Jonathan's Story
Viewing comments for Chapter 22 "Between a rock and a hard place"Our fostering journey with a severely disabled boy
26 total reviews
Comment from kahpot
I see now and understand, the only way you would have agreed to tube feeding, is because Jonathon was deprived of the enjoyment of eating,
"My husband and I finally agreed with each other to accept that he would need to be tube-fed.
I heard Sheryl's voice pleading with me to not let tube-feeding happen - how could I forget her words? I felt that I had failed her, had not fulfilled her deathbed wish. More than that, I felt I would be failing Jonathan."
(this was very sad to read,) I am sorry they have worn you down (with stupidity) and a severe lack of understanding****kahpot
reply by the author on 20-Mar-2024
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I see now and understand, the only way you would have agreed to tube feeding, is because Jonathon was deprived of the enjoyment of eating,
"My husband and I finally agreed with each other to accept that he would need to be tube-fed.
I heard Sheryl's voice pleading with me to not let tube-feeding happen - how could I forget her words? I felt that I had failed her, had not fulfilled her deathbed wish. More than that, I felt I would be failing Jonathan."
(this was very sad to read,) I am sorry they have worn you down (with stupidity) and a severe lack of understanding****kahpot
Comment Written 20-Mar-2024
reply by the author on 20-Mar-2024
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Thank you Kahpot. Yes, their refusal to give him tasty food which he would enjoy eating resulted in his eating and drinking only minimally. In the end tube-feeding was a medical necessity to save his life. Yes, they wore me down, and cornered me. But, they still had not got rid of me. Thank you so much for going back to find this story. I appreciate your care and compassion, and your interest a great deal.
Wendy
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My interest and your story are heart felt
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Thank you so much!!!
Comment from Spitfire
I found this painful to read. I agree that if eating was the one thing that gave him pleasure, forget puree food and tube feeding. We predicted my dad's death when the nursing home made the decision for tube feeding.
I feel for both you and Jonathan.
reply by the author on 19-Mar-2024
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I found this painful to read. I agree that if eating was the one thing that gave him pleasure, forget puree food and tube feeding. We predicted my dad's death when the nursing home made the decision for tube feeding.
I feel for both you and Jonathan.
Comment Written 19-Mar-2024
reply by the author on 19-Mar-2024
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Thank you Shari. You understand perfectly. Tube feeding robs everyone of quality of life, in my opinion. I am so sorry for your father. Thank you for reviewing. It's always appreciated.
Wendy
Comment from LJbutterfly
I know it weighed heavily on your heart to be forced to go against Sheryl's dying wishes to NOT tube feed her son. The established organization ALWAYS has the upper hand in choosing whatever will be the least effort on their part. The CEO and Health Care Team threatened you and left you with NO options.
I'm glad you are telling this story, revealing how charitable organizations do whatever they want to continue to receive government funding, including shoving patients through their systems.
reply by the author on 19-Mar-2024
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I know it weighed heavily on your heart to be forced to go against Sheryl's dying wishes to NOT tube feed her son. The established organization ALWAYS has the upper hand in choosing whatever will be the least effort on their part. The CEO and Health Care Team threatened you and left you with NO options.
I'm glad you are telling this story, revealing how charitable organizations do whatever they want to continue to receive government funding, including shoving patients through their systems.
Comment Written 19-Mar-2024
reply by the author on 19-Mar-2024
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Thank you so much - your understanding and compassion are both very special and meaningful to me. I appreciate this very supportive review. Yes, it did weight very heavily on me, and still does.
Wendy
Comment from T B Botts
Hello Wendy,
You obviously did all that you could possibly do for Jonathon. The problem with having people from the government in charge of so many things, they have all the authority and money to back them up, and when in their vanity and arrogance they fail, they don't have to answer to anyone, they just go on their merry way to ruin more lives. I'm furious that this happened. Thanks for sharing.
Blessings,
Tom
reply by the author on 19-Mar-2024
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Hello Wendy,
You obviously did all that you could possibly do for Jonathon. The problem with having people from the government in charge of so many things, they have all the authority and money to back them up, and when in their vanity and arrogance they fail, they don't have to answer to anyone, they just go on their merry way to ruin more lives. I'm furious that this happened. Thanks for sharing.
Blessings,
Tom
Comment Written 18-Mar-2024
reply by the author on 19-Mar-2024
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Thank you very much Tom. I appreciate your very caring review. The government wasn't in charge of the home, but because it was a private enterprise to look after disabled people (and it was initially a charity) they did receive some government funding. But even so they didn't have to answer to anyone. After all, when the disabled young people died, the disability service still wasn't questioned because it was always said that such severe disabilities cause people to die young, and "It's just one of those things". But I wonder if some deaths could have been prevented. Quality of life is only important to them if it doesn't cause any inconvenience.
Thank you again for supporting me in writing his story. It means a great deal.
Wendy
Comment from Pearl Edwards
Perhaps they should have tried the tube feeding on the CEO and his health team first, seeing as though they though they had all the answers. It sounds like it was always what was convenient for them. A sad mark on how the system let Jonathon down. Well told, Wendy, you did your best.
cheers,
valda
reply by the author on 19-Mar-2024
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Perhaps they should have tried the tube feeding on the CEO and his health team first, seeing as though they though they had all the answers. It sounds like it was always what was convenient for them. A sad mark on how the system let Jonathon down. Well told, Wendy, you did your best.
cheers,
valda
Comment Written 18-Mar-2024
reply by the author on 19-Mar-2024
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Yes, convenience was very important to them, plus extra funding. Thank you very much for a supportive and very understanding review. Many thanks too for the six stars - that's very special and valued always.
Wendy
Wendy
Comment from w.j.debi
Truly, a rock and a hard place. Poor Jonathan was the one who paid the consequences. It seems pretty obvious that they were more interested in their convenience than his quality of life. Oh, how unfair was their attack on you!
reply by the author on 19-Mar-2024
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Truly, a rock and a hard place. Poor Jonathan was the one who paid the consequences. It seems pretty obvious that they were more interested in their convenience than his quality of life. Oh, how unfair was their attack on you!
Comment Written 18-Mar-2024
reply by the author on 19-Mar-2024
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Thank you for such a kind and caring review. Yes, the vulnerable are the victims, the disabled and also the elderly likewise. So hard to see them being taken advantage of.
Wendy
Comment from Mintybee
Sometimes there is no good answer. Like you say, a rock and a hard place... I'm sure you made the best you could. Your care for Jonathan comes through loud and clear. It's obvious you fought for him as long as you could. Your story is terribly sad and frustrating, but sometimes we all hit that point in life where we just can't fight anymore. You captured the feeling of helplessness, care, love and regret perfectly. I'm so sorry you went through that.
Mintybee
reply by the author on 18-Mar-2024
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Sometimes there is no good answer. Like you say, a rock and a hard place... I'm sure you made the best you could. Your care for Jonathan comes through loud and clear. It's obvious you fought for him as long as you could. Your story is terribly sad and frustrating, but sometimes we all hit that point in life where we just can't fight anymore. You captured the feeling of helplessness, care, love and regret perfectly. I'm so sorry you went through that.
Mintybee
Comment Written 18-Mar-2024
reply by the author on 18-Mar-2024
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Thank you very much Mintybee. Such a caring and compassionate review.
Wendy
Comment from Jim Wile
Sounds like you were completely out of options at this point, and you made the only realistic decision you could. It's such a shame when people in charge like that can be so callous about their charges and think only of their own convenience. I hate it when things like the monetary incentive of the government paying for the tube feeding guides the health decisions made.
If there's such a thing as karma, let's hope that medical director is someday forced to be tube-fed so she can see what it's like to lose one of life's great pleasures--the ability to enjoy your food.
This is a shocking expose of greed, incompetence, egotism, and narcissism by people in a field poorly suited to them. And to try to defend their actions by putting the blame on you is just unconscionable, Wendy. This organization deserves to go bankrupt to match the condition of their souls.
reply by the author on 19-Mar-2024
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Sounds like you were completely out of options at this point, and you made the only realistic decision you could. It's such a shame when people in charge like that can be so callous about their charges and think only of their own convenience. I hate it when things like the monetary incentive of the government paying for the tube feeding guides the health decisions made.
If there's such a thing as karma, let's hope that medical director is someday forced to be tube-fed so she can see what it's like to lose one of life's great pleasures--the ability to enjoy your food.
This is a shocking expose of greed, incompetence, egotism, and narcissism by people in a field poorly suited to them. And to try to defend their actions by putting the blame on you is just unconscionable, Wendy. This organization deserves to go bankrupt to match the condition of their souls.
Comment Written 18-Mar-2024
reply by the author on 19-Mar-2024
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Thank you so very much Jim. Spot-on in your comments. It was unconscionable behaviour in my opinion, but they were so sure they were right in everything. I appreciate your caring and kind words.
Wendy
Comment from karenina
Oh, Wendy. I feel your broken heart and want to rage against bueracracy.
They think only in terms of decreasing liability, increasing profits and manipulation of caretakers to the point of laying the guilt of Jonathan's death upon you if you resisted any further!
You fought the good fight. I am certain through all of this Jonathan knew you love him and had made it your priority to advocate for him!
The system is brutal. When all else fails they threaten to displace him!
You didn't "give" your consent. It was coerced!
Karenina
reply by the author on 18-Mar-2024
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Oh, Wendy. I feel your broken heart and want to rage against bueracracy.
They think only in terms of decreasing liability, increasing profits and manipulation of caretakers to the point of laying the guilt of Jonathan's death upon you if you resisted any further!
You fought the good fight. I am certain through all of this Jonathan knew you love him and had made it your priority to advocate for him!
The system is brutal. When all else fails they threaten to displace him!
You didn't "give" your consent. It was coerced!
Karenina
Comment Written 18-Mar-2024
reply by the author on 18-Mar-2024
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Yes, the system is brutal - and very powerful. And yes, consent was coerced. I'd been backed into a corner, manipulated and bullied. But the fight was not yet over! Thank you so much for your thoughtful and caring review. I am fortunate to have friends on this site, who understand and validate my writing this story. The six stars are very special and affirming. Thank you again.
Wendy
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I have been moved by Jonathan's story, framed by your love and commitment, from chapter one.
Comment from royowen
I would have taken it to the media, not that they are particularly compassionate, but love to attack sensitive health care complaints, they are despicable in their disregard, it's tough to fight them they were blackmailing you, well done, blessings Roy
reply by the author on 18-Mar-2024
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I would have taken it to the media, not that they are particularly compassionate, but love to attack sensitive health care complaints, they are despicable in their disregard, it's tough to fight them they were blackmailing you, well done, blessings Roy
Comment Written 18-Mar-2024
reply by the author on 18-Mar-2024
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Thank you Roy. A kind and supportive reviewYes, I could have, but it would have been more than a half hour segment for me to expose all the bullying and manipulation that they had done and the things they had done and not done. And the media cannot enforce anything .... but they took another step ... and went too far.
Wendy
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I can see.