Updated: Nov 19, 2021
After my father was diagnosed with dementia, I read a lot about his particular flavor and talked to friends who had loved ones experience something similar. They shared the challenges, heartbreak, and coping mechanisms, helping me to know what's coming and how to address those challenges.
Two things have surprised me about dementia. The first is how common and widespread it is. When I tell people I'm living with my parents to help my mom deal with my dad's dementia, almost always people share their own stories.
A plumber installing a gas line at our new house told me about his mother's struggle. As her dementia progressed along with her anxiety, looking at old photographs would calm her down. A woman working at a Goodwill where I was donating household items said a prayer for me on the back steps of the store, gave me her name, and told me to call her anytime, as I would need someone to talk to about what was coming. A neighbor told me to have a plan for myself for when the experience crushed me because it will, he said. And when I bought something heavy off Facebook Marketplace and messaged the person on the other end that my dad was coming with me to help move it, but that he had dementia and would inevitably forget to keep his mask on or stay distanced, this lovely woman responded that she works with dementia patients. When we got to her house, she engaged him in a conversation and listened to him tell her the same thing three times, giving me a few minutes of mental and emotional freedom, which was better than her antique furniture at a reasonable price.
People have been amazingly kind and generous and understanding. It's one of those experiences where we don't seem so different and polarized, as we hear all the time. It's a very real human experience that does not discriminate by income, education, race, gender, or any other demographic. Dementia is universal, and it doesn't care who you voted for.
The second thing I've learned is that even though so many people have experienced it with a family member or loved one, we don't talk much about it without prompting.
A few years ago my mother and I joined a dementia support group hosted by a local church. This group of older women caring for spouses or parents are unrecognized super heroes. One tiny, petite woman had physically cared for a man twice to three times her size for years, lifting, moving, feeding, dressing. Another had withstood years of verbal abuse while trying to find a facility that would take a man who behaved more like a juvenile delinquent than an elderly gentleman. And one woman had suspected something was changing with her beautiful and loving husband when she woke to find him beating her.
I would sometimes get frustrated with my mother when she would tell me something that was happening with my dad and say, "Should I tell them this at group?" Of course! It's a safe place; talk about it! They'll have suggestions for what to do, I would argue.
But then something terrible happened with my dad, something crushing, something I cannot yet write about. And it's led me to understand why it's so hard for people to talk about it.
The event that happened that has temporarily (?) silenced me in no way represents who my dad is, which is exactly why it's so painful. The father whom I adore would never have behaved that way. Never. Under no circumstances would this represent who he is. So it seems unfair to write about that event and attach it to him and his life story. In fact, no one would hate this story being shared more than my dad himself. If he knew - the person he was 20 years ago - he'd be heartbroken and devastated to learn of what he had done. Even with dementia, if I told him today what had happened just a few weeks ago, he would say, "No, I didn't do that." He would never believe me.
At the same time, I started writing this blog to process this experience as a kind of catharsis, and because I didn't find many personal accounts writing about this topic, so I hoped others might benefit too.
And my father, the one whom I have tried to model in so many ways, would want me to figure out my own path. I have so many examples of that over the years, but the one that stands out is this one:
I had moved to the East coast for graduate school followed by five years working in Washington DC, achieving every goal I had made for myself relatively quickly, yet not feeling content with that. I had made the decision to move back to Ohio and had saved money for the move and to live there for at least six months while I found a job.
My dad, being my dad, brought a trailer to DC, packed it up with me, and drove it to an apartment in Yellow Springs. At some point while moving things up the stairs, I sat down and broke into tears and said, "What am I doing?" My dad responded, "I don't know what you're doing, but I know you're going to figure it out."
That's exactly the kind of parent he was for me. He trusted me to make my own decisions and figure out my own path, because he knew that's where the magic was. And that confidence in me was magic indeed. I could not have asked for a parent more in tune with who I am and what I needed, and his willingness to give so completely and unconditionally to me was the greatest safety net a child could have. I can take risks and test boundaries and be fearless because of what he gave me.
While he will never read this and would not understand even if he did, I'm writing him this to apologize for having to keep writing no matter how bad or ugly or heavy or painful it becomes. While I hate attaching this experience to the incredible man that my life was gifted with, I promise to him to always respect that man and not to confuse the person who he was and the life that he lived with the person who is slowly and painfully leaving the world.
Ultimately, he may not know what I'm doing, but he knows I'm going to figure this out. And it's up to me to trust that.
Helping me do the hard work on refinishing a chest