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haunting face of dying DF (TW)
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youllneedthisfish · 06/06/2022 13:42

My DF is dying - likely today. He has advanced dementia and Parkinson's.

Me and my DM spent 7 hours yesterday by his bed watching and listening and trying to discern changes in breathing that might signal the end - it was awful. He is not conscious anymore and hasn't eaten or drunk for 28 hours. We are about to head back to the nursing home after some hours off. This morning his breathing was regular and relaxed. We don't know how long this will take :-(

We are both haunted by his face. There is nothing of him - bones and slack flesh in arms and legs, nose is just cartilage and skin, eyes are sunken right under his eyebrows, mouth open and eyes glazed over and half open. Its horrible to see and will haunt us both for a long time.

Can anyone recommend ways to stop seeing this image day and night? its not a way to remember someone is it??

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erinaceus · 07/06/2022 08:16

I am sorry that you are going through this, and wish you strength and peace in the coming days.

It might sounds obvious, but do you have photographs of your DF when he was healthier? You might find these helpful, either now, or in the future.

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DoItAfraid · 07/06/2022 08:19

I am so sorry you are experiencing this. Please seek grief counselling in due course - they will help with suggestions on how to redirect haunting images.

Also agree with pp who said maybe look at photos from before.

That said, grief is an awful entanglement of emotions so you might not want to do certain things.

Very best wishes to you.

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ParkrunWithDog · 07/06/2022 08:22

My dad died of cancer. His face just after he died haunted me, I saw it every time he closed his eyes. Then I went to see him before the funeral and he looked so peaceful and like himself.That is what I remember now. I know you’re not there yet but hopefully you will have better memories in time.

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LadyGardenersQuestionTime · 07/06/2022 08:24

For a while after my mum died i struggled to get that last look out of my mind. I consciously did what Erinaceus said and if that look flashed in my brain I replaced it with her laughing and happy with us at home, or looked at photos of her as she was. It did take effort but it has passed and now I remember mum at her best.

Flowers for you both, it is such a hard thing that you are doing.

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MistressoftheDarkSide · 07/06/2022 09:59

I’m so sorry you’re going through this - unMumsnetty hugs x

im in a similar situation with flashbacks to my DP who passed in January x

When it happens I kind of brace myself and try to breathe through it, and sometimes I can look at pictures on my phone if happier times, reminding myself that while it is monumental and overwhelming in the grand scheme of things this experience is a tiny fraction of time and not representative of the whole of his memory x

Its taken me 4 months to get here though, and in the early stages it was physically crushing ….. so my only advice is to take all the pressure off yourself to “be rational” etc - you are experiencing a profound trauma, it sadly cannot be avoided, so both you and your DM have to navigate it together and be kind to yourselves and do whatever you need to in order to survive x

i hope I’m not being clumsy here, but I do totally understand what you’re going through and it absolutely hurts like hell x

Sending love x

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Bumptious22 · 07/06/2022 22:38

MistressoftheDarkSide · 07/06/2022 09:59

I’m so sorry you’re going through this - unMumsnetty hugs x

im in a similar situation with flashbacks to my DP who passed in January x

When it happens I kind of brace myself and try to breathe through it, and sometimes I can look at pictures on my phone if happier times, reminding myself that while it is monumental and overwhelming in the grand scheme of things this experience is a tiny fraction of time and not representative of the whole of his memory x

Its taken me 4 months to get here though, and in the early stages it was physically crushing ….. so my only advice is to take all the pressure off yourself to “be rational” etc - you are experiencing a profound trauma, it sadly cannot be avoided, so both you and your DM have to navigate it together and be kind to yourselves and do whatever you need to in order to survive x

i hope I’m not being clumsy here, but I do totally understand what you’re going through and it absolutely hurts like hell x

Sending love x

I've been through this with my parents, both over a short and long period of time and echo this- you are processing a traumatic experience. But, it will even out and eventually you'll remember your DD as 'himself'. You will ride the waves of grief first. Unmumsnetty hugs.

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Bumptious22 · 07/06/2022 22:39

Ugh- DF

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Unsure33 · 07/06/2022 22:45

Just hugs . I have just lost both my parents within 8 weeks of each other and my mum had parkinsons and it was bad . I know exactly what you mean . Even holding her hand at the end was hard . She had been in end of life care for 5 months . I am sorting all the happy photos of her but it’s hard not to see her face as she has been the last year . I just hope it will fade .

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dogaibu · 07/06/2022 22:45

It does get easier in time.

I lost my darling Nan in 2020 then my Dad in 2021. Both looked nothing like their wonderful selves in their final days. With Dad, I saw him after he'd died, just 10 minutes after and being honest, yes it does still haunt me but what I've found is that while in the early days all I could picture was them suffering, in time my memories have changed in that that vision is no longer the first thing I think of. I now think of my Nan throwing her head back and laughing while playing with DS, or my Dad guffawing at the TV and shouting out answers while watching The Chase. It's almost like in time, your brain wants to remember the good times much more than the bad.

I'm really sorry you're going through this, it's so horrible.

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Landlubber2019 · 07/06/2022 22:46

My wallpaper on my phone is my dad, it reminds me of happier times and I am able to get past the last moment we had together. But hugs to you at this difficult time 💐

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notlongtoo · 08/06/2022 06:37

This is a very sad time for you and all the family.
We lost out son, 30 years ago in a RTA.
I still recall having to identify him, and kissing him goodbye at the undertakers.
We still remember him with love, and the things that he did.
We have never been the same since, but have carried on with life, but with stunted emotions.
Time may heal, but it leaves scars.
Try to remember the happy times together, and be thankful for them.
You have spent more years being happy with DF; that bis the balance to try to keep in mind.
It is way of coping with your loss.

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Justleaveitblankthen · 08/06/2022 06:43

I think having happy photos of him as your phone wallpaper and screensaver is an excellent idea. Flowers

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Vsirbdo · 08/06/2022 06:50

I remember feeling this way but it does fade and surrounding yourself with photos when they looked like themselves helped for me

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TheNemesisOfLame · 08/06/2022 06:53

My mum died 4 yesterday ago - also Parkinsons and cancer. I sat with her for hours in the hospital as she died and frankly I didn't recognise the person in the bed as 'her' for much the same reasons as you say.

But I chose a lovely picture of her from just a few years earlier for the order of service- and that is what I choose to remember when i think about her death.

Also it helps having FaceBook memories and OneDrive 'On This Day' which bring up pictures of earlier times to associate good memories/images again without have to actively seek them out.

I hope everything goes as well as it can for you all

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GETTINGLIKEMYMOTHER · 08/06/2022 07:08

I do hope it will pass in time, OP. I do know how awful it is. My mother’s face contorted most dreadfully for a few seconds before she died, as if she was in agony, but nobody has been able to tell me why. (Heart attack?)

It was so upsetting that it was a long time before I told siblings - didn’t want to distress them. She was 97 and had had advanced dementia for some years so TBH she looked pretty awful anyway.

For her funeral order of service card I deliberately chose a photo from when she was much younger, very happy, and looking even more than usually lovely.

What also helped was a letter she’d written to us (pre dementia) to be opened after she was gone.

Since she’d had dementia for so long, it was lovely, like having her old self back again. Must do the same for dds before I go doolally (God forbid!)

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youllneedthisfish · 08/06/2022 16:44

Thanks for all your thoughts. He is still hanging on, which TBH astonishes me - no sustenance of any kind since Sunday morning; basically all that's left is breathing.

I had no idea that it can take so long - when someone has expressed the clear wish not to be kept alive in this situation in and advanced directive, and everyone has been incredibly good and observed those wishes to the letter, that someone can carry on on the brink for days and days. He's been on a morphine, anti sickness and anti-anxiety drug pump all this time. I'm very glad he's not in a hospital.

We sat with him again yesterday morning, and we are waiting a call. I have had my fill I think, I'm not sure I can see him again, but will take my mum tomorrow morning again.

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MissisBoote · 08/06/2022 16:49

I was with my grandfather when he died and after he died my grandmother put his false teeth back in. I don't recommend anyone does this immediately. I couldn't get this grotesque last image of him out of my head for weeks.

It did fade eventually and now I only have the memories of him as I was growing up and when he was happy and healthy.

I'm sorry you're going through this - I remember sitting with him for days and it was exhausting.

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crimsonlake · 08/06/2022 16:50

Very sorry you are going through this, but sometimes they just seem to cling on even when it is time to go.
I saw my father a couple of hours after he had died and that disturbing image stayed with me for a long, long time. Thankfully it has faded now as I am sure it will do for you.

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ooherrmissus14 · 08/06/2022 17:48

My husband had this when his father died. The way we spoke about it was that, at first, the most recent memories will be dominant but over time, they will fall into the same significance as all the other memories, except there are millions of those and only a few of these. You obviously won't forget this experience but they won't always be as present as they are now.
I'm so sorry for what you are going through- my mum has Parkinson's and I am dreading what the future holds for her. Lots of love to you and your family xxx

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Lookingforrecommendations · 08/06/2022 18:34

A family member died recently with dementia, this is how her face looked, not like her,, like a corpse or a victim of a concentration camp. It was so upsetting.
When she finally passed, I went to see her in the funeral home, it was like the mask of dementia had lifted and she looked like herself again, at please, face not contorted.
Make sure you go and see him, once he has passed and the funeral director has sorted him, let that be your last memory, of him at peace.

Sending love

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Arsewangry · 08/06/2022 18:58

Oh op I'm so sorry, I have been in your shoes too many times and it's absolutely heart breaking to see.

If it helps to reassure you, what you are seeing is - as awful as it may seem - a completely normal part of the dying process. He is very likely unaware and quite comfortable if he has pumps in place.

Towards the very end of life there may be some agonal breathing which looks uncomfortable but again, he will not be aware or distressed, and then perhaps a rattle/rasp to his breath which again is completely normal, is not painful or distressing to the dying person.

You may also see nails and lips turn a grey-blue colour, skin will turn grey, and he may feel cool to touch.

My grandmother took quite a few days to slip away after her last drink, so it is not always a quick process as the body shuts down.

I think you have had some great advice from previous posters already, this doesn't have to be your lasting memory of him. Please be gentle and kind to yourself over the coming days / weeks and I'll have you in your thoughts. Best wishes to you.

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Moodycow78 · 08/06/2022 19:02

I'm sorry hon, I went through this with my mum. I was adamant I didn't want to see her after she'd passed but I was talked into it and I'm so glad I did as she looked beautiful. All the pain and stress was gone and she looked 20 years younger and wierdly healthier than she had in a long time. It's a better last image xx

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TheIoWfairy · 08/06/2022 19:20

Sending you hugs and best wishes at this tough time.
My DF lived for a few days after all treatment was withdrawn. For a couple of days he looked unsettled and it was upsetting to watch. I didn't want to keep going and getting upset but fortunately made one final visit. He was peaceful and, though thin and frail, looked more like his old self. He died very soon after I left his bedside. I'm so grateful I had that final glimpse and I hope that you might get that lucky chance with your DF too.

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FatArse123 · 09/06/2022 11:41

OP my dad died of Parkinsons and Dementia a few years back, I remember the waiting at the end was the absolute worst. I thought it would never end (he lived for 10 days after oxygen was withdrawn), but it did. I remember desperately looking at forums for someone to tell me when it would end. His frailty was absolutely shocking to witness; I remember Graham Norton, whose father had parkinsons, decsribing him as looking like baby bird that had fallen out its nest, and that's exactly what it was like. I take some comfort from the idea that my dad had already checked out, basically.

Somehow we're not equipped to process experiencing horror, a grief counsellor would help with this. I don't really have much advice, except to say that talking about it definitely helps - as a society we pretend this doesn't happen, but many of us know that it does.

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HoppingPavlova · 09/06/2022 12:00

Going to sound odd but go see him a day after he has died. Generally, people look really good a day after. Even if trauma is involved they can usually be made presentable to enable viewing. At the time of death it’s often not great tbh but honestly a stage of relaxation sets in and death also seems to have the advantage of stripping some years off. I always encouraged people to go see loved ones the following day as it’s usually a pleasant memory they take away.

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