Dementia, Alzheimer's, and the More Noble Disease

I was in the single digits. My grandparents, whom I dearly loved, were picking me up from school in their ’77 Ford Granada. I was already relishing in the joys to come. I settled in for the drive, probably with no seatbelt – besides, this was the 80’s. We hadn’t made it too far out of town, perhaps five miles, when my grandfather randomly yanked the wheel of the car to the left. This big boat of a car went skidding around in circles, coming to rest near the side of the road. I remember the world spinning in slow motion until everything was silent.

We all three sat in stunned silence, looking around, surveying to see if damage had been occurred. No damage, yet, lots of damage.

I was in the backseat, and through the thickening silence, I glanced at my grandfather and had this thought:

“Something is terribly wrong.”

My grandfather had Alzheimer's for over 25 years. I never really knew him without the disease. But, little bits I remember were how gentle he was. How his laugh was contagious. And how he adored my grandmother. Then, of course, I remember the worst parts. Those lasted for so many years, and I was only seeing them through "kid eyes."

Daddy went with me to physical therapy the other day. We stopped at a gas station to get a drink and go to the restroom. I saw it firsthand. He spoke to a man with a smile on his face, and then there was a look on his face I hadn’t seen. He was turning in slow circles, with a $10 bill in his hand. He kept handing it to me, and then kind of not handing it to me. I finally got him to pick out a drink. And, he went to the car. We got back in the car and he said, “I got so confused in there.” I said, “That’s okay, Daddy.” We breathed through it and went on with our day. I told him he was so brave for even saying he was confused. And, he is. Most people would never admit such a thing, but Daddy is open with us about his struggle.

Daddy has dementia. And, y’all, it’s not good. People keep asking me how my parents are. And, I’m giving it to them right between the eyes. “They’re struggling. Daddy’s not doing well.” They stop and look at me, concerned, and ask if it’s his heart or something. Nope. Not even close. That would almost be a relief. “Not his heart. It’s his mind.” When I say that, there’s a ripple of deeper concern. Shocked sighs. “I had no idea.” “I saw him two days ago and he was fine!” No, folks. Not so. He wasn’t fine.

Daddy had a small heart attack a few years ago and lost some blood flow to his brain for a little while- maybe three hours or so. That tipped the scale on the disease. Triggered the beginning. Sure, he may have been on the path already, but it would have taken much longer.

Don’t get me wrong, he has good days and bad days. There are times when he’s almost exactly himself. But, those times are becoming a bit more rare.

Why do people keep those diseases so quiet? Dementia. Alzheimer’s.

Why is there so much shame to them? Is it shame? What is it that makes people think they have to hide it? Why does cancer seem much more “nobler” than dementia? My daddy is sick. Much more sick than I am. He is terminally ill. Yet, I seem to have the more virtuous illness. The disease people can talk about more comfortably. Is it because I won’t act irrationally at random moments? (little do they know…) Won’t make people uncomfortable by stating the same thing over and over? Perhaps it’s more easily understood and predictable. Maybe people are just scared to death of it - I know I am.

Is cancer a more noble disease than one with a disease-riddled mind?

Some people seem to try so hard to hide it. And, I truly understand that. My grandfather had Alzheimer’s. “Sharp as a tack,” my grandmother would proudly spout off when anyone asked how he was. What even? Whose brilliant idea was that? There is so much shame in any type of mental illness. That should not be so. It eventually affects everyone in some way. Why wouldn’t you let as many people know as possible? I can’t think of a disease in which people need more help and support. Especially the caregivers.

Y’all. Life is hard. Bodies malfunction. Brains misfire. We get old. Gravity sucks. And, most of the time, it’s just random. Things just happen.

My Daddy was such a strong and independent man. Such a kind and giving soul. Such a warm heart. He could play the socks off of anyone at 42, Spades, Hand and Foot…and don’t get me started on Canasta. He knew how to do things. Anything. Get places. Take care of us. Keep us safe. Keep us kind. Yes, he could be a total pain sometimes, but who of us can’t be?

Now, I am watching him slowly contract into some old man I don’t know. But, oh, how I Love him.

I’m watching this disease not only wilt my strong, big, dad, but it’s weakening my mother, as well. Mama has had to change into someone, I’m sure, she doesn’t enjoy that much. She has to manage every single thing that she didn’t do before. She used to be so easy-going and calm, now she’s a bundle of nerves and commands. But, it’s a necessity. She has to take care of every single part of the day. We all do what we must in order to get through difficult times. Things change us. That is inevitable. We cannot go through our lives unchanged, without scars, without some lessons.

My mother tries so hard. She’s honestly not trying to hide the fact that Daddy is terminally ill. She just doesn’t mention it in front of him. But, she’s almost always in front of him. He’s always by her side. He has to be. The only place he can be left completely on his own is at home, for now. There will come a time when he won’t even be able to be left at home. My mom still keeps on going, every single day. She finds something to tickle her, something to enjoy. That, also, is a massive act of strength and bravery.

I think one of the worst parts is, Daddy is truly heartbroken by the disease. He knows it’s happening. He is so apologetic. He cries so often. I can’t imagine what it must feel like. I can’t even let my mind wander into the scenario he goes through each day. Scared to say the wrong thing. Not knowing anything to talk about. Feeling out of place, when he once felt like the life of the party. Knowing what is happening but not being able to stop it.

I’ve always worried that if I had this type of disease people wouldn’t remember the woman I was. They’d just see the decaying person and that would stick in their minds. I don’t want that to happen.

I want y’all to remember my Daddy. The way he was. That silly man. That big, comforting man. Laughing. Head held high. Working at Wiley’s Funeral Home – which was his absolute favorite job he ever had. Playing games - feigning cheating but making sure you saw him. Crying at sad movies. Giving candy to little kids at church. Welcoming everyone in at the front doors. Praying. Singing, off key, but singing so loudly. Loving rock music. Driving the van with the camper behind, with his cap on backwards. Wearing jams. Staring at campfires. Reading his Bible. Working his butt off. Telling every little detail of his day.

It’s hard to look past dementia. To see past the mental illness that has gripped our lives. It’s even hard for us to see past it. It’s such a presence in our lives that affects every single day.

I know so many people who have suffered with this disease. I know so many caregivers and families worn down with the immense pressure that this disease brings. I honestly can’t think of a worse disease.

If you know someone who has any of these diseases, if you know someone who is struggling to give care to one of these people, reach out to them and let them know you’re there. It’s important to have safe places. I always want to be a safe place for my dad to be. I can’t imagine how hard life is for them. Everyone has the disease differently, and each caregiver has it different. But, one thing that is common in all of them is, it’s probably the hardest thing they’ve ever been through.

I would never speak about Daddy or my grandfather in an unkind way or do anything to embarass them. I write this with the sole purpose that it might help someone, somewhere, and I know they both would want that, too.

Much love to each of you.