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!


Why I Should Be in Jail and Other Things I Learned From the Tragedy at the Zoo


When I heard about the little boy who had fallen into the gorilla enclosure in Cincinnati, I was fascinated just like everyone else.  Maybe it’s because I recall the hazards of raising two quick, mischievous preschoolers of my own just a few years ago.  Maybe it’s because we love animals or because we live so close to an amazing zoo that we spent many carefree hours there almost weekly when my boys were small.  Maybe it’s because we were at the zoo one day when a silverback rushed to the front of the enclosure and slammed his hand into the glass with such force that we all jumped in surprise.   Or maybe it’s because we just can’t wrap our heads around how these majestic creatures that seem so warm and gentle lounging in their artificial habitats have both the intelligence and the physical strength to break us in half.

Would meeting the friendly faces on the other side of the glass be more like a dream, or more like a nightmare?

After watching a few news stories and hearing the eyewitness accounts, I felt comfortable that I had the gist of the story figured out.  A mom was at the zoo with her child.  The mom looked away from her child for a brief moment, as parents sometimes do.  The child broke the rules, as children sometimes do.  The mom and I and all of America were horrified to discover that the child had fallen into the gorilla enclosure.  The gorilla acted like a gorilla, creating a dangerous situation for the child.  The zookeepers, unable to read the gorilla’s mind and having little time and a child’s life on the line, made a heartbreaking decision that will probably haunt them forever.  The child survived.  The loss of the gorilla was terribly tragic.  Everyone learned a lesson.  Life, as always, will move forward.

BUT THEN I started reading all of the commentaries.  I read one and then another and then another.  Each time that I finished reading one, a new one would pop up, and soon I realized just how naïve I had been to think that this incident was an isolated tragic accident, the devastating result of the perfect storm on what could have been an ordinary day at the zoo.  This incident was not about one little boy, one flawed enclosure, and one tragic loss.  There are so many lessons we can all learn.

  1. Zoos are a death trap.  Seriously.  Yes, I have been to the zoo probably 275 times in the past ten years.  My kids have gone to camp at the zoo and attended preschool right beside it.  No, we were never injured, nor do I know anyone who has accidentally or even purposely entered an animal enclosure without permission.  Yes, this child was the first and only child in 38 years to sneak into the gorilla pen at this particular zoo.  But these places are DANGEROUS, with a capital D, and a capital A-N-G-E-R-O-U-S, too.  Sure, they are marketed as safe places where kids are educated and entertained, but N to the O.  I now regret everything my children learned there and all of the wonderful memories that we made.   Totally not worth the risk.
  2. Children must be watched EVERY. SINGLE. SECOND.  Sure, we already knew that we need to watch our children carefully, but that’s not what we’re talking about here.  We are talking about the NEW standards.  Whooooaaaa, Mama!  Right there!  Did you just blink?  The new rules say that there is no time for blinking if you are responsible for a child.  There is no time to answer your phone, even if the school is calling to say that your other child just barfed on the playground.  There is no time to dig through your purse to find your keys or an old, open pack of fruit snacks to calm said child who is throwing a fit.  And don’t even think about going to the restroom unless your child can fit into the stall and stare into your eyes while you pee.  A good parent never looks away.  NEVER.  But don’t be a helicopter parent.  That is bad, too.
  3. The only way that you can accomplish #2 is if you only bring one child to any public place.  This means that zoos should have a one-child-per-adult policy.  Sure, this means most families will rarely get to visit, but safety is the goal.  This also means no more school field trips, but as a frequent field trip volunteer, I give this new rule two thumbs up.  And this means no more zoo camps, unless the camp has a 1:1 ratio of kids and teachers, which means that camp will now cost $750 a day.  Safety at all costs, right?  If it is important to you, you can save up.
  4. These higher costs will be more affordable and the new rules will be more tolerable if we just institute a law that families are allowed to have only one child each, unless, of course, the family can afford to hire multiple babysitters, in which case two kids might be okay.  This law will make it easier for parents to keep their eyes on a child at all times so that even when they are still unable to prevent a tragedy from happening they will at least have the opportunity to watch the event as it unfolds.
  5. Zoos definitely need to have barriers that are more difficult for children to penetrate, and it is essential that EVERYONE insists upon this because a zoo would never think to make changes after an accident like this unless every single person on the Internet pointed out that this should happen.  Also, zookeepers do not love people and they do not love animals.  It takes a special kind of person to be a zookeeper, someone who has no feelings.  I had no idea.
  6. In this case, the child was tempted to visit with the animals after watching them in the enclosure, so it would be best if the children who are visiting the zoo don’t actually see the animals in order to prevent such a temptation.  The most logical update would be for zoos to build a very tall brick wall in each exhibit that would be located between the animals and the zoo visitors.
  7. If someone commits a crime in our country, that person is innocent until proven guilty.  However, if a parent does something that probably is NOT a crime but that infuriates the public, then that person is most definitely guilty until proven innocent.  That makes perfect sense.  If you don’t really think about it.
  8. It is VERY important for every single person who did not actually witness a situation involving a family to judge the mother’s actions, even when the people who actually did witness the incident agree that the mother did nothing wrong.  If we don’t comment, the mother probably will never learn anything at all from the situation.  As we all know, a mother isn’t likely to torture herself enough by replaying a terrible incident involving her children over and over and over again in her mind for the rest of her life.
  9. Any mother who does look away from her child for any reason ever should definitely go to trial with a jury of her peers.  And since other mothers might be biased, the jury should primarily include people who have never raised, taught, or babysat young children before.  To be fair, there should be at least one mother on the jury, but she should be well known for starting sentences with “My child would never . . .”  The death penalty should always be considered an option, even if it is determined that no crime was committed.
  10. I should definitely be in jail.  For all the times that I called the Poison Control Center.  For the time that my preschooler was (accidentally) locked out of the house while I took a shower.  For the time that my toddler superglued his fingers together.  But lucky for me, those stories did not go viral.

As you can see, we all learned some important lessons from what was a truly heartbreaking and tragic situation that happened recently at one of our Ohio zoos.  If you will excuse me, I need to check on my children, who are playing soccer in the backyard without any supervision.  It looks like I will be seeing you in court, or at least in the court of public opinion.