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.
Jim's Journey with ALS 
Dear Jim, So sorry to hear of your fall and the mess you had to endure afterwards. My husband has ALS also and reading your last few posts makes me afraid of what may be our future. I used to draw encouragement from reading this blog and many times shared what you wrote with my husband but your last few entries make me sad for all that you are having to endure. I will continue to keep you in my prayers.
I know most of my blogs should be uplifting but I felt I needed to share some of the bumps in the road that some may face.
Jim…Great insight for all other PALS and their caregivers. I will see if I can past, copy and send to my Congressman and Senators … They need to know where you and all other PALS are falling through the system along the line including EMS, ER rooms, etc. You, Katie , your helper and Susan got you through the worst of this without help from the system! God Bless you all. I know that your Guardian Angels are looking out for you and God has a Plan for you. Take your solace from that and know that we’re all praying and asking our Guardian Angels to give you help and support for you, your family and your helpers! God Bless you everyone!! Hugs… Alice and Gary.
You don’t know me, but I work with the same company in North Carolina as your brother John. I just wanted you to know that you have people all over that remember you in prayer. Your strength and dignity in handling this disease makes us reevaluate our actions concerning the less life altering situations that we may find ourselves in. My prayer would be that you and your family continue to find strength and peace in the midst of the pain that you endure. I feel that you must be surrounded by an enormous amount of love to maintain this strength, and God’s love envelopes it all.