Well, this is a public board, and a section of the board accessible to anyone who wants to read it (not just FSU members). So I would ask posters to think before they post, and think about how negative comments on the quality of Jesse's care would make someone feel, if that person had participated in Jesse's care and came here to read the tributes to him.
You should never write words with numbers. Unless you're seven. Or your name is Prince. - "Weird Al" Yankovic, "Word Crimes"
I just feel sick to my stomach. No anger at anyone, just that this pain and passing had to happen. I'm glad I got to meet him, sit next to him and chat with him at London worlds. Sweet guy.
I didn't read every post but it seemed like Jesse wanted to be in the moment for as long as he could. I'm sure inside he knew the end was coming and in a sad way I'm sure many of us sensed it but he didn't seem the type to just send a goodbye note. Always seemed to be able to find the energy to fight just one more day...
Death is a deeply personal thing, with sort of a tragic beauty to it. I feel honored to have been given access to his journey and Mevrouw's several months ago. RIP you two beautiful beautiful people. I will never forget either of you.
How would you feel if you were a family member, reading some of this? Some of the comments could be read to imply his family members didn't advocate well enough, allowed him to be poorly cared for etc. None of this changes the fact that Jesse is gone, and that he meant something to all of us. I think it's insensitive for people to keep bringing it up, especially since none of us actually were there. Yes, some were frustrated Jesse was in pain, and frustrated that Jesse was frustrated. Knowing you're dying and being able to do nothing about it would be frustrating. For doctors and nurses there's sometimes a very fine line between medicating to reduce pain and euthanising. Jesse admitted at times that he didn't know what was supposed to be happening, that he felt he wasn't well cared for, but that could also be because he wanted a different outcome - something a little different to give him a chance, turned one more time, spoken to a little more nicely, something more or different to give him a fighting chance. We just don't know.
If *we* were frustrated just reading about it online, can you imagine how those who were there felt, watching someone they love die, and knowing it was inevitable? Private communication, good care, bad care, in between care, it doesn't make any difference now. It would be nice to remember the good things, and focus on what we do know - that Jesse died knowing he meant a lot to us at FSU, that we somehow gave him comfort with the thread he created, and that family and friends, and strangers all over the world, are mourning him.
I definitely see the concern that family members might think people are making judgments that they did not advocate for him. I don't think anyone here is suggesting that. We can vent about him not getting the care he said he wanted, but we should also consider that it is possible that he got the best care available. I hope he did. Since I wasn't there, I spent my time in Jesse's thread translating some of what I heard from Jesse into what I saw when I experienced the same kinds of things and took "stages of death" training at the hospice when my closest friend spent his last months and weeks. The experience was remarkably like the Kubler Ross model. I sure hope Jesse's experience was no worse than my friend's (who had great care), but I have no reason to believe it would be any better either.
When my friend was in the hospital before they stopped treatment and released him to hospice, I definitely saw that the doctors and nurses were treating the illness and not necessarily the patient. They told us he had no more than 6 months left and they politely, but coldly, told us to move him home. They probably couldn't get emotionally involved because they lose so many patients. I saw my friend lashing out at them for more care and more compassion when they just were not going to give it to him anymore. At the end, it was decided that he was not going be a breakthrough case, and he didn't need as much of their attention anymore. He was demanding care that they decided they were not going to make available to him. He was in the denial phase. It is a cold reality. Unspeakably awful. Armed with nothing more than a home hospice pamplet and a lot of pills, we moved him home. We thought it was the worst thing we'd seen until we saw what came next.
Anger came next. Anger about anything and everything. It is very, very common for the terminally ill to express anger at the care or the caretaker or the family because expressing anger at the illness won't illicit a response. He was mad about everything and nothing. First, we were taking shifts at his house, but his mother couldn't handle it. She didn't sleep a wink for days and days no matter who else was there to help. So we moved him to a hospice until we could figure out what was next. He agreed to stay two days, but that was it and he was furious about it. The hospice staff told us to be somewhat detached and nonjudgmental at this stage - the anger needs to go somewhere, and there is a lot of it. It is usually misplaced so they tell you not to react to it. Just tell the person he'll be taken care of (don't tell him he will be ok because he won't) and let him vent.
Next he was negotiating for things -- in this stage, they are trying to delay the inevitable. When Jesse wanted to go to Skate Canada, it reminded me of my friend trying to convince me to take him to Paris one last time when it was so clear that he couldn't travel. My friend declared that he would not die until he saw Paris again. Then he wanted to go to Florida, to live at his mom's house, and take his mattress so he could sleep in his own bed. The hospice was supposed to be for people who were around two weeks or less from death, and they thought he might have a couple of months in him so they said he could stay a week. I found a nursing home in Florida near his mother's house. It took me a week to find it, and as soon as I did, he asked to stay at the hospice if it would let his mom sleep. Good thing, he was detiorating fast so the hospice let him stay. A week before his death, when he could barely stand, he wanted me to bust him out to go see Gladiator (the movie). During all this, he was trying to buy more time. You try to let him realize on his own that he can't do these things, but when he doesn't, you have to tell him, no we can't do that.
Next he entered depression. Wouldn't you? Nothing was good enough -- he was totally uncomfortable, would complain about it, we'd try to fix it, he'd say there's no point in trying because sometime else would just hurt. His bed was awful. His sheets were awful. He couldn't eat, He wanted to eat, he didn't want to eat, he wanted to eat something different. We brought so much food in to no avail - at least the volunteers ate it. The TV didn't work. He wanted drugs, he didn't want drugs, he wanted different drugs, he wanted more drugs. This stage was very frustrating to the untrained - we didn't know the realm of what was possible. This lasted a long time. And there is no way the staff and his family could keep up with his requests. In the US, some hospices have a limited number of trained medical professionals who come in and out and administer or review the palliative care. The rest of the staff are volunteers (often students), and a few people who are trained in death/grief counseling as opposed to medicine. About 15 of his friends took shifts, even overnight, so his mother, stepfather, and sister could get some rest. We could have turned him over every 30 seconds, and it wouldn't have made him feel any better. He was dying. It was a helpless time.
When his lungs started filling with fluid, he was asking for more and more pain medicine. But the morphine can make you feel like you are drowning. And the horrible reality is that you are drowning. No amount of painkillers would have stopped it short of a lethal injection. It is painful to watch. But it is also time for the acceptance phase. He zoned out a lot even if someone was there with him. Just staring into space. You'd be surprised for how long he gasped for air when he could barely breathe. Finally, they suggested we go home because often the ill person fights death when people are there. Only his mother stayed - then he died.
Of course all of the stages overlap so you get angry negotiating and depressed negotiating etc. Bottom line is that the whole thing sucks even if you get the best care. Hospice people are a unique breed - they feel it is a privilege to share this experience with the dying and their families. I hope Jesse and his family had that.
They say people can have a "good death" if they can have a courageous and candid discussion about it. I think Jesse had a good death then.
Last edited by Rob; 11-11-2013 at 11:16 PM.
I think I will have a snack and take a nap before I eat and go to sleep.
Oh my goodness what a tragedy. For some reason his screen name popped into my mind the other day as someone I hadn't seen post in awhile. I remember watching his videos of him partnering some Diamond Dances and thinking, hmmm, that's someone I wouldn't mind trying a round of that dance with. So incredibly sad.
I haven't read any other posts just wanted to express my condolences to his family and skating family. Cancer is so evil.
Great post Rob!
I had a friend dying of pancreatic cancer who was so good about making it easier for her friends. The only thing she needed was for us to have flu shots and hold her hand during chemo. Her last Christmas she could only get down very watery mashed potatoes. We had to go to the washroom frequently. Love to all the friends and relatives of cancer victims and survivors.
Such a loss....
Wow, Rob, you really saw your friend's death up close and personal. You were a great friend to him.
My sister-in-law was just diagnosed with a recurrence of pancreatic cancer. She has survived at least 5 different types of cancers over the past 30 years but this one may be too tough to beat. It's a tough time of the year for me because it was around the same time my husband was diagnosed with his terminal cancer and he died 10 days before Christmas five years ago.
So sorry to hear that, euterpe. Your sister-in-law, your family, you're in my prayers.