by Lindsay Gade Boone

My dad is the kindest, gentlest man I know. He is truly the epitome of selfless love – always the first in line to help those in need, the guy who cares deeply for his employees, neighbors, and friends. He is also the one I have always turned to for advice, because of his consistency, logic, and kindness. In addition, Dad is multi-talented – he is a phenomenal dentist, incredible piano player, meticulous gardener, and an avid fly fisherman.

As a loyal family man who always put his kids and grandkids first, he was the kind of grandpa that everyone wishes for – fun, silly, happy, and never lacking in enthusiasm while playing games or building with Legos for hours at a time. Thankfully, my kids have years of wonderful memories stored up from their time spent playing with him before his diagnosis.

My dad’s bvFTD journey has been heart wrenching, and his decline has been fast. A year ago, people excused his changing behavior, shrugging it off as a byproduct of aging or a possible struggle with depression. Today, he is unable to manage money, grocery shop, apply logic, or respond appropriately in social situations.

One night, as I was talking to my son, he said, “It’s just so hard to see Grandpa like this. I miss him so much and it’s so hard to see him every day and just be reminded over and over that he’s gone.” We sat and cried together, and then I told him this. “You know how much Grandpa loves you. You have so many awesome memories with him – fishing, backpacking, and building with Legos. Let’s write down as many memories as we can think of so they don’t fade. And then let’s do everything we can to give back to Grandpa for all the love he has shown us throughout our lives. He may not respond in the same way he used to, but that’s okay. This is our season to give back and to show him our love through action. So, let’s love Grandpa with everything we’ve got.” He agreed and we got to work.

We moved my dad nearby so that I could help him daily. With the speed of his decline, he won’t be able to continue living alone for very long, but my goal is for him to maintain his independence while he can. He isn’t aware that he has changed, but he does seem to notice when people treat him differently. So, we are trying to help him feel independent, respected, and above all, loved.

One way that I keep him involved is by frequently asking him to come help with my kids. They have adapted and adjusted their expectations and will spend hours letting Grandpa “babysit” them while they play together. As this disease progresses, my dad’s interests have become more childlike. He enjoys jigsaw puzzles and fidget toys; and though his coordination is diminishing, he still loves physical games like air hockey and ping pong. These days, I keep a jigsaw puzzle out at all times, knowing that my dad will sit and work on it for hours, blissfully unaware of his surroundings.

When asked, my dad will tell people that he moved closer to us so that he could spend time with his grandkids, because they are the best thing in his life. His newfound enjoyment of puzzles and his enduring love for his grandkids inspired me to give him a special Christmas gift this year – a personalized jigsaw puzzle made from a picture of him alongside all of his grandkids. I am so excited for the hours we’ll spend together, piecing together a picture of him and the people he loves most.

Because he is unaware of how FTD has changed him, I’ve had to find ways to keep my dad safe, monitor his finances, and manage his household without alerting him. I installed a video doorbell and a wi-fi deadbolt at his house so that I can help monitor his comings and goings. I can access his credit cards and email, and every night before I go to bed, I log in and cancel any unnecessary purchases. I stock his fridge with food, throw away spoiled items, and pay his bills. As long as he doesn’t see those things happening, he gets to feel like everything is normal. My dad taught me by example the value of loving people fiercely, and, in a way, I feel like serving him in this way is honoring who he is in his heart.

Although my dad can no longer communicate like he used to, when he hugs me I can still feel his love. Often, caring for him feels like a full-time job, but I wouldn’t trade this time for anything. Knowing that I can make my dad’s life easier and more comfortable makes it worth all the effort. I cherish that.

As I told my son months ago, this is my season to give back, and I’m going to love my dad with everything I’ve got.