Coming Home to Die

[Solasum]

It looks like my elderly father has reached the end of the road treatment wise, and so within a few days we are anticipating that he will be discharged home to let nature take its course, which is estimated will take around 5 days.

Any guidance from anyone who has gone before would be greatly appreciated. Anything we might need/benefit from? Anything we should be thinking about?

We are told that the end of life nursing round him is very good, and will sort painkillers etc.

[Ilikewinter]

Hand hold OP. MIL passed away at home, i think its important to spend time being a daughter and not fall into the trap of being a carer where possible. Be prepared for emotional outbursts due to the strong medication, and your dad will eat and drink less, thats ok, dont feel the need to feed him.
Also have you got a funeral plan in place?, if so have the telephone number to hand, one thing I never thought about was once MIL passed and the doctor had been to certify the death everyone then left ( the carer and the doctor) and DH, SIL and I were left in limbo, we rang the funeral directors who arranged for a private ambulance to come, but that took nearly 3 hours so MIL was laying deceased in the front room. Honestly that was difficult to handle because we had no idea what was going to happen. I hope your dad has a peaceful time a home 💐

[GeneLovesJezebel]

Get some quick to cook/eat food in, take shifts to make sure you eat and sleep, and go with the flow.
I hope it’s painless for all of you 💐

[Solasum]

I don’t think there is a funeral plan. He thought he would live for ever I think. Will try and find the words to raise it with my mum just in case.

[Neuronurse]

Make sure they refer him to the District Nurses. They will offer support to him and the family and also manage EOL symptoms with injectable meds if needed.
Have the discharge team arranged equipment, hospice and DN referrals?? Will you need help with personal care? He could be fast tracked while still in hospital with fully funded care put in place for his return home.
💐

[DaffTheDoggo]

podcasts.apple.com/gb/podcast/conversations-with-annalisa-barbieri/id1567190358?i=1000524036065

I feel like I’m suggesting these podcasts all the time which is a bit embarrassing but this one might be helpful.

[Solasum]

@Neuronurse not yet, but we have been told things will be put in place

[bloodywhitecat]

In the last few days DH stopped eating and drinking, the hospice managed his pain and agitation with a syringe driver and top ups as required, he had a peaceful night on his last night once the medication was correct. Don't be afraid to call for help, call earlier rather than later if you don't have 24 hour nursing support in the home (we didn't, we had to call the hospice and it could take a good 90 minutes for them to get to us). DH's death was peaceful, just me and him. It took the doctor 5 hours to come out and verify his death then DH stayed with us until we were ready to say goodbye, we sat with him, reminiscing and chatting and when we were ready we called for the funeral home to come and get him.

[millytint44]

My mum came home to die on the 11th April. She died on the 16th. We had palliative care district nurse team who were amazing. They sorted a hospital bed and syringe drivers with palliative care drugs. These did help to reduce anxiety and restlessness.

She was quite lucid and in and out of awareness for the first couple of days, when people came to say goodbye. On the 14th and 15th she was pretty much asleep all day. She woke up, bolt upright on the 16th morning, to die. It was one of the most visceral, scary moments of my life. Make sure you have some emotional support.

Much love to you x

[Jeffjefftyjeff]

The Marie Curie website has some useful links and advice www.mariecurie.org.uk/help/support/being-there/end-of-life-preparation/home

[Hugasauras]

No practical advice, OP, but I read this a while ago and it resonated with me.

'Expected Death ~ When someone dies, the first thing to do is nothing. Don't run out and call the nurse. Don't pick up the phone. Take a deep breath and be present to the magnitude of the moment.

There's a grace to being at the bedside of someone you love as they make their transition out of this world. At the moment they take their last breath, there's an incredible sacredness in the space. The veil between the worlds opens.

We're so unprepared and untrained in how to deal with death that sometimes a kind of panic response kicks in. "They're dead!"

We knew they were going to die, so their being dead is not a surprise. It's not a problem to be solved. It's very sad, but it's not cause to panic.

If anything, their death is cause to take a deep breath, to stop, and be really present to what's happening. If you're at home, maybe put on the kettle and make a cup of tea.

Sit at the bedside and just be present to the experience in the room. What's happening for you? What might be happening for them? What other presences are here that might be supporting them on their way? Tune into all the beauty and magic.

Pausing gives your soul a chance to adjust, because no matter how prepared we are, a death is still a shock. If we kick right into "do" mode, and call 999 or call the hospice, we never get a chance to absorb the enormity of the event.

Give yourself five minutes or 10 minutes, or 15 minutes just to be. You'll never get that time back again if you don't take it now.

After that, do the smallest thing you can. Call the one person who needs to be called. Engage whatever systems need to be engaged, but engage them at the very most minimal level. Move really, really, really, slowly, because this is a period where it's easy for body and soul to get separated.

Our bodies can gallop forwards, but sometimes our souls haven't caught up. If you have an opportunity to be quiet and be present, take it. Accept and acclimatize and adjust to what's happening. Then, as the train starts rolling, and all the things that happen after a death kick in, you'll be better prepared.

You won't get a chance to catch your breath later on. You need to do it now.

Being present in the moments after death is an incredible gift to yourself, it's a gift to the people you're with, and it's a gift to the person who's just died. They're just a hair's breadth away. They're just starting their new journey in the world without a body. If you keep a calm space around their body, and in the room, they're launched in a more beautiful way. It's a service to both sides of the veil.'

[PurBal]

I honestly think palliative care is one of the most underrated and important care anyone can ever receive. I agree with PP that he may stop eating and drinking. You may wish to have a wet flannel to moisten his lips if this happens. He may get confused and disoriented so be honest and reassuring. Some people like to be alone when they die, so give him space, leave the room for a bit rather than holding vigil. Would having his “last rites” (in whatever faith) be important to him? If so I’d get onto clergy ASAP and they’ll be able to arrange that (sometimes people of no faith like this too and the local CofE church can advise). I hope your fathers journey is as easy as it can be. My thoughts are with you.

[Dontfuckingsaycheese]

www.bbc.co.uk/programmes/m0011sgf

Have a listen to this I listened just after my ddad died. It includes a beautiful frank explanation of what to expect. I am so sorry you’re going through this x

[PurBal]

@Hugasauras this is lovely

[bloodywhitecat]

I think it was also important that DH knew he could go, the hardest thing I ever did was tell him it was OK to go and see his mum and dad if he was ready. Inside I was screaming "Please don't die" but the words out of my mouth told him it was OK, that I'd be Ok, that I'd make sure the fosterlings were OK. I worked in a children's hospice and saw how important it was to be given permission to go.

[Chickydoo]

@Hugasauras You write beautifully! Your words resonate with me. I was with DM when she died. It was so special and as you say, slowly slowly. It was an honour to be with her while she slipped through the veil. I miss her & think of every day (10 years on).

[Girliefriendlikespuppies]

Check about ordering equipment in such a hospital bed and air mattress (to help prevent pressure sores). Having a hospital bed makes nursing someone who is dying much easier as the beds height can be adjusted. The DNs would be the ones to ask about this.

Also check about just in case medication, this is a supply of the most common meds needed when someone is dying (for things such as pain, nausea or agitation) your Gp can organise that.

Will you need carers or night sitters? Fast track chc may be an option, if they are suitable for this then it means carers and night sitters are paid for by the nhs.

[2bazookas]

To die peacefully in his own home. is the last great love gift from his family. It will comfort you too.

If you can put a bed in a quiet room downstairs with a low window and nice view out, it will be soothing for him and anyone sitting with him. If he likes music, something to play it on.
A very comfortable easy chair for people sitting with him ( possibly all night) and a dim nightlight.
If he has a loved pet, let him have it on the bed. Very comforting.
Waterproof mattress cover under a blanket under the bottom sheet.
If you need extra bedding, borrow from friends/neighbours.

If he no longer wants to eat, don't worry. But your family looking after him do need to eat so make sure there's a steady supply of easy meals, fridge snacks etc.

. If you get offers of help from friends and neighbours, ask them to make soup or a salad or some easy meal to sustain the carers. Whatever help you need and don;t have time for (shopping, laundry, walking the dog, car lifts , washing up ) make a list and when well meaning people offer, give them something to do. Accept any back up support on offer from hospice/community nurses/ GP etc.

IME a dying person may not want conversation or chatter, and gradually withdraws ; let them. Judge for yourself whether they want visitors /friends/family coming, and if they don't, accept that too.

Everything will gently unfold and make itself quite simple and clear.

[catwomando]

@Hugasauras wow. I think your post will stay with me forever. Thankyou.

[Hugasauras]

[quote Chickydoo]@Hugasauras You write beautifully! Your words resonate with me. I was with DM when she died. It was so special and as you say, slowly slowly. It was an honour to be with her while she slipped through the veil. I miss her & think of every day (10 years on).[/quote]
I can't take credit for the words; it was a Facebook post I read and saved in notes form and don't have the original. But I found it somewhat comforting and I glad you had a positive experience in what must have been a very difficult time

[Solasum]

Thank you everyone. Feels like we are properly in limbo here. My mother has spoken to him over last days and has a clear idea of his wishes. Basically as little fuss as possible. Now we just wait.

[SilverViking]

#Hugasauras sums it up beautifully.
It is a great privilege to be able to look after and be with a loved one. The time around death is so precious ... then after they pass, to hold hands and touch them while there is still the last warmth their bodies ... and give in to your emotions .... whether that be tears or quietness or whatever comes naturally - there is no right way to do it for you ... only what you do is right for you. Just being present in the moment.
Also, one thing I would add is that sometimes death can be so quick at the end ... just stopped breathing, you would hardly notice. Don't be hard on yourself if you are not there at the very moment of passing... it can be so easy to have just popped out ... or lay down for a sleep ... or even just gone to the loo. It won't take away from all you have done or being present when you return.

Wishing you all the best and praying for strength for you and your family to manage during this difficult time.

[WhiteXmas21]

Op, so sorry you are facing this, but I really found peace in being with both my parents, at home, for the end.
Previous posters have written beautiful advice. I would just say, I was told by our palliative care team, that Dad could probably still hear us, for a few moments after his heart stopped beating, so to continue to reassure him of our love even after he passed.
It was very peaceful in the end, no doubt due to the drugs, but my family took time to sit , both together and alone, and just talk to dad after he died. There is no rush to get things moving.

[freshcarnation]

Mum died two Monday's ago at home. She was looked after by District Nurses who came in every day, plus a carer plus me. At the end it was all about keeping her comfortable. Electric bed and air mattress were supplied by the district nurse team.

We bought sippy cups and straws and she was able to drink water or milkshakes until the morning of her death. We had the radio or tv on in her room during the day and I massaged her hands with lavender cream which she seemed to like. We didn't sit with her all the time. Obviously we were there for visits, but she slept peacefully when we weren't there and sometimes she was clearly tired of trying to make an effort. So it's ok for your dad to be alone and rest.

At the end mum went quickly, peacefully and not at all distressed.

[Solasum]

So. My father is now at home. And it is considerably longer than 5 days. He is actually pretty well all things considered. Very very very frail. In denial that he is dying it seems. Variable continence. Very very chatty. We have all visited and will do again. He says he feels he is getting stronger. District nurse is coming in daily. Carers will come in due course, but for now it is all on my mother. Really feels like limbo.

[FluffyFluffyClouds]

He's the one person who gets a pass to deny it all he likes, I guess.
I've done the waiting thing and it seems that the timescales you think in shrink.
You don't think about the past much as the comparison is too upsetting, you don't think more than a day or two ahead because you know they only have that tiny future prospect, and you concentrate on the tiny things you can do for them in the here and now, so that the present moments seem to stretch and expand to be almost all you're aware of.
The snapping back to a normal perception of time after their last breath is quite jolting - as well as the brutal impact of their loss, which part of you thought was somehow never quite going to happen after all.