Those of you who know me IRL, or on Facebook already know most of this post, but it's taken me a while to get it up here. Partially lack of time and tiredness, partially not wanting to say all the same things one more time.
Dad W. died early Monday morning.
The last few days, he went down incredibly fast. We moved him into the nursing home around the corner from us Wed. night. Thursday we had the Hospice intake interview. Friday we had the lawyer in and Dad signed all the various necessary paperwork (Will, PoA, Living Will, etc.), and we had the intake interview with the Hospice chaplain. By Saturday, he could not have managed the signings, as his lucid intervals weren't long enough (I took his smallest dog by to see him, and in the 90 minutes we were there, he said two comprehensible sentences, one of which seemed hallucinatory.) Sunday he wasn't lucid at all, and was no longer interested in food or fluids at all. At that point we knew it wouldn't be long, but were still expecting that he would last another day or two. Instead we got a 2am call from the nursing home.
It's been a whirlwind since then. Monday was funeral homes and calling what felt like 90 million people to tell them the news, all while staggering around like zombies on about 2 hours of sleep. Tuesday I took Dad's eldest dog to the vet and had him put to sleep (this is the 15-year-old, blind, deaf, paralyzed, arthritic dachshund that probably has cancer of his own). It wasn't really what I needed to deal with that day, but since I felt that Rascal should have been put to sleep about three months ago, I couldn't see dragging him out until I had a "better" time. Wednesday I and the boys drove down to Tennessee, where we were going to hold the funeral. Also, Aaron got sent home from school sick (throwing up), which complicated things in a couple of directions - not least being that I wasn't entirely sure I'd be able to go until an hour or so before we left. Thursday was the funeral, followed by driving back up. Today was starting to deal with Dad's personal effects, collecting the death certificate, and generally trying to sort out what needs doing from here.
The actual funeral went pretty well. It was small (about nine people, including us), and fairly short, but nice, except for a somewhat gratuitous jab by the presiding minister. Pastor Bobby seems like a generally nice fellow, but he's Pentecostal, and by his lights neither Rob nor Doug are properly saved - so him making much of Dad having a "proper" baptism done by him about two years back didn't exactly go over well. Otherwise, he did all right, mainly sticking to Dad anecdotes and scripture. Doug spoke and read the Serenity Prayer, Rob opted not to speak (probably wise, as he was still seething over the baptism thing), and I opted to sing instead of speak - How Lovely Are Thy Dwellings - which came out somewhat wobbly, but in tune (the people who hadn't heard me sing before just thought I had a moderate vibrato). The service ended up with Robbie and Aaron tossing the first few shovelfulls of dirt into the grave.
This weekend I'm mainly planning on staying home and being comatose. I don't think I've been this tired since the time in college I stayed up for five days straight. I'm still debating whether to go to church Sunday and face the inundation of shocked sympathetic people (Based on sympathy card arrival, it looks like the news started spreading there right after I talked to my organ teacher Thursday morning), or to skip a week.
Oh - and in random silliness, it looks like somebody needs to talk to HR at Rob's workplace about the florist they use for these occasions. Because the giant calladium with big fake purple roses staked in it was a real WTF? moment.
Saturday, April 24, 2010
Saturday, April 17, 2010
Quickie
Having just realized I haven't updated in a while...
First off - Bill, I know you're trying to get hold of me. I've been scrambling around like a madwoman this week. I should be mostly available Sunday, except for possibly needing to be at the airport from about 2-3:30pm EST.
Yikes! Checking back for the last entry, so much has happened it feels like a whole different life.
The big changes:
1) PET scan results came back. The primary tumor is bigger - much bigger (it was about the size of an orange to start with). Worse, it's metastasized into the lungs, and possibly the brain - though we have no proof of the latter.
2) His doctors universally agree that there's nothing left they can do for the cancer. The remaining prognosis is a few days to a few weeks.
3) Dad W. spent most of the last week in the hospital with aspiration pneumonia - he had a crash of his condition that had to be seen to be believed. He is now recovering from that, but nobody is sure where the improvement of the departing pneumonia will meet the decline from the progressing cancer. He's currently sleeping about 22 hours a day, and is only intermittently coherent when awake.
4) We did (finally!) manage to get the various useful end-of-life legal documents done, signed, and attested to. This was, in fact, almost two full days of work, due to the intermittent coherency. It takes an unbelievably long time to read twenty pages of legal documentation to someone, and make sure they understand it, when their coherent periods are about five minutes long.
5) Dad W. has been moved to a nursing facility around the corner from our house (literally less than 2 minutes away). We had to ditch his supplemental insurance to do it, but heck - it's not like he has other things to spend his retirement fund on, right? There was no way he could come back home - not without completely renovating our downstairs - and he didn't want to stay in the hospital until he died. Plus, the new place allows me to bring the dogs to visit (one at a time).
6) We've called in Hospice, and they sent their first evaluator today. It was a little surreal, but I did like the guy. I had to grind my teeth a couple of times - such as when he asked Dad if he'd discussed end-of-life issues with his family, and Dad replied "I've tried, but they don't listen!" As if he hasn't been dodging that subject with all the agility of a fencer for the last six months. Or likewise, when they asked about problematic issues, and he said he had a problem with how dependent he's become. This from the man who will ask me to push the nurses' call button for him, because it's too much trouble. (It's strapped to the bed about 2" from his left hand.) Dad finds it disturbing when he can't do something - but he sure as hell has no problem with me doing stuff for him if it's even a tiny bit difficult.
And now the dilemma of the week. As of this morning, I have legal authority to take Rascal to the vet and have him put down. I feel, very strongly, that I ought to do this. In my opinion Rascal should have been put down three months ago. The poor dog has no quality of life left. On the other hand, there's no doubt at all that Dad W. would disapprove of this decision wildly - and what the Power of Attorney is for is letting me make the decisions I believe Dad W. would want.
On the gripping hand - Dad W. is so turned inwards by this point that he doesn't talk about the dogs or ask about them at all - ever. If I bring Scooter by to visit, he enjoys the visit, but unless I bring up the dogs, he doesn't ask after them. Am I obligated to keep this poor, ancient, decrepit dog alive because Dad W. would want me to, even though he doesn't seem to care, wouldn't ever know, and chose freely to give me the legal power to do otherwise?
I guess that wasn't such a quickie after all. Posting will probably be uneven for the next little bit, for obvious reasons.
First off - Bill, I know you're trying to get hold of me. I've been scrambling around like a madwoman this week. I should be mostly available Sunday, except for possibly needing to be at the airport from about 2-3:30pm EST.
Yikes! Checking back for the last entry, so much has happened it feels like a whole different life.
The big changes:
1) PET scan results came back. The primary tumor is bigger - much bigger (it was about the size of an orange to start with). Worse, it's metastasized into the lungs, and possibly the brain - though we have no proof of the latter.
2) His doctors universally agree that there's nothing left they can do for the cancer. The remaining prognosis is a few days to a few weeks.
3) Dad W. spent most of the last week in the hospital with aspiration pneumonia - he had a crash of his condition that had to be seen to be believed. He is now recovering from that, but nobody is sure where the improvement of the departing pneumonia will meet the decline from the progressing cancer. He's currently sleeping about 22 hours a day, and is only intermittently coherent when awake.
4) We did (finally!) manage to get the various useful end-of-life legal documents done, signed, and attested to. This was, in fact, almost two full days of work, due to the intermittent coherency. It takes an unbelievably long time to read twenty pages of legal documentation to someone, and make sure they understand it, when their coherent periods are about five minutes long.
5) Dad W. has been moved to a nursing facility around the corner from our house (literally less than 2 minutes away). We had to ditch his supplemental insurance to do it, but heck - it's not like he has other things to spend his retirement fund on, right? There was no way he could come back home - not without completely renovating our downstairs - and he didn't want to stay in the hospital until he died. Plus, the new place allows me to bring the dogs to visit (one at a time).
6) We've called in Hospice, and they sent their first evaluator today. It was a little surreal, but I did like the guy. I had to grind my teeth a couple of times - such as when he asked Dad if he'd discussed end-of-life issues with his family, and Dad replied "I've tried, but they don't listen!" As if he hasn't been dodging that subject with all the agility of a fencer for the last six months. Or likewise, when they asked about problematic issues, and he said he had a problem with how dependent he's become. This from the man who will ask me to push the nurses' call button for him, because it's too much trouble. (It's strapped to the bed about 2" from his left hand.) Dad finds it disturbing when he can't do something - but he sure as hell has no problem with me doing stuff for him if it's even a tiny bit difficult.
And now the dilemma of the week. As of this morning, I have legal authority to take Rascal to the vet and have him put down. I feel, very strongly, that I ought to do this. In my opinion Rascal should have been put down three months ago. The poor dog has no quality of life left. On the other hand, there's no doubt at all that Dad W. would disapprove of this decision wildly - and what the Power of Attorney is for is letting me make the decisions I believe Dad W. would want.
On the gripping hand - Dad W. is so turned inwards by this point that he doesn't talk about the dogs or ask about them at all - ever. If I bring Scooter by to visit, he enjoys the visit, but unless I bring up the dogs, he doesn't ask after them. Am I obligated to keep this poor, ancient, decrepit dog alive because Dad W. would want me to, even though he doesn't seem to care, wouldn't ever know, and chose freely to give me the legal power to do otherwise?
I guess that wasn't such a quickie after all. Posting will probably be uneven for the next little bit, for obvious reasons.
Sunday, April 04, 2010
The Cry of "Wolf"
I had a few thoughts last night about The Boy Who Cried "Wolf!" - ways in which I hadn't considered the story before. Not surprising, since I don't usually engage in deep analysis of fairy tales unless required to by a teacher.
The story is told from the point of view of the boy. Makes sense, since the moral and warning are intended for people who would yell alarms too soon. But that means that the other dilemma in the story isn't addressed. After all, the villagers in the story probably don't want their shepherd eaten, even if he is an idiot from time to time, and they definitely don't want to lose their sheep - that's the whole point of putting a shepherd out there in the first place!
So what are the poor villagers to do when wolves are a real danger, but their only warning system gives them way too many false positives. How do you tell when the wolf really is among the sheep?
This is part of the dilemma we've been having with Dad W. He does have cancer; it's definitely life-threatening; it can cause a lot of symptoms, many of which aren't obviously cancer-related. But he's also a man who has trouble distinguishing annoying things one can and should push through from the medically dangerous. Up until just recently most of his symptoms have been the result of his poor condition and debilitation, rather than from the cancer. I've spent months muttering under my breath about the idiots down in the hospital in TN (the same ones who were treating Mom W. - isn't that reassuring?), who let him stay in bed for five days right after his biopsy. He lost huge amounts of mobility and muscle tone in those five days, and he never got them back. But instead of realizing how his lack of activity was contributing to his debilitation and pushing to get it back, Dad attributed it to the cancer, and his response to getting fatigued doing simple things was to rest more: which led to a downhill spiral of doing less and less as he lost the ability to do the things he had stopped doing because they were tiring.
So how do Rob and I as his caregivers figure out when his fatigue and immobility is self-induced, and we should push him to do more, and when it's really a sign of cancer progression, and we should drag him back to the oncologist?
This last couple of weeks, I think I'm seeing a cancer decline. Dad is deeply fatigued - he can spend 18-20 hours a day sleeping, not just sitting or lying down as he used to, but actually asleep. His skin tone is awful - a yellow/gray shade that makes him look like a walking corpse. He's running low-grade fevers more nights than not, sometimes with accompanying vomiting - and he doesn't wake up when he starts throwing up. He's nearly choked to death in the middle of the night twice in the last week. He's started hiccuping several hours out of every day.
Rob still thinks most of this is a continuation of his inactivity decline (except the fevers, but he thinks the failure to wake up, and inability to roll over when he's woken up are inactivity). He and Dad are still optimistic about what yesterday's PET scan will show. (Dad doesn't remember the night-time vomiting, and is having serious trouble tracking time, so he's not aware of just how much time he's spending asleep.) I'm not. I think we've finally hit the point, where if we hadn't tripped over Dad W's cancer back in the fall; if he had never had those five days of bed rest, and had maintained his mobility - we would be looking for and finding the cancer.
I think this time, the cry of "wolf!" is real. And with cancer in the liver, it's not usually long from a genuine cry of "wolf!" until there's not much left to do.
The story is told from the point of view of the boy. Makes sense, since the moral and warning are intended for people who would yell alarms too soon. But that means that the other dilemma in the story isn't addressed. After all, the villagers in the story probably don't want their shepherd eaten, even if he is an idiot from time to time, and they definitely don't want to lose their sheep - that's the whole point of putting a shepherd out there in the first place!
So what are the poor villagers to do when wolves are a real danger, but their only warning system gives them way too many false positives. How do you tell when the wolf really is among the sheep?
This is part of the dilemma we've been having with Dad W. He does have cancer; it's definitely life-threatening; it can cause a lot of symptoms, many of which aren't obviously cancer-related. But he's also a man who has trouble distinguishing annoying things one can and should push through from the medically dangerous. Up until just recently most of his symptoms have been the result of his poor condition and debilitation, rather than from the cancer. I've spent months muttering under my breath about the idiots down in the hospital in TN (the same ones who were treating Mom W. - isn't that reassuring?), who let him stay in bed for five days right after his biopsy. He lost huge amounts of mobility and muscle tone in those five days, and he never got them back. But instead of realizing how his lack of activity was contributing to his debilitation and pushing to get it back, Dad attributed it to the cancer, and his response to getting fatigued doing simple things was to rest more: which led to a downhill spiral of doing less and less as he lost the ability to do the things he had stopped doing because they were tiring.
So how do Rob and I as his caregivers figure out when his fatigue and immobility is self-induced, and we should push him to do more, and when it's really a sign of cancer progression, and we should drag him back to the oncologist?
This last couple of weeks, I think I'm seeing a cancer decline. Dad is deeply fatigued - he can spend 18-20 hours a day sleeping, not just sitting or lying down as he used to, but actually asleep. His skin tone is awful - a yellow/gray shade that makes him look like a walking corpse. He's running low-grade fevers more nights than not, sometimes with accompanying vomiting - and he doesn't wake up when he starts throwing up. He's nearly choked to death in the middle of the night twice in the last week. He's started hiccuping several hours out of every day.
Rob still thinks most of this is a continuation of his inactivity decline (except the fevers, but he thinks the failure to wake up, and inability to roll over when he's woken up are inactivity). He and Dad are still optimistic about what yesterday's PET scan will show. (Dad doesn't remember the night-time vomiting, and is having serious trouble tracking time, so he's not aware of just how much time he's spending asleep.) I'm not. I think we've finally hit the point, where if we hadn't tripped over Dad W's cancer back in the fall; if he had never had those five days of bed rest, and had maintained his mobility - we would be looking for and finding the cancer.
I think this time, the cry of "wolf!" is real. And with cancer in the liver, it's not usually long from a genuine cry of "wolf!" until there's not much left to do.
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