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!

 

21 thoughts on “What It Feels Like to be the Son of a Father With Dementia

  1. And this IS what it feels like to be the Mother of the son who has a Father with Dementia. I feel sad for my children and grandchildren who are loosing part of their Father and Grandfather everyday. We have to be there for him and enjoy the time he has left knowing all of us. Thanks, Ryan, for your beautiful letter. Love you, Mom

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  2. Very touching Ryan. I know how much you care about your dad. It is heartbreaking to see our loved ones go through this.

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  3. Beautiful post of a love for your dad! With tissues in hand & I defiantly had to use them, this had to have been so difficult to write but it was wonderfully done. Thank you!

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  4. I am blessed to have watched you grow into the fine young man you are and know the part your dad played. Having been through the disease with my mother and mother-in-law I understand the frustration and pain! I really appreciate the sand and water anology! Be glad God made them and thankful you have a father who gave you good memories, not everyone is so blessed. Know that there are people who continually have you and your family in their thoughts and prayers. Thanks for sharing your heart. Love you all!

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  5. Love you, too! Caregivers need to take care of themselves, as well. You have a very difficult job, and you are doing it with grace. We love you!

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  6. I’m glad that it moved you, Mindy! I think he did a great job of summing up the feelings he has experienced with this situation. 😦

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  7. I know this mom who had a heart attack and nearly scared her children to death recently… It is hard to watch our parents have health challenges of any kind. We love you!

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  8. So true, Kate! Whether we have to watch our parents’ health decline slowly or whether we lose a loved one suddenly, it’s all HARD. Thanks, again, for kicking off this series of guest posts.

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  9. Thanks for reading this post, Lloyd! If anyone understands how Ryan feels, it is you. I thought the sand and water analogy was really moving and appropriate, too.

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  10. I am not sure I can say anything else that my brother has not already said and definitely not as well written.

    I will go to the beach in a couple of weeks and watch my son Brooks, who loves his Pappy Ware, playing in the sand and think about Daytona Beach and playing with our Dad in the sand. I am sure I will shed a tear as I sit there and think of your analogy with the sand Ryan, as that was very well said.

    There are so many memories, especially from when we were little that I will cherish the most which is why every minute I have to spend playing with my son Brooks…I pay with Brooks. Every night he says one more book…I read him one more book and I rock him to sleep, many nights falling to sleep myself holding him (which is one of the best moments of life). Every night I get home from work late, hungry and tired and hear those little feet running towards the door and here him yell Dada’s home…I skip dinner and play with Brooks.

    Life is short…and when a terrible disease like this comes along it makes life as we have known it even shorter, and quite honestly, it doesn’t seem fair. It is not fair that Pappy Ware’s only granddaughter may never really know him as we all have known him. It’s not fair, as my brother put it so well, that we can’t call Dad when we have questions about how to fix something. But that is where we are.

    So now I try to find opportunities for Dad to come and visit his grandkids because dad still loves to play….Dad loves to build things with leggos with Brooks….they may not be as well built as our club house was which I believe could have withstood a Tornado because Dad built it. Dad loves to play cars, tractors and trains with Brooks, and Brooks loves to play with his Pappy. That is where we are, and I just pray that Brielle will get to play with here Pappy as well and get to know the man I call Dad.

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  11. Thanks Jason. Pappy does still love all his grandkids. He may not remember their names all the time but when he sees them he knows they are his KIDS.

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  12. Sadly, I read Ryan’s blog about Keith. I haven’t seen Keith and Carol since they stopped to visit us in 2013. Yes, I have been back to Marietta since, but only a down and back trip to help Matt with something or other. I really need to take time to go visit my old friends whom I love dearly. The best ever neighbors in the best ever neighborhood!!!! Hopefully, he will remember me, but if not I will understand as Mike’s mom slipped off into dementia, too.

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  13. This was really touching, Jason. I know how hard this is for Ryan, and I know it is equally difficult for you and Traci, as well. You are right. Life is too short. We can’t take time for granted.

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