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How long until the end?

icklemare

Registered User
Apr 22, 2012
4
0
Dad's had FTD diagnosis for 9+ years, with many years of ups and downs like each of us here. We've had an end of life plan & DNAR in place since Jan 2020 when we were told that he was reaching end of life, but this week it seems we are looking at the end.
Last SALT assessment (a couple of months ago) confirmed that the swallowing has indeed now gone and we're at a high risk of aspirating, so fluid/nutrition intake is limited to specific nursing staff and is at minimal levels. Dad's been non-communicative for years, with no real or tangible responses, mainly automatic twitches, doubly incontinent, bed bound for last few years, with no ability to perform any tasks independently.
He's now had no fluid intake since Sunday as Mondays attempts all ended in immediate vomiting. With a chest infection and a delay in antibiotics, only one dose has been administered on Tuesday afternoon as they've been unable to stimulate his swallowing at all since then.

In the last few days we've seen dad in a twisted, gaunt state; in death rattle mode, noisy, rapid shallow breaths, pulse racing, cold to the touch, mottled colouring to limbs, totally non-moving, and looking like we're at the end. He's been having morphine and midazolam for the last 3 days, along with the buprenorphine patch, they also have a syringe driver ready in case it's needed too.

For now, his breathing has levelled and quietened, his features more relaxed, and the colour/clammy touch is back, when we saw him last yesterday evening he was brighter, calm and like a different person. I understand that the morphine and meds will be masking a lot of what is happening, but I'm struggling with the difference I'm seeing.
The nursing staff as ever are amazing, but we've had daily calls to say they hope he makes it through the night, and we all know he can't continue like this.

It's exhausting saying goodbye each day, not wanting to go and visit too much both to not disturb dad or frankly, to have those images haunting us as the last time we see him. I know there are no exacts for this, I think I'm just wanting some reassurance as to whether we really are nearing the end or not?
The staff are still very clear that we are on the same journey and just moving further down that road.

Sorry to ramble, very grateful to have this platform to be able to express feelings on.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,731
0
Yorkshire
oh @icklemare I so feel for you all

sorry, I have no experience to help you, though I found the staff in dad's home knew what they seeing

sending a blanket of sympathy
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,363
0
Kent
It`s the worst time @icklemare.. It doesn`t seem your dad is ready yet for the syringe driver but I`m glad for all your sakes it`s in place for when the time comes.

Sending deepest sympathy.
 

Moggymad

Registered User
May 12, 2017
617
0
((( Hugs @icklemare )))
You have given a very clear description of the seemingly final part of your dads journey & the road you tread with him.
We found once my mum was on a syringe driver she was much more at ease than when having morphine injections. She still needed the midazolam top ups mostly when the nurses came to check/change her, other than that she wasn't moved. There was no communication from mum who seemed to be in a semi conscious state but with an occasional furrowed brow & body squirm indicating a need for the additional meds. It was only 2 days once the syringe driver was in place & they were her most peaceful days.
I hope your dad slips peacefully away without any further discomfort. It is a hard time for loved ones to endure but made more comforting when its peaceful.
 
Last edited:

icklemare

Registered User
Apr 22, 2012
4
0
Thank you for your kindness and words, its comforting to read others experiences and certainly helps to not feel alone.

This afternoon Dad's been moved on to the syringe driver, we haven't visited since yesterday tea-time as we just can't keep saying goodbye each time. He's still rattly in his breathing at times but is said to be calm and comfortable for now. Hopefully the driver will help to relive any further discomfort through the rest of the time he has, and allow him to slip away quietly.

I can only wish for peace now, and that it is relatively swift.
 

icklemare

Registered User
Apr 22, 2012
4
0
I just wanted to say that Dad passed this morning, in between me having called and the shift handover, sneaked out while everyone was busy, his usual cheeky self even til the end.
He was relaxed and comfortable and is now at peace. The staff, the extended family as such, we're able to share memories with us when we went to say our final goodbyes, which was lovely.
He'd had an increase of his meds over the last few nights just to keep him comfortable and his passing was with dignity and love.

Thank you for your kindness ❤️
 

Peace lily

Registered User
Jan 30, 2020
97
0
I'm sorry for your loss @icklemare. I'm glad that your dad's passing was a peaceful one. Take care of yourself in the coming days and months x
 

MrsV

Registered User
Apr 16, 2018
239
0
Northamptonshire
Dad's had FTD diagnosis for 9+ years, with many years of ups and downs like each of us here. We've had an end of life plan & DNAR in place since Jan 2020 when we were told that he was reaching end of life, but this week it seems we are looking at the end.
Last SALT assessment (a couple of months ago) confirmed that the swallowing has indeed now gone and we're at a high risk of aspirating, so fluid/nutrition intake is limited to specific nursing staff and is at minimal levels. Dad's been non-communicative for years, with no real or tangible responses, mainly automatic twitches, doubly incontinent, bed bound for last few years, with no ability to perform any tasks independently.
He's now had no fluid intake since Sunday as Mondays attempts all ended in immediate vomiting. With a chest infection and a delay in antibiotics, only one dose has been administered on Tuesday afternoon as they've been unable to stimulate his swallowing at all since then.

In the last few days we've seen dad in a twisted, gaunt state; in death rattle mode, noisy, rapid shallow breaths, pulse racing, cold to the touch, mottled colouring to limbs, totally non-moving, and looking like we're at the end. He's been having morphine and midazolam for the last 3 days, along with the buprenorphine patch, they also have a syringe driver ready in case it's needed too.

For now, his breathing has levelled and quietened, his features more relaxed, and the colour/clammy touch is back, when we saw him last yesterday evening he was brighter, calm and like a different person. I understand that the morphine and meds will be masking a lot of what is happening, but I'm struggling with the difference I'm seeing.
The nursing staff as ever are amazing, but we've had daily calls to say they hope he makes it through the night, and we all know he can't continue like this.

It's exhausting saying goodbye each day, not wanting to go and visit too much both to not disturb dad or frankly, to have those images haunting us as the last time we see him. I know there are no exacts for this, I think I'm just wanting some reassurance as to whether we really are nearing the end or not?
The staff are still very clear that we are on the same journey and just moving further down that road.

Sorry to ramble, very grateful to have this platform to be able to express feelings on.
 

MrsV

Registered User
Apr 16, 2018
239
0
Northamptonshire
Hi there,
So sorry for you at this time. It's very hard just sitting watching your loved one dying.
My Mum passed away yesterday, you've given a very good description of my Mum's final hours. The nursing home where Mum lived were considerate and kind to us, we were allowed to stay at Mums bedside for 2 days, with short bouts of going home for a couple of hours sleep, eat, and back again. We initialy got a call from the Home Manager to say I think you should come, and quickly if you want to be with Mum. As it turned out we were there another 6 hours, before she passed. We didnt want her to pass alone. In the end Mum passed peacefully. Once they put Mum on the driver of morphone and midazolam she appeared to be sleeping. During this time we stroked her head, held her hand and talked to her, we told her all we wanted to tell her, and we were told by the nurse that she will have been aware of her surroundings and most likely could hear, but unable to respond. We are thankful that Mum passed in a nice nursing home with us by her side, rather than in hospital where visits are still not allowed. I would say from our experience, if your Dad is at the medication driver stage the end is very close, hours rather than days. Were both glad we stayed to the end, it was important to us, and its given us closure. We know for sure Mum is no longer suffering, no more pain, and released from that 'passenger' she has carried called Dementia. Its only a day, but we feel relieved its over - for all the family as well as Mum. God bless you.