About 6 months after my dad was diagnosed, we knew the idea of a caregiver need to be discussed. My mom worked in the city and was gone close to 12 hours a day and we wanted to go slow and steady and meet someone before fulltime care was required. Eventually those with ALS will need around the clock care, a lot like a newborn who cannot be left alone incase they choke, need to be fed, or changed.
While typing this I had the lightbulb moment I have now also diagnosed those with ALS with the Benjamin Button disease, and I stand by that diagnosis with my degree from Bad Movie University with a major in PG13 or BUST. For those who do not know about The Curious Case of Benjamin Button it is a story about a man who ages backwards. A Rotten Tomato score of 71% but with 100% of Brad Pitt, it obviously was a great movie in my eyes. A horrible PG-13 romantic drama is top-notch on my watch list, after murder mystery of course.
Ton had a case of the Benjamin Button 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 areas of the body where assistance is not required early, while others require assistance prior to their actual medical diagnosis. One thing we learned on was that for our family things changed at the blink of an eye so when we needed something we needed it yesterday, so planning was key.
As I have stated before Ton was extremely stubborn and would only do things on his term and on his time. Side story for reference: My sophomore year of high school I slept in on picture day and woke up to Ton opening my bedroom dooring asking what I was still doing home at 9:00 AM. Instant HYSTRICS… drama queen mode was in full motion as I was frantically trying to get ready for the most important day of the YEAR for any high school girl! I needed to be at school for PE to take my picture, I needed Ton to drive me to school like right this very minute.
Well, let me tell you what Ton did not do… he did not drive me to school right this very minute, in fact 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 before he could take me to school 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 a lot of tears, a half a bottle of hairspray, my puka shell necklace and I made it to school just in time to take my picture.
Anyways, the other woman. So needless to say, we knew it would take him for to open up to the idea of someone being around all the time and thought maybe if we started out slowly he could get used to someone else. More importantly someone else could get used to Ton’s ‘my way or the highway’ mentality.
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 an amazing caregiver and would love to share our information. After a few phone calls, the 4 of us sat down with a woman who at that moment was a stranger, someone who within moments you knew was exactly who your dad needed. Ton was someone who did not need a caregiver who was going to come in and try and comfort him, he needed someone who was going to ignore the fact that the news would be on the whole day, that he could careless if he needed something if he did not want it there was no talking him into it, someone who would put him in his place. My dad was 1 of 8 children, he grew up with 5 sisters, and had an extremely overprotective daughter he did not need someone who was going to just look out for him, he had that, he needed someone to tell him to get drop the attitude and do as he was told. I loved that she would put him in his place, and he would listen! It was great, there was finally someone who he would listen to, someone who he knew actually knew better and knew more, he met his match.
She came in and right away was apart of our family. She would play soccer with Thor, roll her eyes at Ton’s stubbornness and watch DVRed reality shows with my mom. The mornings 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 would set the phone up in the bathroom and let us facetime as she would shave his face. It was like she had always been apart of our family, like she was meant to be with ours. The night I told my parent’s that I was pregnant with Ashton she was there and apart of every step of my pregnancy from belly rubs to Ashton cuddles.
Falling in love with her was easy, for all of us but especially for Ton who knew he had to
uncontrollably trust this woman who was now going to see him at the most vulnerable time in his life. Ton never asked for help and would rather blow his back out or cut a finger before admitting he was wrong or that he needed the help. Here he was at 64 years old now needing help in every aspect of life, because his body was failing him and he was gradually requiring more and more help, physically unable to help himself, daily 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.)
It always broke my heart to know that mentally he was still as sharp as he had been, his mind fully intact knowing that every muscle in his body was failing him. As someone who suffered herself from anxiety and depression and has watched Ton struggle with the same my entire life, I could not imagine being stuck in my thoughts as the world continues to zoom past you. As Ton’s voice started to become weaker the people who could understand him became limited and often appointments were translated by my mom and I to help get his message across, very similarly to how a parent can understand their toddler while other adults struggle understand the rambling babbles coming from a trying two-year-old.
When we knew time left with Ton was limited and he was fully sedated we all started to say our goodbyes. At this time, my little family had been there for days, the phone calls to his sisters started as we knew we wanted everyone to have their time to say goodbye. Family individually went in and out of his room and spent special moments with him before a night of storytelling and memory swapping., a day that I had shared in an article as turning into the memory I like to remember when thinking of him passing away, a night filled with laughs and love, a night filled with remember Ton without ALS.
After a long night we all started discussing how we felt like he was holding on for something, we felt as if there must be something he needed to fully let himself go. You know how a newborn knows the sound of their mother’s voice? How as a child when you are sick you want your parents? Even as an adult a hug from mom or dad instant can make everything better. 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.
Within moments of her arrival, she walked into the room she walked into hundreds of times before, she fixed his hair the way she always did every morning, rubbed his face, and kissed his cheek so that he knew it was her. Within minutes of her being in the room, my mom, brother, and I sat next to the same woman who was once a stranger, the woman who all of us had now loved. All five 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. Ton was always a protector, always someone who looked out for his loved ones and this was not going to be an exception.
Loving Ton was not always easy, Ton loving others was even harder but he fell in love with her…we all did.