August 19, 2018

What Piglet and His Best Friend Pooh Knew About The Care In Caregiving

abby_admin ALS, Caregiver, Caregiving, Disney, Uncategorized ALS, caregiving, Disney, Pooh 2 Comments

Disney’s Christopher Robin made a big impression on me, and I can’t stop thinking about it. I think I’ll have to see it again! (and probably again after that, and many times once the DVD becomes available!)

I’ve been reminiscing about Pooh and Piglet played a big part in how Ben won my heart. When Ben and I first started dating, we often walked to the flagship Disney Store on Fifth Avenue in Manhattan. It is no longer at that location. We wandered the 3 floors and I often left with little gifts- the courting phase of a relationship is fun, indeed!

Having spent increasing amounts of time with me, Ben was becoming fully immersed in the Disney mindset, and loving it, sometimes to his own amazement.  One day, as we strolled through the store, Ben called me over to look at a figurine, exclaiming, “Abby, look! It’s Piglet and his best friend, Pooh!” I stared at him, speechless, and then started to laugh. He shook his head, laughed, and said, “I was macho before I met you!” Truth be told, he was not so macho. He was a big teddy bear, and his great hugs could calm me down and completely surround me with love. He was a big kid at heart who indulged my inner child, and that was us.  He bought me that figurine as a surprise, and it will always be so special to me.

When I saw Piglet and Pooh together in the film, I couldn’t help but picture Ben smiling. They have a such a beautiful, sweet friendship. Here’s one little conversation between them that touched my heart.

“I don’t feel very much like Pooh today,” said Pooh.

“There there,” said Piglet. “I’ll bring you tea and honey until you do.”

That’s caregiving. It’s that simple and that complicated. Ben didn’t feel like himself as ALS took away his abilities. There were times that he was understandably frustrated and sad. All I could do was be there, trying to bring him comfort.

Sometimes it’s a matter of being present, sometimes it’s being a good listener, sometimes it’s ensuring that routines- including medications- are followed. Mostly, it’s about caring to figure out exactly what will soothe the caree at the moment. For Pooh, honey was always a good solution. It’s not always that easy. But communicating the desire to be there, to help and support, can only strengthen a bond. Although we could lose patience with each other, and sometimes we both needed our moments to feel down, Ben knew that I would always at least try to find the thing that would be his tea and honey.  And, I knew that he would find a way to show me he loved me.

In another conversation:

“What day is it?” asked Pooh

“It’s today,” squeaked Piglet.

“My favorite day,” said Pooh.

It’s hard to imagine that any day with ALS can be a favorite day. There were definitely the big time highlights, like when Ben woke up on January 1, 2015, and he said that he had such a fun New Year’s Eve. I had ordered matching Mickey Mouse and Friends pajamas for us and even for my cat, Disney. Ben always loved the fireworks at Walt Disney World, and I found a toy that supposedly simulated fireworks, with sound effects and LED light “fireworks” that were activated by a remote control. We played the soundtrack to the “Wishes” Magic Kingdom fireworks show and Ben chose the sequence for our fireworks show while we had our photos scroll on his computer. It was pretty hilarious to pretend we were at the Magic Kingdom as we watched these pretty unconvincing fireworks splash on the wall. It felt almost magical to laugh and enjoy the evening. That silly celebration was a most favorite day and is now part of my treasure trove of beautiful memories of moments sprinkled with pixie dust.

Any days spent at Walt Disney World were favorite days when Ben felt free as he rode around in his scooter or electric wheelchair. The Disney magic allowed him to enjoy most of the attractions and to temporarily abandon his worries.

Once he was homebound, Ben’s days did not vary much. But, every day that he was okay and things went smoothly, when we handled or averted a crisis, solved a problem, and enjoyed each other’s company, was a favorite day. We recognized, acknowledged and treasured those.

Winnie the Pooh commented, “There’s always time for a smackeral of wonder.” I think that’s true. And, it’s so important. Ben never lost his curiosity, sense of humor and ability to be inspired, particularly by music. When we were able to go to Walt Disney World, his inner child shone, and he marveled at everything he saw and all the music he heard. When he was home, he watched movies and documentaries and listened to music, always questioning, always learning, always with a sense of wonder and delight. I think that helped him to navigate ALS. Always finding time for a “smackeral of wonder” is good advice for all of us.

I believe that Ben would be especially happy that these lessons came from Piglet and his best friend, Pooh.