How to Make Meaningful Moments
by Lonna Whiting
When my mother was diagnosed with young-onset Alzheimer’s in 2013 at age 61, I thought her life was over.
In my mind, her future was a downhill tumble from diagnosis to death. She’d never get better or improve. She’d stop being able to cook on the holidays. We’d never take that trip to Ireland.
I was focused on what we were going to lose slowly over the course of several years. As a result, I spent so many years preparing myself for what to expect that I missed out on the many meaningful moments I could have made with Mom.
Although the truth that Mom would progress in her disease was a reality I couldn’t escape, I eventually discovered that even though we didn’t get to take that trip to Ireland, we did (and still do) have many amazing moments together that I will cherish forever.
I wish I could tell you when this change in my perception occurred, but I’m not sure when or how it did. It would certainly save you some of the stress, sadness and heartache that weighed me down. But what I can do is describe ways in which I now maximize meaningful moments with my mother and how you can do the same.
Share the good moments, not the clinical milestones.
If you’re like me, one of the most difficult questions people ask is, “How’s your mom doing?”
In the earlier years, I would reply to this question about my mother’s dementia based on the clinical stage of her progression. “She’s about mid-stage now because she needs help dressing and bathing,” I’d say.
Because I was so focused on the medical side of things, I wasn’t perceiving Mom as a person anymore. I was perceiving her as a patient with a terminal disease.
Over time, as I spent less of my own energy worried about when the next progression would happen and more time focused on little moments that put a smile on my mom’s face, I realized I was going about answering the question in all the wrong ways.
My advice for when people ask you how your loved one is doing is to relay a meaningful moment. Instead of, “She’s no longer walking on her own,” say something like, “We enjoyed a strawberry shake together the other day.” I’ve found that in doing so, the person who asks about my loved one is much more comfortable with my answer. I’m much happier, too.
Spend time observing your loved one and take note of what seems to bring them joy.
It would be dishonest of me to dismiss the difficult parts of dementia: the hallucinations, mood swings, behavioral changes, outbursts, etc. Until efficacious medical interventions are discovered and approved, it will continue to be a devastating reality.
In between the difficult, though, there is opportunity for joy; you just may have to look a little harder and be more observant to discover it. Your loved one is still communicating with you, just in different ways. Look for cues, such as:
- smiling
- raised eyebrows
- clapping or patting hands
- winking
- tapping feet
Accept that what they once enjoyed might not be what they enjoy now.
My mother loved classic rock, especially The Beatles, Led Zeppelin and Pink Floyd. So naturally, I was horrified the day I stopped over to her facility to find her humming and dancing along to a volunteer accordionist playing a folksy rendition of “Singing in the Rain.”
For a long time after that, I would play Led Zeppelin for her, even after it was clear the music no longer resonated. The same went for some of her food preferences. When she once would meet me out for sushi, she now preferred a ham and cheese sandwich.
The best thing I did for myself—and Mom—was to let go of my expectations that she would always be the same person, because that is just not true. Once I accepted that her likes and dislikes had evolved, it was easier for me to connect and make meaningful moments with her.
Individualize the three stages of Alzheimer’s.
Though it’s essential for care partners to know and understand the three stages of Alzheimer’s, I did a disservice to my mom by seeing her as a series of steps in a clinical progression.
One of the best things I did recently was take some of those meaningful moments and individualized the three stages of Alzheimer’s so they better reflect my mother’s journey, not just the clinical stages she’s experienced.
If I share the story of my mother’s journey in personal stages, here is what it looks like:
- STAGE ONE: Busts out of the facility with me for pizza dates. Dances with my partner, Kevin. Drinks a beer.
- STAGE TWO: Goes for drives with me. Hums along to The Beatles. Shares a mocha.
- STAGE THREE: Sits with me. Holds my hand. Listens to me repeat, “I love you.”
I encourage you to individualize your own loved one’s three stages. It brings perspective that might not have been there otherwise. It also brings great joy and comfort, knowing that even though your loved one may not “remember” a memorable moment the way you do, the important thing is that it happened and you were present as a loving, kind and caring witness.
ABOUT THE AUTHOR
Lonna Whiting is the owner of lonna.co, a growth strategy and communications consultation agency located in Fargo, ND. Whiting writes frequently about her experiences as a care partner to her mother, Beth. You can read more of her work at www.lonna.co/end-alz or reach her at lonna@lonna.co.
This article originally appeared in Alzheimer’s TODAY, Volume 16, Number 2, published by AFA. View the entire issue here.
