Help My Mother Battle a Debilitating Illness

For those of you who don't know me, I'm Susan Honig. I am the daughter of 91-year-old Sylvia, and we live together in Glen Spey, New York, which is a tiny hamlet in the town of Lumberland, in Sullivan County, New York. As I'm sure you can guess from the sound of it, it's an extremely rural community, very close to the border of Pennsylvania, but at the same time, it's almost two hours from Manhattan, which is where I spent my early years. Here in Glen Spey, we're extremely isolated from our neighbors, but also from shopping, doctors, and the local hospital.

I never expected that I'd tell my story and that of my mother's on GoFundMe, not only because I'm a private person but I know that my mother has too much pride to ask for help. But the circumstances have become too difficult for me to handle on my own. I'm an only child, and my father passed away when I was very young, and of the little family we did have, no one is left.

I often don't speak about my own condition, but I have been diagnosed with COPD, which makes breathing very difficult for me, and I spend most of my time connected to either portable oxygen or an oxygen tank while I'm asleep. But the portable oxygen allows me to take care of mom, who is really the one truly suffering. It makes caretaking a bit more challenging, of course, but I'm devoted to her, and I manage to have a sense of humor about carrying it over my shoulder. I am reliant on it to do basic chores around the house, including cooking, cleaning, and of course, the hardest one, being my mother's main caregiver.

My mother, to whom I used to be connected at the hip (and we still are), now suffers from dementia. This stems from her diagnosis of Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig's disease, which came about a year ago. It is a rare, terminal neurodegenerative disorder that results in the progressive loss of both upper and lower motor neurons that control voluntary muscle contraction. My mom's abilities now are severely impaired: she has lost almost all ability to speak, move her limbs, and, lastly, breathing is severely affected. Her doctor does not know her life expectancy.

Luckily, my mother became very well insured before her diagnosis. But before that, she suffered a broken hip and shoulder on two separate occasions. She required living in a rehab facility for both accidents for almost two months, medical transport, and in-home nursing. Unfortunately, she owes approximately $8,000, and my fear is that liens will be placed on our home.

Her treatment for her current battle is in New York City, as there are no excellent specialists who treat ALS patients nearby. Her care now includes transport to New York, in-home health care almost 24 hours a day approximately six days a week, co-pays for prescription medication, and an extra person to handle her personal hygiene three times a week.

We both live on social security, but her monthly out-of-pocket expenses are more than $1,200. Everything else is covered by her insurance.

I have decided to reach out to our broader community for support because no fight is won in isolation, and the stress that my mom's debilitating illness is causing me is not good for my own condition.

The purpose of this GoFundMe is to provide financial support for her co-pays for her doctor, for in-home health care, for the woman who takes care of her personal hygiene, for transportation to her doctor, and for a few miscellaneous co-pays and supplements.

It is with great sadness that I share with you that my mother's life expectancy, according to her doctor, is not very long, not to mention that she will be 92 years old on her next birthday. But it is the ALS which will take her life. Therefore, I am hoping to raise enough money to get her to live as comfortably as possible, for another two years, with as much grace as possible. This is what she would have wanted.

It is with heartfelt gratitude that I thank you for reading through what I have written and for any donations that you are willing to make to make the end of her life easier.