In Loving Memory

Living with Alzheimer's:

A Journey of Bravery and (Perhaps) a Tad Bit of Stubbornness

A Personal Piece Dedicated to the Memory of My Grandfather

 Grandfather Granddaughter Penn Yan

My Grandfather. He was a mountain of a man. I say was, not because he has passed, but because he has Alzheimer's Disease. Those of you that have experienced Alzheimer's know that it robs a person of every single thing that they are, and those of you that haven't experienced it, well, you're lucky.

There are stages of Alzheimer's. It begins with forgetfulness. Simple, everyday forgetfulness. Which, I believe, is what actually makes it so deadly. Because, who, when they're in their eighties really thinks anything of being a little forgetful? No. One. Not one person.

Then it progresses. They take away your license. Your freedom is gone. You're trapped in a house even though you're an extrovert and you thrive on interaction with people. You don't understand why you can't have a license. You discuss it continually and scheme to get it back. You start walking toward town in the middle of winter (even though it's way too cold for that) and no one knows where you went. Panic ensues. Luckily, you knocked on a nice person's door and they gave you a ride to town.

 photo credit: Jennifer Reynolds Lial,  jenlial.com

photo credit: Jennifer Reynolds Lial, jenlial.com

Now, it's more than just a few things that you can't remember. And your dexterity begins to go. You can't remember how to do things that you once could have done very easily and you also can't quite hold that screwdriver the way that you used to. But, here's the kicker. You still want to do everything that you used to do. You want to fix the thermostat because you know that was something you still needed to get to on your honey-do list. You try to go out to your shop even though, at this point, you may forget how to get back or even why you went out there in the first place. Then, you begin actually breaking things because you take them apart to fix them and can't remember how they go back together. Next thing you know, your home intercom is sitting on the counter all busted with no hope of ever going back.

One day you take the car keys and drive the car. You aren't doing it out of spite. You literally cannot remember that you aren't supposed to drive anymore. By some stroke of sheer luck, you think your Prius is broken down on the side of the road and your ex-son-in-law sees you. Your Prius isn't actually broken. You just don't realize anymore that it "shuts down" when it stops. You are returned safely home and they proceed to put an alarm on your house; not because they are worried of strangers coming in the night--simply to keep you in. They literally have an alarm on you to make sure that you stay trapped in your own home.

Next stage. You can't sleep. You want to go to the breakfast with your friends. That's been your daily routine for the past twenty years or so. You wake up at two in the morning to get ready for the Wagner. Your wife tries to explain to you that it's not time for the Wagner. You shake your head. You're confused. You can't keep up with conversations anymore. The dining room table--the gathering place for the last half century of your life--and you sit there, unable to follow. They move too fast. You finally piece together a thought. You think it's a thought. It actually makes no sense. Your family tries to help clarify the thought. You're trapped. In your house. In your head. Trapped.

 keuka lake grandparents

Next stage. Your daughter moves in. You need help remembering where the bathroom is. In your own home. Where you have lived for the past sixty some years. And you can't remember how to get to the bathroom. In fact, you sometimes can't remember why you even stood up out of your chair. You forget that you need to eat. You need your food cut up. You need help navigating from room to room. Putting your shoes on. Getting dressed. Showering. You sleep most of the day. You toss and turn at night.

Then today happened. Today, you couldn't drink. They talked to people in the know. You wouldn't have wanted to live this way. Trapped. They're making you comfortable. They say it signals the end. Just like that. You spend your days in bed. Nodding in and out of consciousness. Visitors in and out. Thankfully one thing has remained. You remember your people. You always greet them. In fact, that's the best part of visiting. The greeting. Sometimes I fool myself during that moment to think you've come back because your warm greeting sounds exactly like your old self. But it's not. You can greet, but you very rarely truly interact.

There are some other things that haven't changed. You like holding Gram's hand. That's always been a thing with you two. I loved walking behind you when you were doing that. You led her, protected her, held doors for her. For me. When she coughs, you sit up to check on her. You protect her. Also, the love. The love in your eyes for your wife of sixty plus years. The love of your family. Fierce, fierce love.

My grandfather was a mountain of a man. He grew up poor, as most did during the time of the depression. He worked for the telephone company his entire life, and received a good pension because of his hard work and dedication. He was an inventor, an innovator, an engineer, an entrepreneur, and a creative genius. He invested his hard-earned money. He built two trailer parks and purchased some rental properties. He and my grandmother were able to enjoy a beautiful lake house on Keuka Lake with their family in the summers, skiing at Bristol Mountain in the winters, and a gorgeous condominium with good friends in Siesta Key, Florida.

He loved people and the environment. In his seventies, he tried to convince my grandmother that alternate energy was the future. He wanted to build a wind farm. [She said no.] A few years later, several wind farms pop up. He once called General Motors to tell them that they missed the boat. I sat there as he told the person on the other end of the line that he was no longer going to support their company because they were not looking to the future. Gas prices were rising he said. Fossil fuels are being phased out he said. Alternate energy was a must he said. We must consider the environment and our children's futures. He bought a Prius. He marveled at the ingenuity and futuristic thinking, pouring through the car manual for a month after he made the purchase. 

Yesterday, I had to explain to my three-year-old that Great Grandpa was really sick. A while after she hugged him goodbye and we left their house we were riding in the truck on the way home and she inquired softly from the back seat, "Mama, how can we make Grandpa better?" This morning she followed it up with, "Mama, how is Nonnie (my mother) going to get a new Daddy?" My heart is breaking into a million pieces. I am a wreck of a human.

My grandfather was a mountain of a man.

(Author's note: My grandfather passed peacefully surrounded by his family on April 4, 2017. Rest in peace, Grandpa. Rest in peace. )

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