Jonathan's Story
Viewing comments for Chapter 21 "Yum ... not!"Our fostering journey with a severely disabled boy
21 total reviews
Comment from BethShelby
This is terrible. My husband had to go in rehab after having colon surgery and being for an infection. Since he eighty-eight and had a little trouble with his throat the insisted that all his food be pureed. He refused to eat. He hardly ate anything. I begged then not to puree his food but it was loseing battle. He never gained his strength back because he wouldn't eat. His doctor wanted him on a feeding tube.
reply by the author on 14-Mar-2024
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This is terrible. My husband had to go in rehab after having colon surgery and being for an infection. Since he eighty-eight and had a little trouble with his throat the insisted that all his food be pureed. He refused to eat. He hardly ate anything. I begged then not to puree his food but it was loseing battle. He never gained his strength back because he wouldn't eat. His doctor wanted him on a feeding tube.
Comment Written 14-Mar-2024
reply by the author on 14-Mar-2024
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Oh Beth, that is so terrible too. You understand perfectly. They keep saying they are doing this for the person's benefit, but it is not quality living, either to be on a feeding tube or to have pureed food without texture and taste. Thank you so much for reviewing and for your understanding.
Wendy
Comment from Verna Cole Mitchell
I continued to be amazed at the lack of concern and responsibility from those who were supposed to be trustworthy to care for young people with health concerns. Tragic!
reply by the author on 13-Mar-2024
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I continued to be amazed at the lack of concern and responsibility from those who were supposed to be trustworthy to care for young people with health concerns. Tragic!
Comment Written 13-Mar-2024
reply by the author on 13-Mar-2024
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It was appalling, yet they always made out that they had his best interests in mind, and I simply didn't understand. Thank you very much for your kind and thoughtful review.
Wendy
Comment from Jim Wile
I foresee a lawsuit in the air! What a distressing chapter this was, Wendy. Poor Jonathan--deprived of his one great pleasure in life-a decent meal.
It never ceases to amaze me how people can just blatantly lie to your face and insist they aren't doing what everyone knows they are.
I think you must have mentioned the lawyer at the beginning for a reason. Perhaps he hasn't had anything to do with Jonathan yet, but it sounds like you intend to prevail upon him now. My goodness, all those in charge need to be fired after paying a huge penalty for their gross negligence and dishonesty.
This was a well written and disheartening tale of woe. I hope things will begin to improve, but it still looks like the only one to care is you. - Jim
reply by the author on 13-Mar-2024
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I foresee a lawsuit in the air! What a distressing chapter this was, Wendy. Poor Jonathan--deprived of his one great pleasure in life-a decent meal.
It never ceases to amaze me how people can just blatantly lie to your face and insist they aren't doing what everyone knows they are.
I think you must have mentioned the lawyer at the beginning for a reason. Perhaps he hasn't had anything to do with Jonathan yet, but it sounds like you intend to prevail upon him now. My goodness, all those in charge need to be fired after paying a huge penalty for their gross negligence and dishonesty.
This was a well written and disheartening tale of woe. I hope things will begin to improve, but it still looks like the only one to care is you. - Jim
Comment Written 13-Mar-2024
reply by the author on 13-Mar-2024
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Thank you Jim. He will appear later on, but only briefly. I appreciate your thoughtful review and i am so glad you are still following this story.
Wendy
Comment from T B Botts
Hello Wendy,
I know you were between a rock and a hard place, but was there no one around who could advocate for Jonathon and have some teeth that would make the Health Care Team stand up and take notice? What has happened in my opinion is criminal and they need to be held accountable. Thanks for sharing.
Blessings,
Tom
reply by the author on 13-Mar-2024
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Hello Wendy,
I know you were between a rock and a hard place, but was there no one around who could advocate for Jonathon and have some teeth that would make the Health Care Team stand up and take notice? What has happened in my opinion is criminal and they need to be held accountable. Thanks for sharing.
Blessings,
Tom
Comment Written 13-Mar-2024
reply by the author on 13-Mar-2024
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Thanks so much Tom. A most thoughtful and understanding review. One of my next chapters is actually titled "Between a rock and a hard place". And no, that?s the sad and hard thing. There was no one who had authority over them. It was like a David and Goliath situation. Even the hospital doctors who specialised in eating disorders sided with them. Most people didn?t have the strength to keep fighting with them, or weren?t interested.
Wendy
Comment from lyenochka
I'm so sorry that you had this ongoing battle with the care home. But I'm glad that the dietician agreed with you! Hopefully, you will be able to contact that lawyer relative of Jonathon as it seems that might be the only recourse to get them to give Jonathon what he needs nutritionally.
reply by the author on 13-Mar-2024
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I'm so sorry that you had this ongoing battle with the care home. But I'm glad that the dietician agreed with you! Hopefully, you will be able to contact that lawyer relative of Jonathon as it seems that might be the only recourse to get them to give Jonathon what he needs nutritionally.
Comment Written 13-Mar-2024
reply by the author on 13-Mar-2024
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He will be mentioned in a couple of chapters. Thank you so much for staying with this story and for reviewing. I always value your reviews.
Wendy
Comment from Rachelle Allen
GRRRRRRR!!! This is beyond cruel and exasperating. Those people could not care LESS about any of their wards, I bet; you just had first-hand knowledge about Jonathan. They need an investigative journalist to go in there and blow the lid off their ineptitude/corruption. Wendy, I am so sorry you had to go through this. It had to have been heart-wrenching to leave him in the care of those charlatans!!
In this paragraph:
First of all, there was failure to chart the new régime for several months, so it could not be implemented by the house staff, and then within a few months the "official" Dietician/ Speech Therapist started charting the puréed foods and thickened drinks again, and thus surreptitiously dismissed all the independent lady's recommendations.
I think the descriptor "the independent lady's" does not express what you're intending. For me, that phrase calls to mind a plucky ingenue who's just forged her own path in the world rather than a professional in the field of nutritional and dietary food presentation/introduction.
Everything else is word-perfect.
Another stunning chapter, Wendy. Once again, I can't wait to find out what happens next.
xoxo
reply by the author on 13-Mar-2024
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GRRRRRRR!!! This is beyond cruel and exasperating. Those people could not care LESS about any of their wards, I bet; you just had first-hand knowledge about Jonathan. They need an investigative journalist to go in there and blow the lid off their ineptitude/corruption. Wendy, I am so sorry you had to go through this. It had to have been heart-wrenching to leave him in the care of those charlatans!!
In this paragraph:
First of all, there was failure to chart the new régime for several months, so it could not be implemented by the house staff, and then within a few months the "official" Dietician/ Speech Therapist started charting the puréed foods and thickened drinks again, and thus surreptitiously dismissed all the independent lady's recommendations.
I think the descriptor "the independent lady's" does not express what you're intending. For me, that phrase calls to mind a plucky ingenue who's just forged her own path in the world rather than a professional in the field of nutritional and dietary food presentation/introduction.
Everything else is word-perfect.
Another stunning chapter, Wendy. Once again, I can't wait to find out what happens next.
xoxo
Comment Written 12-Mar-2024
reply by the author on 13-Mar-2024
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Thank you Rachelle for this perceptive review. That?s the one expression I was less than comfortable with, but was trying to avoid repeating myself. I will reword it. Many thanks for this thoughtful review, and for your words of support. I fear this sort of thing happens far too often. Also with the vulnerable elderly.
Wendy
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Oh, I absolutely agree!!! It's what keeps any of us with loved ones whom we can't take care of ourselves, at home, awake with guilt and worry in the wee hours.
Comment from karenina
This is heartbreaking. So few things that Jonathan could truly be joyful about and due to plain laziness, these people sabotaged his hope of looking forward to his favorite foods and a happy dining experience.
Again, working in Nursing Homes as an RN for 35 years I gagged when the kitchen sent out "pureed" hotdogs and beans. It was as horrible tasting as it was horrible looking. MANY of the residents simply needed time and patience, proper positioning, and an attentive caregiver to pay attention.
This is still happening. It's all about the money. Thicken food to "gunk" and avoid any chance of aspiration and a possible lawsuit.
Meanwhile? The "Jonathans" of the world are reduced to some dietician who wants to keep her job!
I hope everyone reading this becomes aware of what goes on and advocates for their loved ones!
Once more, I thank God he had you...
Karenina
reply by the author on 13-Mar-2024
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This is heartbreaking. So few things that Jonathan could truly be joyful about and due to plain laziness, these people sabotaged his hope of looking forward to his favorite foods and a happy dining experience.
Again, working in Nursing Homes as an RN for 35 years I gagged when the kitchen sent out "pureed" hotdogs and beans. It was as horrible tasting as it was horrible looking. MANY of the residents simply needed time and patience, proper positioning, and an attentive caregiver to pay attention.
This is still happening. It's all about the money. Thicken food to "gunk" and avoid any chance of aspiration and a possible lawsuit.
Meanwhile? The "Jonathans" of the world are reduced to some dietician who wants to keep her job!
I hope everyone reading this becomes aware of what goes on and advocates for their loved ones!
Once more, I thank God he had you...
Karenina
Comment Written 12-Mar-2024
reply by the author on 13-Mar-2024
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You understand so well, and everything you say is just so true. Such practices must be worldwide, in fact wherever people are vulnerable. Yes, awareness has to happen, and people need to be willing to stand up for these victims. Thank you so very much for your understanding, and for your caring review.
Wendy
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With all the "progress" said to have been made in medicine, the disabled and elderly, who have little ability to express their rights, seem to always be pushed to the back of the line...
Comment from Liz O'Neill
You have truly given the reader a visceral experience:" It was not a drink. It was sludge. I suppose you making the genius suggestion to them, would only frustrate you more. This was a story that need to be told and retold. A poignant account.
reply by the author on 12-Mar-2024
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You have truly given the reader a visceral experience:" It was not a drink. It was sludge. I suppose you making the genius suggestion to them, would only frustrate you more. This was a story that need to be told and retold. A poignant account.
Comment Written 12-Mar-2024
reply by the author on 12-Mar-2024
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Thank you, Liz. At times common sense was sadly lacking. Thank you so much for your ongoing support and reviewing. Much appreciatd.
Wendy
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Thank you for your appreciation
Comment from Pam Lonsdale
Why do I get the feeling that the lawyer will be playing a part in all of this? Isn't the legal system the only way to fight people like this.
I became frustrated just reading this, Wendy. Jonathan is like a volleyball being batted back and forth between those trying to do what's right for him and the power grabbers. It's disgusting.
Well, thank you again for another great chapter, frustrating as it was to read.
xo
Pam
reply by the author on 12-Mar-2024
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Why do I get the feeling that the lawyer will be playing a part in all of this? Isn't the legal system the only way to fight people like this.
I became frustrated just reading this, Wendy. Jonathan is like a volleyball being batted back and forth between those trying to do what's right for him and the power grabbers. It's disgusting.
Well, thank you again for another great chapter, frustrating as it was to read.
xo
Pam
Comment Written 12-Mar-2024
reply by the author on 12-Mar-2024
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Thank you Pam. I wish ....
Yes, a good summary, he was being treated like a person of no consequence, and that doesn't sit well with me. I appreciate your thoughtful review.
Wendy
Comment from LJbutterfly
The plate in the picture looks discussing. I know from personal sources that staff and often administration write false reports and lie about client's care. The ideas you presented about milk shakes and minced food sounded perfect. Jonathan would have eaten and been happy when it was meal time. I hope something gets better for Jonathan.
reply by the author on 12-Mar-2024
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The plate in the picture looks discussing. I know from personal sources that staff and often administration write false reports and lie about client's care. The ideas you presented about milk shakes and minced food sounded perfect. Jonathan would have eaten and been happy when it was meal time. I hope something gets better for Jonathan.
Comment Written 12-Mar-2024
reply by the author on 12-Mar-2024
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Things go from bad to worse, first. Thank you so much for continuing to be involved with his story, and for sharing your thoughtful words. Much appreciated, as always.
Wendy
