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.

I am not the best qualified to answer your questions, however, having looked into this for my mum: DO NOT take her home without written confirmation of everyone else's role. If services can get out of paying, they will and you'll be left picking up the pieces in every way.

It is such a difficult time, I am sorry. Are you sure home is best for her? If she's going home to your dad, he's going to be doing a huge amount of the heavy lifting (in both senses) and 2 hours is a very long drive if you get a panicked call. You will end up torn between unwell DD, elderly father, ill mother and then resentful if your brother does not step up.

If you literally just found out mum is near the end, I would suggest you get more information about her condition and any treatment plans and give yourself time to process this before making big decisions.

@MurielTheTerrible
All very good points.
One thought of being at home is it would be easier on dad. He could see mum as and when without the strain of taxis to visit elsewhere. He could do his own routine.

Get referral to Community Palliative Team if she is going home. They will come and assess, can fast track application for CHC if needed, liaise with GP for what prescriptions needed. Supply and administer end of life drugs and are always at the end of the phone. Get a clearance company to move the furniture, Community palliative team in my area have their own OT who will order Hospital bed, equipment etc quickly if you make space. Work with them if you can. Palliative is meant to be 3 -6 months I think, my mum was under them twice as first time she pulled back. continence pads they come from a different team and will be delivered in bulk. We had lots of deliveries and If dad is not able to manage you might need key safe.

Be aware palliative care can last a long time. It doesn't necessarily mean that the end is imminent, it could mean keeping comfortable and I've known that last a surprisingly long time. With a work colleague it was nearly 18 months. Make sure you understand the prognosis is and be prepared for it to last a lot longer.

@B0D Also very helpful.

We have key safe but it will need to be moved if in regular use. Would need people to come and go without doorbells the whole time.

Thank you on timescale.

Community Palliative Team main liaison. Thank you for this info.

@countrygirl99 Thank you on other view on timescale and we should check.

I may not visibly acknowledge every post on the thread but they will all be being read and very much appreciated

Sorry you're going through this. You appear to want practical information so I will try to answer practically. Am I too understand mum is currently in a hospital and will be discharged for palliative care?

The first thing to consider is palliative care means different things to different people. Is your mum in her final days or is she still alert/talking/eating and drinking bit ultimately has a condition that can not be medically treated in any other way than getting her home and keeping her comfortable for whatever time she has left? Both of those patients you be considered to be palliative but the timeline and therefore what to expect is different.

The answers somewhat probably depends on area and how things are funded in your area but I'll tell you how things went for us.

1. we had someone come to the house to assess what was needed to get dad home (equipment, hospital bed etc). They said that they could arrange people to help us clear the dining room but actually we did it. It was just quicker.
2. in terms of funding, has an SR1 been completed? This fast tracks applications for certain benefits. Not all benefits are means tested.and you may well find you are entitled to some contributions. Generally though if you were fully self unding you would be funding the personal care. But medical professionals eg district nurses coming in to administration end of life medications when needed is the NHS 3)Once care and equipment in place patients get home straight away. The hospital will arrange a transport ambulance. We found everything happened in a couple of date once the decision was made
3. the all about me tends to be done by the care company.
4. the whole family approach is interesting. We ended up having to transfer to hospice as symptoms could not be controlled at home. At hospice there was absolutely a whole family approach, they really looked after all of us in dad's final days and I am still receiving ongoing support now. At home though I can honestly say that mum and I were not given much support. It's no one's fault, ultimately the nurses were coming in but they had other patients to get too. We weren't the sick ones.. there was the odd nurse that would check in that we were managing but it wasn't usual
5. who is going to look after you: I found nobody did. The final months of dads life involved me trying to work, looks after the kids, liaise with doctors, support mum, provide care for dad which became increasingly hard... It was a treadmill and very traumatic. My personality means I just sort of kept going. We all lived together. McMillan do offer a support phone line for family. I called it once but didn't know what to say so didn't really say anything. Likewise the local hospice has a family support service. I did engage with them after dad died and am still receiving their support now 9 months on. I should have reached out sooner, and that would be my advice really. Ask for the support sooner. Your local hospice will be able to offer this even if mum is not in the hospice.

Again I'm sorry you're going through this. Caring for a parent in their final illness is hard. Hard seems like an understatement to be honest but I can't find a better word. Much love.

Also, contact the local Hospice. Ours have a Hospice at Home service and they have a team who can come and assess needs and get things organised. They can help support you too.

Hospice at home poss best route. They moved furniture for us. Got a hospital bed in downstairs. Were absolutely brilliant. We were in Devon so I’m sure it must vary around the country.

@K10f1 Still eating and drinking a little, watched Arthur Fery tennis with me yesterday. Untreatable but not final days.

@unsync @DoloresDelEriba Hospice. Thank you.

Does she have a spare bedroom and enough funds for a live- in career at some stage? We coped with hourly care visits for a while, but eventually moved to a live in career, which worked well for us. I was a similar distance away from my parents as you are and it helped me a lot. It wasn't cheap, but was less than care home fees for both parents.

Who looks after you? Good question. I was given a 2 hour counselling session under a local authority scheme to care for carers. But otherwise . . .

About three weeks ago, I was told my cancer had returned and metastasised. The oncologist said, as a guess, I could have 6-12 months left. Hospice at Home comes in right at the end for a maximum of 12 weeks. Prior to that, any extra help has to come from Adult Social Care, or obviously I can pay directly for any extra help I need. I already have a care package for an existing disability, so am now waiting for a reassessment.

Gently, I would consider if home is right for her, or indeed for your dad. It sounds like you're looking at weeks -months rather than days. If you can afford to arrange a live in carer so someone is always there then you might be ok, but I would worry about the strain on dad otherwise. Because she will want something doing when there is not a carer there and your dad is going to try and do it. And those something's will get harder and bigger. I was a relatively fit 39 year old woman and my mum was in her 60s, and the physical toll it took on us was hard, and we had each other. Also my dad was a man who would never have wanted to put strain on us, but his illness effected his cognition so he would make completely unreasonable demands without realising it was unreasonable. He had a brain tumour, it was not his fault. But dying itself, regardless of the cause, can cause cognitive issues, so simply relying on "well mum wouldn't ask that if dad" might not be enough.

Remember it can be a dynamic situation, try home if that's what mum and dad want, but if it's not working be prepared to change paths.

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.

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.

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.

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

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.

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.

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.

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.

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 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.