Jonathan's Story
Viewing comments for Chapter 18 "Talking to a brick wall"Our fostering journey with a severely disabled boy
24 total reviews
Comment from Pam Lonsdale
Part of me is horrified at how little the "caregivers" really seemed to care for the disabled. But everyone is different, and surely they understand that extends to the disabled. These people are certainly overwhelmed, and I think they assume to know more than those who have lived with the individual. I feel for all disabled in the care of these "professionals".
Always the need for meeting quotas; that has always been and I can't imagine it changing in my lifetime.
You were wise to keep all of the paperwork. I look forward to reading how you used it.
xo
Pam
reply by the author on 03-Mar-2024
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Part of me is horrified at how little the "caregivers" really seemed to care for the disabled. But everyone is different, and surely they understand that extends to the disabled. These people are certainly overwhelmed, and I think they assume to know more than those who have lived with the individual. I feel for all disabled in the care of these "professionals".
Always the need for meeting quotas; that has always been and I can't imagine it changing in my lifetime.
You were wise to keep all of the paperwork. I look forward to reading how you used it.
xo
Pam
Comment Written 03-Mar-2024
reply by the author on 03-Mar-2024
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Thank you very much Pam for your thoughtful review. Some were good care givers, but it was usually those at the top who were so "knowledgeable" that they lost sight of the individual.
Wendy
Comment from karenina
The dehumanization of Jonathan for ego, time saving and profit is something I saw time and time again as an RN for late stage dementia patients ... Particularly those with comorbidities such as Parkinson's.
Thank God you persisted. I've no doubt he'd have had PEG in days, if only they could make you go away!
Jonathan's great joy! How he loved his meals!
It's heartbreaking...
The ridiculous part is tube feeding takes much less time ... and yet medical facilities reap much larger profits!
Every disabled person needs an advocate like you!
Karenina
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reply by the author on 03-Mar-2024
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The dehumanization of Jonathan for ego, time saving and profit is something I saw time and time again as an RN for late stage dementia patients ... Particularly those with comorbidities such as Parkinson's.
Thank God you persisted. I've no doubt he'd have had PEG in days, if only they could make you go away!
Jonathan's great joy! How he loved his meals!
It's heartbreaking...
The ridiculous part is tube feeding takes much less time ... and yet medical facilities reap much larger profits!
Every disabled person needs an advocate like you!
Karenina
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Comment Written 03-Mar-2024
reply by the author on 03-Mar-2024
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Yes, that is the irony of tube-feeding. Thank you so much for this very insightful and very encouraging review. An elderly friend in a nursing home with crippling arthritis in her hands was given a piece of fruit for after her dinner each evening, usually an orange which she could neither peel nor cut. No matter how many times they were asked, the staff never peeled and cut it for her. The vulnerable are victims, and it is so wrong.
Wendy
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Grrrr. As a nursing supervisor or director I was consitently monitoring the Nurse's Aide's...some of qhom were wonderful and many of whom ignored the resident they were feeding in favor of gossiping with another Aide....no attention was paid to the person they were being paid to take care of! (I was a beast to work for!)
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You were doing well and with integrity the work you were called to do and were being paid for. So, on behalf of all those who were cared for well, I thank you.
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Thanks, Wendy. For those few who had family members visit regularly, I know they appreciated my attentiveness. I just kept picturing my own relative in the bad... And that's what I told the Aide's when i caught them not peeling an orange or shoving pureed "hot dog" into someone's mouth, or (oh this peeved me) ---EATING the resident's dessert!
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You have to be joking! But you aren?t. How incredible! That is unbelievable.
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It happens more often than people think. Look what that woman was doing, stealing Jonathan's chair and clothing? It's incorrigible.
Comment from Jasmine Girl
This story underscores the resilience of caregivers like the author, who, despite facing institutional resistance, remain steadfast in their commitment to prioritize the well-being and dignity of the individuals they care for. The narrative serves as a poignant reminder of the importance of advocacy and individualized care in the face of institutional pressures.
Well done.
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reply by the author on 03-Mar-2024
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This story underscores the resilience of caregivers like the author, who, despite facing institutional resistance, remain steadfast in their commitment to prioritize the well-being and dignity of the individuals they care for. The narrative serves as a poignant reminder of the importance of advocacy and individualized care in the face of institutional pressures.
Well done.
This rating does not count towards story rating or author rank.
The highest and the lowest rating are not included in calculations.
Comment Written 03-Mar-2024
reply by the author on 03-Mar-2024
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What a beautiful and caring review! Thank you so much for these kind and encouraging words.
Wendy
Comment from Dolly'sPoems
I am appalled by Jonothan's treatment Wendy. His only real pleasure is tasting his food and this institution wants to take this away from him because it is inconvenient to feed him slowly as it takes too much time. Where is the care here? Efficiency comes first and care is secondary?
This is unbelievable and I am sorry to hear that this goes on in a civilised country like Australia, but I expect this same battle would take place in England. Everyone wants an easily life and because Jonothan cannot speak for himself, he is reliant on those around him to fight for him. I am so glad he has you Wendy. What a tragic story of neglect and inexcusable uncaring attitudes. A fine post, love Dolly x x x
reply by the author on 03-Mar-2024
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I am appalled by Jonothan's treatment Wendy. His only real pleasure is tasting his food and this institution wants to take this away from him because it is inconvenient to feed him slowly as it takes too much time. Where is the care here? Efficiency comes first and care is secondary?
This is unbelievable and I am sorry to hear that this goes on in a civilised country like Australia, but I expect this same battle would take place in England. Everyone wants an easily life and because Jonothan cannot speak for himself, he is reliant on those around him to fight for him. I am so glad he has you Wendy. What a tragic story of neglect and inexcusable uncaring attitudes. A fine post, love Dolly x x x
Comment Written 03-Mar-2024
reply by the author on 03-Mar-2024
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I am afraid this sort of thing happens everywhere and all the time. I had an elderly friend in a nursing home for aged people, and the carers would bring her fruit - an orange, which she could neither peel nor cut, because she had severe and crippling arthritis in her hands. I asked them time and again to peel and cut it for her, on the days I wasn't there, but they never did. Vulnerable people are not treated well. Thank you so much for reviewing, and especially for the valued six stars. Very meaningful, and I appreciate your caring words.
Wendy