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.
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.
