Please help if you can

I want to take a minute to talk about caregivers. 

Having ALS obviously compels me to raise awareness for ALS causes and cures but, as importantly, reminds me how significant caregivers have been throughout my life. And how underappreciated, undervalued, and underpaid they are. Caregivers come in all shapes and sizes. Sure, many of them are paid professionals (dramatically underpaid) but most are not paid at all. Most are average moms, dads, sisters, brothers, husbands, wives, cousins, friends, and other loved ones who are foisted into a situation beyond their control where they have no choice but to rise to the occasion.

My mother, as a single mom, was my first caregiver. My sister who looked out for me in those early years was my caregiver. When my sister divorced with two young kids, my wife and I served as a caregiving unit for her kids. When my Mom had a devastating stroke, Ann Leigh, Pam, myself and a wonderful woman named Florence became my Mom's caregiver for four years before my Mom died. My great grandmother lost her legs to gangrene at an early age and was surrounded her entire life by wonderful family members who were her caregivers. And now here I am with ALS and, unfortunately, Ann Leigh has been foisted into this situation, just like I have. As such, she is now my full-time caregiver. A role so necessary, but so damn thankless.

Like those they care for, caregivers worry, feel, hurt, tire, need, break down, rally, and cry, often on a daily basis. Like those they care for, they get anxious and are often invisible to others. Their services are assumed and taken for granted. They are not funded by Medicare or other government programs. In that sense, they are a huge gap in our system. Very few can afford to pay for private insurance or caregiving services outright amidst all the other expenses that come with long term illness, disease or just the tribulations of life for a single parent. In addition to their own routines, they inherit the routines of those they care for. They strap those additional chores on their back and carry on. When they rest, they are not at rest. They are always on call, waiting for the next need to arise, accident to address, tears to wipe away, pep talk to give, or unexpected new problem to solve. It is exhausting, stressful and thankless. 

They need support, just like those they take care of. They need a break. 

Going forward, It's my pipe dream to use this platform and my circumstance to support caregivers. To boost their status and heighten awareness of how incredibly important, yet underappreciated, they are. I would like 35prospect.org to be a vehicle of support, giving caregivers a breather whether that is a lunch date with friends, a day at the spa, tickets to a ball game or the theater, a shopping spree, a full body massage, or just some old-fashioned down time to take a long afternoon nap. In due time, maybe we can even do more with enough generosity and support. My family and a few close friends are behind me on this 100%. As my abilities fade, they will carry the torch with our shared vision of helping caregivers. Any proceeds we receive will not be used for our personal situation but will, with sincere discretion, be dispersed to caregivers in need. To benefit, all we need are a few short words about the caregiving situation in question. Right now, we have not activated this effort as we are still troubleshooting the details. But we wanted to start getting the word out none the less. So please be patient.....and by all means email me with any suggestions on how to implement this vision!