When I started this blog, it was to share a little about Parkinson's and my experiences as a daughter of someone with the disease. It's turned in to a lot of different things along the way, but tonight, it's all about being that daughter. But even more so about being a grown woman who still feels like a little girl at times. About wanting someone to protect me, but my parents can't do that anymore. My mom is gone, and for all sense and purposes, my dad is slowly disappearing. It is a long, grueling, painful good-bye.
Today was a rough, rough day. I visited dad this morning and he was not himself. He seems to be more confused every time I see him, but today he was especially so. I don't feel comfortable getting into all the details in order to protect some of my dad's dignity, but I found myself in a situation that was incredibly uncomfortable for me and I had to call staff for help.
That's what we pay them for. I know that. But there is incredible guilt at times for me when I realize that I can't help my dad with everything. There are just some things I can't do. I could probably help anyone else with it...but not my dad. It is absolutely one of the most difficult things in life to watch a parent wither away. I watched it with my mom and it was so painful. But today I realized that cancer took my mom rather quickly...and for the most part, painlessly. But this hell that is Parkinson's...and this dementia or Alzheimer's or whatever the hell is happening to him in his brain...it's a whole new level of pain. Every day I feel like I lose another little part of my dad.
Tonight I received a call from the staff at my dad's assisted living community. Dad had become agitated and combative with his bath aide. That is not my dad. I don't think there is a person who ever met my dad who didn't enjoy him. Everyone loved my dad. Now, he is confused and angry and developing paranoia. I spent over 1/2 hour on the phone with him trying to figure out what in the world was going on with him. FINALLY, I had an A-Ha moment and was able to understand what had set him off. It was something simple. But simple things are huge to my dad. Anything that strays from the norm throws him. And I found a bit of grace with myself over the fact that it may take me a while, but I am the only person who could have figured out what happened with him tonight. I am grateful that I can be there in times like this.
Ultimately, I spent over an hour talking with him and the nursing staff to get some sort of reconciliation. And it hit me that this is just the beginning. These calls will continue to come more often. They will come in the middle of the night. Things will become harder to understand. Dad will become lost in his mind somewhere and I can't travel with him.
And I can't stop it.
I can't fix it.
I have no control.
I have to surrender.
But this is my dad. When I was 18, I had a license plate that said DDYSGRL. I was so proud of the man who was my dad. My mom and I struggled to understand one another, but my dad, he was always there. I know he didn't always understand me either, but he always listened. He tried to mediate between me and mom and I know that had to be incredibly hard for him. I always wanted to grow up to be as good of a person as my dad was. And I think I've succeeded in many ways.
But this...this is something I simply don't know how to do. It is the most incredibly painful thing to watch and to experience. Of course, I didn't know how to lose a mother to cancer either...and I did it. I will walk this path just like all the rest. I guess I'm just more aware that this path is becoming bumpier and narrow and more harrowing.
I have spent 2 1/2 years studying aging. I have spent countless hours researching Parkinson's and Alzheimer's. I understand the diseases. I can give you statistics and studies.
But none of that prepares the human heart to go through this.
But nothing could have prepared me for my mom's death. And her death opened up a new world for me. A world where I wanted to help others facing life-ending experiences of their own or with their loved ones. That would never have happened if I hadn't lost my mom. And now...I know this path I walk is one I must walk in order to help others. I know there are great and abundant lessons to be learned. But I'd be lying if I said I wasn't just sick and tired of lessons.
And so I sit awake...wondering what is running through my dad's mind right now. I sit awake and worry about my dad. Ahhh...how the tables have turned. I will go lie down soon and stare at the ceiling. I know worry does nothing...and yet, I still do it. Especially on nights after long days like this one.
However...writing all this helped...messaging tonight with a friend who understands, helped...laughing today with another friend who is sharing a new journey with me, helped...a hug from my 12 1/2 year old ("just cuz, mom"), helped...having my husband home from a quick trip to the east coast, helped...
Tomorrow is a new day. And I will walk it like all the rest. One foot in front of the other. One step at a time. Doing the best I can and giving myself grace, that every day, whatever my best is that day, it is always good enough.
