What It Feels Like to be the Son of a Father With Dementia

what it feels like

Grab a tissue, my friends.  I swear that my goal at Still Chasing Fireflies is not to toy with your emotions, but this What It Feels Like series is definitely going to bring out ALL the feels.  Last week, my husband and I were hundreds of miles apart while he was in Chicago for work and I was visiting family.  When we finally reunited, he dropped a bomb on me; he had been secretly writing this beautiful post about how it feels for him to watch his own father battle dementia.  Oh. My. Goodness.  I could hardly edit and post this on the blog through my tears. 

Love on your dads, people.  Please.  Now.  Do not wait.

Like many other young children growing up, I believed my father was one of the strongest, smartest, goofiest, hardest working men I knew. He could do, and fix, anything. But those qualities weren’t always the ones that meant something to me as a child.  I valued when he would get on the ground and wrestle with me.  I still remember the feeling of his scruffy face once in a while and how he would use that as a laughter-drawing weapon on me during the match.  

I remember how he would sit and work out floor plans for houses and buildings using my architectural building blocks on our end table in the family room.  He taught me what lintels, copings, rough openings, and many other construction terms meant, simply by playing with me and those blocks.

I recall him being excited to show me his design for our club house, walking me through the drawings and dimensions. I should note that my passion for construction and design began at a very early age, and my father played a critical part in that. Not sure he meant for that to happen, but he seemed to enjoy that I liked it.

As time moved on, he and I worked on my first car together, having the carburetor rebuilt so we could replace it, hoping it would help me get something more than 10 miles per gallon.  (It’s a good thing gas was .95 cents per gallon then; I didn’t want to spend all my paper route money on gas because I needed some for actual dates!)  I probably wasn’t the best mechanic, and I am sure I complained about holding the light for him more than doing any actual work myself.  But we got the job done.

That was also about the time my father invested in the family boat, well, Jon Boat that is, for fishing.  I had the pleasure of being one of the first passengers during the initial shove off from shore, and, well, it floated.  And that…was…about…it. Many minutes later, we finally got the motor fired and we were off.  Off to find the catch of the day. Or, in my case, to put my favorite mix tape in my Walkman and catch some rays.  You see, fishing was something my father and I didn’t have in common.  He enjoyed the outdoors, and, well, I enjoyed the cities.  

And so the distance between us grew.

It was close to the end of my senior year, just a few more weeks remaining in my basketball season, when I came home from practice to find my father in the driveway washing the family car.  For anyone else, this may have seemed perfectly normal.  But not for my father.  You see, my father worked the 4 to midnight shift most of my life.  He was either sleeping or working when I was home.  On this day, for him to be home at this time didn’t add up.  And it wasn’t good.  He had lost his job at the age of 54, just shy of age 55 – the age when he would have been able to collect his full pension.  This was the mid 90’s, before age discrimination was something to litigate. This event was crushing for the family.  With a wedding for my sister that summer and my desire to go to college, and without another full-time income in our home, life was about to get difficult.

However, that moment in time changed everything for me.  Watching my dad handle the issue with integrity and seeing him take on anything and everything to keep food on the table taught me to do the same.  But it also drove me to focus. I knew I was going to spend the rest of my life working hard and chasing my dreams, following my passions, and living the life I want.  

So after graduating from high school, I worked two jobs while attending a local community college to earn a degree and the credits necessary to transfer to a larger school.  After my first year at Kent State, I was accepted into their school of Architecture.  There was one caveat; I had to go back to Kent for Summer Studio immediately. The day I left for college was Father’s Day, 1997.  My father, who in my first 20 years rarely shed a tear in front of me, cried that day after commenting about me heading off to start the program and knowing I wasn’t going to be coming home for the summer.  I’m not completely sure if the tears were sadness or if they were happy tears because I was fulfilling my dreams, but it was a rare occasion either way.

There were many times during my college years that my father would talk to me about how he never really got to do what he wanted because he wasn’t that great in school.  He would end up working odd jobs during the semesters just to survive rather than studying.  I believe that he told me these stories to encourage me to never give up, to trek on and fight for everything I wanted to achieve.

So why am I telling you about these memories of my father and me?  Because he can’t, not anymore.  You see my father was diagnosed with dementia, and he sometimes forgets how many sons I have, or our names, or what I do for a living. He forgets where he is and why he is there, or if he has even eaten.

Watching this awful disease progress is like watching the sand on a beach fight the ocean tide. As the day passes, the memories of those footprints, sandcastles, motes, and all the fun experiences that occurred on the beach are erased.  With each new day, the experiences in the sand begin over.  There is no remembrance of what happened the day before.

My dad has memories, but they tend to be from further back in his life, not many from us as a young family. Mostly he reminisces about his days in Vietnam. And as the tide of his mind rises, and then regresses, the same stories begin again.  This happens many times during an hour.  So you sit, and listen to the same stories again, just so you can spend time with him.  Or you find yourself fielding the same questions, over and over again, trying with all your energy to stay relaxed and not show frustration at this horrible disease that is not his fault.  Often you find yourself fighting internally with the pure instinct to avoid the visits rather than see a man struggle with this relentless disease.

There are times when I am working on something at home and I am struggling or need help, and I think I should call my dad, like I use to, because I know he will know what to do.  But then I instantly realize that this isn’t a possibility anymore.  It hits you like a champion boxer just set you up for his patented left jab and right hook combo.  The man who could have done anything, who could have taught you anything, who was there to show you how, is no longer available for you in this capacity.

Sure, he is here, but not all of him.  You wish that you could call him and work on some projects in the yard or in the house together.  You wish that he enjoyed sports like you do, or that you liked fishing so that you could spend some time together doing things you both enjoy.  But most of all, you wish he could remember that he gave you some of your best qualities and made you who you are.   

This is what it is like being the son of father who has dementia.  You are not completely sure WHAT he remembers.  You are not sure IF he remembers.  You are not sure HOW MUCH he even knows about what is really happening to himself.

So I will add some gravel and Portland cement to the sand on my beach and set my memories in concrete for both of us, until one day those memories may very well erode away for me, too.  But until then, my father will always be the goofy, scruffy-faced wrestling superhero he has always been to me, preserved in my memory until the waves finally win the war.

Thanks again to my husband, Ryan Ware, for sharing this post with all of us.  It wasn’t easy to write, I am sure, but sharing our hard things can help others and maybe even heal whatever is hurting us, too.

Do you have a story to share in this series?  I think you do.  You don’t even have to write it yourself.  I can help!  Just let me know what’s on your mind.

Finally, it’s Father’s Day!  We love you, dads!  Happy Father’s Day to my own dad, Kenny, and to all the other dads out there, including my husband, my father-in-law, and my grandpa, too.   

Be sure to show your dad some love this week, and watch for the next post from Still Chasing Fireflies!

 

My Top Five Post Picks

Wow!  Choosing my top five posts of the first year was harder than I expected!  The first three choices were easy.  There was no question what those first three would be.  But the last two picks were harder.   I wrestled with questions, like how do you pick a favorite child, anyway?  What makes one post better than another?  How did I feel when I was writing each piece?  How much of me was invested in each one?  Does the number of readers who liked each post matter, and, if so, how much?

There were several close runners-up, including this post about my nephew’s cute fishing story and this one about developing “real” relationships with our friends.   And then there were posts that started conversations and made a difference to people, like “A Letter To My Son’s Soccer Coach” and “Yes, I’m a Christian.  No, I’m Not Like That.”  However, the posts that I chose as my top 5 are posts that are so close to my heart that all kinds of hidden emotions start swirling when I read them.  You can click on the infographic below to go to the “live” version.  It has links that will take you to any of the posts that you want to revisit! (Aren’t these infographics FUN?!?!?)

top-5-favorite-posts-on-still-chasing-fireflies (3)

Now it’s your turn!  I REALLY want to hear about your favorite posts on Still Chasing Fireflies in the past year.  Please comment, here or on Facebook or both.  Let’s create a conversation.  Thanks for chasing fireflies with me this year!

~Mary Ann