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CARENOTES | Past Carenotes | Let's Talk


Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 9/23/14


I am a dedicated, loving, and gainfully employed father to THREE legally disabled children with severe neurological and developmental disorders, and husband to a disabled wife. I have a good job, so I fall through the cracks of low-income vs. wealthy and able to afford it. I can't hold a second job because of the time involved in caring for my family. We have had 13 hospital stays in the past two years, my wife has brain damage, my six year old has had a stroke. All three children have autism and related disorders. I have no support. Sometimes it seems like I would get more services if I quit my job and was unemployed. I am a firefighter/paramedic and I love my job, but last year we spent well over 25 percent of our income on medical expenses, and I am the sole breadwinner.

Why are these services all for grandparents of disabled children, or caregivers for the elderly? My situation is desperate, but because I have a job, the four people I care for are under 60 and I am under 60, I am left out in the cold. It infuriates me that my family keeps falling through the cracks, and we are facing bankruptcy solely because of medical costs! Why is there no help for people like me!?


Shared by: Jessica

Chris, I am so sorry to read your CareNote. Unfortunately, I do not have any helpful advice for you. I wanted you to know I sympathize, as another caregiver who has a good paying job and thus no assistance. Are you a member of any professional organizations that might provide some help?


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