Milestones of Dementia

Video Version Here

 

I truly enjoy being in the woods by myself. One day last week, I hiked eight miles in our nearest state park. I encountered only one party, a family of three, just as I was reaching the end of my walk. It really was amazing that I was on these trails for four hours and did not see another human.

 

Many people have asked me if I feel safe hiking alone. I do. I know there are some dangers—an injury, poisonous plants and animals, becoming lost, and sudden illness for example. And I have encountered all of these, but not to the point that I was harmed, or even badly scared. And, of course, I usually tell my family where I am and let them know when I start and finish the hike.

 

The moments when I feel the most fear are when I don’t know where I am. Now that I use the app, All Trails, though, the fear is never long-lived. With the app, I can see exactly where I am and can get myself back on track easily. There is even a feature to download the trail map beforehand in case I am in an area without cell service. I wrote about getting lost while hiking a year ago here.

 

There was no way that I could get lost last week, however. This state park marks all of their trails with numbered posts every quarter mile. Had I gotten lost, been out past sundown, or injured myself, I could have called the ranger and given them my exact location. For example, “I’m on the white trail, and I just passed marker 37 going west.” It’s great peace of mind. Their downloadable map shows the markers as well, so I can plan a hike knowing how long the trail is.

 

The ancient Romans invented milestones, numbered stone pillars along a roadside placed at one mile intervals. Our modern-day mile-markers on interstate highways are direct descendants of this practice. The markers on my trail are borne out of this same principle, but tailored to the specific needs of hikers.

 

And now, we use the term “milestone” to denote an important accomplishment or even an ordinary event: developmental milestones, graduations, first car, first job, retirement. The list is endless.

 

I wished for a roadmap with milestones when Harvey was living with Alzheimer’s disease. One marker for “mild disease,” “moderate disease,” and “severe disease.” Or “should not be left alone,” or “needs around the clock care now.”  Or “should no longer be responsible for paying the bills,” or “can no longer drive,” or “doesn’t recognize you as his wife.” These would have been helpful milestones to see coming, to know that he would reach a certain milestone at a certain time.

 

I can draw that map now, looking backwards in time, but there was no map in the midst of Harvey’s dementia. I had to navigate by instinct and with love. Friends sometimes guided me back to the better path if I strayed off course. But like most caregivers, I did a lot of floundering, trying different techniques, not knowing if he was at a new milestone of loss or just having a bad day.

 

One of the exercises in my memoir asks the reader to create a timeline, a map of sorts, with milestones marked along the way. It’s a practice in seeing the whole picture at once,  stepping out of the moment to gain perspective. From that vantage, one can see the milestones more clearly, and grieve or honor them for what they are.

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