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

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

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…

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 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.

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

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.

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.

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.

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.

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.

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.

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.

I have recent experience. Don't assume anything. Just because a hospital has a policy doesn't mean it's actually adhered to or that ward staff know how it works. Palliative care should be paid by the NHS under their CHC initiative. In our case the actual nursing care was provided by a local hospice (24 hour helpline) with carers coming in 4 times a day. Palliative care at home is not an easy option, it's a massive responsibility. Who looks after the carers? No one.

My mum died in a hospice of cancer but she was much younger and compos mentis until near the end so clear on her own wishes. if you can get hospice care I highly recommend it.

In the week before she went into the hospice and we were caring for her at home it was very hard. She was referred to ‘hospice at home care’ so we had the Macmillan nurse, GP, district nurses and carers but there were long stretches especially at night where it was just the family with a phone line to call and we found it hard to cope. Things crop up and you don’t know what to do; she got stuck on the toilet, then couldn’t move in bed, was in pain and breathing distress and confused and we didn’t know how to help her. It was a huge relief to all
of us, especially her, when the place came up in the hospice. I think she felt safe and relieved there and she died 48 hours later with all her family around her. My personal perspective is that dying at home is not all it’s cracked up to be but appreciate with much older frailer parents the weigh up might be different.

In terms of if anyone will help you probably not much. Dad was offered bereavement counselling by the hospice though which was lovely. I cannot praise them enough they were amazing all round.

A lot of things we had to organise ourselves certainly furniture moving etc although the district nurse supplied a hospital bed, commode etc. Liaising between different people was on me and sibs too. I took time off work and went to stay with my parents (4h away) and my DH held the fort at home. My siblings came to stay too and we managed between us. I think it was less than 2 weeks so just put everything else on hold which I was lucky to be able to do. It was a strange and painful but very important time in my life.

You need ‘just in case meds at home’ and to know who will give them. Who you should contact (we had a palliative care hotline 24-7).

As I understand it someone dying of old age and dementia it can be more unpredictable than someone dying of cancer and it can drag on or they can rally unexpectedly plus hospices more reluctant to take people in that situation and thus a care home is often considered. I think that should be free with NHS continuing care if it’s for palliative care. Less sure about whether palliative care at home is entirely free but I think so. I think my mums was. My granny died aged 96 of dementia in a care home and she was in a palliative phase not eating and drinking for much longer which was very rough on my dad especially.

I've sadly had to do this for my mum who died on 26th June.
She had an advance directive stating she wished to die at home in her own bed
She said a couple of months beforehand that she felt she was approaching end of life and the GP arranged just in case end of life drugs to be kept at home. She already had district nurses visiting every other day to dress a leg injury she had.
She gradually declined but managed to get up and dressed and ready for bed herself until the last couple of weeks when she needed help.
She stopped eating and just drank tiny amounts up to the last week. She was placed on a morphine driver for the last week the district nurses visited twice daily to change and do morphine , she needed breakthrough morphine to even touch her.
The nurses were fantastic, but it was incredibly hard doing this as the only person responsible, my daughter visited during the day, but it was a 24hr job to care for her and I felt broken at the end of it.
You need someone simply to offload to at times, and a wonderful nurse would sometimes visit during the night to administer drugs and she would spend a few minutes just sitting with me and giving me a lovely motherly hug.
A hospital bed would have made things easier, but don't underestimate how traumatic it can be.

I wouldn't not have done it for mum, but I'd struggle to do it again for anyone I think, it takes quite a toll and afterwards you're left with all the arrangements etc.

So sorry OP. Having been through this with my DM who was in her 60s, I would suggest considering carefully if your DF is going to manage for what could be a considerable time, both physically and emotionally.

My siblings and I all live within an hour and it was summer holidays so two of us off work but even so it was extremely difficult managing everything including care visits, my dad.

Practically, we found her GP was really helpful with getting an end of life plan in place. We had equipment in the home, visits from carers.

But it was times like needing to provide toilet assistance, changing bed with a bed bound patient, sorting out pain relief at 3am that were tough and these were things we hadn’t really thought about.

All the best to you and your family.

We cared for my dad at home in his final weeks and it was exhausting. I’d say the last six weeks he was completely bed bound and incontinent. He had cancer so the hospice arranged and paid for a lot of care. He had someone come and sit with him all night. We had to care for him in the day however two carers were sent I think 3x a day to change inco pads and check on him. Then a nurse came twice a day for the morphine pump. Without that level of help it would have been nearly impossible.

Thinking of you.

Just to add, to the question who is going to look after you - the honest answer is no-one. You have to look after yourself and this is another reason why a nursing home may be better.

I’m sorry for what you’re going through. I know it’s tough.

IME doctors can say it’s not safe for someone to come home even if it’s palliative. I have to say, 24 hour care in a nursing home may be easier on everyone. You can be there as much or as little as you want but there will be much needed help on hand. This can be especially needed/comforting at the end.

if your mum does come home, I agree with an earlier PP that it can take time as you should NOT let her come home until you have a care package in place and written agreement about this.

best wishes OP

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 terms of clearing space at home for equipment, hospital bed etc, that is for family toorganise as soon as possible so the equipment delivery can be requested.
In terms of support for you and your dad,most areas have an organisation to support carers. Normally called things like Carers Support, Care for Carers, Carers hub.
I think if she is not actively End of life care and her pain is well managed then it will be easier for your dad To have her at home as you say.

Is it really going to be easier on your dad? Yes, it will mean he doesn’t have to travel to visit her but having her at home will in essence mean he is “on duty” 24 hours a day.