His death was agonising to watch … **MNHQ adding content warning**

[Dumbanddumber20]

My grandfather died today - he’s been in a care home for the past 10 months . He went downhill very quickly during the first lockdown . From a though elderly man who still drove short distances , had his favourite pub , his allotment and his daily routine and the first lockdown changed all that . Because of the lockdowns it was near impossible to get a diagnosis let alone good care from his gp but we muddled through as a family as distressing as it was till last February when he had a very large “episode” combined with two falls and he was taken by ambulance to the hospital. He was then after two months diagnosed with mixed dementia and moved in to a care home .. he was never the same again especially with the limitations on visits and how much we could see him or do , but we made it work. Until today .
They went to raise him from his usual lie in and he had a massive stroke , they did everything right but because of the DNR and his condition it was decided to keep him at the home .
From 3:30 until 7:26 pm I watched the man who took over the job of raising me cry out in pain (despite the medication to ease him) fight for every single breath , and his body seeming to consort In complete agony … I’ve never seen nor did i expect his death to be like that . I thought his death would be a release from the pain and suffering, that his mind would finally be at peace again , but it was absolutely heartbreaking to watch … I don’t know why I am even writing this , but I’m sat here and all I keep thinking about is how he never deserved that and I don’t know how to process what I saw

I'm so sorry to read that. I guess there wasn't time to get him all the good drugs to ease his passing.

My DF died of heart failure, which can be particularly cruel and painful, but at least we and he had warning and were able to get him high doses of morphine. It doesn't really seem fair though given he was never overweight and really looked after himself. The worst thing was not his death but the last two or three years of his life after he had a massive heart attack and bypass where he was never himself again and went up and down but basically for two years his heart was failing. He was frequently in and out of hospital and ended up in a home as he needed round the clock medical care at the very end of his life and the staff were brilliant.

I do think sudden deaths are much more shocking and difficult to deal with I hope you would consider some grief counselling to help you.

^Unfortunately palliative care is only in place if you actively ask, demand and set it up yourself.
Or at least that has been my experience with my FIL^

Yes, we were really lost until a local hospice charity intervened and helped use get DF fast track into a home (as unfortunately there was no space in the hospice itself) and they helped get him the palliative care drugs. They are amazing and I give them a monthly donation now.

You can self refer or your family can refer you to a hospice as long as you are not in hospital. Once you are in hospital you are at their mercy. The hospice were very willing to take my mum, they had beds, they even had her name on their admissions board. But because the care home had sent her to hospital (also against our wishes) we could do nothing. The "palliative care doctor" at the hospital was a part time GP with an interest in palliative care. She was an absolutely vile woman who lied and retrospectively altered medical records, hid the records for months when we made a complaint, then stood up and lied again when there was an investigation.

I'm so sorry OP. Please realise though that you have been through a real trauma here and might really need some counselling and support to help you deal with it. I would imagine it's the sort of thing that could easily lead to PTSD so please look after yourself and get help x

My sincere condolences.

It's long past time to give everyone in the UK the right to die with dignity, by legalising euthanasia.

Sorry, your gf sounds like he was a lovely nan.

Years ago a doctor could give a huge dose of morphine knowing that it may well speed the patient's death.
Now care givers are restricted to specific doses and even when a person is dying there is no leeway to help things along.
So sad.

I'm so sorry op

I am going through the same right at this moment. Just on my way to my nans care home. She's been fighting for every breath since Friday. No food or water on a driver. I look at her and think how dry her mouth must be

I wish they'd give her a really large dose of morphine. We're kinder to rats

I'm so sorry OP, and others here who are going through/have gone through the same. My Grandad died at home (his choice) and was also in a lot of pain in the final 24 hours. It was very difficult to watch. I was also haunted by his facial expression after he had died, it wasn't the peaceful expression you would hope for.

However I can assure you that the memories become easier to deal with over time, and I rarely think of it now unless prompted, and instead usually think of positive memories from before he became ill.

My dad had what's called terminal agitation (I won't describe exactly how he experienced it, but look it up for a general description), which might be what your poor grandad had. It's really, unbearably awful. There was a long period of getting over the trauma of watching this before after-death grieving began (I say after-death grief as anticipatory grief was a big thing for me too).

In his very final hours he was peaceful because he was so tormented he managed to nod his consent to have the morphine increased - and as a former nurse he knew what this meant. Although we knew it was necessary, that was differently awful and traumatic. Don't feel bad if you can't forget the it all/relive it etc, it takes time (maybe counselling - I did occasional online chats with Cruse) and I don't think I will ever forget exactly how it all felt, but I'm now not in the grip of those memories.

I can't describe my father's death or I go to pieces. It was like you describe but lasted 5 days. he did not have dementia - he had cancer and the hospital said that because his pain was uncontrollable, they would put him in a medically induced coma. He wasn't in a coma at all. He was awake and conscious.
It was horrific. Everything they said would happen was wrong. I lost faith in modern "health care". I will never believe a word they say again.

I'm very sad to hear what your GP went through.

Our journey into the world can be hard and our journey out can be harder. May he be resting peace. I don;t know how to get over the trauma, because I haven't, but what helps enormously is that a I have a large picture of him in my kitchen, laughing, with his cat on one shoulder. I smile every time I see him - as he really was, not how he died.

So sorry for your loss and your experience witnessing your GF's passing. I wish you both had had more help.

I'm so sorry for your loss @Dumbanddumber20.

You sound like a lovely person and as hard as it was, it was great that you were able to be with your beloved GF at the end.

It's likely the images will stay in your head for a while, and you'll keep replaying them. I don't know why we do that to ourselves (I did it for a long time after my own father's death), but it seems to be a human trait. Please reach out to somewhere like the National Bereavement Service to get some emotional support and talk through your feelings. It's free of charge and you can get them on 0808 164 2239 or visit www.thenbs.org. Take care .

You'd think they had palliative pain management all worked out, but there seems to be very little they can do against the discomfort that comes with trouble breathing... I saw something similar recently with my godmother.

If you mean what’s often referred to as the death rattle, this is not uncomfortable for the person dying but difficult to the watch for the people around, have a read of the following link and it explains why it sounds like moaning and rattling, I hope this is helpful

www.medicalnewstoday.com/articles/321487

I completely understand how you feel, I too sat with my grandmother when she died several years ago. However, I have read a bit about dying, and what stages someone goes through. There was no reason for my grandma to be in pain - she too had a massive stroke - so didn’t have pain killers, but still made a lot of noise. It was upsetting at first. But one of the staff in the care home who was sitting with us explained that it’s extremely common for people to be so agitated. There are also different stages in their breathing that can appear to be alarming.
I listened to a podcast in which a nurse talks about dying, it all made perfect sense to me and was very reassuring.
www.bbc.co.uk/programmes/m0011sgf
Maybe when you feel up to it, have a listen. It may help you understand the stages your grandfather went through. Much love x

I'm so very sorry for your loss, and the extra distress you've experienced.
I'm another one I'm afraid who watched my mum seem in pain and distressed before she passed last summer from cancer. I'm angry and traumatised by it.
I'm going to listen to the recommended podcast, thankyou to the poster who mentioned that.
Sending you love and strength

I am so very sorry that you have experienced this.

My father died in a similarly uncomfortable way during the first wave of COVID. It was horrific to watch and not be able to do anything. Unfortunately because he was on a COVID ward the palliative care team would only review him remotely and didn't believe he was near the end of life so he was only given paracetamol. Watching the person you love most in the world die so painfully was utterly horrific. In my head I had always imagined it would be peaceful and that he would be surrounded by family. But we were alone and he was in pain. After he died I had to push his wheelchair home with his belongings through London - completely alone. I will never forget it. I had (and. still have) terrible nightmares and oh the guilt......

I think talking to people about your experience (I pay a therapist) does help a bit. And trying to remember that horrific though his death was in the grand scheme of things it was a small part of his life - he was so much more than his death. If you had been in his place I am sure you would not want your loved ones to just think of you at that point in time - rather to think of you and all the good times you have shared and the good things you brought to their lives? It is so hard and I wish as a society we had an honest discussion about death- acknowledging that. some are not good and how they can be improved? At Dads hospital they had spent months talking to us about end of life care (hospices, pain relief etc) but when it came down to it there was nothing.

I hope things improve for you and am sorry that you have had to go through this.

Oh @Mogs43, how heartbreaking

Ohh these comments , I can’t explain what they mean to me and I am so grateful to you all for not making me feel so alone in this and that it is ok for me to feel the way I do . And I’ve found this a good reminder when I reread that he must have known (or I hope he did) how loved he was .

I wish I could say I feel better in general - I don’t I still keep seeing the same images and it made me Google a painting because it kept flashing in my brain - I googled the screaming man but I understand now it’s called the scream or some such and now I wish I hadn’t because that is or was my grandfathers face and it’s made it worse. Sorry if that upsets anybody …

I will listen to the podcast tonight … it’s just all of these experiences other posters have retold and still it’s obvious nothing has changed and yes we really do treat animals so much kinder and with so much more compassion.
I just wish I could have saved him from that ending …

Remember it's very very early days too. Take things one hour at a time and be very kind to yourself.

Please do listen to the podcast ( I recommended it upthread too). It talks about lots of things, but one thing I struggled with was that my dad seemed like he was in a lot of pain, made a lot of noise, and seemed to be really struggling. The woman on the podcast explained what physically happens to a person’s body when they are going through their last few hours (not in a horrible way), and talked about how a lot of these reactions are physical reflexes - it may not seem like it but she said that the person is usually deeply unconscious, even though they might cough, or rattle, or moan, or twist about. It made me feel a lot calmer about my dad’s death, when I had been traumatised for years.

Plus, Fi and Jane the hosts dealt with the subject matter in a really compassionate way and are generally funny and kind and caring - would recommend all their podcasts.