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Elderly parents

Coming Home to Die

39 replies

Solasum · 24/03/2022 21:38

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.

OP posts:
bloodywhitecat · 24/03/2022 22:19

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.

PurBal · 24/03/2022 22:17

@Hugasauras this is lovely

Dontfuckingsaycheese · 24/03/2022 22:15

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 · 24/03/2022 22:15

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.

Hugasauras · 24/03/2022 22:14

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.'

Jeffjefftyjeff · 24/03/2022 22:11

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

millytint44 · 24/03/2022 22:10

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

bloodywhitecat · 24/03/2022 22:07

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.

Solasum · 24/03/2022 22:06

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

OP posts:
DaffTheDoggo · 24/03/2022 22:05

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.

Neuronurse · 24/03/2022 22:01

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.
💐

Solasum · 24/03/2022 22:00

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.

OP posts:
GeneLovesJezebel · 24/03/2022 21:52

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 💐

Ilikewinter · 24/03/2022 21:50

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 💐