23 days is all it took for me to get a better understanding of our health care system. And, with that, another reason why ALS sucks.
As many of you know, I had a terrible fall at my home in October. While standing in my bathroom, I lost my balance and let’s just say the tile floor won. My daughter, Katy, was my hero, though. Fighting through the fear, tears and hysteria, she managed to get my BiPAP machine into the bathroom so I could breathe, and then called 911 while my helper kept me alert until the ambulance arrived.
At the hospital, I was told I had a broken left clavicle, broken right forearm, and five facial fractures in my left cheek and eye orbital. Stitches and various bumps and bruises rounded out the damage. I was then asked how I was getting home that night. I couldn’t have been happier to have my wife at that moment. She handled that situation without getting unhinged. In my condition, I shouldn’t have been sent home, yet they didn’t want to admit me. Thankfully, I was admitted but was unsure what the next day would bring.
The next day came and I felt worse. My left eye was swollen shut, and I felt like I had been in a car accident because of the pain. Ye I wasn’t allowed to stay another night. Thankfully, my wife talked to hospice and I was approved for a five-day respite stay at a nearby short-term/ long-term nursing home. During my stay there, I never saw a doctor much less anyone who knew anything about ALS. But my time was up and I had to leave. I was falling through the cracks and my wife wouldn’t stand for it. She contacted the ALS clinic and told them what was happening, and they got me an ambulance to take me to the emergency room at the hospital where the ALS clinic is located. I was admitted to a great hospital, seen by doctors and had a plan to get home.
I spent five days there but then had to leave, and found a long-term acute care facility to take me since I wasn’t well enough to go home. I was told the average stay was 25 days for patients. Well, on the 5th day, I was told insurance was cutting me off the next day. While I was excited to go home, we were not prepared with the proper home care. It was a scramble at home, but we found home health that has worked out. Without the generosity of many through my Go Fund Me site, I would be in a nursing home. Unfortunately, at a cost of $8,000 per month, those funds will run out in April.
So, there is the dilemma. ALS is a grey cloud that gets lost in our health care system. And with no home nursing coverage, families go bankrupt trying to care for their loved ones. I never realized how broken our healthcare system was until I got lost in it. That being said, all the people that cared for me were great. They are just limited by insurances companies. 23 days is all it took to realize how messed up our system is.