Well Happy Wednesday! Today, I’m pausing the Mothership journey for a moment to look back at where we’ve been. I’m doing this for the benefit of anyone who jumped aboard partway along, and also for those who have been here from the start. It’s been a lot of info, and links to resources, so this guide will help you find anything you missed or want to revisit.
Looking ahead, there are two lists I’m building that will be ongoing works in progress. Those are a Helpful Resources list and the hypothetical list of FUDO’s (F* Ups and Do Overs). The aggregated lists will be a paid subscriber benefit, but each list will be curated from info in the free posts.
So, that’s my chatter for this week. Here’s a recap of where we’ve been so far, with direct links to each post.
1. Introducing Losing the Mothership: lightish talk about heavyish things
You’ve got questions, I have (a few) answers. Like: Why I started this; what is a Substack?; what to expect; and the 2020 NYT article that started it all.
LINKS
Losing My Mother to Alzheimer's and Finding Her Again in the New York Times
If you’re not an NYT subscriber, click here for a free, reprinted version
2. What is the Mothership? Person, place, thing or a combo of all—and different for everyone
This post is about the multiple meanings of the term Mothership, and the bottom line:
The Mothership is that place where the alien in all of us can return and feel like a local. Whoever, whatever or wherever the Mothership is to you, losing it is a BFD.
3. Community Matters: The case for leaning in, when you feel like stepping out.
We talked about the value of a support network, which is sometimes tough to connect with during the Alzheimer’s journey, because it feels very isolating and stigmatized.
LINKS
Upper Valley Walk to End Alzheimer's
4. The Best Medicine: Alzheimer’s is no laughing matter, except when it is.
Humor, an unexpected but very welcome guest at every step of the Alzheimer’s journey. Everyone can use it, and some people are even pros at it.
LINKS
Wrangling the Drift show, by Cindy Pierce
Article on Laughter on Call and using humor in caregiving for dementia
5. D-Day: A Devastating Diagnosis with Unexpected Upsides
This one is about the surprisingly difficult and inefficient process of getting a diagnosis, especially considering how prevalent the disease is. It covers the difference between Alzheimer’s and dementia, our path to diagnosis, how early diagnosis can now help, and the upside of knowing bad news.
LINKS:
Some stats on diagnosis and legislation to improve dementia preparedness
Progress on earlier diagnosis and access to it
Wiser than Me podcast with Anne Lamott
6: A Fighting Chance: Modifiable risk factors can help even up the odds against Alzheimer's.
Until recently, people felt a complete lack of agency around Alzheimer’s. That started to change in 2017 when studies started showing that up to 40 percent of Alzheimer’s and other dementias may be prevented or delayed by addressing modifiable risk factors at various stages of life. We talk about the studies and the factors.
LINKS:
FINGERS Study
WW (Worldwide) FINGERS
US POINTERS Study
From Scientific American A Seismic Shift in Alzheimer's
Ten Healthy Habits for Your Brain
In Harvard Health, Sleep Well to Reduce Your Risk of Dementia and Death
7. Great Intentions and Bad Timing: starring our most entertaining failed experiment.
When I recount the many things we got wrong on our Alzheimer’s journey, I’d have to include the rickshaw. It was also, however, our most entertaining mistake by far. It also led me, eventually, to volunteer for a very cool organization with chapters around the globe that grants anyone with mobility challenges the right to get wind in their hair.
LINKS
Friends of Northern Rail Trail
8. Sh*t, meet fan When things go from bad to a whole lot worse in an instant.
The build-up to an Alzheimer’s journey is gradual, and often pretty tame. If you choose to, you can ignore what is to come. Inevitably, however, an injury or event or gap in care tips you over some point of no return, and downhill fast. This was how it went down for us, when our Dad, mom’s primary caregiver, died suddenly.
9. Help (not) Wanted Finding help early is important, and not as easy as it seems.
Near the top of our formidable, hypothetical list of do-overs (just under initiating conversations with our parents about end of life wishes) would have been getting help for my parents earlier. Why is the seemingly simple task of bringing in outside help, when clearly needed, so hard? Let me count the ways...
LINKS
Compassion and Choices tool kit that walks you through end of life planning and choices.
10. At Home or in a Home: An agonizing choice when reality comes knocking.
If you ever need to feel the full weight of public opinion, consider putting your parent in “a facility.” Distant friends and family are suddenly in your grill, liberal with judgment or comments or silent vibes that show they disapprove. It hurts even more when you agree with them. This is about the race to find care, and navigating opposing viewpoints on it.
11: Today, We Party: Is Alzheimer’s cause to celebrate? Heck ya!
“We need to have a party for your mom.” The suggestion came from a former ski racing teammate, one of the many “kids” now grown and with kids of their own, who had been taken in by Nina in our ski racing days. Nina’s solution to just about anything had always been to have a gathering, and God knows Buck always appreciated a gathering of ski racers. Thus, the “Nina Appreciation Party” was born.
LINKS
Love and a side of buffalo chicken meatballs
12: Finding Home The move to Assisted Living, Memory Care or wherever you’re going.
After a party break, we’re going in to the nitty gritty of finding a facility. It may not inspire joy and laughter but it’s part of the journey for many, many people. We explore the options and some of the pros and cons to consider.
LINKS
Holland’s Dementiavillage.
A similar model, Town Square adult daycare in Chula Vista
Bonus: an excellent poem on dementia by a substacker
13. The Upside of an Unwanted Move: Entertaining without the dishes, cats without the fur-balls, friends without pasts.
Despite the reluctance we all felt at moving mom permanently away from her own home, the transition had some benefits. Among them: Establishing a routine and a sense of security; becoming part of a community; and being able to entertain in “her living room” without any of the work and clean-up. Nina gets “Artie” the fake cat, which keeps her company and freaks out the assistants.
LINKS
13: On Purpose: The big thing that gets lost when the caregiver needs care.
Back to the theoretical List of FUDO’s (F* Ups and Do Overs): Stealing Mom’s sense of purpose, by paring away her responsibilities without replacing them with anything else. We did this steadily over time, and entirely out of love and the best intentions. We thought we were telling her, “We’ll do the cooking, the cleaning up, the shoveling, the laundry, the shopping, the deciding of everything, so you can focus on taking care of yourself.” Instead, the message she heard was, “You’re not needed.”
14. The Power of Play: Competition, companionships and a few lessons from Pickle Ball
Old people like to play. Young people like to play. And everyone likes to win, perhaps moreso the oldies. We know this is true. Yet, as seniors move into more restricted environments, creating or preserving a sense of play slips far down the priority list. For obvious reasons, there need to be more guardrails in senior living scenarios. Risks need to be minimized and hazards removed. Too often, however, that leads to a dull beige existence, where boredom and inactivity reign. With play, this can change on a dime.
LINKS
TEDx talk on bringing the Power of Play to the elderly
The benefits of playing board games
Reach Out and Play Initiative AARP
15. At Least You Can Write About It: An observation and a strong case for capturing your story, whatever it is.
This piece is based on what Nina once said to me long before she was sick. I was complaining about a particularly bad day. She listened patiently, as she always did and said, “At least you can write about it.” She was saying I had a talent, an outlet, and an audience. She was saying that most people just have to suck up their thoughts and wonder if they’re alone in them. It made me wonder why she didn’t write about her story, then later I realized she was writing her story in her own way.
PAID SUBSCRIBER POSTS
Additionally, the following posts went out to paid subscribers:
Your Backstage Pass to the Mothership: details on the evolving paid subscriber benefits.
Matcha Matcha Man on the benefits of Green tea for brain health, and an intro to Brain Health Kitchen
Giddyup Monday This week’s baby steps to better health—a roundup of nuggets from interesting articles and podcasts on brain health.
Blackberry Crisp for Your Brain: A pretty darned healthy take on a summer classic.
Thanks for reading! And, I hope it does help to imagine remembering your mom as your mom. Once she passed it was like all those memories were unlocked. It was a very unexpected and happy surprise.
I love this recap and the NYT piece makes me feel hopeful! Thanks, Edie!