Finding hope by sharing the challenges
How delving into dementia helped release my fears
<Welcome to Sandwich Season, adventures in middle age, sandwiched between aging parents and growing children ... and other duties as assigned.>
Hello friends—
Sometimes life offers experiences that feel to me like discovering “gnomes in the woods."
For example, I grew up in a community that was heavily Norwegian and Swedish. Many friends and neighbors had names that ended in -son, -sen, -berg, -gren, -lund or -dahl. I was surrounded by the arts of rosemaling and hardanger, décor that included trolls and dala horses, foods like lutefisk, krumkake, fruit soup and Swedish meatballs. And the people. So many of my little friends were blue-eyed, white-haired blondies.
My family is not Scandinavian. We’re English-Scottish-German. So as a brown-haired kid whose name was often misheard as “COOM-berg” and sometimes spelled with a K, a U and a G, I sometimes felt a bit left out.
After moving back to my hometown in my late twenties, I met a man named Jon. He didn’t look like a Jon to me, so it took a while for his name to stick in my mind. He had a memorable trait though: He was of Finnish background. I didn’t know any Finns, so for the first couple of months we were acquainted, I referred to him as “the Finn.”
The more I got to know him, though, the more I realized I had been living among Finns all along. That girl in my elementary school class with the unusual last name. That band director with a similar last name. Those people I interviewed for a newspaper story. My college roommate even!
By meeting Jon, the Finn, I ended up noticing many others. Like gnomes in the woods … you don’t see them until you do. You notice one, and then more and more, until you realize the forest—or your hometown—is full of them.
This is a long way to say that I am finding dementia to be another one of those gnomes-in-the-woods experiences. A couple of weeks ago I shared a magazine article I wrote—“Glad You’re Here”—for the North Dakota State University Foundation about students (and faculty, donors and a retirement community) making a difference for people living with dementia.
Last week, I was invited to speak at a release party for the magazine about why that story mattered to me and to share some of my writing process. If you are new here, this story matters to me because my mom, who passed in August 2023, had dementia.
As I met others who had worked on the magazine and people attending the event, I heard story after story of family members and friends with dementia and the heartbreak that goes with that.
But I also heard stories of the healing that comes from writing or creating art or spending time with those loved ones and with others who have been on similar journeys.
I experience that every week when I share stories on Sandwich Season and connect with you. Thank you for being here!
What I am learning is that it is easy to feel very much alone on the rough roads of our lives. In crisis, we have to work so hard to just hold things together that we often aren’t even able to notice others on the same or similar path.
And when dealing with something like dementia, for which there is no cure, it’s easy to descend into hopelessness—and fears for the future—like, will I be next?
In the process of writing that story for NDSU, I had the opportunity to hear the perspectives and findings of people who research dementia and who work with people struggling with dementia.
Despite the hard topic, I heard so many messages of encouragement and empowerment … that I have felt myself releasing many of my worries.
Not all of those messages fit into the magazine article, so I’m sharing a few of them below. Please keep reading for a few tips on healthy ageing and for engaging with people struggling with memory issues …
On prevention
“Engaging in healthy lifestyle behaviors, such as having a good, nutrient-rich diet, engaging in physical activity, sleep, social engagement—all of those are very important.
“Our present self can help prepare us during the aging process.”
—Ryan McGrath, assistant professor of health, nutrition and exercise sciences at NDSU; director of Healthy Aging North Dakota; faculty member in University of North Dakota’s department of geriatrics.
I especially love Ryan’s last comment, because it turns my focus from being a potential victim of dementia to taking the reins and resisting it. I recognize that we have opportunities every day to live in ways that will help our future selves stay healthy as long as possible.
Here’s another bit of encouragement:
“At any age, we can make lifestyle changes.”
—Sherri Stastny, professor of health, nutrition and exercise sciences at NDSU; licensed registered dietitian; board-certified specialist in sports dietetics; and former director of food and nutrition services in several health care systems.
It’s so easy to wish we had made different choices years ago. But what I hear Sherri saying is that if we wake up to the importance of these things later in life—like today—we can start right where we’re at and still make a difference.
Food can be a tough topic, because we all have our patterns and preferences. But here’s another message from Sherri that I am finding helpful:
“As we get older, we just can’t eat as much, so our choices become even more critical—more fruits and vegetables, more protein, less processed carbohydrate.”
One day at a time … one day at a time …
On engaging with people with memory issues
Of course there are books full of advice about how to work with people experiencing memory challenges. But the truth is, most people aren’t going to read them.
When my mom was on her dementia journey, I found the information almost too overwhelming. But I could take in bite-sized pieces of advice and suggestions.
As I was interviewing people for the NDSU story, I asked them for tips. Here are a few from the staff at Fargo’s Touchmark at Harwood Groves:
“Be in the moment. Try to let go of how things were done … It’s OK to lower our standards in areas, and meet the person where they’re at.”
—Josh Deutsch, life enrichment director
“When you take out expectations of how an interaction should be or how it might go, you get to just enjoy the moments. If family members and friends find ways to exist in those moments with their loved one, they will see how truly magical it can be.”
—Anne-Marie Fitz, executive director
“Find your community. Don’t wait for a crisis to get the help you need.”
—Stephanie Doppler, clinical care manager
Stephanie shared some specific actions to take:
Get support, like respite care, and seek out organizations like Memory Café.
Get education, such as through the Alzheimer’s Association.
I shared links to some of these resources and others in my June 20, 2024, post, “’You are not alone’: Finding company on the dementia journey.”
Speaking of gnomes in the woods …
Do you ever feel as if you’re the only one crying?
Here’s proof that you’re not. I’m among 13 Substack writers focusing this month on the very human topic of crying. Who does it, why we do it, why we avoid it and why we should normalize it. (My piece published Sept. 5.)
Here are the stories, to date … with more on the way. There are lots of gnomes in this particular forest:
The Carer Mentor Collaboration
The Caring About Crying Anthology, led by
at Carer MentorSept 1 Launch article: Caring About Crying. We All Cry. You’re Not Alone By Victoria at Carer Mentor: Empathy and Inspiration
Sept 2 Crying: 'Did you know?' Resource: Tears the science and some art. By Victoria at Carer Mentor: Empathy and Inspiration
Sept 3 'Cry, Baby. Why Our Tears Matter' A Podcast Interview. Dan Harris and Dr Bianca Harris of Ten Percent Happier with Reverend Benjamin Perry. By Victoria at Carer Mentor: Empathy and Inspiration
Sept 4 ‘In Conversation with Rev. Benjamin Perry’. Victoria interviews the Author of 'Cry Baby: Why Our Tears Matter' By Victoria at Carer Mentor: Empathy and Inspiration
Sept 5 ‘My stoic mom's parting gift. Making peace with tears’ By Sarah Coomber at Sandwich Season
Sept 6 We Invite You to 'Care About Crying'. By Victoria on behalf of the team.
Sept 6 ‘ICU Special Edition: There's Crying in Baseball?’ By Nurse Kristin at HCT: Heal Cure Treat
Sept 7 Triggered. Caring About Crying Anthology By Kristina Adams Waldorf, MD at After He Said Cancer and Anne at The Future Widow
Sept 8 'Can't Cry. Want to Cry??' A Caregiver's Paradox of Human-ing. By Victoria at Carer Mentor: Empathy and Inspiration
Sept 9 AWC Town Bulletin - On Crying A Discussion Thread Tiffany Chu bakhtawar
Sept 10 The Healing Power of Tears. How giving myself the permission to cry a good cry helped me process unspeakable pain and lifted me out of deep depression. By Louisa Wah at Lily Pond
Sept 11 My Tears are not a Grief Gauge. Crying through Ages and Stages By Anna De La Cruz at Gen Xandwich.
Thanks, Sarah - I always think a caregiver can spot another caregiver in a crowded room, or within a few minutes of conversation. Caregiving and especially dementia touches many more people than we think.
Thanks for sharing the insights of others.
There are so many great thoughts, insights and reflections being revealed as part of the collaboration!
This made me think of those magical gnomes in Frozen 2!
Ha, the "gnomes of crying" -- it brings a cute and heartstring-pulling picture to mind!
I hope someday to make it to Scandinavia. Although I feel as if I grew up in some form of it here in Minnesota!
I'd love to hear your nutrition thoughts! The impact of our eating habits has long been one of my passions. My deepest dives have had to do with nutrition and its impact on children's behavior ... specifically my son's. We made some big shifts when he was 11, and it was life-changing!