“How did the weekend go?” I asked my oldest son after he came home from spending a few days with my parents.
“Were you a good listener?”
“Yes … Grandma told us about Pa.”
“She did? What did she say?”
“She said that Pa has short term memory loss,” he replied matter-of-factly.
“Yes, that’s right,” I confirm. “He’s kind of like Dory.”
“Not like Dory, Mom. Dory doesn’t remember anything. Pa still remembers some things.”
“I suppose that’s true,” I said, relieved and sad at the same time. Relieved my kids finally knew the truth, sad that this was the truth they needed to know.
Up until this point, my children didn’t know much about my dad’s medical condition. I reminded them to be respectful. My husband told them that their grandpa was aging differently than most people do and it was important to listen when he asked them to stop wrestling, jumping off the couch, and generally behaving like rambunctious little boys. But never, not once, did I tell them the truth. Because the truth was too difficult to explain — not only to them, but to myself as well.
About eight months ago, my dad was diagnosed with mild cognitive impairment, which causes problems with memory and thinking skills. While the words “Alzheimer’s Disease” have been bandied about and many of his symptoms are similar to those associated with the disease, his neurologist has yet to make that official determination. He asks the same question several times. He forgets the names of his grandkids. He is unsure of his birthday. In many ways, however, the diagnosis is a complete misnomer because there is nothing “mild” about it. But there are also long stretches of lucidity when, if you didn’t know about his condition, you might just suspect that he was having a “senior moment.”
Most of the time, it feels we are all living in limbo, a middle place where we know he isn’t well, but we aren’t sure how unwell he is just yet — or what direction the condition will take. I have read enough about dementia and Alzheimer’s Disease to know how the disease progresses, but I’ve also read enough to know that those predictions mean very little because every case is different.
For the past eight months, I have wondered about how to explain the situation to my children. How do I explain a medical condition when there isn’t a clear definition? How do I help them understand why their grandpa gets so impatient with them sometimes and perpetually calls them by the wrong name? How do I help them accept a medical condition that manifests in almost imperceptible ways — until one day, it becomes starkly apparent that something is very wrong? How do I help them understand that the person my dad is now is not the person I knew as Dad?
And how do I explain all of this when I don’t even understand it myself?
The truth is, I didn’t. I didn’t explain it to my children, because I didn’t understand it — or even accept — it myself. I denied there was a real problem. I kept it a secret from my in-laws and friends. I snapped back at my dad when he reprimanded my sons for doing typical little boy things, thinking that I might be able to change him. And I debated with my dad about politics and whether the Wisconsin Badgers made it to the Rose Bowl last year under the guise that convincing him I was “right” would somehow make things better. It was an exhausting, confusing, and fruitless endeavor.
I didn’t understand what was happening. I didn’t accept it. And I didn’t try to explain it.
But a few weeks ago, my kids and I went to see Finding Dory. We watched the lovable but amnesiac blue tang fish search for her home, with the help of a devoted group of friends and family. We laughed a lot. I cried a little. And then something inside me clicked: My dad is Dory. He has a medical condition. He has a short-term memory problem. He needs the help, devotion, and the love of family and friends. That’s it. Nothing more, nothing less.
And with that realization came an understanding and acceptance than any medical diagnosis and or explanation on WebMD had been unable to do. While the similarities between my dad’s dementia and Dory’s amnesia might not be perfect, they are pretty close. My dad asks the same questions several times even after they have been answered. He has trouble assessing risk. He grows frustrated when interrupted, which makes conversations with young children very difficult. He is emotional and sentimental at times, impatient and angry at other times.
There is nothing easy about dementia-related diseases, regardless of the condition’s name. It is painful to watch someone who used to be the epitome of independence become completely dependent on others for everything from transportation to meals and reminders about the day of the week. It is distressing to see someone who used to embrace risk and welcome adventure become fearful of almost everything. And it is downright agonizing to be caught in the middle of a fray between your parent and your own child because the older one can’t understand why he keeps getting interrupted and the younger one can’t understand why he is constantly being scolded.
And yet, after watching Dory swim her way home, I have an understanding and acceptance that wasn’t there before. I don’t get quite so frustrated when my dad insists his mom died when she was nearly 100 (she was actually 86). I answer repeated questions as if it were the first time I had been asked. I remind my sons that Pa scolds them because he’s worried about their safety, and I remind myself that this person my dad is turning into is not him, but a medical condition, and Dad is still in there somewhere.
Just like Dory’s mantra of “just keep swimming” meant more than those three words, I am recognizing that my dad’s mantras hold a meaning and feeling beyond their literal interpretations. When he says, “thank you kindly,” as he seems to do at least 50 times a day – after I set a plate of food in front of him, when my brother turns on the Brewers game, when my sister brings him a glass of iced tea or when my mom hands him a clean shirt — he means so much more than just “thank you.” His other mantra — “onward” — also carries a depth of meaning that this tiny word can’t hold.
In many ways, dementia is like swimming over the edge of Dory’s reef. One side is safe, comfortable, and familiar. It is filled with memories and understanding. The other side is deep, dark, and unknown. Names get lost and you repeat yourself. Questions are asked three, four, five times. You are lost and scared and uncertain which way to go. There is no silver lining, no easier way.
The only thing you can do is rely on those who love you most to guide you through the dark so that you can just keep swimming.