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

Best wishes to your family. Take care

Best wishes to your family. Take care

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.

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.

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.

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.

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.

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.

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

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.

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!

Sending

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.

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.

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.

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 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 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.

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