It's just crazy this!

[Red66]

On the roller coaster again. So, had call on Thursday from the nursing home that Dad was dying as his breathing had changed. What a hell of a day! Looking at him his breathing had slowed and stopped but then fast and shallow. Pauses getting longer. This was at 3pm ish. By 7 pm he roused becoming more alert and breathing back to normal, no other symptoms.

Don't get me wrong can only have quarter of a teaspoon of fluid and chokes, brings it back up. Mum is living in hopes saying they should feed him, they are scared he will aspirate as his choking is that bad. The home are out to keep him comfortable now. He is stripped of his meds so he is hallucinating because of the lewy body aspect and then I suppose also because he is dehydrated. He is reaching out at stuff. If he becomes more agitated then end of life meds. I have been terrible in myself watching Dad and then watching Mum. Horrible. What we went through thinking that was it, we are all going to have to go through that again. I just hope Dad wasn't in any pain, he appeared to be at the time quite settled. I love him with all my heart. My 3 year old has picked up on stuff and yesterday he was panic stricken because I wanted a lie down! He kept saying mummy won't wake up, he was downstairs with my husband and he kept saying it over and over, so no lie down for me! Dread the day when I do have to tell him, it will certainly be over the coming weeks, who knows. I asked the nurse how long you can survive in this state without sufficient fluids and she said weeks. Suffering it's not right. I want it to be over for dad to not suffer, but selfishly I am just dreading the other side. I hate this.

 

[LadyA]

Oh Red, my heart breaks for you. It's so dreadfully hard to watch, so I know you will understand when I say that, hard as it will be to finally say goodbye to your dad, I do hope he will go sooner rather than later. Try and get some rest, you may need all your strength. xx

 

[Red66]

Oh Red, my heart breaks for you. It's so dreadfully hard to watch, so I know you will understand when I say that, hard as it will be to finally say goodbye to your dad, I do hope he will go sooner rather than later. Try and get some rest, you may need all your strength. xx

Thank you.

Me too, I just hope it doesn't drag on for him. I wonder how long it will last.....

 

[Jessbow]

try and change your terminology around the little one. The last thing you need, if and when the inevitable happens, is a three year old that wont go to bet, or let you sleep, for fear of not waking up, like Grandpa didn't.

 

[Anita Mehdi]

My Dad passed away yesterday after 12 days and 3 hours on end of life. A few days before he stopped breathing for 39 seconds at a time with about 6 breaths in between . Then after a day or so his breathing became regular again, but very fast and he had to work so hard to breath, it was so loud. He was asleep all the time and eventually just got weaker and eventually stopped. Hope this helps. Love to you and your family, I know how hard it is x

 

[Red66]

My Dad passed away yesterday after 12 days and 3 hours on end of life. A few days before he stopped breathing for 39 seconds at a time with about 6 breaths in between . Then after a day or so his breathing became regular again, but very fast and he had to work so hard to breath, it was so loud. He was asleep all the time and eventually just got weaker and eventually stopped. Hope this helps. Love to you and your family, I know how hard it is x

Thank you Anita for sharing your own difficult situation, is does help knowing what to look for. It must have been horrific. I am here with dad now and his mouth when I got her was full of cream sticky goo. He was very agitated. Managed to clean out as best I could and managed to settle him, asleep with mouth open. His breathing at the moment seems quite normal. I hope you and your family have the strength to deal with this. My thoughts are with you. Thanks once again xx

 

[canary]

Thank you Anita for being able to share that. Please accept my condolences.
((((hugs)))) to Anita and Red
I watched my MIL pass away and the breathing pattern was the same. I was told that it was a sign of the body shutting down. Red, is your dad receiving pain killers - patches or a syringe drive? If not then please push for some, no-one should die in pain.
This stage can last for a few days sometimes. It is the last long vigil and we will hold your hand through it if you would like.

 

[Red66]

Thank you Anita for being able to share that. Please accept my condolences.
((((hugs)))) to Anita and Red
I watched my MIL pass away and the breathing pattern was the same. I was told that it was a sign of the body shutting down. Red, is your dad receiving pain killers - patches or a syringe drive? If not then please push for some, no-one should die in pain.
This stage can last for a few days sometimes. It is the last long vigil and we will hold your hand through it if you would like.

Thank you Canary, it is you guys that are getting me through, being able to write it down helps!! They haven't started any end of life meds yet, they said he seems settled and doesn't need them yet. Puzzling as I thought they got give soon after you couldn't swallow

 

[canary]

I suppose that if he is settled then he is unlikely to be in pain - but at the first sign of agitation or restlessness start pushing.
xx

 

[Gwendy1]

Horrible for you to watch, Red. I hope you're dad remains comfortable, and that you manage to get some rest. You must be physically and mentally exhausted. Xx


Sent from my iPhone using Talking Point

 

[Red66]

I suppose that if he is settled then he is unlikely to be in pain - but at the first sign of agitation or restlessness start pushing.
xx

I definitely will canary, can't bare the thought of him agitated. He does get agitated now but it's his 'normal' level of agitation when he wants changing. We shall see how that goes.

 

[Red66]

Been back to see Dad before lunch. He had no pj bottoms on and a mouth full of white goo. Imagine washing up powder with only a few drops of water, it was like a bubbly paste. He wasn't coughing when I saw him but agitated. I put trousers on (apparently he had been hot earlier) and cleaned his mouth as best i could and stroked his head after making him comfortable. Thankfully he went to sleep, quickly too and became calm. Best way I suppose at this stage!

 

[LadyA]

When William was dying (of aspiration pneumonia) "gunk" for want of a better word would collect in his mouth and the top of his throat in the last day or two of his life. He wasn't able to cough at that stage. The care staff would suction it out regularly, to keep him comfortable, and use the swabs to keep his mouth moist. William wasn't receiving any fluids at that stage.

btw, the type of breathing pattern you described - and Anita as well - is called Cheyne-Stokes. It can happen in some medical conditions, but it often happens when someone is nearing death. (((.))) Hugs to you, Red.

 

[Red66]

When William was dying (of aspiration pneumonia) "gunk" for want of a better word would collect in his mouth and the top of his throat in the last day or two of his life. He wasn't able to cough at that stage. The care staff would suction it out regularly, to keep him comfortable, and use the swabs to keep his mouth moist. William wasn't receiving any fluids at that stage.

btw, the type of breathing pattern you described - and Anita as well - is called Cheyne-Stokes. It can happen in some medical conditions, but it often happens when someone is nearing death. (((.))) Hugs to you, Red.

Hi LadyA thank you for your post. Dad has had aspiration pneumonia a couple of times and this 'goo' was different to the frothy 'gunk' of aspiration pneumonia, it really was weird, a lot thicker and not so stringy. God only knows what's going on, all's we all know is that it's just awful witnessing our loved ones going through living hell. Yes I have read about Cheyne-stokes previously, but I expected to hear the 'death rattle' i have read about and for him to have changed colour. But they didn't happen. I just wish him peace now and for all this to be over for him even though it will break my heart. So sad.

 

[LadyA]

Hi LadyA thank you for your post. Dad has had aspiration pneumonia a couple of times and this 'goo' was different to the frothy 'gunk' of aspiration pneumonia, it really was weird, a lot thicker and not so stringy. God only knows what's going on, all's we all know is that it's just awful witnessing our loved ones going through living hell. Yes I have read about Cheyne-stokes previously, but I expected to hear the 'death rattle' i have read about and for him to have changed colour. But they didn't happen. I just wish him peace now and for all this to be over for him even though it will break my heart. So sad.

Yes- I didn't mean the stuff was just from the pneumonia. I think it's something to do with the fact that they can no longer cough, or something. It sounds similar to what William had. Not everyone gets that different sound of breathing (the rattle). My dad didn't - we had to check to see if he had actually stopped breathing, he slipped away so quietly. Praying for strength and endurance for you. xx

 

[Red66]

Yes- I didn't mean the stuff was just from the pneumonia. I think it's something to do with the fact that they can no longer cough, or something. It sounds similar to what William had. Not everyone gets that different sound of breathing (the rattle). My dad didn't - we had to check to see if he had actually stopped breathing, he slipped away so quietly. Praying for strength and endurance for you. xx

Ah thank you for your post. I have reported to the NH that Dad looks like he has oral thrush, at first I thought it was all the horrible stuff still coating his tongue but even after oral hygiene it's still there. He is really going through the mill. I just hope they get the doctor today. But have a feeling they won't.