We are driving along a stretch of Interstate 94 West between Minneapolis and St. Cloud, Minnesota when I first hear the news about my dad.

“Sue, you are talking about Sue!” I say, frustrated now, to my mom. She does not seem to be making any sense. Aunt Sue, my dad’s sister, was diagnosed with Mild Cognitive Impairment (MCI) about a year ago, and my mom has been giving me the latest news about her condition. But now she is saying things that do not seem to be referring to Sue anymore.

“No,” she says, equally frustrated, her hands tight on the steering wheel.

“I am talking about your dad now. He has MCI too.”

A moment passes. It is brief, but it is such a big moment that it seems to last longer. It is a moment on the edge, where one second prior to it everything was OK, and then there is this moment, and then there is everything after. I am in the middle moment now, but I am plunging toward the after-moment way too fast. My dad was fine, and now he is not.

Nothing will ever be the same again.

Do you have a mirror?
“Dorothy, bring me a mirror so I can watch myself starve to death!” my great-grandfather would yell to my grandmother, rapping his cane on the window. This phrase became a family favorite, passed down generations. Shortened to “do you have a mirror?” it has happily replaced asking if dinner is ready or mentioning that we might be hungry.

But it is another mirror now. My parents are visiting me in West Seattle and I have put them to work. My mom used to list chores for me and my brother each Saturday. She would title the list of chores “busy week” or “lazy week.” Other than the title, there appeared to be no distinction between the two lists. So whenever my parents visit it is always “busy week.” Turnabout is fair play, after all.

Two of the items listed for this busy week are “Hang mirror above fireplace” and “Put up coat rack.” Neither chore is completed. My dad starts with the coat rack, an antique I bought for $50 that consists of a foot-long black lacquered piece of wood with four evenly spaced metal lion heads with coat hooks protruding from the lions’ mouths.

The assignment is simple – line it up and screw it to the wall – but my dad spends days thinking and talking about how he might accomplish the task, and consults at least three people at the hardware store. In the end, I am left with a hole in my wall the size of a softball and my dad sitting on the couch in defeat, looking up at me blankly. He says, “I don’t know what to do.”

It is the first sign of his illness surfacing.

People in hell want ice water
When I would want something I could not have, Dad would say “People in hell want ice water.”

He goes from MCI to Alzheimer’s over the course of a few years. The difference between the two is negligible – he gets slowly worse – yet significant. The first diagnosis, which I now think of as cute, light, easy, almost catchy “Mild Cognitive Impairment” – is now the ugly, dark, hard, and impossible to spell and pronounce “Alzheimer’s disease.” Mild Cognitive Impairment even has an easy-to-reference, handy acronym: MCI. Alzheimer’s disease does not; it lives as a complicated mouthful.

The obvious acronym, AD, is not used. I wonder why. It seems fitting for it to parallel the biblical “After Death” because to find out that a loved one has this disease is to die a little inside. And then to die a little more as time goes by. And even more so for the person who is diagnosed. It is as if his essence was placed in a special AD hourglass that was flipped at the moment of diagnosis, and slowly, particle by particle, he disappears.

I think about a morning in seventh grade. I was walking to the school bus stop and my dad took the dog and attempted to walk with me. I snapped that I wanted to walk alone; I was a big girl who did not need to be seen with her dad. Even then, through the lens of selfishness, I felt bad and turned to look for him, but he was not there. I ended up missing my bus.

Now when I turn to look for him, he is not there anymore.

I want my dad back.  People in hell want ice water.

A couple for each corner
Dad had imaginary friends when he was a boy. There were eight total, four couples. Each couple lived in a separate corner of a vacant lot next to his childhood home. Every day he would take his golden retriever, Shep, and together they would make the rounds. The couples were named Hockock and Hernan, Aidie and Therm, Hucklebine and Wine… no one remembers the name of the fourth couple.

Years ago, before his diagnosis, I jokingly asked what he thought his friends were doing now. I was laughing, expecting him to say something to the effect that they were imaginary, so they do not exist, but instead he said,

“They’d be long dead by now; they were pretty old back then.”

I think of these friends often. I used to think of them as simply one of many of Dad’s colorful childhood memories, but now I think about them and wonder if they have come back to him. I hope they are comforting him, as old friends do.

You got your girl
My dad always wanted a girl. When I was born, he was not allowed in the room during my mom’s labor and delivery. It was a nice spring day in Wisconsin, so he went home and raked the yard to try to keep busy and not worry about Mom and me. When he finally got the OK to see her, he walked in the room and she looked up at him and smiled.

“You got your girl,” she said.

From that moment on, he and I had a special bond. We have the same sense of humor, and the same kindness and gentleness of spirit. He has a special place in my heart, and he has always taken care of me.

Our favorite joke by far – me and my dad’s – is the classic

“A horse walks into a bar. The bartender says, ‘Hey buddy, why the long face?’”

One of us tells the joke and we laugh. Then we laugh at each other laughing, and again at the joke itself, and then at each other again. My mom does not think the joke is funny and this sets us off again, doubled over now, gasping for breath.

As my dad slowly leaves me, the joke leaves me as well. As if the humor is in the sharing, not in the joke itself. Or maybe it is a selfish thing and I do not want to ever share this with anyone else.

When I was five, I made my dad a “tie” – a makeshift fabric triangle – out of leftover material from a jumper Mom made for me. The material was maraschino-cherry color corduroy with a graffiti pattern of words (ball, kite) and corresponding pictures. Since it was a triangular piece of fabric, he had to tuck the top of it under his shirt collar. The bottom of the tie rested just above the chest.

Each morning I padded in my footed pajamas to his room to watch him get ready for work. Part of his morning ritual was to dutifully “put on” my tie before he left the house. I did not know he would remove it the minute he stepped out the door. What I knew is he loved it so much he wore it every day.

Around that same age I also drew him a picture – it was in pencil and depicted a misshapen head, rectangle eyeglasses and the caption “Dad – Ape.” My dad has an abundance of body hair and so I thought the caption was quite fitting, despite the lack of any actual hair – even on his head – in the drawing. This one he hung in his office. He was a professor at a university and I often wonder what his students thought of that drawing.

As the father/daughter dynamic changes and I take care of him now, I think about what my mom said to him the day I was born.

You got your girl.

I may have been born at night, but not last night
Denial is a funny thing. I could not get through this without him, so he has been like a friend to me – a friend who makes it all better. My dad used to be the one who could make it all better, but Denial has had to step in.

Dad would say “I may have been born at night, but not last night” when he was illustrating that he was not naïve or oblivious to what was going on. But I want that oblivion. I do not want to know what is going on now with my dad; I do not want to know, see, talk about, hear about, or even think about it. Maybe it will not be real then.

Unfortunately Denial travels with his side-kick Guilt. I hate that bitch.  Having been raised Catholic; I am tremendously familiar with her already. Denial wants me to hold back, hold in, and hold on. He is stoic and unemotional. Guilt wants me to feel. Not sad, but bad. She makes me feel bad about being in denial, not feeling bad enough, not doing enough, not wanting the right things. As I said, I hate that bitch.

That is not to say that I have not felt sad. Denial and Guilt are only so strong, after all. And this introduces the third player. Grief is unisex. It is sneaky and a bully. It bulldozes over Denial effortlessly, scoffs at Guilt and tackles me out of nowhere. Grief says,

“This. Is. Happening. Now.”

I use Denial to hold back Grief, and end up living with Guilt.

Can I be born last night?

Is that a neon squirrel?
Dad’s love of birds drove him to concoct elaborate houses and feeders for them and he would become increasingly irate when other animals ate the bird food, namely squirrels. The bird houses started to be adorned with long metal casings around the stands and then were built with smaller and smaller ledges and openings. Not only did the squirrels still find a way to get to the food, but the ones that he trapped and drove across town most certainly came back.

“See it? That’s the same goddamn squirrel from last week!”
“Dad, how can you possibly tell?”
“Look at that bastard! I know it’s him.”

He started driving them further away, even across the Mississippi river, but those bastards came back time and again. One day I saw a squirrel in a cage with a neon green stripe down his back.

“Dad! What did you do?”
“This way I’ll know when he comes back” he said.

I often wondered if the squirrel was ostracized in the squirrel community after that. I told the story to a friend who lived across the river where Dad took his squirrels. Laughing, she told me, “You are not going to believe this, but my dad does the same – sprays paints them and brings them to your side of the river!”

We never did see a spray-painted squirrel eating our bird food but this story illustrates the kind of person my dad was – first, calling a squirrel a bastard is about as angry as he ever got and even then he used a live trap and drove it across town. And, he was only trying to protect the birds.

I feel protective of him now; I want to build elaborate structures to keep him safe, and physically remove obstacles in his way. Since I cannot spray paint a squirrel to protect him, I do this by simply letting him be. Instead of correcting or questioning him, I let him live in his reality. When he tells me he is friends with President Obama, who just called him, I smile and ask what they talked about, secretively happy he is still a liberal.

This comes so easily and intuitively to me but I know it is hard for some people. They get frustrated, or embarrassed, and want their loved ones to “act normal.”

There’s a place in the Netherlands called “Dementiaville” that lets patients do whatever comes naturally to them. They nurture the individual’s reality, whatever that may be.

This is what I do when I am with my dad, and I learned this from him.

Protect the birds.

Is it time for coconut oil?
You cannot be a child of a parent with Alzheimer’s without thinking about your own future. Do I want to know if I have the gene? Absolutely not. If there was a cure or a way to prevent it – especially if it was “caught early” – that would be different. But as it stands, it would only torment me, potentially even more than it already does.

According to the Alzheimer’s Association, one in eight older Americans has Alzheimer’s disease, and it is the sixth leading cause of death in America. It is the most common type of dementia (accounting for 60-80% of all dementias), it is fatal, and there is no cure.

We are in Wisconsin visiting my grandma Dot and I notice a quart-sized tub of coconut oil sitting on the counter. I ask my mom about it and she said she read a book written by a doctor about how coconut oil helped her husband with Alzheimer’s. Dr. Mary Newport found that medium chain triglycerides, the key ingredient in coconut oil, may slow and even reverse the effects of Alzheimer’s.

A common assessment test for Alzheimer’s is called the clock drawing test. As the title implies, you ask the person to draw a clock. It may sound simple, but the images produced by patients with this disease are shocking. After my mom read Dr. Newport’s book she had my dad draw a clock and this is what it looked like.

My mom started to give my dad coconut oil, but he was too far along for it to have any impact.

I went out and bought several tubs for myself.

It’s like being pecked to death by a duck
Alzheimer’s disease is an agonizingly slow demise. I have used one of my dad’s favorite sayings – “It’s like being pecked to death by a duck” – many times, but never has it been as fitting as when describing the trajectory of Alzheimer’s.

On my dad’s side of the family, his mom has old age dementia, and he and his sister Sue have Alzheimer’s. Not the best odds. I used to think that dementia was dementia – yes, there are different types – but they all present in a similar fashion. I was wrong.

My grandmother’s dementia leaves her with short-term memory loss. Spend a day with her, and you will have one of the best days of your life. She is the funniest person I know. Her nickname is “Giggles” and she tells jokes and then laughs at them. I find her delightful. With dementia, she acts the same as she always has (and I am sure she can draw a clock), but she will likely not remember much, if any, of what you talked about an hour ago. She will remember many things that happened years ago, however, as her long-term memory is still fairly intact.

In sharp contrast, my dad and Sue are unable to hold a conversation. It started with struggling to find the words they were looking for, and progressed to simply not being able to speak in a coherent fashion.

Alzheimer’s is far more than memory loss. People with the disease cannot identify objects that are directly in front of them. They may see the object, but since they do not recognize it, it is as if it is not there. Sue was diagnosed first, and this was the initial behavior change in her that struck me. She was in the kitchen trying to make dinner and items she was looking for were sitting on the counter directly in front of her and she had no idea, even after they were pointed out.

Later, they lose their depth perception and consequently their mobility. Something as simple as walking across the living room becomes potentially walking off the side of a cliff to someone without depth perception. A throw rug could be a black hole. Now that I see the difference first hand between old age dementia and Alzheimer’s (at least how it presents in my family) I think dementia would be a walk in the park. Literally, I could take a walk in the park, and carry on a conversation with loved ones at the same time. I might not remember it, but at least I could do it. And they would remember it.

With medication, Alzheimer’s can be slowed, but only for so long, and then there is “the drop.” My dad’s drop was right after I saw him in the summer of 2012. My mom had to make the heartbreaking yet inevitable decision to move him to an adult family home.

Before I saw him for the first time after his move, my mom and brother and I met with the priest at my parents’ church. My mom told her priest that it is hard for her to see my dad because,

“It is like his soul already went to heaven but his body is still here.”

And that is the worst part. Letting go is often easier than hanging on. Sometimes I find myself talking about him in the past tense. My husband lost his mom a year ago and tells me what we are going through seems much worse. It is a concept that is as hard to feel as it is to swallow, but death may be better than this disease’s aftermath. With death I could kick Guilt to the door, and finally open it to grief.

Hockock and Hernan
I am visiting my dad where he now lives with a caregiver and a handful of others. It is a home like any other really, with home-cooked meals, and kids running around; there is even a sweet black cat named “Hoot” that lives in Dad’s room, left by its former owner who passed away. We are sitting in the living room and I am trying to bring up stories that might entice some sort of recognition from my dad.

He seems content and smiles sometimes, but his eyes are vacant of those moments of knowing, those flickers of recognition that others have.

I mention that I have our old canoe out in Seattle now and I see something, briefly, in his eyes. He laughs. I ask him if he remembers our canoe trips down the Black River, or those times when he was in training for treks to the boundary waters and would run around the cemetery adjacent to his house with the canoe on his head, often receiving honks from passing cars. But the vacancy is back.

I know what to ask.

“Hey Dad, have you talked to Hockock and Hernan lately?”

His eyes are bright and can see. His smile reaches his eyes and he slaps his hand emphatically on his knee.

“Yes!” he exclaims.

He looks at me, as if to say,

“How did you know?”