Sensitive but if you can share your experiences of death.

[Theas18]

Mum is dying slowly. It's obvious. From managing a shower yesterday am to sleeping all the time now ( with some fidgeting fiddling with oxygen etc. )

I guess this is as good as it can be. She's home. I'm here.

So sorry Theas

My father died in a hospice. He was a fit and sprightly 78 year old and had a funny turn one day. Within a week we had a terminal diagnosis, he had extensive cancer. My Dsis is medical and we knew it would be weeks rather than months but the speed of deterioration was a shock.
Dad was philosophical about it. He knew what was coming and while he could he talked to us a lot. I heard stories I'd never heard before.
He had been a volunteer at the Hospice for 10 years and was known and loved by all the staff. Within 3 weeks of diagnosis he went in for a break but he never came home.
My mother was difficult. The shock was so much for her that her way of handling it was to dress in her best finery as though she was going somewhere special and pop in to see him very briefly. Sis and I had to take turns really with her and dad.
For a week he was still able to converse and enjoy food. He became immobile and bed bound very quickly.Then as the end approached he gradually slowed down. I suppose the last stage took 4 or 5 days? He lost his speech about 3 days before he died. Sis and I took turns to sit in his room and chat to him, past the time when he could reply. We played recordings of his favourite things which we saw a definite reaction to.

On the last day he was clearly distressed and wanting a drink but he had lost the ability to swallow. This was very hard. Thankfully he mostly slept. The staff were keeping him comfortable and eventually suggested that we stay the night (a tactful way of saying the end was near). Dsis stayed and I went home with mum. Sis rang me in the night to say come quickly, his breathing pattern had changed and she knew from experience what this meant.
I roused mum and we were there in 30 minutes but were too late.

I'll be thinking of you.

My dad had been deteriorating for a while, (reduced mobility due to arthritis, then anaemia of unknown cause) things came to a head at Christmas when he developed a chest infection and was admitted to hospital. He initially picked up with anti biotics, but started going downhill again despite changing his treatment. In the end we had to ask them to stop treatment as they were being completely unrealistic about the outcome - consultant talking in terms of transfer to hospital closer to home when he was profoundly hypotensive with little response to fluid resuscitation, and a surgical reg coming to assess him for surgery as he had an "acute abdomen" despite the fact he was a) barely conscious b) hypotensive c) had rip roaring sepsis
Once we got them to see sense, they continued iv fluids and pain relief, and we as a family stayed with him and provided all care, and just sat and held his hand or stroked his head (he was v deaf) He was unresponsive from the Friday night onwards and died on the Saturday evening. He was comfortable and showed no signs of distress. His breathing pattern remained stable up until about 5 minutes before he died - only just had time to get my brother and sister back in the room in time. The thing that shocked me most was when we went back into the room to see him after the nurses had performed Last Offices - he looked so peaceful -He had been in pain for years with his arthritis and after death all the furrows in his brow had gone. I had thought I would be frightened of seeing him dying but I'm really proud of how we advocated for him and made sure he had the ending he would have wanted.

Thank you so much both for sharing those precious times with me. I realise I had no idea of timescale really etc and your accounts have helped loads.

Secret I'm sorry you missed his last moments.

Eyestightshut that continual intervention despite evidence that really this is terminal event in a slow decline is our experience too. I'm so glad you were able to get things right for him.

You are showing me that I can do this and a good death is possible for mum. I have a friend over and that's made all the difference today.

Hopefully tomorrow we get the carer sorted and then we wait.

Can't really share anything helpful except...my mum died age 54 of a subarachnoid haemorrhage on a mixed ward after becoming suddenly ill 36 hours previously. No privacy, no time to prepare, news that she was going to die broken to us by a junior doctor (I remember she was wearing a mini skirt and looked mightily uncomfortable) real plane crash of a death frankly. Yes we were spared all the long drawn out difficulties. But had very little opportunity to show her how much we loved her, or have any kind of control over her environment. So maybe there is something to be said for the deaths of old age or drawn out disease. Not much to be sure, but at least one has time to be around the person and show love and caring.

Aww whataboutbob so sorry that was awful for you all :(

I am very greatful I've had time to prepare and do what I can for her. if there is an ideal timescale this is probably it at 86. In July in wheelchair but still went to DS concert. ro dying now.

Thanks Thea it was really shit the only good thing was she knew I was next to her on her last day and i told her i loved her, I know she heard it. Plus I guess she was spared the suffering and indignities of old age, but really I'd rather still have her around.

My grandmother died in hospital, aged 84, after two strokes. I spent a week sat at her bedside with my mum and aunt and I think (hope) she was as comfortable as she could be. She couldn't speak by then and was fed by IV and was on a fair bit of morphine. We were told she was going by the nurses - and it took seven more days. In the end, my mother told my DH to take me home as I'd only slept on a chair by her bedside in short naps for a week (I probably didn't smell that great either!) Half an hour after I left, she passed away. I am convinced she was waiting for me to leave and apparently that's quite common.

While we were there, the lady opposite died. She wasn't in pain, but she had a death rattle. If you have never heard one before it can be quite startling so you should prepare yourself in case that happens. It literally sounded like something was rattling around in her chest - like a huge marble or something.

I'm sorry you're having to go through it and I hope your mums passing is peaceful

My mother died four years ago, three weeks after being taken into hospital with a chest infection. she was 76. I remember that when it was time to go, she went quickly, and that's something that I'd suggest you prepare yourself for.

So sorry to hear that you and your Mum are going through this.

Theas this is a thread I wanted to start, but somehow couldn't.

My aunt spent a lot of time at the bedside of friend of hers who died last year. She said to me that there just a few things you can do – tell them they are loved, hold their hand, don’t expect them to speak, but acknowledge what they do say and keep every conversation simple.

Mum is hardly eating, sleeping more & more, talking less & less (& making less sense when she does speak). It’s not the mum I knew. Every time the phone goes I wonder if it’s news that she’s passed away. I hope it won’t be too long, for all of our sakes.

to you, stay strong, we will get through this.

Thanks pingpong you too.

Carers turning out to be totally unsuitable for the job given sadly. Neither have any end of life experience. Just as well one of us has I guess.

Craptastic carer 1 ( gentle and kind but undertrained ) memorably wanted to ly mum flat on her back for a nosebleed. Fortunately an amazing friend of mine was there at the time. Then precipitated a crisis call to the nurses by getting her stuck facing the commode and we couldn't get her in bed or on it ! Mum quite agitated after that. Nurses called and driver up now.

Neither carer has ever done mouth care so we all had a learning session from the nurse - putting it in my PDP !

Just tonight to get through - the night carer was driving to sleep when all this was going on ??

Theas.
I hope your mum is settled now.
When my dad died, we camped out in his hospital room for the few days before. I was so glad we did. His passing was peaceful.
I'll be thinking of you.

Thanks. Mum is settled now. Carer looked suspiciously asleep when I peeked in though :(

Have decided as mum is settled and safe in bed with side up I will sleep or try to rather than get ip and catch him.

However I will count used mouth care sponges as it should be absolute minimum of 2hrly so 4 before he leaves at 7am.

My mother died recently of cancer in a wonderful wonderful hospice. I can't speak highly enough of their care. In the end my father was so overwhelmed and shattered by the whole experience that when the nurses said it might easily be that night, we made a decision as a family to leave her in their care (we'd been there all week and were all exhausted), so he felt able not to be there (I think it would have finished him to be honest). When she died peacefully in the early hours (watched over by her favourite hospice nurse) literally everyone asked if we'd been there for the end which I did occasionally feel bad about but it was right for us and for her. Just to point out that you need to work out what is right for you and your situation and not worry about anyone else's views (the hospice was amazing at supporting us in doing this).

Firstly I'm sorry for what you're going through.

My dad died at home after a long illness, he was 70. He stopped eating and after that it was two weeks until he died......a lot longer than what I thought it would be. I dont think he even drank for the last five days and he certainly wasn't concious for the last week.

He had a morphine pump for pain.

We sat and talked to him, read the paper to him, etc. didn't leave him alone. We had night carers provided by McMillan.

Every day for the last week I was amazed he lasted the day. The not knowing the timescale was awful.

He had "cheyne stokes" breathing for the last few days.....think I spelt that right. Where he would stop breathing and after a minute take a gasp and start again. When I googled it suggested this meant he only had hours to live but he lived for days like that.

The evening he died his breathing did change in the last couple of hours. I'd been there until late afternoon and then at 9pm my step mum rang to say come......she could tell his breathing had changed. After a while he just stopped breathing and didn't start again.

Sorry, x post and maybe not appropriate for your situation but suffice to say that I am thinking of you and anyone else going through this tonight.

Just marking as I will be happy to share my experiences but am on phone so can't type much.

Will do so tomorrow. Hugs

Ilovevenice
Entirely appropriate post . I'm glad your mum had a good death in a place where you were all looked after around the time. I reckon some people wait to be alone to go.

Viva
Thank you. The uncertain timescale is a useful point. Your dads journey sounds slow and peaceful.

I feel more prepaired now for all different possibilities. Thank you.

No advice to offer, I'm afraid. But I am thinking of you and your family this evening .

My grandparents brought me up and I sadly lost my darling grandad last year.

He was brought home from hospital with a hospital bed on end of life. He hadn't eaten for a considerable time at this point and although we were provided with Fortisip nutritional drinks they pretty much went unused.

He would however ask for a drink very frequently which he couldn't do himself so we helped him use a straw. This very rapidly declined to keeping his mouth and lips moist with cotton bud type things (basically a stick with a pink sponge on the end, I'm unsure of the name)

His communication and waking times had deteriorated before coming home but definitely rapidly declined once home. He was quite distressed at hospital and adamant he wanted to go home and it was as if he let go of something when he finally got his wish. Not in defeat, more acceptance.

The majority of that last fortnight he was asleep/unconscious. The palliative care nurses would often tell us that it didn't seem like it would be much longer. But he held on. That can be very difficult. As much as you don't want them to leave you feel on tenterhooks waiting for 'it' to happen. Its very odd and I found it hard to deal with.

During his last few days he seemed agitated even though he wasn't really fully conscious. Its hard to explain. He was given morphine which helped. Although at no point was it distressing particularly - all in all it was a peaceful time.

His actually passing was also very calm. His breathing gradually got more shallow and longer pauses in between. Until they stopped coming. No bangs, crashes or grand finale. Just very simple, quiet slipping away. It wasn't frightening at all and nothing like I expected.

The only thing that took me by surprise was how very quickly he looked different. Empty is the best way I can describe it. I know its an awful thing to think about but its something that really shocked me and I wish I had been prepared for.

My thoughts and love are with you. Take care of yourself

Theas I lost my Mum to cancer just over 5 years ago. The memory of the last 5 days of her life will stay with me for ever as both a time of unimaginable pain, but also of great comfort and of acceptance.

We got "the call" on a Wednesday evening and I drove with my then 9 months old through the fog, 60 miles to join my family at her bedside in hospital. I was shocked to see her. She had changed SO much in just a fortnight. She went into hosp on Boxing Day and died on the 18th Jan and we were mostly by her side from the 13th.

I think we expected her to die on the night of the 13th but in hindsight know now that she was still a few days away from that, though of course no one can predict how quick it will be. In the end she hung on for a few more days, we think because she didn't want to die on my brother or sister's Birthday which lie between the 13th and 18th.

She still looked like our Mum when we arrived, though obviously cancer had made her as thin as you could imagine and obviously in great discomfort.

They started the Liverpool Care Pathway on the 14th. Unfortunately due an outbreak of norovirus in the hosp we were unable to move her to the hospice and slowly the ward she was on started to empty as people were sent home or moved. They made a special dispensation for us as no outside visitors were meant to be in the hospital but we were restricted to the family room of the ward and the corridor - we were not allowed to get drinks or food from the café/restaurant, but they looked after us. It was a very strange time. All of us beyond exhausted, physically and emotionally, not know whether she would die that day or in another week. My brother went back home to sleep and me and my sister went back to the family home at various points as there was simply nowhere for all of us to sleep or wash or anything in the family room. It was also a time when us siblings got on like we have never done before - all united in our love for our Mum and Dad, nothing demanding our time - so we just talked and even laughed and talked of old times - and I seek great comfort from this. We even celebrated Birthdays in there, with a motley collection of whatever we could cobble together.

On the day she died the hospital opened up again so it was busier. Mum had been moved to a side room and we took turns or went in together just to sit with her. She was by this stage unrecognisable from our Mum and the image does haunt me, but I do think it helped me accept it was her time. Dad did her mouth care and the amazing nurses treated her with the utmost respect, even when my poor Dad became somewhat verbally aggressive in his grief.

Her actual passing was beautiful (it is bringing me to tears to write it). As the hosp had just been re-opened we had all been off to shower, get something to eat, or just wander about. But we all found ourselves together in her room - I think we knew. My Aunt took care of my young son so it was just the 5 siblings around the bed holding hands with my Dad in the corner. And then she slipped away. Slowly.

I wouldn't say she had a good death - cancer is horrific, but at the end she was in no pain and she was cared for in the best possible way. We were able to be with her and she maintained her dignity throughout. We were able to say what we wanted to and we are at peace with that.

My Father's death a couple of years later was more sudden and no one from the family was with him (which I think he wanted - having seen what it was like for Mum) and it was much more of a shock seeing him dead and not knowing how he was in his last moments, but a nurse reassured us that he had been with him and that he had felt no pain.

Nurses and doctors caring for the dying have my utmost respect.

My thoughts are with you.

I am glad she is at home. I am shocked by how many people die in hospital, how we have medicalised death, how we don't seem to be able to prepare ourselves and others to have the best death we can. It will come to us all yet there seems to be so much denial.

My mum died of cancer, pretty quickly, a matter of weeks. I am glad she died when she did as there was talk of taking her to hospital for biopsy and chemo (why? why? It was in her liver and her lungs, there was absolutely no point) and that would have meant her last few weeks would have been painful and she would have died in hospital.

I am angry that the doctors allowed my brothers to think this was a good idea. I am glad she was spared that. But my dad still talks about why nothing was done to 'save' her; its as if he just can't bring himself to understand what stage IV cancer is.

I hope your mum's death is as peaceful as can be in the circumstances.