DNR orders

[Selena_Kitt]

My dad fell on Christmas morning on the ice and broke his foot. He's in his early 60's, diabetic, has PAD (peripheral artery disease), has had high blood pressure since he was in his 20's, is 80 lbs overweight, and has undergone both a corotid artery surgery and a quadruple bypass in the past ten years...

So, they did a surgery on his foot, put a plate in. And a day after he was home, he had what they thought was a stroke or a blood clot. This was three days ago. Things looked okay at first - he couldn't talk and had a hard time swallowing (they gave him one of those "suckie" things like dentists use for the saliva...) but he was lucid and alert, and could respond, nod or shake his head, when asked questions.

Now... however...

The doctor finally defined this incident as a "large stroke." (My mom said "massive" - I think it makes her feel better to say "massive" - but my sister and niece heard "large.") They want to put him on a breathing machine and a feeding tube now. But when he was lucid (two days ago) he said no machines, no tubes. (He's always said no machines, no tubes...)

But he's not lucid anymore - can't nod or blink anymore. He's deteriorating quickly. His lungs are full of fluid because he can't swallow. The usual dose of the meds to clear them - 20 units - they doubled to 40. It didn't work. They doubled that to 80 units. It didn't work. Which led my niece (an ICU nurse) to believe his kidneys weren't functioning even though the blood levels showed they were. Now they're talking about dialysis. They want to put in a tube to feed him (directly into the stomach, instead of through the nose, which they can only do for a week.) My sister, her husband and my niece all sat down with Mom and the ICU doc (I'm still sick, and so are the kids, so I can't go) and talked about all this, after which my mom signed a DNR and said no tubes.

My nephew is mad - he says we should put in all the tubes and let him heal and get better. But the docs are saying, because of his other conditions (diabetes, triglycerides, high blood pressure, previous surgeries, circulation issues) the meds they'd normally prescribe wouldn't work, and they have to go other routes. They say they don't know how much functionality he will be able to regain even if we do put him on the machines.

But the thing I keep coming back to is the not talking. He can't communicate. The only thing he lives for is communication, frankly, and I think he knew, when he couldn't talk, couldn't swallow, that his "life" was basically over. Honestly, I think he knew it last week when we talked before his foot surgery and he told me he wanted to hold out to see this baby. He mentioned that his heart doc had told him two months ago, she wanted to do some sort of surgery, going in through the groin, because things weren't "circulating properly." He refused, he told me, because he was afraid he'd die during the surgery, and he wanted to see the baby first. I think he knew he was going to go, one way or another, before then, and didn't want it to happen. His one regret maybe.

But I think he's clear, now that this has happened, or at least he was, when he could make that call, that he doesn't want to stick around anymore. That it's time.

He's right handed. His whole right side is shot. He can't write well with his right hand anyway (he's dyslexic and never learned to read or write past a 4th-5th grade level), let alone trying to re-learn with his left. He can't read to begin with, he's nearly functionally illiterate, even with his one good eye. He can't swallow, so he can't eat. (The man lives to eat!) He can't talk - and I mean, seriously, who could ever shut him up before? That's all he does is talk and argue and debate! And the only way he could use his beloved computer before the stroke was doing it voice-activated - because of his dyslexia and learning disablities. Now that he can't talk, he couldn't use it at all.

It seems to me that anything that might motivate him to keep going is pretty much gone, and he knows it. And he's just going to be really pissed off a few months down the road if we DO put him on machines against his wishes and he DOES recover some capacity and awareness. Like we want my mom having to take care of an incapacitated, pissed-off dad who can't communicate? What good does that do anyone? Ugh.

I told my mom I was fine with honoring his wishes. And that no one could make another call (i.e. putting him on machines) except her, but if she did, I would understand that, too. She said she didn't want to be alone - and I said it wasn't about being alone, because my sister and her husband would take her in in a heartbeat - it was about not having a partner, really about not having DAD. That was apparently the perfectly right or wrong thing to say, I guess, depending on your perspective, because then she had to go cry... which she said she hadn't really done yet. So I let her go do that.

I imagine his last days will be this week or next, if she doesn't make another decision than the one she's already made.

 

[impressive]

{{{HUGS}}} Tough time. I admire you for wanting to honor your father's wishes.

 

[Chantilyvamp]

*hugs loads* A tough call but it was his wishes and he was lucid and responding when he said that. Many many prayers and hugs.

 

[Belegon]

My thoughts are with you and your family and I admire your willingness to honor his wishes... that is so very hard.

 

[christabelll]

((((((((((SELENA)))))))) so sorry about the news. Huge Hugs and tons of respect.

 

[CrimsonMaiden]

*hugs*

 

[neonlyte]

That's a tough call, Selena. I believe you are right in suggesting he'd regard his life as over if he has to rely upon everyone to function. I'm reasonably certain he'd want to be remembered for the person he was, rather than the person he became. Very difficult to interpret an individuals wishes, it seems to me he made his decision when he remained lucid; none the less, iot is still a brave call. Courage.

 

[rgraham666]

Aw, crap. *HUGS*

 

[cloudy]

Selena, I'm so, so sorry....but I admire your strength.

Three days before my father died, I begged him not to go. I wasn't ready to face life without him at 22. He said, "Surely you don't want me to continue on, living with this pain."

He was right, and I was being selfish. Your family is doing the right thing.

 

[dr_mabeuse]

God, that's tough, Selena. A terrible decision to have to make, a terrible loss to have to suffer.

I live in terror of strokes. The idea of being imprisoned in my own body horrifies me. There comes a point where life isn't worth living, where it isn't even life.

I think you're doing the right thing, and I wish and hope for all the best.

--Zoot

 

[Huckleman2000]

That's terribly difficult. I suspect I'll be going through something similar within the next few years - my Dad made out a "living will" and sent it around to all of us kids a few years ago, also with the DNR stipulated. I think we all support him, but when the moment comes, I hope we all have your courage.

If he doesn't live to see your birth, perhaps some of his life will seep into your child. That would be a comforting thought, I hope.

 

[Boxlicker101]

((A big hug, but a careful one becauase of the baby ) ) ) I think giving your father what he wants is the right thing to do. I'm actually older than he is, and I know that's how I would feel.

I think most people are opposed to what are sometimes called "heroic measures." I know both my mother and father, who died in their Eighties, and I and almost everybody I hear from or know feel that way. There comes a time to go, and it's best we go when that time arrives.

 

[Guest]

My dad fell on Christmas morning on the ice and broke his foot. He's in his early 60's, diabetic, has PAD (peripheral artery disease), has had high blood pressure since he was in his 20's, is 80 lbs overweight, and has undergone both a corotid artery surgery and a quadruple bypass in the past ten years...

So, they did a surgery on his foot, put a plate in. And a day after he was home, he had what they thought was a stroke or a blood clot. This was three days ago. Things looked okay at first - he couldn't talk and had a hard time swallowing (they gave him one of those "suckie" things like dentists use for the saliva...) but he was lucid and alert, and could respond, nod or shake his head, when asked questions.

Now... however...

The doctor finally defined this incident as a "large stroke." (My mom said "massive" - I think it makes her feel better to say "massive" - but my sister and niece heard "large.") They want to put him on a breathing machine and a feeding tube now. But when he was lucid (two days ago) he said no machines, no tubes. (He's always said no machines, no tubes...)

But he's not lucid anymore - can't nod or blink anymore. He's deteriorating quickly. His lungs are full of fluid because he can't swallow. The usual dose of the meds to clear them - 20 units - they doubled to 40. It didn't work. They doubled that to 80 units. It didn't work. Which led my niece (an ICU nurse) to believe his kidneys weren't functioning even though the blood levels showed they were. Now they're talking about dialysis. They want to put in a tube to feed him (directly into the stomach, instead of through the nose, which they can only do for a week.) My sister, her husband and my niece all sat down with Mom and the ICU doc (I'm still sick, and so are the kids, so I can't go) and talked about all this, after which my mom signed a DNR and said no tubes.

My nephew is mad - he says we should put in all the tubes and let him heal and get better. But the docs are saying, because of his other conditions (diabetes, triglycerides, high blood pressure, previous surgeries, circulation issues) the meds they'd normally prescribe wouldn't work, and they have to go other routes. They say they don't know how much functionality he will be able to regain even if we do put him on the machines.

But the thing I keep coming back to is the not talking. He can't communicate. The only thing he lives for is communication, frankly, and I think he knew, when he couldn't talk, couldn't swallow, that his "life" was basically over. Honestly, I think he knew it last week when we talked before his foot surgery and he told me he wanted to hold out to see this baby. He mentioned that his heart doc had told him two months ago, she wanted to do some sort of surgery, going in through the groin, because things weren't "circulating properly." He refused, he told me, because he was afraid he'd die during the surgery, and he wanted to see the baby first. I think he knew he was going to go, one way or another, before then, and didn't want it to happen. His one regret maybe.

But I think he's clear, now that this has happened, or at least he was, when he could make that call, that he doesn't want to stick around anymore. That it's time.

He's right handed. His whole right side is shot. He can't write well with his right hand anyway (he's dyslexic and never learned to read or write past a 4th-5th grade level), let alone trying to re-learn with his left. He can't read to begin with, he's nearly functionally illiterate, even with his one good eye. He can't swallow, so he can't eat. (The man lives to eat!) He can't talk - and I mean, seriously, who could ever shut him up before? That's all he does is talk and argue and debate! And the only way he could use his beloved computer before the stroke was doing it voice-activated - because of his dyslexia and learning disablities. Now that he can't talk, he couldn't use it at all.

It seems to me that anything that might motivate him to keep going is pretty much gone, and he knows it. And he's just going to be really pissed off a few months down the road if we DO put him on machines against his wishes and he DOES recover some capacity and awareness. Like we want my mom having to take care of an incapacitated, pissed-off dad who can't communicate? What good does that do anyone? Ugh.

I told my mom I was fine with honoring his wishes. And that no one could make another call (i.e. putting him on machines) except her, but if she did, I would understand that, too. She said she didn't want to be alone - and I said it wasn't about being alone, because my sister and her husband would take her in in a heartbeat - it was about not having a partner, really about not having DAD. That was apparently the perfectly right or wrong thing to say, I guess, depending on your perspective, because then she had to go cry... which she said she hadn't really done yet. So I let her go do that.

I imagine his last days will be this week or next, if she doesn't make another decision than the one she's already made.

 

[drksideofthemoon]

I think your family is making the right decision, I'm a firm believer in "Quality of Life" being more important than "Quantity of Life".

 

[tickledkitty]

Selena, I'm so sorry. This is so hard. FWIW, I think your family is doing the right thing. You'll be in my thoughts and prayers.

 

[Selena_Kitt]

Thanks, everyone. I've always been a believer in an individual's right to choose life, or not, in any form. Guess it's time to put my money where my mouth is...

If he doesn't live to see your birth, perhaps some of his life will seep into your child. That would be a comforting thought, I hope.

Funny, I told hubbie, if that whole karmic wheel reincarnation thing is true, this baby better only get the best parts. Not the stubborn, rigid Taurus parts! I barely survived those through my teen years!

Sometimes I think I got the best parts of my dad - I know he was both proud and in some ways envious of my degree(s) and my writing and ability to communicate, considering he couldn't read or write well because of his learning disabilities. He was incredibly intelligent, actually... he just couldn't take that intelligence out into the world the way he wanted. Whatever switch that was turned "off" in his brain that limited his abilities in those areas, wasn't in mine.

But it's a lovely thought, Huck. Thanks.

 

[_Lynn_]

**hugs**


We had a similar situation with my mom and honored her wishes without hesitation.

 

[Katyusha]

*major hugs* I can't imagine how difficult all this is, but I admire you for wanting to honor your father's wishes.

 

[jomar]

I concur with others sentiments here and hope send you thoughts and prayers...

 

[john-the-author]

Dear Selena:

I've been through something very much like this with a beloved grandmother, who chose to turn her feeding tube off. She was completely lucid and sharp as a tack, but she wasn't able to do any of the things she liked anymore, and said "This isn't what I signed up for!" (That was her quote, though certainly not her last words. ) She turned off her food and water and died a week later. I still miss her, but she was smarter than I was and certainly wiser; it was her choice and no-one else's.

I think you're doing the right thing, but >>>DAMN<<< it's hard.

Hugs, petal.

John

 

[elfin_odalisque]

Thanks, everyone. I've always been a believer in an individual's right to choose life, or not, in any form. Guess it's time to put my money where my mouth is...

Funny, I told hubbie, if that whole karmic wheel reincarnation thing is true, this baby better only get the best parts. Not the stubborn, rigid Taurus parts! I barely survived those through my teen years!

Sometimes I think I got the best parts of my dad - I know he was both proud and in some ways envious of my degree(s) and my writing and ability to communicate, considering he couldn't read or write well because of his learning disabilities. He was incredibly intelligent, actually... he just couldn't take that intelligence out into the world the way he wanted. Whatever switch that was turned "off" in his brain that limited his abilities in those areas, wasn't in mine.

But it's a lovely thought, Huck. Thanks.

My heart goes out to you. I've been there and my only advice is to make sure you make your decisions for the benefit of your dad. Being kept alive because science can do it is sometimes a selfish decision on our part to postpone losing someone we love to pieces whilst we wrestle with all the unfinished issues.

There's this unspoken contract with our next of kin that, we brought you up and bandaged your knee when you fell over so please take the same 'parental' care with us when talking with the medics when we can't.

As my mother told me - and I accepted - she trusted me to show her respect and not let us lose our human dignity. Despite tears, that's what I tried to do in her final illness.

The baby will get the parts that you and hubby instill and you will have to include in that the requirement to treat you with the same selfless care you give to your dad.

 

[trysail]

SK,
This is tough stuff; I've been through it. Fortunately, the parent made it perfectly clear— in writing, in words and well in advance— that independence, vitality and quality of life were the most important considerations. I'd be lying if I didn't say that made the whole process a lot easier.

To others:
Anybody and everybody who wants to help their caregivers with these kinds of decisions should absolutely, positively execute and liberally distribute the proper legal form of advance directives/living will/DNR ( individual state laws differ ).

Communicate your wishes NOW; if you don't, it'll be too late and I absolutely promise you that things will get confused and murky when the time comes— potentially leading to outcomes you never wanted or intended, notwithstanding the best intentions of your caregivers/family.

 

[voluptuary_manque]

What Trysail said. When Dad came down with Alzheimer's, he knew it and he made damned sure before he became to confused to know anything that under no circumstances was he to be keep beating and breathing on some machine. He was absolutely sure that all death means is Going Home and he was ready. He did.

 

[CharleyH]

My dad fell on Christmas morning on the ice and broke his foot. He's in his early 60's, diabetic, has PAD (peripheral artery disease), has had high blood pressure since he was in his 20's, is 80 lbs overweight, and has undergone both a corotid artery surgery and a quadruple bypass in the past ten years...

So, they did a surgery on his foot, put a plate in. And a day after he was home, he had what they thought was a stroke or a blood clot. This was three days ago. Things looked okay at first - he couldn't talk and had a hard time swallowing (they gave him one of those "suckie" things like dentists use for the saliva...) but he was lucid and alert, and could respond, nod or shake his head, when asked questions.

Now... however...

The doctor finally defined this incident as a "large stroke." (My mom said "massive" - I think it makes her feel better to say "massive" - but my sister and niece heard "large.") They want to put him on a breathing machine and a feeding tube now. But when he was lucid (two days ago) he said no machines, no tubes. (He's always said no machines, no tubes...)

But he's not lucid anymore - can't nod or blink anymore. He's deteriorating quickly. His lungs are full of fluid because he can't swallow. The usual dose of the meds to clear them - 20 units - they doubled to 40. It didn't work. They doubled that to 80 units. It didn't work. Which led my niece (an ICU nurse) to believe his kidneys weren't functioning even though the blood levels showed they were. Now they're talking about dialysis. They want to put in a tube to feed him (directly into the stomach, instead of through the nose, which they can only do for a week.) My sister, her husband and my niece all sat down with Mom and the ICU doc (I'm still sick, and so are the kids, so I can't go) and talked about all this, after which my mom signed a DNR and said no tubes.

My nephew is mad - he says we should put in all the tubes and let him heal and get better. But the docs are saying, because of his other conditions (diabetes, triglycerides, high blood pressure, previous surgeries, circulation issues) the meds they'd normally prescribe wouldn't work, and they have to go other routes. They say they don't know how much functionality he will be able to regain even if we do put him on the machines.

But the thing I keep coming back to is the not talking. He can't communicate. The only thing he lives for is communication, frankly, and I think he knew, when he couldn't talk, couldn't swallow, that his "life" was basically over. Honestly, I think he knew it last week when we talked before his foot surgery and he told me he wanted to hold out to see this baby. He mentioned that his heart doc had told him two months ago, she wanted to do some sort of surgery, going in through the groin, because things weren't "circulating properly." He refused, he told me, because he was afraid he'd die during the surgery, and he wanted to see the baby first. I think he knew he was going to go, one way or another, before then, and didn't want it to happen. His one regret maybe.

But I think he's clear, now that this has happened, or at least he was, when he could make that call, that he doesn't want to stick around anymore. That it's time.

He's right handed. His whole right side is shot. He can't write well with his right hand anyway (he's dyslexic and never learned to read or write past a 4th-5th grade level), let alone trying to re-learn with his left. He can't read to begin with, he's nearly functionally illiterate, even with his one good eye. He can't swallow, so he can't eat. (The man lives to eat!) He can't talk - and I mean, seriously, who could ever shut him up before? That's all he does is talk and argue and debate! And the only way he could use his beloved computer before the stroke was doing it voice-activated - because of his dyslexia and learning disablities. Now that he can't talk, he couldn't use it at all.

It seems to me that anything that might motivate him to keep going is pretty much gone, and he knows it. And he's just going to be really pissed off a few months down the road if we DO put him on machines against his wishes and he DOES recover some capacity and awareness. Like we want my mom having to take care of an incapacitated, pissed-off dad who can't communicate? What good does that do anyone? Ugh.

I told my mom I was fine with honoring his wishes. And that no one could make another call (i.e. putting him on machines) except her, but if she did, I would understand that, too. She said she didn't want to be alone - and I said it wasn't about being alone, because my sister and her husband would take her in in a heartbeat - it was about not having a partner, really about not having DAD. That was apparently the perfectly right or wrong thing to say, I guess, depending on your perspective, because then she had to go cry... which she said she hadn't really done yet. So I let her go do that.

I imagine his last days will be this week or next, if she doesn't make another decision than the one she's already made.

Having been through all of this three times over, and really recently, all I can do is offer a tight, lingering hug. A REALLY TIGHT ONE.

 

[sadangel]

Just hugs. <angel hugs galore>