Our friends Elizabeth and Charlie Miller are a constant source of inspiration. Here is one of the many ways they embrace life.
Elizabeth and Charlie knew they had to instantly work on their travel bucket list. When they met and fell in love, Charlie had been living with dementia for four years. He had not traveled much, but he wanted to see the world with Elizabeth. He asked a friend to help him plan a romantic trip to San Francisco, where he proposed to her.
After she said, “Yes,” they combined their love of beaches and nature and began adventuring, going on driving trips, taking cruises, and sharing a multitude of experiences. When flying grew too complicated and stressful for Charlie, they focused on local day trips or short driving trips.
“I used to have to travel alone,” Elizabeth says. “Now, I travel with Charlie. He enjoys the trip in-the-moment. How wonderful to have all these shared experiences. Plus, it’s renewing to be outside of our routine.”
Elizabeth stopped to think. “Hawaii,” she said.
“Hawaii,” Charlie said, his eyes bright. “Wasn’t that the best cruise ever?”
Elizabeth smiled and felt a deep sense of happiness and connection. “You are right. It was the best cruise ever.”
To make every trip “the best” here are a few flying travel tips from Elizabeth:
- Try for a non-stop flight at a time best for the person living with dementia.
- Call TSA in advance and arrange for assistance in getting through screening.
- Ask for a Pre-boarding pass to minimize the stress in boarding.
- Get a business-type card that says, “Thank you for your patience with my companion. He is living with dementia.” Share this information, as needed.
- Carry a travel packet that includes a letter from an MD, stating that your companion has dementia, and a medical power of attorney. Include doctors’ names and contact information as well as emergency contact information.
- Carry a bag of essentials: water, snacks, medications, a change of clothing, and activities.
- Be flexible, in the flow, and have fun!
“To love a person is to learn the song that is in their heart,
And to sing it to them when they have forgotten.”
~ Arne Garborg
At our recent Alzheimer’s performance at the Isidro Ayora Hospital in Loja, Ecuador, we shared stories and ideas and learned how these health care professionals were dealing with clients who had dementia.
One nurse described her close relationship with an elderly client. “I feel like I’m a partner with the family in caring for her,” she said.
“I’m interested in integrating more kinds of therapies, such as music and art therapies, into our care,” a doctor commented.
“I’m looking for ways to reduce the stress of being a caregiver,” another member of the team said.
We had a lively and meaningful conversation and we were impressed by their dedication and caring.
If you have tips for reducing the stress of being a caregiver, we welcome your comments and we’ll share them with our friends in Ecuador and elsewhere.
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Several years ago, Ron and I went to Italy. Every night, I sat up late, taking notes in my travel journal.
Five nights into our trip, Ron asked, “What are you writing? Are you describing the churches we saw today, are you waxing lyrical about the vineyards and fields?”
“No, I’m making a vocabulary list.”
You see, before we left on our trip, we took 12 Italian lessons. I was keeping a list of words I had spoken or understood. I wanted to find out how much each word cost and if our Italian lessons had been worth it. In five days I had only used 50 words—each word from my lips costs more than a bottle of mineral water and less than a glass of wine. I realized I had to be increasingly outgoing if I wanted to make the most of my Italian.
People’s faces lit up when I tried speaking their language, even when I asked something simple, like, “Where is the bathroom?” One dark evening when we were hopelessly lost, we stopped at the only establishment that was open on the narrow winding road: a bar. I walked in and asked, “Where am I?” in Italian. That one awkward, existential sentence resulted in a kind couple offering to drive ahead of us and lead us to our hotel.
Just like my first words of a new language offered me rich connections, my mother’s last words were deeply meaningful. I wrote about this in my story, Words, to the Wise.
Mom is in bed when I visit one afternoon, her eyes open, her hands twisting the blanket, like a kid who’s had enough of her nap. She smiles when I walk in.
“Hi, Mom, how are you?” I certainly expect no direct response from Mom, but the greeting makes me feel normal.
“How are,” she says and I feel a little thrill at this social nicety.
“I’m fine, Mom. How are you?”
“I know what you mean,” she says, staring out towards the hallway.
I am excited by Mom’s pointillistic little monologue. Alzheimer’s has erased most of Mom’s considerable vocabulary and this spill of words is a treat. As I stroke her arm and smile at her, I realize I am literally listening to my mother’s last words.
In the movies, the last words are profound gems of wisdom, uttered upon a deathbed. Those words are a raft to hang on to so you don’t drown with grief. Though my mother is lying in bed, she is definitely not dying. In fact, given her vast years and advanced Alzheimer’s, she’s relatively physically healthy.
“Well we item” Mom says. “All right”
She no longer needs a listener’s approval. She no longer checks for understanding. The words spill out, like the random winnings from a nickel slot machine.
“So, but that’s,” Mom says, as I touch her leg.
Each word is an independent contractor, a one-act play. Mom’s words require interpretation, involvement, imagination and curiosity. Unlike last words in a deathbed scene, Mom’s words do not neatly sum up her life or her philosophy. Still, these words are gifts. Many visits have gone by with the barest scraps of language. I get out my pen and paper and write down every one of my mother’s last words.
As I write, I imagine she is giving me a secret code, sending me a message from the last cognitive bastion of her brain. “I don’t know. I paid. I’ll try.” What depth, what meaning, what spiritual significance these simple phrases might have!
Q 4 U
Are there times when a few words have made a big difference?