A caregiver is synonymous with an endless pit of fear.
A challenging aspect of ALS is that it takes a long time to be officially diagnosed. Everyone shows their signs and symptoms differently, and the only way to be diagnosed is to rule out a handful of other diseases. My dad struggled for close to two years before he was diagnosed, and by the time of the appointment where he was officially labeled as having ALS, he was in a wheelchair. Weeks before that appointment, all I wanted was to know what was going on and have an idea to plan. I thought that if I could have a plan, I could figure out a way to make everything better and make everything “normal” again.
The day he was diagnosed with ALS was when grieving started. There were so many layers that went into grieving when he was diagnosed. At one moment in time, not only did my dad find out that he had a terminal disease, but my mom found out that her husband was about to battle for his life, my brother and I found out that our time with the man we looked up to most was limited and that my son was about to lose his Papa. I also struggled with losing the idea of what ‘life was supposed to be’; I was grieving the future I envisioned for our family.
Honestly, at that moment, I was mad. I was angry that a disease was taking away so much of the future that most people did not think twice about having the opportunity to be together. I was mad that my dad was not going to get to be at Grandparents Day at the local elementary school each year, that my parents would never get to retire together and have time to do nothing and everything all at the same time. I was mad that I was in a situation that so few people knew and understood, and even if I tried to explain my scenario that what I was going through was so far from the norm, I became mad that others did not have to go through this too.
As a stay-at-home mom, I was lucky to have the flexibility to attend his doctor appointments and help my mom take him to appointments while she worked. I knew that taking care of my dad and being a part of every appointment would be a top priority. My brother and I worked out a schedule where we would each visit a night a week so that my dad would have a couple of days a week to look forward to and see the progression slowly and learn the changes as they happened.
Our family joke was that my brother could afford someone to care for my parents, and I would have to do it myself because he was a saver and I was a spender. Our whole childhood, we would laugh over the concept and the idea of being old adults deciding what to do with our parents. I always pictured us arguing about who had to be the one to tell Dad he was too old to drive or tell Mom on FaceTime that her glasses were on the top of her head when she could not find them.
But guess what, I was not even 30, and our family was struck with lightning with a disease that we had only heard of because of the Ice Bucket Challenge that came out a couple of years prior. I did not get to argue with my brother and try to rock-paper-scissor him to tell Dad he was too old to drive because the doctor did that for us when he diagnosed him. That doctor was the one that unknowingly took away the future I had envisioned as a little girl.
From the moment he was diagnosed, I had a massive pit in my stomach. Fear took over every conversation, every goodbye, every text that was not answered within minutes. When you find out that a loved one needs care, it becomes the moment that your life is forever changed. Caring for someone else becomes your new ‘norm,’ and that life as you once pictured starts to change. I feared what our new normal would be, what each moment, holiday, and all the special moments would become. I worried even more about who we as a family would become; what would happen to all of our relationships after he was gone? The pit of fear grew more prominent as the giving of care grew more intense.