The Endeavor is more than just the name of my newsletter. It’s an effort that I maintain on a daily basis to control the factors around me that will allow me to survive and thrive as a severely handicapped man in today’s modern world.
JerryFarris.com represents my most ambitious venture yet. This time, the stakes are much higher. This time, what is at stake is my very survival.
The day-to-day activities that are necessary to keep me living requires a lot of responsibility. When I was younger, this responsibility was my parents, and more particularly, my mothers. Through the years since then, my care has became more complex and more time-consuming, and that responsibility has become greater.
Right now, my cousin is assisting my mom with my day-to-day care, but this is not a long-term solution.
A Medicaid waiver pays for 25 hours of care per week, which currently handles bathing, dressing and personal hygiene. However, Medicaids own regulations allows cracks that I fall through when it comes to the specialized care that I need. Two examples:
1. Medicaid will not allow my caregivers to work for me while I am hospitalized. It doesn’t seem to matter that lifting me and handling me is something that requires specialized, long-term training, none of which these hospital nurses have. The policymakers just assume that if I’m in the care of a hospital, their staff can do everything that my caregiver can do. However, that’s simply not the case, and when it comes down to being severely sick, I need my trained caregivers more than ever! Imagine being sick in the hospital with pneumonia and can’t even COUGH because no one around you knows how to help you. There is also a matter of liability. Nurses are afraid to handle my frail body in an effort to help me cough because they’re afraid they might hurt me, which probably would be the case considering they’re not trained to do this sort of thing. It’s truly frightening! Up until now, my mother has always been by my side with every hospital stay I have had. But I know she won’t be here forever, and even now, she isn’t physically able as she once was.
2. Another crack that I just fall through is the rule regarding lifting me from one place to another (bed, toilet, wheelchair). If someone weighs more than 40 pounds (I weigh 58), any caregiver is required to use a hydraulic lift for all lifting. Why? Because of the aforementioned issue of LIABILITY. The policymakers are afraid the caregiver will injure me or injure themselves. The problem here is that my body is so atrophied and small that any attempt to use a hydraulic lift fails miserably, and is in fact very dangerous. In the past, it was not an issue because my mom did all the lifting. However, when she broke her shoulder and knee in December 2015, all of that changed. The incident left us all in a crisis situation because NO ONE else had training or was qualified to lift me. Risking serious injury, and incurring unavoidable pain and mishap, we managed to get through it. I do have a good caregiver now who doesn’t mind ignoring the regulation of 40 pounds, but what about next time. Once again, I find myself with no backup, and no help from Medicaid.
While I may be able to think for myself and make my own choices, I can do absolutely nothing physical to take care of myself. I need someone 24 hours a day, 7 days a week.
Now, keep in mind, the kind of care that I need is not nursing care. I am not sick. I’m just handicapped. I am an active person (within the confines of what I call active). I get out of bed every morning and have a productive day running my business, but only if other people are dedicated to making this happen.
In most cases, I believe family can and often does take care of relatives in need. However, the complexity and depth of care that I need goes far beyond a sitter, and requires specific, specialized care. My caregivers have to go through extensive and long term training before they can truly meet my needs. While my family (aunts, uncles and cousins) certainly has the heart and desire to do what they can, they also have their own responsibilities and spend their time working to make a living for their own families.
Friends are no different. Everyone has their own responsibilities that requires them to work for a living.
Health insurance (Medicare) will only pay for medical services and nursing. It does not cover day-to-day living.
The government with all of its programs designed to help the disabled, only covers a small fraction of what is necessary for someone of my complex physical condition. My disability and SSI comes to only $753 per month. This is nowhere near enough money to survive on, much less pay for my care.
After spending years trying to find help through traditional channels, I now realize that my only choice is to make enough money myself to pay for my own care. The only way anyone will ever have the desire and determination to accept this undertaking and take care of me the way I need to be taken care of, is if they are paid to do so.
Now, we’ve all heard the expression, “it takes money to make money”, and it’s true. As an entrepreneur, I see ways to make money all the time. I have an Excel spreadsheet full of ideas for business startups. Some of these ideas have been on the shelf for 15 years or more. They are all just waiting for the capital to start them.
While I have had success in the past, and was blessed to have a really nice job for six years, the last five years has seen some major medical and financial setbacks. I stand now at a new beginning. A chance to use my knowledge and experience to build something that will carry me forward.
This is my endeavor. This is what drives me. Each day, I get in my wheelchair, I go to my computer and I pick up where I left off the day before. I strive forward every day, with the purpose to be self-sufficient and self-reliant. I have the knowledge and I have the determination. I refuse to lie down! I refuse to give up!
For all the naysayers, and all of you who believe my best choice is a nursing home, I said this… My Lord gives me my strength. By his wisdom and grace, I have lived 45 years when all kind of professional opinion says I should have died before I was 10 years old (See my biography). Living my life is very difficult, and gets harder with each passing year. My Lord could have granted me mercy and taken me home at any time, but he hasn’t. My only conclusion is that his work with me is not yet done. To that end, if he wishes that I live, then I shall do so to the best of my ability.
Many people who read my story ask how they can help. I’m sure not everyone can afford to help in a monetary way, but if you so choose, you may click the donate button below and donate straight to my PayPal business account for “Jerry’s Cool Stuff”. This will help pay for the expenses of running this website, and perhaps even fund the start-up for a few other businesses.
If you can’t make a monetary donation, you can always help by sharing jerryfarris.com on social media, as well as promote our social media sites on Facebook, Twitter and YouTube.
And last but not least, If you would like to follow me on this journey with an insiders look at the day-to-day struggles of undertaking this endeavor, please sign up for my newsletter, The Endeavor.
If there are any other ways you think you can help, please see my contact page. I would love to hear from you. Thank you for your support and prayers.
1942 Glennwood Rd.
Morris, AL 35116
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