Four years ago, my father Jim was diagnosed with a form of progressive aphasia. This impairs his ability to speak, so the initial diagnosis scared the shiitake out of my extrovert butt. To complicate the diagnosis even more, we also discovered he has a form of Dementia. So his short-term memory has become very poor.
When we were given the diagnosis, my Dad was 53 years old. He was a healthy, physically fit, young-looking man who always took care of my mom, my three older sisters and me. I just couldn’t wrap my mind around it. How in the world could my Dad have Dementia? After asking our neurologist about 3,000 questions (“Will he forget me tomorrow?” “How can we fix it?” “How can I keep him here as long as possible?” “What about that new study?” “And that other study?” “And coconut oil and vitamin B12??!”), I slowly came to the conclusion that my Dad’s condition is beyond my control. And the Doctor’s. And his. This disease would progress whether we were ready for it or not. This was the first lesson I’ve learned along the way:
1. You cannot control every situation and its outcome, but you can choose how you deal with it.
It’s easy to become consumed with the emotionally painful pieces of my Dad’s situation (“Someone I love is slipping further away each day.” “He and my Mom are way too young for this to happen.” And on, and on). But that outlook doesn’t make him better. And it certainly doesn’t make me feel better. I find hanging out with my parents, trying new activities with each of them, and just being present, a much more meaningful way to live. It makes all of our days a little brighter. Obviously I still have my moments of hysteria, but then I find a way to reset and embrace the fact that time is limited and pretty unpredictable. This outlook is something my entire family has adopted, and I think it’s made us all better people.
Each of us have made it a priority to support my Dad—to keep him as happy and as healthy as possible. I truly believe he is the inspiration to our sunny outlook.
Which brings me straight to the second lesson:
2. “Be kind, be honest, be loving, be true, and all of these things will come back to you.”
Growing up, my Dad taught me to be kind to everyone, to be generous, to have respect for my Mom and older sisters, and to be honest no matter what. In the last four years, his strong character has been reciprocated by so many of his friends and family members. Because he would do anything for anyone, there are so many people willing to do the same for him. It is beautiful to watch. I’ve always known and admired these qualities in my Dad, but I’m pleased to see how deeply his own traits and values were instilled in my sisters and me. It’s prepared us to take on this battle for him.
At first I kept thinking, “I am so blessed to have had a Dad like him raise me all these years. Now it’s time for me to take care of him.” This is true to some degree, but I had no clue how much he would continue to teach me every single day.
That brings me to a few more lessons:
3. Actions speak louder than words.
I’m the woman who could talk ears off a stranger in the grocery-store line, so the whole language thing was a HUGE adjustment for me. With my Dad’s inability to speak and process language, I have to find other ways to communicate. I’ve learned to observe and pick up on his body language. Whether he’s happy, at ease, irritated, or sad, I can usually understand him without any explanation. Interestingly, he can pick up on my body language just the same! I have learned to hug, kiss, smile and dance more than ever before, because this is how I can express my love to my Dad best. I find in all of my relationships, a smile or warm pat on the shoulder does more than any advice or simple “I love you.” We can talk ‘till the cows come home, but showing someone how you feel is the ultimate communicator.
4. As I’ve been encouraged to be more animated, I’ve learned to lighten up and stop taking myself so seriously. If you asked my 16-year-old self to bike down a main road in town with Dad right behind me, I would have been horrified. Maybe I’d agree if no one from school would see me! But in an effort to connect with my father and keep him healthy, I sucked it up and pedaled on out there… In the broad daylight… On the main streets of Medway! These bike rides were--and continue to be--just as therapeutic and special to me as they are for him. They were only the beginning to our hilarious adventures together. The more I got outside and stopped caring what people might think, the happier I became. My Dad certainly isn’t wondering what everyone thinks, so why should I?
Now, the fifth, final, and most important lesson so far:
5. Be authentic.
My father isn’t capable of holding back anymore, and it’s pretty refreshing! When he’s happy, he’s joyful. And when he’s pissed off, you definitely know it! He doesn’t hold a grudge, because each day is a fresh start. When he wants to dance, he gets up and grooves. And I’m right there with him, because it’s infectious and makes us both happy. The more you watch someone be themselves, the more you want to let go and live it up! I have found life to be less stressful when I’m true to myself. I try really hard to practice this in all angles of my daily routine. Most people recognize when you’re genuine. And they respect you more for it, too! I believe I have improved my connections with colleagues, patients and friends when I am human and myself.
There will be a time when my Dad cannot dance in the kitchen with me anymore. And eventually he may not know who I am. When that day comes, I believe my Dad will have prepared me for the moment, just as he always does. We will both know deep in our souls that he loves me with every piece of his heart, and I love him.
Some of my favorite people have taught me that sharing your story can be therapeutic and help others around you. This time of the year can be stressful, hectic, and sometimes overrated. It felt like the right opportunity to share my story and these lessons from my Dad. I hope someone finds them as inspiring as I do!