Monday Author: Susanne Skinner
You know there is no light at the end of the tunnel;
and it’s the only way you can go”
~ Nancy Reagan
Alzheimer’s is an insidious disease. It steals memories from our loved ones, and ultimately our loved ones from us.
My sister has Alzheimer’s; according to her doctor she is in the late stage of the illness. In layman’s terms, that’s one to two years. If she beats the odds and lives longer, the bulk of that time will be spent in the most severe stage of the illness.
She is completely unaware of her limitations and lives her life with great abandon; but I see her slowing down, tiring easily and struggling to remember things she knew six months ago.
We sit down together and talk about what she wants to do. We write down her hopes and dreams and I promise her a bucket list of joy.
The Bucket List: Seize the Moment
In his book Being Mortal, Dr. Atul Gawande says as her caregiver my only task is to enable her well-being; providing her with the pleasure of doing what she loves for as long as she can. My real job is ensuring she never becomes disconnected from who she is. By giving her a good life, I also give her a good death.
At the top of her bucket list is often repeated desire to ride a Harley-Davidson motorcycle and I think to myself, “Why not?”
My brother Greg lives in Seattle and he has a Harley. With that as our starting point a plan begins to take shape. It’s not just a motorcycle ride, it’s a road trip! He sends her a Harley jacket and we put our heads together to make this dream come true.
Getting There From Here
My sister can’t travel alone. After considering multiple options, we conclude the only way she can get to Seattle is for me to take her. I live in Florida; she lives in Maine. I will need to orchestrate a plan that gives us the shortest distance between two points and the least stressful journey for her.
I fly from Florida to Boston and work locally for a week, then rent a car for the six-hour round trip to Maine to pick up my sister. I book an airport hotel the night before our flight to avoid anxiety and delays. We take off bright and early the next day for Seattle, where my brother meets us in the airport.
My sister Nancy from North Carolina has decided to join the party, so I have a bonus lunch with everyone before I hop on my connecting flight to Vegas.
One week later I am on the return hop to Seattle, where I chill for a few days and get some quality family time before we begin the long journey home.
When we land in Boston I repeat the six-hour car ride to deliver my sister back home. The last leg of my journey is the flight from Boston to my home in Florida. I have been away for 17 days.
Awesome summer road trip: Check
Visit with her brother and sister: Check
Riding a Harley every day: Priceless
The Kindness of Strangers
My sister is an easy person to travel with. She rolls with the unexpected and where others would find frustration she finds excitement and adventure.
We traveled to Myrtle Beach last year, far from her comfort zone, and she rocked it. But nearly a year has passed and the disease has progressed. I was unsure how well we’d do given the new circumstances.
There is nothing more profound than receiving an unexpected act of kindness. On this trip we experienced the kindness of strangers everywhere we went.
As a platinum member of my hotel, I got the breakfast buffet included with our stay. My sister wanted French toast—an item not on the buffet. The waitress not only brought it to her, she waived the charge.
When we boarded the plane I realized our seats were not next to each other but behind one another. “I want to sit next to you, you’re my sister,” were the first words out of her mouth. As I was reassuring her, two people immediately stood up and offered to swap seats. She not only sat next to me, she got a window seat!
We returned to Boston on Labor Day weekend and the rental car pick-up line snaked through the waiting area. Once we were at the desk we were informed we had another 45-minute wait for our car.
Carmen, the agent taking care of us, must have seen the look on my face, and immediately apologized. I explained I was making a six-hour drive, returning the car later that evening, and really needed to get on the road. She looked at my very tired sister and promptly walked me downstairs; spoke with the manager, and in five minutes we were on our way.
Sisters Side by Side
We draw a line through the Harley Ride and high five each other. Her trip is captured in a photographic journal on her iPad. “What’s next?” I ask as we study the list. “Anything”, she replies. The motorcycle ride was her Golden Ticket, so we discuss the remaining items with an eye to planning our next adventure.
- Meet Chuck Norris
- Paddle a kayak on a lake
- See Tom Jones in concert
- Have an art show
- Karate tournament (she has a first degree black belt)
- Go to Hollywood and see famous people
I tell her we should go big. Let’s get them all crossed off.