I am one of 8 children that John and Cindy Thyer had. They married at 16 and 19. They celebrated their 45th wedding anniversary in March of 2018. All 8 of John and Cindy’s children are college graduates.
When John, my Dad, was diagnosed with ALS there were 25 grandchildren at the time. My dad was diagnosed on January 24, 2018, which is a day that became a point of no return. My dad‘s ALS was respiratory onset and he lived 7 1/2 months with this grueling disease. He was able to bear witness to the birth of his first great grandchild and then lost his battle to ALS a week later.
My dad believed firmly in advocating for ALS awareness because we have to be able to do better for those who are suffering from this terrible disease. Due to the close knit nature of our family, we were able to meet all of my father’s wants and needs in the comfort of our home with some modifications. We had a schedule for shower days and a shower system that was portable. We had around the clock care provided by family members. Every task was assigned to one person or another, including a feeding schedule, the bathing schedule, the shaving of the beard schedule, haircut schedule, medication administration, even scheduled drinks. There was a group assigned to go to all medical appointments. I had the task of securing assistive equipment, such as the medical bed, the suction machine, the Ensure that was delivered, the gait belt, the wheelchair, the Hoyer lift and anything else that became a necessity as the disease progressed. Our journey with ALS was documented and showcased on KSDK News Channel 5 for the MDA show of strength telethon held in St. Louis. I have participated by going on the news every year in honor of my father to bring awareness to ALS, just as my father wished and requested.
These are all facts that I can spout off regarding our journey with ALS. But what about the feelings associated with ALS? I am almost at a loss for words when I reflect on what I feel about ALS. It isn’t pretty. ALS is brutal, and it is a ruthless disease process that ravishes one’s body fully, and completely to the point where the disease is able to steal the last breath from those who die from it. On September 6, 2018, as a caregiver, I had to remove the mask from my father‘s face as his last breath was taken. He was no longer able to go on anymore. He moved on from the worldly suffering that he had endured. I hope he felt relief from all the pain and misery that we had to observe and he had to endure.
As I stated, no part of this process is pretty. It is ugly but I can tell you I found beauty in the peace that I saw in my father‘s eyes as the disease progressed. There was a gentle softness that wasn’t always present in my father‘s eyes before the disease. It was as though going through the process of dying opened his eyes to the fact of that he had an amazing life he had been living. My father was so proud of his family and he worked so hard to give us everything that we needed. We answered back during his time of vulnerability and weakness, and we found strength to fight all that we could. We fought as a family and we lost as a family. We stopped counting the days and started making the days count. ALS leaves no survivors. However, this horrific disease was not able to break us. Our love only got stronger. Anyone who looks into the eyes of a loved one facing ALS, as a caregiver, will walk away with a different view on both living and dying.
