Nearly the end. What will it be like? My OH.

[earlystreetlight]

NCFT. My DH has terminal cancer. He is having end of life care at home.

We have a hospital bed, Marie Curie carers and a Distrct Nurse and a Pallative Care Nurse visiting. He has a syringe drive for his medication. He is having morphine, anti sickness, anti mucus medication. I feel very grateful for the help we are receiving.

The end is near now. He hasn't eaten for a week or so and is refusing drinks now.

Since yesterday it has been hard to understand what he is saying. His breathing is laboured. He keeps reaching out with his hands. I am lying next to him and he mumbles but I can't make it out.

Can you tell me about the end of life?

Hi OP, I'm very sorry that this is happening to you and your OH
I'm not an expert, so can't really give you any advice. It does sound as though the end is near though.
I'm sure someone with more knowledge will be along to talk to you soon.

Sorry you're going through this OP. It sounds very similar to my parents last days.

It was exactly as you described, they spent about a week very minimally conscious, occasionally murmuring, but very peaceful. Occasionally they would appear lucid for a few seconds and look around the room, maybe say hello. Then back to sleep. We sat with them, held their hand and chatted between us.

It was a very strange time. Almost as though time had lost its meaning. It was peaceful yet exhausting.

Hope you have lots of support

Hi OP.

I'm so sorry you're going through this. It's really awful.

I work in a care home and have seen many people on end of life.

They're not all the same, one persons journey is often different to another's but this is usually what happens.

First they stop eating and can sometimes have loose bowels as the stomach is emptying. Then they stop drinking although this can happen some time after they stop eating, it could be days or even weeks for some people.
After this most people will spend the majority of time asleep. Some become restless but if he has a driver in place then that can help.
Hands and feet go cold first and the skin may start to look a little bit different.
Their breathing changes and they breathe through their mouth rather than their nose. Gradually the breaths become slower and more apart. They may stop breathing for a few seconds and then start again until they stop all together.

Usually it's quite peaceful OP. I know it's hard but often when they have passed they look more at peace and relaxed than they have done for a long time. Especially if they've been ill for a while.

I hope this helps and hope he has a peaceful passing.

Just be there with him, talk to him, tell him you love him, hold his hand, kiss him, don't be afraid. If he gets agitated and is trying to pluck at his clothes or get up, ask the nurse to come- he may need extra medication. I went through this with my wife just over a year ago, supported by hospice nurses at home, it does sound as if your DH is near the end. Sending you love, peace, courage

So sorry you are going through this.
My dad passed away from cancer a couple of years ago. The last few days were as you described. He did get agitated towards the very end which the nurses had warned us to expect, but the end was a very gradual lessening of breathing, until he had gone.
I think he could hear us so do keep talking to your DH, reassuring him of your love.
💐 for you.

Don’t try and work out what he’s saying by asking him, just smile and agree with him.
Hold his hands to comfort him.
Just let him know you are there, and that he’s not alone 💐

So sorry you are going through this. I was with my dad when when he died from cancer. I held his hand. He looked so at peace after he passed. .finally free of pain.

There is a podcast -Conversations with Annalisa Barbieri - that has an interview with Dr Kathryn Mannix, a palliative care consultant. The episode is called ‘what to expect when someone is dying’.
I found it a very comforting listen and have since bought Dr Mannix’s book (‘With the End in Mind’).
Thinking of you.

So sorry to hear you are going through this. My DH died at home from cancer. We had a Macmillan nurse who was very helpful.
I wanted to know how details such as how long he would live snd she could explain the process to me.
My DH was young and she said because his heart was healthy it would take time.
I needed to know what was happening.
Ask your nurse as they will notice the changes in your DH body, such as fingernails losing colour etc
Sending you strength xx

Both of my parents died back in May and @AtTheWinchester’s description is just how my dad went. Gradually, over the course of a week. Mum went very suddenly in the space of half an hour, but I remember her breathing changing as described.

I’m standing with you through this one. It was the hardest thing I’ve ever done and my heart goes out to you having to bear this.

With my Mum, they told us she would probably go in a few hours. She was asleep, and “fine”, and then her breathing very noticeably changed quite abruptly, really, and got shallower and more rattley, and over the course of 5 or 10 minutes it just petered out. As it happened, there were a few of us there with her.

It was very peaceful. She was on a lot of morphine though.

I’m sorry you are going through this.

I'm very sorry to hear this.

I can't find the quote right now but I read something the other day written by a 'death doula' who helps people around death, saying that in the moment someone dies to take some time, don't rush to report the death/call an ambulance or go into 'doing things' mode. Just sit, maybe have a cup of tea, be with the person and feel the time of them leaving and let it sink in before you do anything. That seemed like a really good way of looking at things that might help when the time comes.

Sending you both lots of support.

Also so very sorry. It must be so hard for you
My mum spent about 4 days 'actively' dying. On the Tuesday she stopped engaging with us and just slept, really peacefully it seemed, and I just sat with her and chatted while she lay there. It was Friday, after I had visited (she was in a care home) that she just slipped away without really being noticed.

I hope he goes in a peaceful way knowing he's loved by you

Here is the post a PP mentioned, my friend just shared it on Facebook. Hope it helps OP, such a sad time for you x

✨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 911, 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.

Credit for the beautiful words ~ Sarah Kerr, Ritual Healing Practitioner and Death Doula , Death doula
Her original video link is here ~

Beautiful art by Columbus Community Deathcare

#alwayswithlove #dying #death

DH went down hill very quickly, all set up for it at home but he ended up in hospital and then a hospice, went in at 10pm and died at 8.30 the next morning. The nurses sedated him and very very slowly his breathing slowed down until he just stopped. It was all incredibly peaceful.

I’m so sorry your going through this. I work with palliative patients and what other posters have said above should help you with preparing. I read the same post that @Echobelly refers too and it’s so true. Once he has passed take the time of that moment. The following week or so will be so busy and you won’t get a lot of time to just be. I always like to open a window after patients have passed to allow their spirit a pathway. Probably silly but I most of us do it.

I am sorry for your double loss weaselwords and for everyone else on here who has lost someone close

Op I hope your dh's passing is as peaceful as possible and that you have some rl support. When my friend died of cancer, he was a little agitated at the end, and they told us that if they upped the morphine he would probably slip away, which is what happened. It was all done with the agreement of his next of kin.

@TooMinty thank you for your post- I'm crying because I so wish I'd read this before my wife died at home just over a year ago. She came home from hospital and went very quickly just 48 hours later and it was all a bit panicky and I was scared as she had difficult symptoms that the hospice at home team struggled to get on top of, and I wish I had just sat with her for longer after the struggle was over. She radiated peace in that moment. Her pain was over. She was free. I thought I had to get the nurses to come straight away- I was frantically calling them to come. But there truly was no urgency. And they couldn't come for about half an hour, and in that time I did calm down, I did hold her, I cried, I let go. It's an incredible time and space. So important. We should be educated about it.

AttheWinchester has it to a T.
My dad passed at at home at 1.54am on the 22nd May 2020, he had a Dementia/Alzheimer's dx, plus pulmonary fibrosis of the lungs and a couple of other things going on.
My sister and I were taking it in terms to stay over night, to keep mum company, I was there that morning he passed.

They're not all the same, one persons journey is often different to another's but this is usually what happens.

First they stop eating and can sometimes have loose bowels as the stomach is emptying. Then they stop drinking although this can happen some time after they stop eating, it could be days or even weeks for some people.
After this most people will spend the majority of time asleep. Some become restless but if he has a driver in place then that can help.
Hands and feet go cold first and the skin may start to look a little bit different.
Their breathing changes and they breathe through their mouth rather than their nose. Gradually the breaths become slower and more apart. They may stop breathing for a few seconds and then start again until they stop all together.

Usually it's quite peaceful OP. I know it's hard but often when they have passed they look more at peace and relaxed than they have done for a long time. Especially if they've been ill for a while.

So sorry to hear OP.

My wonderful Dad died in December last year from terminal cancer. Although he was in hospital on a CV19 ward (he caught it in hospital) they did let me in for his last evening). I just sat with him and told him I loved him and talked to him about stuff we done (his grandkids, stream trains, farming -all our nice memories). I held his hand, stroked his arm. He was very peaceful at the end. I just made him comfortable and he drifted off. After I'd be there about 6 hours he had settled down, I was holding his hand and I realised he had gone and stopped breathing. For him there was no struggle to breathe at the end no panic, just like he went to sleep and it got deeper until he passed. I asked the nurse to check and she confirmed.

I took a picture of just our hands - mine holding his (not his face or anything). I hope it's peaceful for you all as well OP.

Toominty, thank you for sharing that.... it is beautifully written and so true. When my brother died I found it an incredibly humbling experience to be with him on his last days. Everything else is stripped away. We held his hand, sang to him, talked to him, played his favourite music. Sometimes when we thought he wasn't hearing, he would suddenly hum along or smile. I had more quality time with him in the last 2 weeks than I had had in the previous 10 years probably and it was previous and heartbreaking in equal measures.
OP, just talk to him and hold his hand and remind him of the happy times you have had. Don't be surprised if he chooses to leave at a moment when you are not there. I have heard that happens a lot. You will notice the breathing change towards the end usually. And when the end comes, do just take the time to absorb that and say goodbye in your own time. Big hugs xxx

Nothing else to add as OPs have covered it all.

Love and thoughts to you xxx

Sending you love and strength OP.

I was with my Dad when he died at home last year. It was so gentle, as if he'd walked through the door into another room.

I was lucky to spend a lot of time with him in his last days and talked with him and stroked his arms.

I found the video on this page incredibly helpful and it took away some of the fear about what would happen.

www.mariecurie.org.uk/help/support/terminal-illness/preparing/what-to-expect

My DH died at home in Jan in a hospital bed on a syringe driver from cancer - from stopping water to the end was 4.5 days. He used to wake and reach out in the night and moan (I slept on the sofa at the side of him) when I woke on the Friday morning his breathing had changed, the district nurse came about 11 and told us it would be that day. He passed that afternoon. ((Unmumsnetly hugs)