Coming Home to Die

I'm sorry. Take care of yourself and those you love.

Take care of yourself Solasum. I'm less than three months from the death of my lovely mum, and find the grief such a weight some days. Whatever you need to do next, make taking care of you a priority.

Sending you much love and peace at this time OP. Great advice in this thread. 🙏

Lots of love to you all. xx Allow yourself to go slowly and don't feel you have to rush to get everything sorted.

Sending love to you op today and to your family.

Love, peace and strength to you.

Handhold OP, it’s an awful time, you will get through it though, it’s not easy I know.

OP - has your Dad been referred to the hospice? They will have a community team who can offer practical advice at the very least. Has he got a diagnosis?

I've worked in palliative care for a long time and my best advice is to take each day as it comes. Timelines change. Symptoms change. Needs change. There's never a straight line to follow.

I spent 5 days with my terminally ill mum in her home as she was dying 3 weeks ago. My dad is a frail 90 so I needed to care for him as well. What I loved was having her downstairs so we could make dying part of our every day life. We would sit and talk with her and also move to the other end of the living/dining room to eat and watch tv sometimes. It made it feel very natural. The District Nurses and end of life team were amazing. They were as interested in how we were as how mum was doing and gave brilliant hugs. it also felt like a last special gift I could give to my mother. it was demanding but I am so glad I was able to sit with her for these last few days. I didn't have to do any physical nursing thanks to mum's illness - just offer food (whilst she was still eating) water and time.
But what I hadn't expected was how lonely it was. Dad didn't find it comfortable physically or emotionally to sit with mum for long so it was mostly just me. I had a camp bed downstairs so was there when mum called in the night - apart from the penultimate night when we had a night sitter which was awesome. And gave me the rest needed for the last night. mum died in the early hours of the morning so I was up for over 24 hours, which I couldn't have done without the 7 hours unbroken sleep the night before. Apart from mum's last hour, that last night I was on my own with her - I sensed that she was coming near the end and was sat up with her - and the last few hours were not easy. Sometimes when a body is shutting down, although a person is not in pain they can be quite noisy and I found that hard going on my own. You may not know when the end is coming but it helps to have more than one person there I think, for the sake of the living as much as the dying.
It took a while for the nurses to come to declare the death and by that time it was dawn and the birds were singing which was absolutely lovely. They spoke to her, tidied her up and seeing the care they gave was really beautiful.
it did take almost 3 weeks for them to come for the hospital bed and I am very glad there was space in the garage for it. I think it would have been unbearable to look at it all that time

My one bit of advice is make sure he has a visit from the GP when he's in his last days/hours. It massively helps the admin after death. The district nurses told me it was time for a visit from the GP, he visited and mum died 2 hours later.

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.

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.

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.

#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.

[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

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

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.

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.

@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).