I have a question about death/dying...

[cbwm1]

DH's uncle is in the final stages of glioblastoma. The beginning of June would have been 6 years since diagnosis, so it's amazing he's made it this far.

I just got a text from MIL that today marks day three or not eating/drinking.

How long might we expect before he passes away? I know it's different for every person.

He's sleeping almost all the time, his speech and cognitive function are completely gone, and he can hardly move at all.

DH keeps asking how long, and I just don't know what to tell him.

[robyn]

Does he have hospice? Both times I've been involved with hospice (mom and grandpa) they've been pretty accurate with their estimates of how long each had. With my mom, IIRC, she passed away about 4 or 5 days after she completely stopped eating/drinking. But she had stopped speaking probably 2-3 weeks prior to that and hadn't been out of her bed for a month and a half-ish. I'm so sorry for your DH and family, watching someone in this capacity is heart breaking.

[hopecounts]

Does he have hospice care?
IME experienced hospice nurses are pretty accurate at giving a timeframe.

My Gran lived like that for 2 weeks but there are so many variables it's hard to guess.

[cbwm1]

May 18, 2017 12:35:43 GMT -5 robyn said:

Does he have hospice? Both times I've been involved with hospice (mom and grandpa) they've been pretty accurate with their estimates of how long each had. With my mom, IIRC, she passed away about 4 or 5 days after she completely stopped eating/drinking. But she had stopped speaking probably 2-3 weeks prior to that and hadn't been out of her bed for a month and a half-ish. I'm so sorry for your DH and family, watching someone in this capacity is heart breaking.

Yes, hospice is on board. If they've said how long it'll be, no one's saying.

And thank you.

[TR]

Oh gosh, I'm so sorry. I lost an uncle to glioblastoma, although he lived less than a year from diagnosis. With no drinking, I can't imagine it will be long (like days) unless he's getting IV fluids which I assume he's not and that he's just getting palliative care.

[cbwm1]

May 18, 2017 12:36:39 GMT -5 TR said:

Oh gosh, I'm so sorry. I lost an uncle to glioblastoma, although he lived less than a year from diagnosis. With no drinking, I can't imagine it will be long (like days) unless he's getting IV fluids which I assume he's not and that he's just getting palliative care.

I don't think he's getting fluids. In fact, I don't think he's even getting pain meds, as he's not having any pain.

[kristie]

I mean, I work in hospice and I am always hesitant to give an answer because it can vary so much. I have seen people go two weeks past the no eating or drinking point, but it's usually within a few days.

[Deleted]

My educated guess would be days to weeks.

[wambam]

With my grandmother, it was about a week from that point.

[imojoebunny]

MIL lasted 5 days in that state. She was not receiving anything, other than morphine. Sorry you are going through this. Wishing peace for your uncle.

[nicechicken]

I'm so sorry, my FIL died of glioblastoma, he only made it two years.

He fell one night and hit his head, he was gone less than 4 hours later.

I'm so so sorry.

[karinothing]

I am so sorry. Hospice told us that you can usually look at how fast the person changes and relate it to how long they have left. If they get worse by the week, it is weeks left. By the day, it is days, and so on.

[aprilsails]

My Grandma lasted 6 days in hospice with only a morphine drip. She also slept most of the time.

[cbwm1]

May 18, 2017 12:39:18 GMT -5 kristie said:

I mean, I work in hospice and I am always hesitant to give an answer because it can vary so much. I have seen people go two weeks past the no eating or drinking point, but it's usually within a few days.

Thank you for this response. Do most patients usually have a point where they rally for a bit and then pass after?

[donthasslethehoff]

I am so sorry. My grandmother stopped eating and drinking, and hospice said she'd live another 3-4 days. She lived for another 10 after those 3-4 days. It's variable.

[katiescarlett]

My grandpa passed away in the fall from lung cancer. He was in a state like that for about 3 or 4 days before he passed. I'm sorry you guys are going through this.

[cbwm1]

May 18, 2017 12:43:04 GMT -5 @pnkbride said:

Hospice should be able to give you a better time frame. From what you are saying, I wouldn't think he has much longer.

DH's family is weird about stuff. We love them dearly, but they're never forthcoming with medical info. As it is, we're getting infomation from MIL, who's getting it from Uncle's husband.

[birdmom]

With FIL, I asked hospice and they gave me an accurate answer. I don't remember exactly, but it seems like they said three days to a week, and it was almost exactly three days. I do remember them telling us that hearing was the last thing to go, so we talked to him continuously. So sorry

[stella1802]

I know someone in Hospice that went 4 weeks with no food, 5 days with no water. It can very so much, it is really hard to know.

[mcsangel2]

My dad entered Hospice on a Monday, was not given any water or food, just morphine. He passed late Thursday night that same week (and he was unconscious from Tuesday on). Although the doctor told us Thursday morning that he could last as long as a week (I'm so thankful he was wrong).

[themysteriouswife]

It can be hours or weeks. It's really going to be on the person. My aunt went quickly and my grandma lasted days.

I'm so sorry your family has to deal with this.

[kicks]

May 18, 2017 12:39:18 GMT -5 kristie said:

I mean, I work in hospice and I am always hesitant to give an answer because it can vary so much. I have seen people go two weeks past the no eating or drinking point, but it's usually within a few days.

Ditto.
It also depends on their diagnosis.

OP, thoughts to your family.

[jennistarr1]

I'm really really sorry. When this was happening with my mom I so desperately did not want to know...ah, let me not go there

My really roundabout estimate is 2 weeks, the hospice provided a pamphlet that gave some guidelines and markers but I barely could read that as it was happening but in hindsight it's accurate

how does knowing the timeline help you/DH? (that keeps sounding bad no matter how I type it)...are you trying to time a visit?

[jennistarr1]

May 18, 2017 12:40:16 GMT -5 nicechicken said:

I'm so sorry, my FIL died of glioblastoma, he only made it two years.

He fell one night and hit his head, he was gone less than 4 hours later.

I'm so so sorry.

I literally jerked when I read that...gosh I"m so sorry

[greenlight]

My uncle died from glioblastoma. Once he reached the no eating/drinking stage, it was about a week until he passed. Hospice care kept him comfortable until the end.

I must say that 6 years past diagnosis is an absolute miracle. My uncle died within 3 months.

I'm so very sorry.

[jennistarr1]

May 18, 2017 12:44:06 GMT -5 cbwm1 said:

May 18, 2017 12:39:18 GMT -5 kristie said:

I mean, I work in hospice and I am always hesitant to give an answer because it can vary so much. I have seen people go two weeks past the no eating or drinking point, but it's usually within a few days.

Thank you for this response. Do most patients usually have a point where they rally for a bit and then pass after?

This did not happen for my mom but I've definitely read (on here) stories like this, usually involving a particular intervention, steroids, maybe?

[cbwm1]

May 18, 2017 12:51:04 GMT -5 jennistarr1 said:

I'm really really sorry. When this was happening with my mom I so desperately did not want to know...ah, let me not go there

My really roundabout estimate is 2 weeks, the hospice provided a pamphlet that gave some guidelines and markers but I barely could read that as it was happening but in hindsight it's accurate

how does knowing the timeline help you/DH? (that keeps sounding bad no matter how I type it)...are you trying to time a visit?

This is going to make me sound like the world's biggest asshole, but I swear I'm not.

My dear, dear friend is getting married next weekend and then Memorial Day week, we have a trip planned with a non-refundable deposit put down.

In hindsight, we shouldn't have planned the trip for when we did.

So more than anything, I'm just trying to wrap my head around what to do at this point.

Uncle made it very clear that he didn't want any family around when he got to this point, so we went up to MI at the end of March when he was still active and able to speak a bit, and said our goodbyes then.

[kristie]

May 18, 2017 12:44:06 GMT -5 cbwm1 said:

May 18, 2017 12:39:18 GMT -5 kristie said:

I mean, I work in hospice and I am always hesitant to give an answer because it can vary so much. I have seen people go two weeks past the no eating or drinking point, but it's usually within a few days.

Thank you for this response. Do most patients usually have a point where they rally for a bit and then pass after?

Some do, some don't. Some talk up until the end, some are unresponsive for days. I have seen someone who I thought had a few months die after a few hours, and I have seen someone who I thought only had hours go for weeks. This is why I won't answer the how long question. Death and birth are not exact sciences. Medical people can help you through the process as much as possible, but there is so much we don't control or even know.

[Leeham Rimes]

I'm so sorry.

MIL passed pretty quickly once she stopped waking/eating/drinking. I think it was only 2-3 days.

ETA: she died 6 months after being diagnosed with stage IV lung cancer, so I don't know if how quick she went is related to that.

[MixedBerryJam]

I'm sorry. My H had GBM IV (17 months from dx) and by the time he stopped eating and was sleeping all the time it was days. Single digit days. We had in-home hospice for maybe 6 weeks, then one day he had a seizure (remarkably, this was his first seizure), was moved to residential hospice, and died within 36 hours. He was still conscious when he went into residential hospice, but couldn't really communicate anymore other than nonverbally. I will pray for peace for your family.

ETA: Also, I'm recalling now that he was sitting in a chair watching TV when he had the seizure, so he wasn't sleeping all the time at that point. But once that seizure happened it was fast.