Monday Author: Susanne Skinner
We’ve been planning this trip for months. My sister and I are heading to Myrtle Beach South Carolina for Columbus Day weekend; a bi-annual gathering of high-school friends that has been a cherished tradition for over 30 years. She has been only once, and it was 20 years ago.
I usually go with my husband, but this year I am traveling with my sister. She has Down Syndrome and Alzheimer’s and this is our Sister’s Big Adventure.
Traveling with My Sister: Roles and Responsibilities
For the past ten years I have been her legal guardian and care giver. As she ages and the Alzheimer’s progresses there are challenges we must deal with: increased self-focus, repetitive speech, forgetfulness, disorientation and loss of balance, cutting food into small bites, and of course The Daily Routine.
Routine drives her day-to-day activities. Eating, showering, television and what she wears are dictated by what day and time it is. The Alzheimer’s had led to increased Obsessive Compulsive Behavior (OCD), and for her this is a benefit. It helps her stay organized and plan what is coming next. A day with no surprises is a good day.
Traveling requires flexibility. We have to get up early, and meals will not be at the scheduled time. I am apprehensive but hoping for the best. She is just plain excited.
The truth is, we are both out of our comfort zones. She lives in the sameness of each day. In my world schedules exist to be changed. Skipped or late meals are the norm. I am used to running for planes, waiting in airports, eating food on the run, and getting up and going to bed in other time zones.
On this trip we are sisters and buddies; figuring it out as we go along and learning from each other.
False Starts and Bad Omens
I drive her to my house, where she spends the night. We are up at 5:30 with the goal of catching the 7:00 am airport shuttle. We have a 9:30 flight to Charlotte, where we will change planes.
Boston traffic is never good, but on this morning, it is living up to its bad reputation. We get on the highway and come to a complete stop. After 30 minutes it’s clear we will miss the bus and my stress level begins to rise.
We make it in time for the next bus, only to have the driver sit in the same traffic we just left. He reluctantly agrees we are going to miss our flight. My sister looks at me and says, “Don’t worry Sis, we’ll make it.”
We arrive as the flight is boarding, only to find it has been delayed because they are short on crew. By the time we take off we have 15 minutes between flights. Again, she reassures me and says, “We’ll make it.”
We do, but now she’s had no lunch and needs to go to the bathroom. She assures me its OK, she can wait. My stress level is off the charts. We are hustling to another terminal with both of us pulling a suitcase when I hear her say, “This is fun!” She never loses her belief that we are getting on that plane and I suddenly realize she is taking care of me.
Embraced by Family
Each time I make this trip she says, “Someday I’m going to my reunion” and I respond with the words “Someday you will.”
This is our someday. We arrive in Myrtle Beach to find she is the guest of honor. This amazing group of friends welcomes her with open arms, celebrating her uniqueness and pulling her into the love we have shared since we were teenagers. There is no better place I could bring her—she is home.
This is not a superficial welcome that will dissipate as more friends arrive and the party gets started. We are Family. They fold her into small group conversations, sit with her at the pool, and pose for her as she takes pictures. They listen.
We are sharing a room but I want to give her as much independence as she can handle. I let her choose her meals, bedtimes and what she wants to do each day. She is not short on options. One friend takes her shopping, a classmate racks up a game of pool to play with her, and there is a huge media room where she can watch TV when she needs some space. Most of all, people talk with her. She gets to share her stories and watch them react with enthusiasm and appreciation for who she is.
Last year she earned a black belt in karate, an effort that took 16 years of dedication; it’s a source of pride and accomplishment for her. She brags about it, sharing photos and a few moves. Though they’ve heard it many times they react as if they are hearing it for the first time. She loves it.
An Incredible Journey
Each day I ask if she’s having fun. Her face lights up and she says, “Oh yes!” Perhaps we should have done this sooner, but they say timing is everything, and for us this is the perfect time.
We walk on the beach, share pizza at the local Italian restaurant and take lots of pictures. We talk about her accomplishments and dreams. We even find a store with cheesy souvenir tee shirts and buy two of them.
My brother is also at the reunion. Her excitement when she sees him is beautiful to watch and today I have a special surprise for her—our younger sister is coming. They have not seen each other in a long time and it is the perfect ending to our Sisters Adventure.
I began this journey believing it was a gift I could give my sister, and end up realizing the enormity of the gift she has given me.