 11/07/2026 16:07

Best wishes to your family. Take care

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