About six months after my dad was diagnosed, we knew the idea of a caregiver needed to be discussed. My mom worked in the city and was gone close to twelve hours a day, and we wanted to go slow and steady and meet someone before full-time care was required.
While typing this, I instantly thought of the Movie The Curious Case of Benjamin Button. Just like in the movie, people with ALS seem to age backward. They go from being independent adults to needing to be fed and changed like a newborn. They live life backward the moment they are diagnosed.
Ton had a case of the Benjamin Buttons, and as days passed, you could start to see his diagnosis progressing and this need for assistance increasing. The way ALS progresses for every patient is so different.
Some people have a slower progression or different body areas where aid is not required early, while others need assistance before their actual medical diagnosis.
We learned that things changed in the blink of an eye for our family, so when we needed something, we needed it yesterday, so planning was vital.
Well, let me tell you what Ton did not do… he did not drive me to school right this very minute; he did not drive me to school for over an hour. He told me that I needed to wait until he got his things done, which would be taking a shower and blow drying his hair (yes, you read that right, he had gorgeous slicked back salt and pepper hair that no one could touch) and that it was not his fault I was late. Thankfully, after many tears, half a bottle of hairspray, my puka shell necklace, and I made it to school just in time to take my picture.
Anyways, finding the right caregiver we knew would be tricky. Not only did my dad need to open up to the idea, but we needed someone who could handle being around HIM eventually twelve hours a day.
We wanted to take things slow and make sure both parties fit each other early on, especially while my dad had his voice. Finding the right caregiver is like finding the right partner; you have to click; if not, the trust will never be there.
I posted on Facebook that we were looking for a caregiver, and someone I went to high school with reached out and explained that her aunt had ALS and she had a fantastic caregiver.
I was thrilled to have a word of mouth reference and to sit my dad down and pull the parent card, letting him know that I trusted her word because, as parents say, “they come from a good family.”
My mom, dad, brother, and I sat down for what felt like a blind date to see if this woman and my dad would click if she would be the woman he could trust.
Ton was someone who did not need a caregiver who was going to come in and try and comfort him; he needed someone who would put him in his place. He finally met his match, and we loved every second of knowing that. Instantly she was family like she was always a part of our lives.
She came in and, right away, was a part of our family.
She would play soccer with my oldest, roll her eyes at Ton’s stubbornness and watch DVRed reality shows with my mom. When Ton would sleep late, she would text me and let me know so I would not worry that I did not hear from him or set the phone up in the bathroom and let us facetime as she would shave his face.
Ton never asked for help and would blow his back out or cut a finger before admitting he was wrong or needed help.
Here he was at 64 years old, now needing help in every aspect of life. His body was failing him, and he knew he had to uncontrollably trust this woman who would now see him at the most vulnerable time in his life.
Each day he progressed backward in life, becoming more like a newborn baby and less like an active 64-year-old who would walk miles a day. (Benjamin Buttoning...is that a thing? I think I just made it a thing.)
When we knew time left with Ton was limited, we all started to say our goodbyes. At this time, family members had been there for days, as we knew we wanted everyone to have their time to say goodbye.
After a long night, we all started discussing how we felt like he was holding on to something; we felt as if there must be something he needed to let himself go entirely.
We quickly realized that he was holding on to say goodbye to her. He needed to know she was okay with this and that she would be okay. She was more than his caregiver, she was someone he loved.
Within moments of her arrival, she walked into the room she walked into hundreds of times before, fixed his hair, rubbed his face, and kissed his cheek the way she always did every morning so that he knew it was her.
And that was all he needed.
The four of us held on to Ton and held on to one another as he let out his final breath as a way of letting us know that he was no longer suffering.
Loving Ton was not always easy; Ton loving others was even harder, but he trusted her, loved her, and loved her.
