Dementia has not been a linear process. I was first diagnosed this year, at age 48, and I felt I was at the start of a long downhill decline. I wrongly assumed things would progress as if I were standing at the top of the big hill we used to sled down when I was a kid. I anticipated a steep, steady, heart-clutching descent into the valley of oblivion, like riding down that slippery slope in an orange plastic sled, with nowhere to grab onto to slow the inevitability of the bottom drawing closer and closer.
What I have come to realize over the past few months is that for me, dementia is more like hiking the Appalachian Trail: a long and often arduous, but sometimes beautiful, journey into both the known and unknown.
And just as one can prepare for that epic hike, one can also prepare for dementia, by reading articles and books, joining support groups, starting therapy, etc. Still, no amount of study can truly prepare someone for the difficult terrain, the unpredictable weather, the solitude, or even the occasional soul-lifting beauty that comes with either a through-hike of the trail or the progression of dementia.
Dementia, I’m realizing, is a very long, mostly solo, journey into places, thoughts, feelings, and terrain for which no amount of reading or talking to supportive folks can prepare someone.
Hiking Is More Than a Metaphor: It’s a Goal
Hiking metaphors are at the top of my mind because I have a long-standing goal. Before I reach 50, I would like to hike the trail I helped build when I was a member of the Student Conservation Association (SCA) during high school.
The summer of my sophomore year I managed to convince my parents to drive me all the way from North Dakota to McCall, Idaho, to join a group of teenagers to build a trail in the Payette National Forest. I’m not sure where I heard about the program, but it was likely from my science teacher, who knew I was always looking for interesting experiences and I loved everything nature-related.
We didn’t have money to afford the programs offered by the SCA. But my mom was from Idaho. I figured if I could make the case that it could be part of a family vacation, it might all work. I honestly don’t know how I convinced her the scheme was a good idea, but she agreed that if I could raise the money, she would let me spend the summer in Idaho, up in the mountains, building trails with a group of strangers.
I got to work and applied for the program and the program scholarship, which would waive most of the fees. I talked to my Girl Scout troop and my church and managed to convince them to help me raise a few hundred dollars so I could acquire secondhand hiking equipment. I had never been on a hike in the mountains in my life and was totally unprepared, without any sort of gear.
Our Expectations Are Sometimes Met, and Sometimes Not
The hike to our first campsite, where we would build the start of our trail, began in a long flat meadow. I distinctly remember thinking to myself that even though the pack was heavy, and I was wearing slightly ill-fitting shoes, I could absolutely make this climb up the daunting, steep mountain ahead.
And I did. It took us hours and hours just to go a few miles, but the journey was spectacular — full of new and interesting experiences. That summer was a glorious mix of hard work, new friendships, and self-discovery.
When our trail was built, and our camp had been dismantled, and we were both ready and not ready to leave, I stood at the top of the trail we built looking down thousands of feet into the valley below thinking to myself, “I’ve done all the hard work; the descent is the easy part.”
It wasn’t.
It may have seemed like hiking down this mountain trail — or descending into dementia — should have a clear and steady path. But none of it was or has been clear. None of it has been steady.
Hiking and Dementia: Both Are Solo Journeys
Next summer I’ll be 49, and I’m planning to hike the trail I built all those years ago. I’ll be with a group of friends who have volunteered to come with me, and I’ll be navigating both the uphill and downhill journey to and from my trail much like I’m navigating dementia: I’ll be buying gear, reading books and articles, and talking to people who have had similar journeys.
When I get to the trailhead, and I make the hike up, and I eventually make my way down, even surrounded by friends, supported by knowledge gained from those articles and groups, sporting brand-new equipment that I can now afford to buy for myself, it’s going to be mostly a solo journey, relying on will and determination and a healthy respect for the unknown.
I hope my descent into dementia has more joy than sorrow, more beauty than ugliness, and takes a long slow careful path to the bottom rather than a quick linear descent, allowing me time on the trail to experience as much of the journey as possible.