Finding joy while dealing with a parent who has Alzheimer’s

It’s been a year since my dad’s longtime doctor called, letting me know she was concerned about his cognitive decline and recommending next steps. Among the immediate priorities would be a diagnosis with a neurologist.

The tests confirmed what the doctor suspected: early onset Alzheimer’s.

The journey has taken several twists and turns as his decline has been steady yet shocking. A year ago, he would have difficulty coming up with words at times but make it through a conversation. Now chats are a series of unrelated mixed thoughts and stories that are combinations of actual memories and things that never occurred.

As his power of attorney and health-care proxy, I’ve been traveling to my hometown of Rochester, N.Y., with regular frequency to take care of things there.

Alzheimer’s really is a shitty disease. Often the patient realizes his or her memory is failing but is unable to control it. Doctors are powerless to stop it. Family members are stuck trying to understand and accept.

Supporting mental health

In my recent interview with Travis Macy, we talked about his family’s similar struggle with his dad’s Alzheimer’s diagnosis. Travis and his father, Mark, have a different relationship than my dad and I do. They are both endurance athletes and have a close bond. Over the years, my dad has chosen to remove himself to a large degree from family.

Not all trail runners come to the sport are seeking an escape. Yet there are countless stories of trail and ultra runners overcoming addictions, checkered pasts and demons of various stripes.

I have been able to shed the negative feelings I’ve harbored thanks to a combination of time, maturity and running.

Not everyone is so fortunate. That’s why I heartily support Bigger Than The Trail, a nonprofit group that raises money for those who need counseling. I’m raising funds for Team BTTT and would be honored if you would help push me over the goal of $1,000 raised for this year. (I supported BTTT during an earlier FKT this year.)

Lessons learned

I have used running to de-stress from the regular stresses of life as well as to get fit and see how I would fare at different challenges. Now, running has helped me cope and escape — albeit briefly — from all that Alzheimer’s has thrown at our family.

During my Rochester visits, I have explored new trails and road routes. One of my favorites is a series of trails that literally backs up to the home where we first lived.

There are relentless hills, or at least they appear that way since I am used to the flatlands where I live in Indiana. A typical long run near where I grew up would get me around 1,800 feet of gain, while the same mileage where I now live would be around one-third of that.

More important than the physical training is the mental side. I lose myself in the trails, setting aside the reason I am in upstate New York once again. I’ve been traveling here once a month to take care of things, nine hours by car one way. While I have to be cautious with COVID, it’s fortunate that I am able to work remotely and can balance my work responsibilities, family obligations and training.

Just as there is no end in sight for COVID, there is no telling how long my father will be waging his battle with Alzheimer’s. The disease is not linear and there are no templates to follow.

There were lessons my dad taught me as a boy. Some of which I’ve thought about in the past year or so.

Perhaps his experience with this disease will be the most valuable lesson. While I cannot stop it from affecting me, I can focus now on putting life in my years, smiling every mile (as my coach says) and finding joy on the trails.