Patrick and Caitlin

"ALS is a family disease" was one of the first things said to us after Patrick's diagnosis. This could not be more true. It impacts everyone and those of us who live with a PALS (patient with ALS) spend every day working to make the best for our loved one and ourselves. For our family, the challenges are ever changing and everyone manages to the best of their abilities.

Girl Scout Halloween Party

We knew the news would be difficult for our daughters and especially difficult for the younger daughter that still lived at home. The impact of daily living with a PALS can be challenging and somewhat frustrating. The tasks that the person use to do, they can no longer do and they have needs on a regular basis that take priority. Not to mention you are watching someone you love slowly lose their mobility and require more technology for daily living.

I don't know what it's like to watch your father decline with ALS, so I can't speak for either Caitlin or Corrinne, but it must be incredibly painful. Caitlin and Corrinne have different relationships with their dad, partially because Caitlin still lives at home and partially because they are different people. This blog is about Caitlin and Patrick because to write about the two daughters together in one blog just doesn't work - their relationships are quite different, so I'll save Corrinne for a later post.

Patrick and Caitlin have an interesting relationship, over the past couple years it has changed, and evolved. Prior to the ALS diagnosis they had a good relationship, but I wouldn't say they were close. Patrick worked quite a lot of hours throughout the week and Caitlin had her activities. I think it was a pretty typical "teenage daughter-father" relationship. He was proud of her accomplishments and supportive of her activities but finding time was challenging.

Patrick and Caitlin on the Sundial Bridge

I don't know what it would be like to hear at 17 that my dad had a terminal disease, but that's when Caitlin got the news. It's pretty heavy news to deal with at such a young age. One of our first conversations after Patrick's diagnosis was what we wanted for Caitlin. She was in her senior year of high school and planning on attending Sierra College in the fall. We both agreed that whatever came that it was important for Caitlin's life to remain as "normal" as possible. Now 3 years later, I don't know that her life is "normal" - I do know that her living at home is a blessing for both Patrick and I.

This is not the first health problems Caitlin has faced. She was diagnosed with epilepsy at 16, after having her first seizure on a plane leaving Baltimore, Maryland. Just for the record, they will put the plane down if someone has a seizure. It ranks as one of the scariest moments of my life. For a person with epilepsy they don't remember the seizure, but I remember it as if it were yesterday. Epilepsy, like ALS, is a journey and they don't really know what causes it, fortunately in Caitlin's case, it is controlled by medication and she's been seizure free for over three years.

At 20, Caitlin's life experiences are quite a bit different than mine at the same age. As a parent, I wish things were different, but we don't get to chose what is presented to us, only how we manage it. It's just a lot to ask of someone so young.

Dorks

I suspect they might disagree with this statement, but in my opinion Patrick and Caitlin have similar personalities (Corrinne is probably more like me). They are both smart, driven to "figuring out how things work," troubleshooters, and a little opinionated. If you've been in my house, you know that my home is quite "automated." The television is attached to a computer and all the computers are networked together. You can change the thermostat in our home through the Internet and we have an extensive movie library that can be accessed through the television. This is not my area of expertise. Patrick has always kept the technology running and my job was to complain when things simply didn't work - I took my job seriously.

As you would suspect I don't make a very good "fixer," - working on technology is a bit boring and frustrating for me. There is nothing I hate more than a "trip to Fry's" to buy computer stuff. So Patrick and I being a "partnership" for the household technology never really works out. Someone gets cranky and its usually me.

So over the past two years, Caitlin has developed a respect for Patrick's extensive technical knowledge and Patrick has come to collaborate with her on hard drive replacements, pairing devices and troubleshooting problems. I have to say it didn't start off pleasantly and the bond was originally forged because of a joint complaint about the television. However, this has been one of the those unexpected wonders because they now do "projects" together to fix different issues in the house. Some of these projects will take hours to accomplish and for me its pretty wonderful to watch the two of them having serious technical discussions.

I don't know if we've succeeded in Caitlin's life remaining normal, but I don't think Caitlin will ever look back and think it was a waste of time to spend these moments with her dad. If I'm honest I wish I would have had more of these moments with mine - most of us don't get a wake up call saying that we need to spend time with a loved one before its too late.

So, a small silver lining in the ALS journey is that we are given time, time to get to know our dad or develop new relationships or reconcile past ills. I know that Caitlin will go away to college, she's currently looking at various schools. But right now she and her dad get to work together to solve the household technology issues, collaborate on "interesting" new technology options and appreciate each other's time. And I get to watch with wonder as the relationship changes and grows.

If you still are fortunate to have your dad, give him a hug, share a laugh or fix the Internet streaming issue on your television :-) - the time is worth it!

As always, I hope all is well with you and yours! Oh and to all those dads out there - Happy Father's Day!