You know, it’s funny how grieving can sneak up on you. Most of the time, I’m pretty okay with where we are in my dad’s dementia journey. I’d call it a “struggle,” but really, we’re past the point where there’s anything to fight, so “journey” seems more appropriate. While I think about my dad every day, and certainly have moments where the enormity of where we are hits me, I manage to keep the tears and panic at bay a good portion of the time. But there are those times where the grief sneak attacks you. A couple days ago, I was talking to my mom, and she said that a man she knows from the gym asked to talk to her about the Memory Disorders Clinic at UVa because he knew we had taken my dad there for several years. They have an absolutely brilliant and caring doctor there named Carol Manning, MD who we can’t say enough good things about, so Mom was happy to share our experiences about the facility. When Mom sat down to talk to him, she learned that he, like my dad, has frontotemporal dementia. As soon as she told me, I said, “Fuuuuuuuuck!” I don’t even know this man, and I started tearing up. I was devastated for him.
He’s only in his 60’s. Just like my dad. He has a daughter named Emily who is just about the age I was when my dad was diagnosed. Just like my dad. He has stopped driving after failing a test at the Woodrow Wilson Rehabilitation Center that helps evaluate the driving capabilities of people with medical or cognitive issues. Just like my dad. He had been struggling at work and had to retire. Just like my dad. He was scared. Just like my dad.
When she told me about all of this, I was immediately brought back to the early stages of my dad’s disease. I remember how scared we all were. I remember that it was around this time of year that he went for testing at the Memory Disorders Clinic, and we had to wait several weeks for the results to come back. But we knew that it would tell us he had some kind of dementia, we just didn’t know what kind. I flew up from FL to be there at the appointment so I could hear the diagnosis and ask questions. It had snowed the night before, so it was a worrisome drive to town to get to the clinic, and I remember how tight my stomach felt the whole ride, both from fear of being on the roads and fear of what would happen at the appointment. I remember sitting in the office and hearing the words “frontotemporal dementia” for the first time. I remember being shocked to learn that Dad couldn’t tell time on a clock, and that he couldn’t explain the meaning behind a phrase like “There’s no use crying over spilled milk.” I remember the doctor telling us that there were no cures or treatments that could delay the disease’s progression. Drugs that work to slow Alzheimer’s have no effect on frontotemporal dementia, so all we could do was put him on meds to try to relieve the anxiety the disease was causing. I remember walking to the car in the parking lot and watching my dad’s shoulders start to shake. I remember my mom and dad and I wrapped in a group hug by the side of the car, rocking and weeping. I remember standing there in the cold Virginia air with wet snow seeping into my sneakers and heart and feeling utterly helpless. And in that moment, I knew that I was ceasing to play the role of daughter to him and beginning the role of caretaker. When I got back to FL, I remember going online and looking up the disease and reading the prognosis of a life span of 2 to 10 years following diagnosis. I remember telling my dad not to do anything stupid or noble (depending on your point of view) like committing suicide to spare us. I remember the terror of what the future would hold.
When I look back at that time, it felt like the world was ending. The tears start flowing remembering how much emotional pain my dad was in. I grieve for how he felt and how I couldn’t make it better for him, how I couldn’t protect him. I grieve knowing that he has become exactly what he was most afraid of being.
So when I learned about this man that Mom talked to who is somewhat newly diagnosed, it throws me back into that time frame, and I grieve for him and his family. I know at least some of what lies in store for them, and I wish I could protect them, too. As Dad’s disease has progressed, and I have had to adjust to the new normal repeatedly, I start to forget where we’ve already been. Each new stage feels devastating. Now that he’s nearing the end, it feels like this is the worst place to be. But remembering how it used to be, that feels equally like the worst place to be. In some ways, I’m grateful that we’re no longer there. Part of me is grateful that we don’t have to go through this too much longer. Don’t get me wrong, I’d give anything to go back to the time early in the disease where he could still laugh at my jokes, or dance around the dining room table with me, or share his love of music, or just give me a proud-papa look. But that time was also so incredibly hard, because he was scared and angry and frustrated and cognizant of the fact that he was losing himself. He had so little control over his emotions and his actions, and he accidentally hurt us, too, sometimes. So while I’d love to have so many of those things back, he’s in such a better place now that he’s beyond knowing what he’s lost.
I’ll leave you with this thought: I was talking to a friend last night about grief. Today is the anniversary of her sister’s death, and she’s grieving hard. She said that she’s been seeing a grief counselor who gave her this thought: Imagine your love is a cupful of water. If you love someone fully, that cup is full. When you lose that someone, the water pours out. The more water had been in the cup, the emptier you perceive the cup to be. We should be grateful that we had such a full cup, even if it means that our grief is that much stronger as a result.