I’m not sure any of us knew what to expect and really still don’t. It’s one of those day to day, some good, some bad, kind of situations. Dementia? Alzheimer’s? It doesn’t even matter. This thing that has pillaged the small tribe that is our family is The Boss.

It is so much.

It is loss, tears, and attempts to remember. It is frustration, denial, acceptance, and anger. It is fear, anxiety, loneliness, sadness, and exasperation. It is unfair.

Today my mom will spend her day with my dad. He’s there but she’s alone. She will wake early and climb out of the king size bed they shared for 45 years to go check on him in the living room where he now sleeps in the hospital bed hospice has provided. Her sleep wasn’t restful because she has to listen for him on the monitor on her nightstand in case he coughs or chokes. Sometimes she sleeps in a chair next to his bed if he’s anxious or afraid. His only comfort is her. She’ll check on him to see if he’s taken his oxygen off, which he usually has, and change the bedding he’s soiled. He’ll be happy to see her but won’t want to get out of bed yet. He likes to sleep late. Several hours later she’ll get him up to move him to his chair which is only a few feet away, yet it is a monumental workout for both of them. As soon as he’s seated she brings him his protein shake. His morning routine no longer includes the newspaper or the crossword puzzle. Instead of staring at the paper, now he just stares.

As difficult and miserable as that all sounds, and it is, it is so much more.

It’s an opportunity.

It’s an opportunity for his family to tell him we love him as many times a day as it can be said. It’s an opportunity to shake the hand of the man who was your friend, your coach, your teacher, your mentor. To watch him smile that crooked grin.

It’s an opportunity to be the friend to him that you say you are. Besides family, few have actually shown up. But there have been a few former football players, a neighbor or two, the pastor and a couple of church members. While the food that’s dropped off is appreciated, you’re missing the bigger blessing by taking one minute to step in and speak to him.

It’s an opportunity to possibly catch a glimpse of the orneriness he still possesses. He has no inhibitions anymore which frees him to be the child he has become.

Football seems to be the memory that he still holds on to. Perhaps because it’s so deeply embedded in his identity. Sadly, that too will be gone eventually.

This devastating thing I refer to as The Boss has taken my big, strong, proud Dad and made him physically weak and dependent. He laughs at the most inappropriate times, he doesn’t listen, and No is his favorite word.

Around 6 or 7 in the evening, he will ask to go to bed. My mom will try to convince him to stay up longer, but his favorite activity these days is sleeping. She will help him get out of his chair and walk him the few feet to his bed. She’ll cover him up and tuck him in and he may stay awake and watch a ballgame but usually he goes to sleep. And then my mom is alone again, left to spend another quiet evening at home. Tomorrow will be a repeat of today and yesterday and the day before.

The last time I was with him, he called me Pat, his sister’s name. He knew I was his daughter but had to be reminded of my name. At some point, and it’s already begun, my Dad will look at me and I will have no place in his mind anymore.

I can still hold my Dad’s hand, but I miss him everyday.