Yes, it has been a while since I last posted: 131 days, to be precise. Unfortunately I’ve been busy, and haven’t been able to find any time to post, although I have a few in my head that I want to write. FWIW, I still consider this blog an ongoing concern, and I miss writing it. I miss the idea of crafting a good post, and while I’ve been waiting for my first one I’ve also enjoyed writing the stuff I’ve posted so far.
The following isn’t about autism, but it does explain my absence.
First, someone at my work decided that I should take on a new project - the same project that I haven’t had time to take on in the past couple of years. That person just happened to convince the company President and COO that this was a good idea, and that was that. Of course, new projects require project charters, which include details like business requirements (why are we doing this?) – too bad no one had any, so I had to make them up. The ironic thing was that there was an ongoing effort to get me out of my day job (which was the result of a past project that I was supposed to hand off – but the people I handed it off to screwed up and it landed back on my plate) to do something that the business really needed. But while no one could find a way to get me out of that role, they could somehow manage to find time for me to do a project for which no one could really answer ‘why are we doing this’?.
Timelines are also important. The part I liked best was when one Department said we need it by Date X. Isn’t it amazing how the amount of work required magically fit the required timelines – oops, not possible. My boss (on the org chart I reported to the Chief Marketing Officer, or CMO, but in reality I reported to the CFO – for the record I’m in neither Marketing nor Finance) kept telling me that the project timelines could reflect the amount of work involved and that he would convince the COO of this. But he seemed to give a slightly different message to the COO. So I wrote up the charter, with the full timelines, and it sat before the Management Board while they took months to approve it. Meanwhile, time was slipping away and the deadline wasn't and I was trying to move the project forward AND do my day job.
Then the owning company fired the COO, CMO, and CFO (surprise!), and their chief representative became the new President and COO. Everyone who reported to the CFO now reported to the COO – except me. That little detail about me reporting in theory to the CMO ensured that I now reported to his replacement, who held the position of head of a combined Marketing and Sales department. Did I mention that this was the person who said we needed the project completed by Date X?
Anyway, on to reason two (I’ll come back to reason one again). During this time, over Chrismas, my FIL died – theoretically of cancer, but in actual fact of starvation. He originally had felt uncomfortable after coming back from vacation nearly two years ago, and went to the doctor. The diagnosis – hepatitis. So he, my MIL and my BIL got their hepatitis shots, and wouldn’t you know it, but the diagnosis changed. Instead, there was a mass on his pancreatic duct (so how the #$%^ did they come up with hepatitis?).
He went in to the hospital to get a stent put in to allow him to eat while they figured out what to do next, and delayed things for a couple of weeks – all the while he couldn’t keep any significant amount of food down. Net result – he lost some weight. Then they decided to open him up and take out the mass. A three hour operation turned into six hours for a ‘whipple procedure’, in which they pretty much rebuilt his upper GI tract. But they thought they had got all of what turned out to be cancer. And guess what – he lost more weight. All through the winter and following summer he continued to slowly lose and gain weight (more loss than gain), and one of the biggest (he was a farm boy growing up – "strong like bull") and most vital people I knew was slowly wasting away. It wasn’t the chemo – he tolerated that very well – but he just couldn’t eat that much (no room and little stomach acid to digest what he could eat). But by the fall he was stable. He went off to Montreal for a big social event, and while there they got the phone call.
The cancer was back, and he was brought in for more chemo. And again he had trouble eating. It turned out that there was a constricting pressure on his ‘new’ GI tract that made it difficult for food to pass through (again). Since he wasn’t able to eat he began to lose weight more quickly.
He was brought into the hospital, supposedly to get a stent put in. He went in on Wednesday night for a Thursday procedure that was delayed. So he had to stay overnight again. And that was when they overdosed him on morphine.
His chart (we found out later) had him down for palliative care, rather than for the stent. And while he was in no pain, and told the nurse not to give him morphine (witnesses in the room clearly heard this) the nurse gave it to him anyway, saying that this way she would not have to come back later that night and give it to him then. She overdosed him, and he almost died. It took the weekend for him to (barely) recover, but he was not in any condition for the surgery for the first couple of days afterward. Meanwhile, he still wasn’t eating, and the most they would give him was a ‘fat pack’ on an IV.
It took over two weeks for the hospital to get round to putting in a stent. They kept dithering, not sure whether to do it or not, waiting for a cat scan, then more dithering. Should we put in a feeding tube? Well, that might enable cancer cells to spread into his stomach. Should we put him on chemo to kill the cancer cells? Well, no, because he wasn’t eating. Should we put in the stent? Well, it might not work and he needed the chemo. Meanwhile, he still wasn’t eating, and they weren’t giving him anything. He was literally starving.
My MIL and I ended up going to the hospital ombudsperson to get things moving, but apparently even that wasn’t enough. He was delayed again by the need for another cat scan (held up by that Chalk River incident), and when they got him in it didn't work because he was still full of barium from the last test (meanwhile the scarce isotopes that could have helped someone else were also wasted). Eventually they put in the stent, but by then he was really weak (remember, he had already been losing weight over the last year), and it didn’t work. He was still starving, and we had to keep insisting that he at least get a ‘fat pack’ IV. When he had this he was perfectly lucid and in no pain (other than from hunger). When they took him off of it he was barely there (probably without enough energy to power his brain).
The hospital called for a family meeting with his 'team' (sic). My SIL flew in from abroad with her 15 yo daughter (my niece), so she was there. My BIL, who was at school out of town, was also there, and I went in place of Momma Bear (she thought I’d have a better idea of what to do, and someone had to be available to look after the Bear). In the meeting they let us know he was at stage four. So why weren’t we told this earlier? My MIL would have taken him down to the Mayo Clinic had she have known, but by then it was too late. Did he want to go home? He murmured yes, but then the staff talked him and my MIL out of it, instead trying to push him into the palliative care wing of the hospital (where there was no space - he never made it), but in the meantime suggesting that they would give him better care than he could get at home. The doctor also told my MIL that if she didn’t like his care then she should get another doctor. This wasn’t the first time he told them this, but this time he told them in front of several hospital staff, as well as the family.
We also argued for IV feeding, to which the hospital grudgingly agreed – for five days! Apparently one’s veins cannot support a large IV for more than about five days (so they couldn’t find another vein?? Does he only have one?). This wasn’t “The Protocol” – and starvation was? – but they reluctantly did this. That night he was on an IV feed. The next day he became fully lucid again, and but didn’t remember the previous day’s meeting (for which he had no 'food').
Meanwhile, conditions got worse at the hospital. No one on the staff looked after him, and my MIL, SIL and BIL ended up doing shifts to make sure there was always someone with him, since the nurses rarely responded to the call button or offered any care. Momma Bear did overnight weekend shifts, as I was working and someone had to be home to meet the Bear out of school. If Momma Bear went down to the hospital she could only be there for a couple of hours at most, otherwise she might not be home in time for the school bus (and missing the bus was VERBOTEN). And we have no one where we live who could look after her as backup.
I won’t go into too much detail about the rest, but conditions were horrible at the hospital. Example – he had a fluid buildup that had to be drained every couple of days. My MIL noticed that one of the doctor’s was doing it differently and called him on it. Too bad. The end result was that he leaked fluid for the next couple of hours and soaked the bed. No one came to change the bed, so the family had to get him up and do it with the clean sheets that weren't provided. Another time they nearly overdosed him again. A nurse came in to give him his morphine and didn’t write it down. Ten minutes later another nurse came in and tried to give it to him again, but my BIL stopped her. The family had to bathe him, as the nurses didn’t. And then there’s the IV line. They finally agreed to put in a PIC (sp)?, which is a line into a major artery (or vein?) so they could give him a proper feeding tube. So they gave him the surgery to put in the PIC (painful and then uncomfortable), and then only rarely gave him a feeding bag. All the while he was still starving.
By mid December my work schedule was relaxing a bit (no boss and no organization to speak of as everyone tried to figure out what was going on with the new organization), so I could give more help looking after the Bear. So I worked at home until noon, then went into the office and came home around 7 PM. Momma Bear would head off to the hospital, come home around 4 AM, and would sleep until noon when the cycle began again. We did this until close to Christmas, when I was home and things relaxed a bit – although Momma Bear still had the same shift, and I took the Bear and pitched in with maintenance and shoveling at my MILs house. I took the Bear over to my mother’s for a very quiet Christmas (we normally spent it with my monther, FIL and MIL, and family), as Momma Bear’s family were in no mood to do anything (and they were all still doing shifts at the hospital). A few days later my FIL died. Did I mention that one of the last acts was for the doctor to prescribe him a suppository for his pain? But no one was there to administer it, so my SIL’s friend (a nurse) had to do it. What kind of place expects you to self-administer your own suppository in your last few hours on your deathbed?
And then there was the family BS that went along with all of this. A friend of mine said “What’s the definition of a dysfunctional family? One with two or more members.” My BIL and SIL both went after Momma Bear for not doing what they considered to be her share. Neither of them had any responsibilities other than for themselves (oh, and for a fifteen year old who could get her own food and hung out with my SIL’s nurse friend’s daughter). Meanwhile, I was still working and we had to tag team to look after the Bear, who requires significantly more care than a toilet trained 15 yo who knows how to get her own food and wipe her own bum (sorry, but I’m a bit peeved). A few minutes after my FIL died, my wife went over to the bed to be with him. My SIL came over and said “He’s dead now. Why are you still here?” My SIL’s nurse friend very quickly dragged my SIL away before Momma Bear could react (good thing, too).
BTW, did I mention that in the past Momma Bear quit her job and looked after my MIL’s mother (her Grandmother) for TEN years, while the rest of the family did close to nothing? The grandmother was a lot of work and had attitude (that's an understatement), and my wife did everything for her (bills, doctors, shopping, cleaning, outings, everything). No one else would help as the grandmother was more than just a bit of a handful. In the last year and a half of her life after we moved out of town my MIL and BIL finally pitched in. But Momma Bear didn’t do her share? Momma Bear also has some health issues of her own and is now quite worn out.
Anyway, back to the office. By the new year the new President and COO started to find out what I could do and what my experience was in my past life (meant not in a Shirley MacLean sense, but in former jobs at other companies), and assigned me to head his pet project. So now I was reporting half of the time to him - unofficially - and the other half to the CM&SO, with two big projects. And wouldn’t it figure that my role on the COO’s project led me into the opposite side of a series of major decisions with the CM&SO. Fun times for all! Eventually (two weeks ago), my reporting relationship landed in one place (the COO). The first project was put on hold (no, it hasn’t vanished - that's what summers are for), and now I only have one big project, plus a new role, plus the CM&SO indicating that things aren’t moving fast enough on work he wants from me, and I’m still responsible for my old role as I’m trying to train up two other people to take it over.
So I’ve been busy, Momma Bear is worn out and needs more support, and I’m only now beginning to find some time to post to my blog. As I said above, I have a few posts in my head that I want to write, and hopefully I can find the time to do so soon. But I’ve been a little busy.