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!

 

What My Father Taught Me By Fighting For His Life

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When my dad was born, the doctor told my grandmother that he was going to die. He had a rare congenital birth defect affecting his lower abdomen, and there was little chance that it could be surgically corrected. My grandma was advised to enjoy the brief time that she would have with her blonde-haired bundle of joy. The doctor didn’t even file a birth certificate. There was no hope. And that was that.

That may sound cold and heartless, but the doctor’s prognosis was probably reasonable for a baby born with such a rare and serious condition to a blue-collar family living along a remote gravel road in The Middle of Nowhere, Ohio, in 1950. But the doctor didn’t know that my grandma, who was already raising my dad’s four siblings and who had kept the home fires burning while my grandfather served abroad in World War 2, did not take “no” for an answer. Ever. Her tenacity in caring for that baby and her unwavering faith in God are now preserved in family legends. She refused to surrender without a fight, ultimately seeking treatment at the best children’s hospital in the state despite having little means to do so, and the fact that I exist to write this is evidence that her persistence paid off.

But this essay isn’t about my grandmother. It’s about the baby, my dad, who was immersed in a battle long before he knew what fighting for your life actually meant. First, he survived infancy, which was an impressive feat in itself.   Then, after many childhood surgeries, excruciating recoveries, and months of hospitalizations far from home, he was still thriving at the age of thirteen – another milestone that doctors did not believe he would reach. (This earned him a bit of spoiling from his older siblings, one of whom actually bought him a pony. No joke.)

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As soon as he was old enough, he began working full-time, insisting on exerting his independence and keeping up with – or surpassing – his peers. A few years later he was married, something he probably never imagined given his gloomy prognosis as a child. He and my mother were reminded that he would never father children, but the young couple figured there was no harm in trying, and, voila, the family grew by one girl and one boy.

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Even after beating so many odds, my dad didn’t waste time contemplating old age. Why would he? He had already challenged fate so many times that expecting to qualify for the senior discount at McDonalds seemed a bit presumptuous, even to him. But last year he retired from a long and respected career as a butcher, and today his biggest smiles can be attributed to his four grandsons. I bet his younger self never, ever saw that coming.

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My dad doesn’t talk much about his medical history, and he probably won’t appreciate that I am writing about it either. In fact, most of what I know has been collected in bits and pieces from my grandma, my mom, and my aunts and uncles, and only because I won’t stop asking. Maybe the stories churn up too many painful memories. Or maybe, like an old sweater, the memories have lost their shape and just don’t fit right anymore. Regardless, I know that my dad’s experiences shaped him, and, in turn, shaped me. Here’s just a sampling of the wisdom he has shared by being the man who would never give up.

  1. Your challenges may shape you, but they don’t have to define you. Every experience has the power to shape you, to mold your spirit into something just a little different than it was before, and my dad’s childhood included some pretty traumatic experiences that certainly impacted the man he became. However, my dad’s life has never been about suffering or limitations. Over the years, he had every right to complain and to seek sympathy and to worry and to find shortcuts, but he chose not to do those things, even when he probably should have. He taught me to accept what life throws at you, grow from those experiences, and move forward. Progress doesn’t result from sitting still.
  2. Take a lesson from man’s best friends. My dad loves animals, particularly dogs and horses. Both dogs and horses are known to be extremely loyal companions, and it is no surprise that loyalty is a quality that my dad holds in high regard. There were many times when my brother and I questioned his loyalty to people who did not reciprocate, but my dad’s values did not change depending upon who was the recipient of his kindness. I like to imagine that his independence and strong sense of right and wrong sprouted from the challenges that he faced as a kid. Whether they did or they didn’t, his example taught us to be respectful and loyal to our friends, neighbors, family, and employers, no matter what. Your own integrity is what matters; if others abuse your devotion, move forward knowing that you can rest comfortably at night while they tiptoe around the minefield that is their conscience.
  3. You have no idea what someone else has experienced just by looking at him. My dad’s high school graduation photos reveal that he was quite a handsome catch back in the day. Today, his hair is just a little (okay, a lot) thinner, he’s added glasses to his ensemble, and he could easily blend into any grandparent scene. Unless you are a doctor who happens to examine his x-rays, you would have no idea that what is on the inside of him is not the same as what is on the inside of you. And if you ARE a doctor who happens to examine his x-rays, you will most likely make a bee line to his hospital room to ask him lots and lots of questions. It’s okay. He’s used to that.

    The point is that when we see people and we think that they look okay, then we assume that they feel okay, too. And when people who look okay say that they don’t feel well, especially if the problem is chronic, we, as a culture, tend to dismiss them as whiners. If they were really THAT sick, then surely we would be able to SEE that. Maybe this is why my dad never complained, even when it was warranted, or why he dragged himself to work at times when anyone else would have stayed home. He made a habit of reminding us to be compassionate and to recognize that people face invisible battles every day. When people say they are in pain, believe them, and realize that it is probably worse than they are even sharing – because they are afraid that you will think that it is all in their head.

  4. There are no “issues.” There are people. Politics is a common topic of conversation in our family, and that is mainly because my dad is an avid reader and watcher of political news. His politics are not based on alliance with a particular political party or a family tradition or a single point of interest. He is interested in how leaders make decisions and how they talk about people – because every political “issue” that is discussed as a big, abstract idea is really about people at the end of the day. When government assistance has helped to save your life, you understand the human side of political decisions. When you have lived in fear of losing your health insurance and bankrupting your family, you are keenly aware that “issues” are “people,” and your children understand that, too.
  5. Don’t let anyone put you into a box. Build your own box. My dad, at a very young age, refused to climb into the box that his doctors designed for him. In his case, that box, literally, would have been buried six feet under far too soon. Instead, in a figurative way, he decided to build his own box. And when he outgrew that one, he built himself another. And then another. And then another. He made a habit of defying expectations, and he encouraged us to defy them, too. If you have to chop off a limb to fit into the box someone else has built for you, it’s time to build yourself a new box, with room to grow.
  6. Walk a mile in someone else’s shoes. If that doesn’t make you nicer, try running a marathon in them. “Walking a mile in someone else’s shoes” sounds nice and has certainly become a common refrain in character education. My dad reiterated that we all benefit when we are more empathetic toward others and when we recognize that any one of us could unexpectedly face the greatest obstacle of our lives at any time. But a mile isn’t a very long walk, really. People who live with chronic illness live with it for the long haul. Make sure that your empathy is the kind that lasts. Try not to be the friend who jumps in to fill the immediate need but forgets that the struggle doesn’t end – ever.
  7. When you are struggling, help someone else. My dad never had a high profile job that paid a lot of money, but he was always able to provide for us and would have worked five jobs if it had been necessary to make ends meet. But no matter how much or how little we had at any given time during my childhood, he was willing to share it with someone in need. A neighbor needed help in the middle of the night? He would be there. A friend’s car broke down on the side of the road? Give him ten minutes. His co-worker needed to borrow money for gas? He had only a few dollars left until payday, but here you go. I don’t recall my dad asking for anything, but I vividly remember him giving. A lot. Even when he didn’t have much to give. Even when he could hardly stand up. Even when the person didn’t deserve it. He has helped a lot of people, but he taught us this secret truth: Helping others is a great way to help yourself.
  8. There are lots of ways to be smart. When I was younger, I was a bit of an academic snob. My parents encouraged us to excel in school, and I enjoy learning about almost anything. (Except chemistry. I really hated chemistry.) I applied my dad’s work ethic to my studies and graduated from high school as valedictorian. Grades mattered to me, and academic knowledge seemed like a good way to compare people at the time, and I thought I was smart.

    I don’t actually know much about my dad’s school years other than that his attendance wasn’t always the best. When you are in the hospital, it is hard to go to school. I imagine that his grades suffered. He did not go to college, but he learned a trade and garnered great respect for his skill. I remember a time when he was laid off from his job, and before he could even look for a new position, he received phone calls from employers who wanted his help. He was not valedictorian, but he is a smart guy. It turns out that there are lots of ways to be smart.
    Now, I teach students who are considered at-risk for a variety of reasons; their grades aren’t always the best, but many of them are exceptionally smart in ways that are not measured at school. It turns out that life is full of educational experiences, and while I was smart on paper when I graduated, I wasn’t nearly as smart as I thought I was. Academics are important, but true wisdom is never assessed on a report card. My dad taught me this because, well, he’s really smart.

  9. Work hard. Really hard. I have already mentioned that my dad is a hard worker, but this is such a central part of who he is that it demands its own spot on the list. My dad has always given more than 100%. Always. In fact, this part of his character is so intense that it is both a blessing and a curse. He missed some things because of his work ethic, and that was disappointing at times. However, I am extremely grateful that my dad taught us the pleasure of a job well done – no matter how hard the job is or how little the material reward. I am baffled by indifference and indolence. My dad taught me better.
  10. If someone says that you can’t, just smile. But in your head say, “Just watch me.” My dad is not confrontational, but he is competitive. If he wants to figure something out, he will figure it out. If he wants to get something done, he will get it done. If he thinks that you don’t think he can do something, he will do it. He won’t argue with you. He won’t fight about it. But come back and visit in a week or two and whatever you said couldn’t be done will be finished. He just wasn’t going to tell you about it. He didn’t need to. The satisfaction was in proving that he could do it – to himself.

This is just a sampling of the lessons that I learned from my dad, a man who has always refused to give in or give up. On this Father’s Day, I am so grateful for his unfailing perseverance; it is, after all, the reason I am even here. I am also grateful that his grandchildren are still learning from him today, so many years after he was given a death sentence while swaddled in my grandmother’s arms. Thanks, Dad, for fighting the good fight and beating the odds. I will always root for the underdog because of you; those unexpected victories are so much more rewarding.

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