Floris, who was care partner for her husband, arranged an event she thought might be special for him. He “walked with Alzheimer’s” and had always been a baseball fan. He had a specific team he loved, and although it was challenging, she wanted to take him to a game when his team played in town.
He seemed to enjoy the experience, although his enthusiasm wasn’t quite what she’d been hoping for. After the game ended, she asked him how he liked it. “It was okay, but next time, let’s go to a Red Sox game.”
They were at a Red Sox game.
Floris, a wise care partner, replied, “Alright, that’s a good idea. Next time we’ll go to a Red Sox game.”
Quality of life is tricky. It’s fluid, changing from day to day and sometimes minute to minute. An event which can take a lot of work and planning can totally bomb. Then, without any planning at all, a special moment will surprise you and bring tears to your eyes. Here are a few principles to remember.
- It’s always worth the effort
- Adjust your expectations
- Never give up
When we got married two years ago, I wanted my friend there. Many years ago, before she 
started her struggle with dementia, she had encouraged me to try online dating. It wasn’t common then, especially among people my age. She gave me her wise opinion about many guys as we’d sit in her driveway after a road trip, discussing options. She is special to me, had been there through my journey, and I wanted her there to celebrate with us.
But I knew it would depend on the day. Her family had totally committed to bringing her if possible. I assured them I understood. But I prayed.
As I walked through the field which was my “aisle,” I saw the back of her head and it brought tears to my eyes. She doesn’t remember that she had a wonderful time and talked with everyone there. But I do.
George was in the final stages of the disease. His once tall, strong body was curled in on itself in his special wheelchair. His head seldom looked up, and he didn’t speak. His wife attended all the events with him, though, because you never knew. At Christmas, she brought him into the lounge when Santa was passing out presents. She spoke to him as she always did. “George, Santa Claus is here.” He lifted his head almost imperceptibly and thrust out his gnarled hand to shake. It was a moment.
Recently, Shasta Nelson, wife and caregiver to Greg Nelson, posted on Facebook. Greg is an author and teacher who was diagnosed with Alzheimer’s in February. They have just returned from a trip to Japan. Her quote inspired me.
Because here’s the truth. None of us knows how much time we have. And the greatest gift we can give ourselves is to live the life we want now. Not someday. Not when it’s easier. Not when it’s convenient. But now. I feel that to my core….Book the trip. Plan the adventure. Sit at the table with the people you love. Do the thing you’ve been putting off. Life is fragile. Time is precious. And the time to live it fully is always, always, now. ❤️. Shasta Nelson, blog post, Sept. 27/25
Amen.