| Page 7 | Caregiver Action Network

Advocating for my disabled son

Hi everyone I'm a single mom with a 12 year old disabled child who has chronic lung disease epilepsy and cerebral palsy and it's hard finding help for special needs kids I live in newark nj and i could never find any kind of help for him it's pretty hard and very upsetting but I have no choice but to speak for him and fight for what's right

5+ Years of Solo Full-Time Caregiving -- Published my Experience

I was blessed to be my Mother's solo full-time caregiver for 5+ years. Stroke brought about Wernicke's Aphasia, and in time, the dementia presented itself. Within the first few months of caregiving, I found no articles or books on solo full-time caregiving, so I decided to keep my notes and journal up to date, with the intention of publishing a book on how solo full-time caregiving got done. All of the reading I came across stressed the importance of putting together a caregiving team, so that the primary caregiver does not burn out.

This was sent to Mayor of Philadelphia

Hi there Mr Kenny. I had written you last year concerning some issues with the Philadelphia Fire Department and an elderly relative's treatment. You did put me in contact with a fire department captain and we had a meeting. Whether that meeting was productive remains an interesting question.