Ending Alzheimer’s Disease

Over the Labor Day weekend, my children and I went home to Long Island to visit my dad and my siblings. Our first stop is always at my dad’s house. As is typical, he was dressed in a flannel shirt and sweatpants, despite the rising temperatures outside.

My dad was never a tall man. It was a stretch to say he was 5’5. Today, he’s likely closer to five feet tall and I and my children tower over him. He is much thinner and his hair, nearly gone, is all gray. His hearing is compromised. However, at nearly 93 years old, he’s not doing too badly, except for one thing – he has Alzheimer’s.

Each time we visit, I see a little bit more of him slipping away. At first it was simple things like not remembering details of a conversation.  Over the past couple of years, it has progressed to a point where long-ago memories are forever gone, enjoyable pastimes like card-playing and crossword puzzles are no more, and moods vary from day to day; sometimes hour to hour.

The one thing that hasn’t changed thankfully is that he still knows and recognizes me and my children.  During our visit, we talked about simple things, like my daughter’s first days in high school and my son’s new college classes. His responses were appropriate and he hugged us all goodbye when we left.

That evening, during discussions with my brother and sister, I learned that perhaps this interaction was not as it appeared. I explained to them that my dad was jovial and calm during our time together. They were probably thinking I was nuts as they see a different side of my father on a regular basis.  They see someone who can be rude or belligerent or just plain frustrating. I told them that dad was fine and that we had a great visit.

It was then that I heard the words that I’ll likely never forget. “Dad’s always on good behavior when company visits or he’s in public.” Company? When did I go from daughter to “company”? At that moment, I realized that maybe my dad didn’t know who I was – that he thought I was just someone visiting him.

I wanted to cast aside this thought but I had no choice but to accept it when his caregiver later told me that during dinner, my father pointed to my daughter and asked who she was.

It can’t be. It can’t be that he doesn’t know who we are. I refuse to accept this. I refuse to believe that there’s not some small space in his mind that holds memories of hours at the kitchen table playing cards or Googling the answers to the Sunday crossword puzzle or seeing pictures and videos of my children’s sports events. I refuse.

If I allow myself to believe this horrid truth, then my dad becomes invisible. It’s like he’s already gone. There’s no need for calls home to speak to him. There’s no need for future visits. He doesn’t know who I am so what’s the point?

I won’t allow it.

end alz

 

My dad is the single most important man in my life. The one who, despite errors in delivery of the words and actions, supported me and encouraged me. He told me he was proud of me and that I’d done a good job raising my children. He told me he loved me.

I can’t bear the thought of whatever time he has left on this earth knowing that he has no idea who I am. I can’t understand this cruel twist of fate that turned a remarkably intelligent and gifted man into someone who struggles to tie together words into a complete sentence. I have no idea how to tell my children their grandfather doesn’t recognize them.

So what do I do?

Tomorrow I’m participating in the Walk to End Alzheimer’s. This walk won’t bring back my dad’s memories of my children and I or his full life, but it will help to find a cure. We need a cure. We need to find a way to prevent this disease from breaking the hearts of sons and daughters and wives and husbands, children and grandchildren. We need to figure out how to preserve the dignity of our loved ones. We need to stop this disease from making people invisible.

Tomorrow I walk for my dad – John Lamendola; the patriarch of my family; the lover of jazz; the teacher of music to thousands; the grandfather of my children.

I pray that with every step I take brings us one step closer to a cure because no one should be invisible.

Jen’s Gem: Our aging parents provide us with many lessons. Don’t overlook them.

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