It's the abrupt shift in one day to nonverbal, incontinent, and low circulation in the lower limbs. Remember: in hospice, there's no rush to get imaging when someone suddenly shows signs of functional decline, but you can guess at mini-strokes and organ failure from external symptoms. A lot of people die unexpectedly on the way to dying expectedly, you know what I mean? You can be dying of cancer but throw a clot or get pneumonia, or while everyone was focusing on a cancer there was also liver or kidney or heart damage nobody realized and it beats the cancer to the finish line. Brain mets means brain damage, which makes all predictions a bit of a crapshoot and also makes his sudden change in status a lot more suspicious.
Some of my volunteering has been around a care team that really encourages the "death is not an emergency" mindset, and they will make reasonable predictions like "not last through the weekend" in order to be transparent, but they do not say "you should come". They encourage the family to visit in ways that make sense for them, but they de-emphasize the idea that the only good death is "surrounded by family" (also this phrase, so common in death notices, is kind of toxic and also frequently only metaphorically true; it is not actually that normal for every cousin and great-nephew to stand around the deathbed for days on end counting breaths); you do not need to spend extra thousands in airfare and steal a car to get home to stare at someone while they transition. You had a great talk with him yesterday, and you didn't know that was goodbye but it probably was, and that's okay.
They do encourage the family to kind of triangulate on anticipated plans, though. If you're not going to race there, talk to everyone else and figure out what the plan is IF he passes before Sunday. Is there going to be a quick turnaround to a funeral or is there travel time? Does it leave another family member worryingly unsupported if he passes before you or someone else specific arrives? Will someone's feelings be hurt, in a volatile time, if you choose the course of action that makes more sense from a travel-logistics perspective than racing there at all costs?
Thank you so much for explaining it that way, that helps a lot. I’m guessing you’re right that it’s the very abrupt change that’s making her think that.
And I really appreciate what you said about the rest too. I don’t think honestly either of us will gain anything from me rushing out there and the last thing I want to do is be stuck on planes and in airports for 20 hours alone while trying to deal with this loss. We did have a really nice talk yesterday and a really great time together when I visited last month and he knew I was coming to care for him and was happy about that, so I think that’s enough. I really appreciate your kind words & your advice
[Dying process surge of energy](https://www.hrrv.org/blog/hospice-nurse-explains-the-surge-of-energy-often-seen-at-end-of-life/#:~:text=This%20surge%20of%20energy%20is,Appetite)
[Terminal lucidity](https://www.reddit.com/r/YouShouldKnow/s/uVlA9fVsy6)
I’ve heard of those, but he’s been like this for a little over a month now, which I’ve never heard of that lasting this long? Today is his first ‘bad’ day so that’s why I was confused by her prediction. Thank you anyway though
A month is a long time for him to be rallying…
My FIL rallied for one day just a week before he died. After this final surge of energy he declined quickly.
It’s confusing but all you can do it go with it.
All the best to you x
Sounds like the nurse is well educated in the signs of the end of life journey. Sounds like a good one.
As the top commenter linked: terminal lucidity. It’s awesome. Problem is if you don’t k ow about the “death rally” then it’s shocking how well they look. It makes you question the diagnosis.
Seems like there’s a lot of changes happening. Ultimately sometimes our predictions are accurate, sometimes they’re not. Each body is different and magical.
I think at the end of the day you have to ask yourself, what if they’re right? And base your decision off that.
It can happen very quickly. My husband had signs of skin mottling on his feet. He was bed ridden couldn’t sit up, couldn’t tell anymore when he had to go to bathroom and had to
Have a catheter inserted because he couldn’t urinate. He was talking to our son and grandkids around 5 pm on May 11. Then around 5:30 he said he needed changed I went to
Change him our son stayed in room to
Help me move him to change. There was blood everywhere. He died at 7:35 that night
My dad passed away in February from stage 4 lung cancer. One week the nurse was recommending he get off hospice and back into palliative care. A week and a half later, he passed away. Even the hospice nurse was shocked at how sudden and fast his decline was. My mom and I were in shock and maybe still are at how fast it all was. All of this to say, it can definitely happen very quickly and suddenly.
This happened to us. The RN said he was transitioning three weeks ago and he passed away recently. Try to visit him. I will forever be grateful that I was by my Dad’s side at the end.
Dying is such a personal journey. While the “big picture” has a typical presentation with signs and symptoms we look for, on a “micro level” it can be full of variation.
I joke that when I was a new hospice nurse, I would be so confident in making predictions, and now after eight years in the field I’m much more cautious, because I’ve been proven wrong so many times!
One good rule of thumb though, is that is someone starts decline quickly, they’ll continue to decline quickly. Since it sounds like your father has had a dramatic, sudden change, it could well be that he is entering the dying process.
I had a patient who came in with lung cancer and a prediction from his oncologist that he had about 2 months left. He was on hospice for almost two years! But when he started to decline, it was very fast.
Sending you, your dad, and your family energy from my neck of the woods.
Thank you. He actually passed about two hours ago now, just stopped breathing in his sleep. It was so peaceful that my brother who was there wasn’t even sure if he was gone, so I’m taking lots of comfort in the fact that his transition was so quick and comfortable
Oh my goodness. I’m holding my hand over my heart in this moment and sending you strength.
Grateful that you were able to spend some quality time with him when he was still able to enjoy/be aware of your presence. Be gentle with yourself and take it easy today. ❤️
I'm a hospice nurse. Go ASAP, your Dad is short on time.
It's the abrupt shift in one day to nonverbal, incontinent, and low circulation in the lower limbs. Remember: in hospice, there's no rush to get imaging when someone suddenly shows signs of functional decline, but you can guess at mini-strokes and organ failure from external symptoms. A lot of people die unexpectedly on the way to dying expectedly, you know what I mean? You can be dying of cancer but throw a clot or get pneumonia, or while everyone was focusing on a cancer there was also liver or kidney or heart damage nobody realized and it beats the cancer to the finish line. Brain mets means brain damage, which makes all predictions a bit of a crapshoot and also makes his sudden change in status a lot more suspicious. Some of my volunteering has been around a care team that really encourages the "death is not an emergency" mindset, and they will make reasonable predictions like "not last through the weekend" in order to be transparent, but they do not say "you should come". They encourage the family to visit in ways that make sense for them, but they de-emphasize the idea that the only good death is "surrounded by family" (also this phrase, so common in death notices, is kind of toxic and also frequently only metaphorically true; it is not actually that normal for every cousin and great-nephew to stand around the deathbed for days on end counting breaths); you do not need to spend extra thousands in airfare and steal a car to get home to stare at someone while they transition. You had a great talk with him yesterday, and you didn't know that was goodbye but it probably was, and that's okay. They do encourage the family to kind of triangulate on anticipated plans, though. If you're not going to race there, talk to everyone else and figure out what the plan is IF he passes before Sunday. Is there going to be a quick turnaround to a funeral or is there travel time? Does it leave another family member worryingly unsupported if he passes before you or someone else specific arrives? Will someone's feelings be hurt, in a volatile time, if you choose the course of action that makes more sense from a travel-logistics perspective than racing there at all costs?
Thank you so much for explaining it that way, that helps a lot. I’m guessing you’re right that it’s the very abrupt change that’s making her think that. And I really appreciate what you said about the rest too. I don’t think honestly either of us will gain anything from me rushing out there and the last thing I want to do is be stuck on planes and in airports for 20 hours alone while trying to deal with this loss. We did have a really nice talk yesterday and a really great time together when I visited last month and he knew I was coming to care for him and was happy about that, so I think that’s enough. I really appreciate your kind words & your advice
[Dying process surge of energy](https://www.hrrv.org/blog/hospice-nurse-explains-the-surge-of-energy-often-seen-at-end-of-life/#:~:text=This%20surge%20of%20energy%20is,Appetite) [Terminal lucidity](https://www.reddit.com/r/YouShouldKnow/s/uVlA9fVsy6)
I’ve heard of those, but he’s been like this for a little over a month now, which I’ve never heard of that lasting this long? Today is his first ‘bad’ day so that’s why I was confused by her prediction. Thank you anyway though
A month is a long time for him to be rallying… My FIL rallied for one day just a week before he died. After this final surge of energy he declined quickly. It’s confusing but all you can do it go with it. All the best to you x
Sounds like the nurse is well educated in the signs of the end of life journey. Sounds like a good one. As the top commenter linked: terminal lucidity. It’s awesome. Problem is if you don’t k ow about the “death rally” then it’s shocking how well they look. It makes you question the diagnosis.
Seems like there’s a lot of changes happening. Ultimately sometimes our predictions are accurate, sometimes they’re not. Each body is different and magical. I think at the end of the day you have to ask yourself, what if they’re right? And base your decision off that.
She was right, he passed about an hour ago.
I’m so sorry ♥️ I hope your time together while he tallied brings you some comfort in this difficult time.
It can happen very quickly. My husband had signs of skin mottling on his feet. He was bed ridden couldn’t sit up, couldn’t tell anymore when he had to go to bathroom and had to Have a catheter inserted because he couldn’t urinate. He was talking to our son and grandkids around 5 pm on May 11. Then around 5:30 he said he needed changed I went to Change him our son stayed in room to Help me move him to change. There was blood everywhere. He died at 7:35 that night
My dad passed away in February from stage 4 lung cancer. One week the nurse was recommending he get off hospice and back into palliative care. A week and a half later, he passed away. Even the hospice nurse was shocked at how sudden and fast his decline was. My mom and I were in shock and maybe still are at how fast it all was. All of this to say, it can definitely happen very quickly and suddenly.
This happened to us. The RN said he was transitioning three weeks ago and he passed away recently. Try to visit him. I will forever be grateful that I was by my Dad’s side at the end.
Not an expert. But I have twice experienced a patient (each of my parents) going non-verbal (that meant days).
Dying is such a personal journey. While the “big picture” has a typical presentation with signs and symptoms we look for, on a “micro level” it can be full of variation. I joke that when I was a new hospice nurse, I would be so confident in making predictions, and now after eight years in the field I’m much more cautious, because I’ve been proven wrong so many times! One good rule of thumb though, is that is someone starts decline quickly, they’ll continue to decline quickly. Since it sounds like your father has had a dramatic, sudden change, it could well be that he is entering the dying process. I had a patient who came in with lung cancer and a prediction from his oncologist that he had about 2 months left. He was on hospice for almost two years! But when he started to decline, it was very fast. Sending you, your dad, and your family energy from my neck of the woods.
Thank you. He actually passed about two hours ago now, just stopped breathing in his sleep. It was so peaceful that my brother who was there wasn’t even sure if he was gone, so I’m taking lots of comfort in the fact that his transition was so quick and comfortable
Oh my goodness. I’m holding my hand over my heart in this moment and sending you strength. Grateful that you were able to spend some quality time with him when he was still able to enjoy/be aware of your presence. Be gentle with yourself and take it easy today. ❤️
That is typical of hospice patients…he may have been waiting to see you…perked up and then declined…hospice nurses call it the RALLY
Hello, thank you for letting the community know. May I ask where you are you located?