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  1. #161
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    Quote Originally Posted by Rob View Post
    ....whole post....
    Thank you, Rob. Thank you.
    What you wrote will resonate with me for some time. It reminded me of when my cousin (also Rob) was in the hospice, but only a few of us visited. He taught me so much, and died with dignity and grace.

  2. #162
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    Thanks for the rep everyone. Hope you never have to experience it, but there is good literature if you do. It helped me feel like I had done what I could.

    Euterpe how awful, please let us know if you need someone to listen. My dad died just before Xmas too (unexpectedly, not a long illness) so I know the strange feeling of associating Xmas carols with grief.
    I think I will have a snack and take a nap before I eat and go to sleep.

  3. #163
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    Quote Originally Posted by Rob View Post
    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.
    Rob, thank you. My friend who died of pancreatic cancer, he went back to his home in France for treatment (where he was finally diagnosed) so we knew nothing about his day-to-day near the end. We did know that he often shut himself in his room most of the day, because he was in so much pain and would snap at his family members in that state, and he didn't want to do that to them.

    It's so hard, it's just so hard. But I believe that everyone does their best. You did, surely, for your friend.

    Quote Originally Posted by euterpe View Post
    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.
    ((HUGS))

  4. #164

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    Quote Originally Posted by euterpe View Post
    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.
    I'm sorry about all this, euterpe, and hope that you're getting a lot of love and support during this time.

    I have to ask regarding your sister-in-law - has she and the family undergone any sort of genetic testing? I don't know what types of cancer she has had, but there may be an underlying condition, in which case, early detection for anyone at risk would be a good idea.

  5. #165
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    Quote Originally Posted by Rob View Post
    Thanks for the rep everyone. Hope you never have to experience it, but there is good literature if you do. It helped me feel like I had done what I could.
    Rob, I am so sorry that you had to experience that. But, I am so happy for your friend that he had a friend, like you. Thank you for sharing your story.

    Euterpe, I am so sorry for your SIL.

    Quote Originally Posted by Zemgirl View Post
    I'm sorry about all this, euterpe, and hope that you're getting a lot of love and support during this time.

    I have to ask regarding your sister-in-law - has she and the family undergone any sort of genetic testing? I don't know what types of cancer she has had, but there may be an underlying condition, in which case, early detection for anyone at risk would be a good idea.
    Excellent advice!

  6. #166

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    (((euterpe))))

    Can anyone reiterate what Jesse's other YouTube channels were? I know there were 1 or 2 others besides the Spazacataz account that show more of his skating, and I think they were probably mentioned in his original thread but are now buried there.
    BARK LESS. WAG MORE.

  7. #167
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    Thanks for your long and detailed post, Rob. I have been lucky in that my family and close friends have been relatively healthy. I can't help but feel that my destiny is to get closer to illness and death via experiences like this and with Mevrouw. I feel these are all tests and learning for me becuase I will be called upon and needed by my loved ones in the future. I hope when the time comes I'm as prepared to embrace the challenge as I feel I can be.

    Thanks to all for sharing.

  8. #168

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    I send my support to all here who are dealing with similar issues.
    I know how difficult it is, through personal experience.

    Everyone copes differently; and there are multiple ways to do so.
    Each person must decide the approach best for them.

  9. #169
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    Is there anyone near enough that plans to attend the memorial tomorrow? If so, would you mind sharing your thoughts on the service with us?

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    I also hope that someone nearby can go.
    Much of the town may attend, which is a testament to the impact of Jesse's life.

  11. #171

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    Duplicate.

  12. #172

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    Quote Originally Posted by LilJen View Post
    (((euterpe))))

    Can anyone reiterate what Jesse's other YouTube channels were? I know there were 1 or 2 others besides the Spazacataz account that show more of his skating, and I think they were probably mentioned in his original thread but are now buried there.
    The only other one I know about is xskaterdude.

    Prayers to Jesse's family as the hour for his service approaches. Hopefully all the emotion will bring them a little catharsis.

  13. #173

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    Quote Originally Posted by LilJen View Post
    (((euterpe))))

    Can anyone reiterate what Jesse's other YouTube channels were? I know there were 1 or 2 others besides the Spazacataz account that show more of his skating, and I think they were probably mentioned in his original thread but are now buried there.
    Are these the channels you mean from Jesse's thread? post 106 http://www.fsuniverse.net/forum/show...ituation/page6

    Jesse was a fabulous skater and his spreadeagle is awesome

    I do hope the memorial service for Jesse brings some comfort to his family and that the crystal star will shine brightly. (((Spaz family)))
    'The one. The only. Daisuke Takahashi ' Chris Howarth, EurosportUK

  14. #174

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    Thank you for all your kindness and prayers, FSUers. Yes, my husband's family has had genetic testing which found Lynch syndrome, a deadly cluster of cancers. One branch of the family has been nearly wiped out, some in their early 30s. One of my daughters has the gene and one doesn't; my son refuses to be tested for the gene but undergoes annual screening.

    Having the gene requires constant vigilance and testing. My sister-in-law survived ovarian, uterine, thyroid and colon cancer over a 30-year span until finally the disease got to her pancreas. The initial diagnosis was two years ago. They removed part of her pancreas and did a year of chemo. She was OK until recent tests disclosed a recurrence. She was having surgery today to determine if further surgery is possible. If not, she will have more chemo.

  15. #175
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    I pray that all goes well today.

    I am very close to someone with Lynch Syndrome. At 24 she found out she had colon cancer. She had to have 80% of her colon removed. Thankfully, they were able to reconstruct without her needing a colostomy bag. And there were no lymph nodes involved. But, she has to have a colonoscopy every 4 months. A PAP smear every 4 months. And other frequent screenings. She has frequent stomach pain and her immune system is not as strong as it should be. She is unaware of who, in her family, may have passed on the gene. She is not from the US and her family's records are not available. From my understanding the most common Lynch associated cancers are gastrointestinal and reproductive. Though, I suppose there is no set in stone rule with any cancer.

    One of the biggest problems with Lynch Syndrome is that it effects people so young. Often the cancer goes undiagnosed too long, because doctors don't expect to find cancer in such young people. That was the case with my loved one. She had pain for almost a year before they finally did a scan and found the mass. They kept looking for IBS and Crones, or thinking it was psychological.

  16. #176

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    Quote Originally Posted by Spun Silver View Post
    The only other one I know about is xskaterdude.

    Prayers to Jesse's family as the hour for his service approaches. Hopefully all the emotion will bring them a little catharsis.
    Quote Originally Posted by skatefan View Post
    Are these the channels you mean from Jesse's thread? post 106 http://www.fsuniverse.net/forum/show...ituation/page6

    Jesse was a fabulous skater and his spreadeagle is awesome

    I do hope the memorial service for Jesse brings some comfort to his family and that the crystal star will shine brightly. (((Spaz family)))
    Thanks. I was thinking there might be another but can't remember it. I think even *he* had forgotten it until someone else found it! I could be totally wrong. ((Smith family and friends))
    BARK LESS. WAG MORE.

  17. #177
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    That was a great post (rob) I would have never been able to say that so well. My mother died in July at home (alz) and it was very hard to keep up with her care at times. Even with caregivers and hospice.

  18. #178
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    The friend of mine who was in hospice care had quite a different experience than what Rob described that her friend had. I wasn't there, since my friend, who entered hospice care four months before she died, had decided to see a limited number of people while there, and one was designated as the official news giver. The news giver was very straightforward -- we're talking New Yorkers here -- and gave pointed updates. The overall gist was that while my friend did go through some the psychological stages Rob describes -- she was diagnosed a couple of months before she entered hospice care, and during that time she went through the rest -- there was as much emphasis on psychological care as there was physical care. While the medical staff was adept at treating patients sensitively, they were not the primary psychological care givers. There was also the recognition that when a patient is dealing with bad news or decisions of any kind, a data dump wasn't very useful; they were careful to give as much as the patient could handle and process at the moment, and they were also vigilant about revisiting the possibilities for treatment and non-treatment throughout the limited span of the patient's life. My friend was also in charge of pain management, in which she was able to self-administer pain killers in lower dosages without relying upon medical staff to respond to calls.

    The news giver told us after our friend died that she had become more of an observer/logistics person in the second half, as our friend focused on her fellow patients.

    My friend had pancreatic cancer, and I'm not suggesting that hospice care made her physical death any prettier.

    There was also a hospice in Seattle called Bailey Boushay House which had a great reputation during the AIDS crisis, with a lot of community support/volunteers, which also meant a lot of hands on participation and watchful eyes. Some friends this weekend weren't sure whether it still had the same reputation, since there are so many fewer AIDS patients, and the patients served now are much more diverse now with less community involvement.
    Last edited by kwanfan1818; 11-13-2013 at 12:55 AM.
    "The team doesn't get automatic capacity because management is mad" -- Greg Smith, agile guy

  19. #179
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    A couple weeks ago, Jesse asked me to paint a portrait of him & Porki, as a Christmas present for his mom. I'm shipping it out to her today. I dearly hope it does him justice, and brings her some comfort & memories of better times. SO many thanks to the other members who donated to cover the costs of framing and shipping, and coordinated all of that so I could just focus on getting the painting done. If you'd like to see the finished portrait, here is the link:

    http://www.flickr.com/photos/52326237@N05/10841100545/

  20. #180

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    Omg, so that's what he looks like, he looks like Jeffrey Buttle imho. Gorgeous painting, backspin, and what a nice surprise and early Christmas gift it will be for his mom! *insert heart emoticon*

    This reminds me of the time I was at college, and a special close friend of mine asked me to hold onto the pictures she took over the summer (she was like a little sister to me; I was her orientation instructor when she was a freshman), and she asked me if she could borrow $5 that Friday night so she could go out with her boyfriend, then later on in the early morning September hours as I was sitting in the dorm (I was the R.A.) I heard the news that she & her boyfriend had gotten into a horrific motorcycle accident (neither was wearing a helmet). And their families pulled the plug on their life support less than a week later. Well after sending her mom & siblings a bouquet of flowers, I remembered those 50+ pictures she had me hold onto, and I wrote a heartfelt long letter to her mother about Kim and sent the pictures along with it, hoping they would be a nice gift/surprise for her from Kim.

    God works in mysterious ways...

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