Living with a father’s dementia

Scott Maxwell remembers his dad this Christmas, even if he doesn’t.

My father was once president of the North Carolina Bar Association.

He volunteer coached a high school swim team for nearly 30 years, winning five state championships and coaching all three of his children along the way.

He was the chairman of the local homeless shelter, head of the arts council and mentor to students at Duke University School of Law.

But right now, all he wants to do is look for squirrels.

Squirrels make him happy.

So, as Mom and I walk around the property of his dementia facility in Pennsylvania, we pause anytime he spies one of the everyday critters, all of us marveling as if we’ve just spotted a unicorn.

“There’s one!” he says. “That’s right, Jim,” my mother says, reassuring him that he did, in fact, see one this time.

Sometimes it is just a pile of leaves. We used to correct him when he made a mistake. But not anymore. What’s the point?

The frontal and temporal lobes of his brain simply don’t work properly. You can tell him that leaves aren’t squirrels, that he should wait to eat until the blessing is finished or that he shouldn’t wander off in the middle of a theater performance. But none of it sticks.

He just cheerfully responds “OK” or “Thank you” … and then continues doing the very thing we all just agreed he shouldn’t.

So during a recent fall visit, we congratulate this man — once recognized for his brilliant legal mind — for spotting squirrels, real and imagined.

And now, as I prepare for Christmas, I steel myself for the visit, knowing the man I’m going to see isn’t the same man who taught me to rig a fishing line, ride a bike and open the car door for my dates.

Like many families, our journey to diagnosis was slow, painful and, in hindsight, ridiculously delayed.

We noticed small things at first. His sense of humor dwindled. He misplayed cards in hearts. He wasn’t as

enchanted with spending time with his grandchildren.

One of my more painful memories is from the night he was inducted in the high school coaching hall-offame. His speech started fine, but then he just started rattling off a litany of old swim times. At first, it was almost endearing. Then strange. Then embarrassing. Some of his former swimmers averted their eyes.

I was right there on stage with him. Standing there, humiliated, wanting to stop him from talking.

But I couldn’t.

Mom finally did. She’s the one who has suffered most.

You’d like to think that there is some kind of quaint, Hallmark-style life lesson to living with dementia — like, after you finally figure it out, you learn how to live with it. How to cope.

But that’s a lie. This disease is evil and unrelenting. It has no cure. It offers no hope.

It robs its victims of everything that made them who they were.

Still, at my father’s facility, the professionals do what they can to remind residents. The hallway entrance to each room is

marked by a “memory box” full of mementos from the resident’s past.

My father’s includes a note of appreciation from the Legal Aid society, a certificate commemorating his service as president of the Durham Arts Council and a collection of pennies given to him by members of his swim team one year.

The hall is full of boxes of memories for those who are losing theirs.

Even if the residents don’t need the boxes, visitors and staff do.

It’s worth knowing that the septuagenarian crawling around on his hands and knees, searching for tiny pieces of trash that may or may not actually

exist, was once a university professor. Or a business owner.

That the woman weeping in front of a movie she’s not even watching was once a loving mother and devoted spouse.

There was so much more to these people than what’s apparent now.

If there’s any silver lining, it’s that my father seems blissfully, ignorantly happy. His version of frontotemporal dementia isn’t like the Alzheimer’s you see on TV. He can remember things from his past and recognize us. He has been stripped of his personality, his initiative and his impulse control. He is a like a child.

My mother is a giving soul who spent her life serving others, even running a volunteer center for many years. But this has tried her patience. It has exhausted her, maddened her and saddened her.

My father is lucky to have her. We all are.

And my brother and I are lucky to have a sister and brother-in-law with the means and generosity to open their own home to my parents before Dad needed 24-hour care. It was an act of love and selflessness. It humbles me.

We’re also lucky my parents have the resources to afford quality care. Not everyone is as fortunate.

So this Christmas, I will give thanks for the blessings we have … and for the father I used to have.

His eyes are largely vacant now. But somewhere behind that empty gaze is still the man who once crawled out onto a frozen pond, crashing through the ice to rescue my yellow lab.

The man who drilled into my head that pinkies always enter the water first during backstroke. The man who stressed the values of hard work, never making excuses and respecting others.

The man who made me the man I am today.