Do You Give Care, or Is It Stolen From You?

Also in this edition: OTC drugs that may reduce the risk of dementia; does your level of education affect dementia likelihood; the place of gratitude in caregiving; one way to talk to children about dementia; the new book is published and available on Amazon!

In this edition:

📰 Top News of the Week 📰 
🛫Need a Lift? Inspiration and Meaning in the Midst of it All🛫
•Poll of the Week: How Do You Like to Learn?
•Ben’s Corner: 🎁The Giver Should Be Thankful!—Gratitude’s Place in Caregiving🎁
•Video: Where the Ocean Meets the Shore—Talking to Children about Dementia
Support the Cause 💰️ and Shoutouts 🙏
📘 My New Book on Amazon: Creating Purposeful Engagement! 📘

Top News of the Week

There are some really interesting studies trending this week in the world of dementia news regarding ways to reduce risk and prevent cognitive decline: from a possible new role for NSAIDs (Advil, Aleve, and others) to news about how higher education may change the playing field, there’s a lot to consider. I’ve also included some articles that give some unique caregiver perspectives to ponder.

Risk Reduction

  • Long-Term NSAID Use Linked to Lower Dementia Risk (Neuroscience News): last week we had an article about how SSRIs might increase dementia risk. Let’s balance that with an article this week about how long-term NSAID use might decrease dementia risk. (Note: don’t just start this on your own. Talk to your doctor. This is a new study and needs to be researched more fully.)

  • Can green tea help prevent cognitive decline? (News Medical): green tea might be good for more than just your taste buds.

Effects of Education on Dementia

  • Does Higher Learning Combat Dementia? (Johns Hopkins Medicine): “A study published in JAMA Internal Medicine shows that dementia prevalence fell [between the years of] 2000 to 2012 in people 65 and older, and that this drop was associated with staying in school longer.”

  • Dementia hits clever people harder, study finds (The Telegraph): this is the other side of the coin compared to the article above. Sort of. However, the title is misleading clickbait. It was not a study of “clever” people: it was a study of people who have completed more years of higher education. Also, it is not so much that it hits them harder: it’s that the “cognitive reserves” they have built up fend off dementia longer so it appears that they decline more quickly. In other words, it’s complicated, but the article is better than the title.

What’s Happening in Caregiving?

🛫 Need a Lift? 🛫 

I polled last week to see whether subscribers were interested in more uplifting quotes, poems, and books, and the answer was a resounding Yes! Here are a few more texts that have kept me moving forward this week. Keep in mind that true comfort is not simple or easy: you’ll read of both hardship and triumph. (Spoiler alert: in my newsletter, triumph always gets the upper hand!)

When You’ve Only Got a Minute

  • Oh Me! Oh Life! by Walt Whitman. Famously recited by Robin Williams in the movie Dead Poets Society, this poem considers the difficulty of the various trials and tribulations of life and gives one of the most powerful and affirming answers I’ve heard. This poem is very short, and a must-read when you need a pick-me-up!

  • The Guest House by Rumi. This is a poem about deep spiritual gratitude which encompasses everything: joy and realization, but also sorrow and grief. It is not the facile gratitude of denial or a celebration of the “fake it ‘til you make it” mindset, but a meditation on the meaning of what it is to be truly grateful.

If You Have More Time

  • Self-Reliance by Ralph Waldo Emerson. Emerson was an inspiration to Whitman (above), a Transcendentalist of the same period, and a powerful advocate for non-conformity and trusting your intuition. “Self-Reliance” is an essay that speaks to these themes. Here’s the famous line you know, but you didn’t know it came from this: “A foolish consistency is the hobgoblin of little minds, adored by little statesmen and philosophers and divines.”

  • Zen Flesh, Zen Bones,1 compiled by Nyogen Senzaki and Paul Reps. This compilation of old stories about unconventional and intuitive Zen teachers is a lovely eastern companion to the Emerson’s distinctly western and Transcendentalist essay above. These tales highlight the importance of confidence in your vision, even in the face of opposition. Here’s one of my favorite stories about Ikkyu, a feisty character from Japanese history and literature—an unrepentant troublemaker to his core!

Zen Flesh, Zen Bones, Chapter 85: Time to Die

Ikkyu, the Zen master, was very clever even as a boy. His teacher had a precious teacup, a rare antique. Ikkyu happened to break this cup and was greatly perplexed. Hearing the footsteps of his teacher, he held the pieces of the cup behind him. When the master appeared, Ikkyu asked: “Why do people have to die?”

“This is natural,” explained the older man. “Everything has to die and has just so long to live.”

Ikkyu, producing the shattered cup, added: “It was time for your cup to die.”

While Transcendentalists might say that self-reliance is the solution to our problems, Zen teachers might say that when there is no self, there is no problem! One way or the other, you should get a lift, and a couple new ideas, from these titles!

Do you have a recommendation for suggested reading, watching, or listening? Send it to [email protected] and if I pick your suggestion I’ll credit you in the Dementia Newsletter that week.

Poll of the Week:

Ben’s Corner: “The Giver Should Be Thankful”—The Role of Gratitude in Caregiving

Above, I quoted one short story from Zen Flesh, Zen Bones, and now I’d like to quote another one that has had deep meaning for me as I have journeyed through my mother’s Alzheimer’s disease with her. It has helped to reframe how I think about my role so I can be both more effective and happier as a caregiver.

Zen Flesh, Zen Bones, Chapter 53: The Giver Should Be Thankful

While Seisetsu was the master of Engaku in Kamakura he required larger quarters, since those in which he was teaching were overcrowded. Umezu Seibei, a merchant of Edo, decided to donate five hundred pieces of gold called ryo toward the construction of a more commodious school. This money he brought to the teacher.

Seisetsu said: "All right. I will take it."

Umezu gave Seisetsu the sack of gold, but he was dissatisfed with the attitude of the teacher. One might live a whole year on three ryo, and the merchant had not even been thanked for five hundred.

"In that sack are five hundred ryo,” hinted Umezu.

""You told me that before," replied Seisetsu.

"Even if I am a wealthy merchant, five hundred ryo is a lot of money," said Umezu.

"Do you want me to thank you for it?" asked Seisetsu.

"You ought to," replied Umezu.

"Why should I?” inquired Seisetsu. "The giver should be thankful."

~Zen Flesh, Zen Bones~

Virtually every spiritual practice has some form of giving built into it. In Christianity, there is tithing. In Judaism, there is maaser. Islam has zakat, Hinduism has daśamāṃśa, and Buddhism has dana. Setting aside the purpose of revenue generation, the custom of giving as a spiritual practice goes back in its purest form to the idea that in order to grow as humans, we must be willing to give up our attachment to the things that keep us from embracing what truly matters. For this reason, giving is considered as much of a spiritual practice in certain traditions as prayer or meditation.

This is why, in the story, Seisetsu tells Umezu that “The giver should be thankful.” The giver is participating in a spiritual practice that helps to shake off grasping self-centeredness.

A favorite author of mine, Robert Aitken, discusses this “giving paradox” and quotes our old pal Ralph Waldo Emerson into the bargain!

The Earth itself flourishes by what Emerson calls the endless circulation of the divine charity: “The wind sows the seed, the sun evaporates the sea, the wind blows the vapor to the field…the rain feeds the plant, the plant feeds the animal.” The very stars hold themselves on course through a mutual interchange of energy.

In keeping with this natural charity, ancient customs of gift giving and circulating the gift kept primal human society healthy.

Robert Aitken, The Morning Star

That’s the theory: the practice of giving teaches us—over time—to see how fully we mutually depend on each other. As we become more aware, we better see how much we are actually receiving not in spite of, but because of, our generosity.

I think of it like the experience of buying a car thinking that you’ve found a truly unique color. Then you take it out on the road and realize that every third car that passes also seems to be that color. Once we start looking for a thing, we see it everywhere. Giving can be like that.

As caregivers, we sometimes look at how much we give, and it hurts a little. Maybe it hurts a lot. We are missing out on things. We may sustain physical injuries in giving care. It can be costly. It can be taxing on relationships. Friends drift away. Opportunities vanish. I am not saying you should seek this out on purpose, and I’m not saying that you should be happy about it. Martyrdom is overrated: just ask one.

Please, don’t mistake this article for a “Pollyanna” piece. I believe in looking at problems squarely, but I also believe that every situation has two sides. When we are down in the muck (and worse) of caregiving, we may not feel like we are giving. We may feel like our care is being taken or even stolen from us, that we have no choice. If something is being taken from us by force, then we are not “tithing.” If you feel your care is ripped away from your spirit in snatches by greedy hands, you have no agency. Giving requires agency. You must choose to do it.

So how can we start reframing? How do we go from resentment to thankfulness? Have you heard the old question and answer: “How do you eat an elephant? One bite at a time.” Let’s start with some little bites.

What are 5 things you’re grateful for right now, at this very moment. It doesn’t matter how tiny they are. In fact, tiny may be better if you’re really struggling. I’ll do it with you. As I’m sitting here typing this article, I’m grateful for:

  1. My gaming keyboard: it makes satisfying clicks when I type and the keys have pretty lights flickering under them that remind me to be a little less serious.

  2. One of my cats just poked its head around the corner of my desk. They add so much joy to my life.

  3. I’ve been trying to stop drinking soda, but we had company last night and there are a few left over cans. Despite my resolutions, I’m grateful for the cold Coke Zero next to me. Yum.

  4. The tile floor of the office is cool under my feet and feels really nice.

  5. I have a paperweight on my desk that my parents gave me when I graduated from college. It has a picture of the college embedded in the glass. I’m happy when I think about that time in my life and I’m glad for the keepsake.

See, nothing crazy there. Pretty simple stuff. However, it starts to rewire your brain, believe it or not.

Our brains are generally on the lookout for problems. You probably don’t remember the driver who politely nodded to let you go first at that 4-way stop, but 10 years from now you will still be arguing in your head with that jerk who flipped you off on the freeway.

Way back when our problems were, say, sabertoothed tigers and avoiding deadly injuries like infected hangnails, we had to be constantly vigilant. So that’s how our brains evolved, and that’s how they still work. When my partner and I talk about our work days in the evening, she and I usually discuss the colleagues who were jerks, the projects that aren’t going well, or the mind-numbing meetings we were stuck in. Does that sound familiar? This is the same reason why the news doesn’t report on things that ennoble the spirit: our brains are programmed to wallow in the muck, defensive and afraid.

The way out is through gratitude. As we practice acknowledging the positive things in our lives, no matter how small, we build up a reserve of positive emotions that push back the fearful caveman living in our heads who is constantly telling us to be afraid.

The best trick, though, the one that brings our discussion full circle back to caregiving, is when you realize that even the opportunity to give to someone else is a chance to be grateful. Seisetsu was right if we have the patience and wisdom to see it!

It’s not so hard to be grateful when you receive, right? However, it takes practice to be grateful when you give. As you practice this, you will change and grow. There is no way not to. In the moments when you feel genuine gratitude as you give care to your loved one, you are both giving and receiving at the same time, with the same action.

In that moment, giving is receiving. Who gives? Who receives? Who benefits? Who cares?It doesn’t matter anymore. “Giver” and “receiver” have no meaning: there is simply an interdependent compassion that binds us together in gratitude, a kind of spiritual alchemy that creates more than the sum of the parts.

This is why “the [care]giver should be thankful.”

Video: Where the Ocean Meets the Shore

I found this interesting video in my travels through the news this week. It’s purpose is to foster productive discussions with children about Alzheimer’s disease and dementia. It’s under 4 minutes in length, and takes the approach of story-telling to deal with difficult subjects. If you need to speak with a child about the effects of dementia on someone they love, this might be a good place to start. The makers of the video, Otsuka, also offer a free workbook to go with the video, available for download here.

If we’ve helped you, please support us too

Hi newsletter family! Each week I operate this publication “in the red” because I believe so strongly in its vital importance. That’s also why I write it the “old-fashioned” way, without using AI. I know it seems like it shouldn’t cost much to send an email, but the service for formatting and bulk sending runs me $99 a month—that’s just one of many expenses incurred.

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Shoutouts to last weeks donors!

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Thank you all!

Creating Purposeful Engagement with elumenEd

Ben Couch, owner of elumenEd and The Dementia Newsletter

Hi! I’m Ben, and I’m the author of this newsletter as well as a new book on Amazon: Creating Purposeful Engagement.

From the book’s description:

“For those of us caring for loved ones living with cognitive change and dementia, engaging them in daily life can be both difficult and rewarding. When it doesn’t work, we might see the confusion in their eyes or watch them retreat into themselves. But when we get it right, when we draw them into an activity or conversation, we have given them an invitation to participate in the world for a time. These successful moments can be orchestrated, improved, and created reliably. Getting confident with engaging your loved one is what this guide is all about.”

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I’ve been a dementia professional for over 20 years, but the fight against this disease has become much more personal for me as I am engaged in my mother’s journey with Alzheimer’s disease. I started The Dementia Newsletter as well as it’s parent company, elumenEd, to help caregivers, specifically home and family caregivers, gain access to the very best training and information available at an affordable price.

At The Dementia Newsletter, we’re dementia professionals but we’re not medical doctors or lawyers. The information provided is for general informational purposes only and should not be considered as medical or legal advice. Always consult with a qualified healthcare professional for medical diagnosis, treatment, or any health-related concerns and consult with a lawyer regarding any legal matters.

1  I’m suggesting books through the Amazon “affiliate” program. This did NOT affect the choice of any particular book. I can pick any book on Amazon as part of this program: these are my picks for The Dementia Newsletter this week! If you pick up a copy of a book through this program, buying it through the link above helps to support the newsletter. You pay the same price. Happy reading!