Handhold and questions about dying at home.

[RealHousewifeOfEastLondon]

Hi all. Need a handhold and some advice about something that is worrying me.

My dad is dying. He has been unwell for a while but got diagnosed with pancreatic cancer a few weeks ago and the decline has been very rapid.

He is at home (as he wanted to be) and my mum has amazing support from district nurses, carers and MacMillan.

He hasn’t eaten in a few weeks, about ten days ago he was having an Ensure drink or a bite of a sandwich. He hasn’t drunk in nearly a week, we have been wetting his mouth for comfort and he is still urinating. He has a syringe driver and is peaceful. I know that he doesn’t have long.

I desperately want to be with him and my mum when the time comes, but I have small children and am trying to juggle caring for them and being there with my dad. I have very little support outside my husband who works nights but can come home if needed and is doing what he can.

I have read a lot about what happens at the end and feel as prepared as I can be. I also know that people go when they are ready and am trying to accept that I might not be with him.

What I do want to know is how soon after someone dies at home does the body get collected? I am sorry if this is upsetting or makes me sound strange, but if he passes when I am not there I want to go to see him to say goodbye and be there with my mum when he leaves the house. But I am worried I won’t get there in time.

Any advice welcome please xxx

please be aware that the death rattle will not be uncomfortable for your dad or hurting him in any way.

sit and hold your dads hand and stroke his skin, keep talking to him and your mum. Play nice music that your dad enjoyed

My mum died last week of cancer at a hospice. She made the decision to go in but also had everything at home including hospice at home care.

She actually went quicker in the end than had been expected which was a relief for her. You're right it's so horrid to watch and I found that harder to cope with than her eventual death.

If you have hospice at home or cancer support through macmillan than they have fantastic services to support you and advise. Also they are great just to talk through your thoughts with.

Also just be aware that after they pass away getting the death certificate and registering it can take over a week. This means it can be 2 weeks (at least) before your able to hold a funeral service.

Just take care of yourself. I suffered burnout afterwards as hasn't realised how much the last 5 weeks when she went downhill had drained me.

The death rattle has stopped. Is that the injection or can it stop and start? Does it mean we have longer?

the injection dries up any secretions and saliva which people cannot swallow or cough themselves, the rattle can also stop when someone changes their position.

My beautiful dad died of pancreatic cancer eleven days ago. The end was hard but he was at home which he wanted. The terrible thing was my mum finding him in the morning which must have been awful for her.

The doctor came and then the undertaker that evening. My parents live in France and the funeral was Monday.

It's a cruel end and I'm sorry your father has it too.

Dad was having daily nurse visits at the end but was very confused. He was bleeding a lot too. It's a strange feeling as I was desperate for him to die and be no longer in pain but once he died there was this huge void and I keep wishing my Dad was still here.

I feel very guilty about not being there when he died. My brother was there though and as I don't drive I would have probably just been in the way.

Your undertaker will take your lead, when you phone up to notify them you can specify when you want your dad collecting.

It is entirely up to you if you want to be in the room while the undertakers work or be in a different room.

I am an undertaker and have had many different requests from families. One particular collection that stays in my mind the family stayed in the kitchen while the house pets popped in and out. One cat stayed under our stretcher the whole time almost as if it was standing guard.

I am so sorry you find yourself in this awful position

DH died recently, at home, with bile duct cancer. He died at 5.25am and we called the hospice to come and verify but they couldn't so we had to call 111 to get a doctor to come and do it. The doctor arrived at about 10.30am and verified. I then called the funeral director who took a few details and asked me if we wanted them to come straight away or did we want to wait (we did, DH's DD hadn't arrived by that point and she wanted to see her dad), we then called back later that afternoon when we were all ready. We (me and his DD) stayed with DH while they got DH ready to go, they treated him with such kindness and respect, they spoke to him as they moved him and made a difficult thing so much easier to bear. Once DH was in the ambulance our little fosterling was able to come and wave goodbye which I think helped him to understand a little of what was happening. IME the funeral directors will be led entirely by what the family want if at all possible.

Bless you, @RealHousewifeOfEastLondon (I hope you don't mind me saying that).
The real answer is that nobody here can tell you. My DDad passed away around 24 hours after stridor (the awful noise made when breathing) started, but his case had other factors going on - they're not relevant here and are upsetting). He had pancreatic cancer too.
It's a horrible time. But, your DDad will not really be aware of what's going on. That's due to the syringe driver which will keep him comfortable, as awful as the situation is for you.
I would say you're looking at hours / days rather than weeks. I'm sorry I can't give you a better answer (maybe someone else here can), but you truly have my sympathy.

@bloodywhitecat, ((hugs)). I know what you've been through.

I’m so sorry OP. I lost my daddy to pancreatic cancer too. Hold his hand and tell him you love him.

My dad took a surprisingly long time to let go, so don’t be surprised if this lasts a while. Let yourself have some sleep too. We had some lovely nurses with us (private agency) who talked us through what was happening. It also helped that my DM had nursed many dying people so also knew what to expect.

My husband died at home, with just me and our daughters with him. I'd promised him that. It was a lot less scary than I expected. His breathing just got slower, and then we saw the color of his arms change as the blood flow changed. And then he just didn't breathe again. It was very peaceful.

I called the GP surgery, they were very kind, and a lovely GP came out and certified him. Our district nurses then came and laid him out. The funeral director would have come for him whenever we wanted. I copied by being in efficient mode, so asked them to come within a couple of hours. I have a bit of regret about that, but I recognise that you deal with things in the best way you can at the time.

Wishing him, and you, a peaceful passing and vigil.

Dad is still here, hanging on.

Thinking of you. My Dad died when he was on his own - I’d flown home (I live abroad), my Gran, two uncles and aunts were there and people had been popping in to see him all day. They finally went, my Mum and I popped in to see him and he was asleep. I said “Let’s have a cup of tea and order a takeaway.” I poured the tea, went in to check on him and he had gone. We called the funeral director, who came out in a couple of hours, as we asked. He looked very peaceful at the end.

RealHousewifeOfEastLondon

my thoughts are with you, hoping for you it won’t be a long passing.

im sure having his daughter and wife beside him must be such a comfort, hearing is that last sense, so hearing your voices even if not consciously knowing the words will be helpful

Slightly different situation for me as my dad was in hospital at the end of his life. He too was on a syringe driver and seemed to be hanging on. My mum stayed with him the whole time and when she couldn't be there (needing time to eat/ shower etc) I made sure I was with him. Do keep talking to him. He may be waiting for permission to go. I was the only one there with my dad at the end. My mum had gone for some fresh air with my brother and my son, who was only 4 at the time, so my husband could come and see him. I told dad where mum was and his breathing changed and I knew it was time. I sent my husband to go and get mum but she didn't get back before he had gone. I guess it was the right time for him. Wishing you lots of love and strength at a very sad time x

im sure those dying decide who they want with them, they know who can cope with the final moments on their journey and what’s right for them

I'm sorry about your dad RealHousewifeOfEastLondon & wishing you all the best at this time.

When my DH died at home and I called the funeral director (who was a work contact of both of us) ge asked if I wanted them to collect DH immediately or whether I wanted some time with him. My boys were at school and I wanted to give them the opportunity of seeing him (their choice and with the house layout they didn't have to if they didn't want to) and so arranged a time a few hours later for the funeral director to come.

I saw this on MN a couple of weeks ago and saved it.

What to do when someone dies.

'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 breath 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.'

Holding your hand OP.

Can you play music for your Dad?

And yes, call the undertakers when the time comes, but you can ask for them to come at whatever time feels right.

If there is a carer they might help you dress him in clothes that feel most like him. You can choose items to tuck into his pockets to send him off with.

Hand hold and hugs.

Wishing you all the best OP, I lost my DDad to PC last October it's a horrible sneaky illness - he died 12 days after he was diagnosed. Peacefully if that helps you. He waited till my brother got there and took his last breath seconds later. Nothing to add to what you do once he's gone, others have covered that.

My thought are with you op.
I hope the next few hours and days are as calm as they can be for you.

When MIL was dying there were 4 of us around her bed. Me, DH, a nephew and BIL. BIL had driven down from Scotland and had literally just arrived. We were taking it I turns to talk to her. I said " Bob's (BIL) here now Maureen" (not their real names)" .Her eyes had been closed most of the day , but she opened them; looked at him and died. The only thing that we weren't prepared for was her dying with her eyes open. BIL, gently closed them. The McMillan nurses arrived minutes later to do their routine stuff so they phoned the gp and DH his 2 DSIS.

Op, we were in a very similar position and it was a privilege to be with dad at home when he passed.

We chose to have some tea, sat with dad and just chatted and had peaceful time before we called the undertakers to collect him. We called the nurses immediately so they could issue the intermin death cert, but we spent about 4 hours with dad before calling the undertaker. It was a peaceful time and we were glad we did that

OP, talk to your dad, tell him you love him, and tell him if he is ready then he can go. I do believe that sometimes people hold on because they are thinking of they people they will be leaving.

Thinking of you .