Loving a spouse with dementia for decades comes with tremendous heartache. The treacherous path that must be tread requires steady, patient, and unstoppable footing as well as a thick skin. But through this journey, I also gained some wisdom.
Here are a few things I learned from loving a spouse with Alzheimer’s:
Faith, family, and friends can get us through everything.
Looking back with regret is pointless.
Get as much rest as you can when you can.
Some days neither our spouse with dementia or we spousal caregivers make sense.
We don’t need the correct words to get our point across.
We’re all a little “off.”
Remain in the present moment. The past is over and whatever future we have will be our present.
Slow down. What we are doing at a given time deserves our attention.
Skip the little worries and place the big ones in God’s hands.
Appreciate everything as if experiencing it for the first time.
No matter how far away someone is mentally, they can feel the love.
If this moment is troubling, believe there will be others that are better.
You can’t take care of anyone else if you don’t take care of yourself.
Forget the to-do list. Just do the next right thing.
There’s always something to cry about.
There’s always hope. New medicines, new therapies, and a new peace are ahead.
There’s always joy. Even in the worst of times something good is happening.
Marketing is a must in book publishing. Competition is fierce, and after years of working on a manuscript, and then a few more getting it published, no one will be aware a book exists if we don’t inform them. One of the first ways of doing this is through a piece called a sell sheet.
Sell sheets contain the who, what, when, where, whys, and how of the book. When well-worded, the advertisement draws interest through its compelling call to perspective readers. As shown in the sell sheet below for my new book, Tranquility. Transformation. Transcendence. The Enchanting Promises of Public Gardens, readers see the new cover, learn the book title, ISBN number, number of pages in the book, its price, and when and where it will be available, as well as how to pre-order. There also is a summary of the book, two or three early reviews, and a few sentences about the author.
Sell sheets are then sent to target organizations, communities, and local media. Friends, and family may also receive this piece in hopes that they will help spread the word. Please comment if you’d like to know more about sell sheets or my new book. I’d love to hear from you.
This was a question I posted on my family and friends Facebook page. (I also have an author page.) I asked followers if they have a favorite poem and if they purchase books on poetry.
I was curious because my new book which is in publication as we speak contains 72 poems and photos reflected by nature at public parks. Although I’ve written 11 books, a book devoted to poetry is a new space for me, and I’m contemplating as to how to proceed. Poetry books are traditionally tough to market.
The responses to my Facebook question were insightful and fun for me to learn. Sally said she owned all of Mary Oliver’s books, (as do I), and Trudy owns all of Ann Weems’. Carol said she is a traditionalist and enjoys Tennyson, Dickenson, E.E. Cummings, Poe, and Whitman.
Sue says that Robert Frost’s “The Road Not Taken” is special and likes poets Hugh Prather and the title, Rubaiyat of Omar Khayyam. As to her favorite style of poetry, Sue added that she loves haikus because they are simple and powerful.
Steve enjoys Shel Silverstein’s books of poems, Where the Sidewalk Ends and A Light in the Attic, which are books I enjoyed reading to my children. He also likes “The Raven” by Edgar Allen Poe.
Cheryl said that one of her favorite poems is “The Desiderata” by Max Ehrmann. She said she doesn’t buy poetry but enjoys reading it.
Kurt shared his favorite poem “Do Not Go Gentle into That Good Night” by Dylan Thomas. The poem begins, “Old age should burn and rave at close of day . . . “
Becky and Beth admitted that they do not like poetry. However, I do wonder when people claim this, because most enjoy music and/or Scripture, which are both very poetic. Perhaps, they simply don’t like certain poetic styles.
And at the heart of writing and other creative styles are the words of Charles Bukowski in the poem, “so you want to be a writer?” Thank you, Joey for sharing this great find. I certainly identify with this piece.
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so you want to be a writer?
Charles Bukowski – 1920-1994
if it doesn’t come bursting out of you in spite of everything, don’t do it. unless it comes unasked out of your heart and your mind and your mouth and your gut, don’t do it. if you have to sit for hours staring at your computer screen or hunched over your typewriter searching for words, don’t do it. if you’re doing it for money or fame, don’t do it. if you’re doing it because you want women in your bed, don’t do it. if you have to sit there and rewrite it again and again, don’t do it. if it’s hard work just thinking about doing it, don’t do it. if you’re trying to write like somebody else, forget about it.
if you have to wait for it to roar out of you, then wait patiently. if it never does roar out of you, do something else.
if you first have to read it to your wife or your girlfriend or your boyfriend or your parents or to anybody at all, you’re not ready.
don’t be like so many writers, don’t be like so many thousands of people who call themselves writers, don’t be dull and boring and pretentious, don’t be consumed with self- love. the libraries of the world have yawned themselves to sleep over your kind. don’t add to that. don’t do it. unless it comes out of your soul like a rocket, unless being still would drive you to madness or suicide or murder, don’t do it. unless the sun inside you is burning your gut, don’t do it.
when it is truly time, and if you have been chosen, it will do it by itself and it will keep on doing it until you die or it dies in you.
The definition of success is curious to me. Is it number based, such as our financial worth, how many boards we serve on, how much product we’ve sold, or how many children we have? Perhaps, it is title based, such as president, CEO, pastor, or doctor. Or is success the achievement of a personal goal, whatever that may be?
Most of us are critical of our self-assessment of success. For example, our goal may have been to become a professional singer. If our calendar is filled with dates does that indicate that we are successful? Or must we also consider how much we are paid for these bookings and the types of gigs we work?
One truth I found while interviewing hundreds of people through the years is that if someone has achieved greatness in a particular field, they likely have little to show in other parts of their lives. We only have so many hours in a day, so many days in our life to achieve this goal. If we devote 90% to one thing, we can’t put in more than 10% anywhere else.
While attending a television award ceremony years ago, I realized that those who received honors for their tremendous levels of success in a role on or behind the scenes honestly noted that they reached that level because of someone, mostly a spouse or life partner, who carried the load at home. They were able to focus entirely on their career because someone was behind them caring for the home, children, and even their personal needs. Their partner actually was equal in accomplishing that goal for one of them.
Some note that their personal success appears to be minimal to others yet is significant to them, such as maintaining sobriety, feeling positive or grateful, or regaining strength. Personal tragedy, injury, or illness may have robbed them of mobility, hope, or motivation. Getting back on track one minute step at a time may be a tremendous achievement for these people.
Perhaps, success is attaining a full package of work/family/life balance. We are doing well at work. We care for our family whole-heartedly. And we care for our personal needs considering what it takes to maintain a healthy body, mind, and spirit. That isn’t likely to put us at the top in any one particular position. But we are invested in all parts of our lives.
Recently, I was speaking with a wise, intuitive acquaintance. I told him that I was disappointed in my book sales. Several of my titles sold well, some are even considered best sellers at my publishing house. But none were going to cover my living expenses, much less the years it took to write them.
This new friend pointed out that books are written to fulfill a need in the author. Also, many of the books I’d written were helpful, even said to be life-changing, for readers. Those books helped more than I could measure because of the ripple effect—the number of people who were helped because of how the book affected that reader who then reached out to others. According to this acquaintance, that made a book successful.
It then appears that how we measure our success is a personalized assessment meaningful to us. Only we can set our goals and strive to attain them. Only we can honestly know if we are, and have done, what we’d hoped with our lives leaving behind a legacy of which we can hold our head up high.
Birthing is hard work. Whether we humans are giving birth to a child, a horse to a colt, or a writer to a book, the process takes time, nurturing, and struggle.
My next book, tentatively titled, Tranquility, Transformation, Transcendence. The Enchanting Gifts of Public Gardens, is prime example. I’ve been working on this book for years. It is not only an unusual book for me, it is a bit different overall. The book contains photos of nature taken at three public gardens paired with poems prompted by the photo.
My previous books were quite serious. They covered the topics of women’s experiences with mentoring, praying with the Virgin Mary, Saint Theodore/Mother Theodore Guerin, spirituality and aging, and caregiving to loved ones with dementia. The Enchanting Gifts of Public Gardens is light, inspiring, and fun. It was a joy to put together and hopefully, a joy to read and ponder, something I needed, and I believe the world needs, now.
Books require time to stew, develop. I begin with a concept, a rough idea of what I’d like to cover. The book then takes on a life of its own once I begin to gather research and thoughts. The end result is often very different than I originally anticipated.
This evolution happens for many reasons. Occasionally, the story I want to tell isn’t more than what should be covered in an article or blog post, so I write it that way, instead. Every now and then, I lose interest in the topic, which no longer allows me to write an interesting book, and so I abandon that idea completely. Sometimes, the information I’m attracted to is heavy in a particular direction, and therefore, I venture off down that path.
I believe one book I wrote was spirit driven. While writing The Rosary Prayer by Prayer, I felt as if I was being directed by a higher power. The writing came together quickly and smoothly.
Most often, the book I write is basically the same as my original intention–with some refinement. Either I or my publisher narrows the topic. For example, in The Enchanting Gifts of Public Gardens, I had written poems about nature that were from numerous locations. My publisher advised I narrow this book to three public gardens. The rest may be used in future books. Now that this one is ready to go to publication, I totally agree with the narrower focus.
The process of putting a book together is like building a puzzle. Words build sentences that build paragraphs, that build pages and chapters, and so on. Even the title continuously evolves. I began The Enchanting Gifts of Public Gardens with the working title Poetic Nature. There were several reasons why my publisher wasn’t keen on that. And who knows what it will be in the end. It may continue to be tweaked.
Hopefully, the timing for this book is perfect. My last book, Inspired Caregiving, was released at the beginning of the COVID pandemic. Many of my other books, particularly the ones on prayer, did well during that time, but Inspired Caregivingnever got much attention, which is unfortunate. I believe it has much to offer caregivers on every level from parents and teachers to caregivers of those seriously ill.
The Enchanting Gifts of Public Gardens is scheduled to be released this spring. It is ready and waiting its turn to go through the publishing process, so I hope to be telling you more about it soon.
This poem sums up how we feel while living with a loved one with Alzheimer’s disease. Like a tease, we are shown moments of lucidity that briefly allow us to think all is well. Periodically, our loved one knows us, remembers our many adventures and shared life. Such moments quickly vanish and become less frequent as the disease progresses.
I wrote this poem for the opening page of my book, Navigating Alzheimer’s. My husband, Marshall, showed symptoms of Alzheimer’s during the last 15 years of our marriage. The heartache of witnessing the decline of his health and memories of our lives together continuously diminishing, in addition to the demands of around-the-clock caregiving, took its toll on my own mental and physical health. However, I learned while caring for him that loving and accepting him where he was at each point in time in the illness was important. Since, as of this writing, there is no way to reverse the disease, symptoms are progressive. Although today may be sad and difficult, tomorrow will likely be worse.
Live in the moment, enjoy the moment, alongside your loved one, wherever that takes you.
***Learn more about managing symptoms of Alzheimer’s and other dementias, as well as my experience, in the books The Alzheimer’s Spouse and Navigating Alzheimer’s. And please, if you have read either of these books, write a short review on Amazon.
Rich in symbolism and significance, this familiar image of Mary, the mother of Jesus, is actually a self-portrait. The true story of Our Lady of Guadalupe is fascinating and intertwines cultures across continents and centuries right through to the present. Countless miracles have been attested to devotion to Our Lady of Guadalupe, including one incredible personal miracle I myself received in 2008.
Read on for more of this intriguing story.
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In the late sixth century, Pope Gregory the Great gave a black Madonna statue to Archbishop Leandro of Seville, Spain. When the Arabs invaded the country in 711, the statue was buried in the mountains of Asturias along the Guadalupe River. (Burying sacred items was a common practice to prevent their desecration and theft.) The legend is that five centuries later, Mary appeared to a man named Gil Codero and instructed him to dig for the buried sculpture. Codero retrieved the statue and placed it in a shrine on that same spot. The Spanish people showed honor to Our Lady of Guadalupe, Spain, by journeying to the shrine to pray.
Several centuries later, on December 9, 1531, across the ocean on the hills of Tepeyac, Mexico, a young peasant named Juan Deigo was drawn to a bright light. There Juan found within a cloud a beautiful woman dressed in vivid colors. The woman spoke to him in his native Aztec tongue of Nahuatl. She said she was the Ever-Virgin, Holy Mary, Mother of the God of Truth. The Lady instructed Juan to go to Bishop Zumarraga of Mexico and tell him to build a chapel on the hill. However, it took Juan three attempts and a miracle before he convinced the bishop that this message indeed came from Mary.
In the midst of winter, Mary provided what Juan thought was a sign for the bishop. It consisted of an exceptional bouquet of flowers, including Castilian roses, that he gathered from snow-covered hills per Mary’s instructions. Mary arranged the flowers herself and wrapped them in Juan’s own modest cloak, known as a tilma. However, it was a much more impressive sign than the beautiful flowers that Mary gave the bishop. Upon opening the cloak to present the bouquet, the exact image of Our Lady as revealed to Juan was printed on his tilma. The shocked bishop humbly dropped to his knees in tears.
The apparition was important to the indigenous people as well because it struck some significant correlations between the natives and their pagan gods:
Mary was shown in bright, bold colors standing in the rays of the sun on a crescent moon. The indigenous people considered the goddess Coatlicue the mother of the sun and the moon.
Mary told Juan that her name in his native tongue was Tlecuauhtlacupeuh, which means “the one who crushes the serpent.” One of the native gods, Quetzalcoatl, was a feathered serpent to which people sacrificed women and children.
The natives soon learned that while the serpent god required human sacrifice, Mary’s son, Jesus, sacrificed himself for all people.
Not only did Mary speak to the people in their language, she reached out to Juan as his friend and protector. She told Juan not to let anything discourage or depress him. She said he should not fear any illness or pain, because she was his mother. She promised to protect him in the folds of her mantle in the crossing of her arms. After the apparitions millions were drawn to this special woman and her message, thereby converting to Christianity.
The Spaniards in Mexico were touched by the miracle, as well. Tlecuauhtlacupeuh, the name Mary used to address herself in the language of Nahuatl, sounded like the word “Guadalupe” to the Spaniards. The Lady even wore stars on her cloak as found on the ancient statue of Guadalupe, so the Spaniards believed she was their own Lady of their native land of Guadalupe, Spain.
In addition, Mary’s relation with Juan forced the Spaniards to reconsider their perceptions of the indigenous people, whom they considered inferior. Mary honored the native culture with her presence. Consequently, the Spaniards had to recognize and respect them equally as children of God.
Scientists made several studies on the tilma to verify its authenticity. The scientific consensus consistently found that the icon truly is a heavenly creation. There are no brush strokes. Nor are the rich colors the result of any paint of dye known to humankind (with the exception of some flourishes added later).
The story of Our Lady of Guadalupe illustrates Mary’s love for all people. However, she is most present to the poor, sad, sick, and lonely because that is where she is most needed. She is with us in our grief and human pain. Mary’s motherly concern is that everyone is treated justly and strives to live a life in a way that is pleasing to God. Her message always is to pray more and live peacefully.
Today, Juan’s tilma is displayed in the world’s busiest Marian shrine, Our Lady of Guadalupe Basilica, located in Mexico City. Millions of pilgrims travel worldwide each year to see the magnificent piece firsthand. From a moving walkway only a few feet below, pilgrims can see the image of Mary exactly as Juan saw her nearly five hundred years ago. The reality of the privileged opportunity to brush so closely to this self-portrait of our Blessed Mother is evident in the stream of awe-struck faces of the pilgrims beneath it. The experience is life-changing for the many people who claim they receive personal miracles in its presence.
After five centuries, it is extraordinary that the tilma exists today unharmed and without deterioration of the cloth or colors. Made from the fibers of a cactus plant, it typically would disintegrate within twenty years. Also, a bomb exploded beneath it in 1921 ripping apart the marble in the sanctuary but without causing any damage to the tilma or its glass cover. The tilma’s incredible survival alone is an inspiration to patrons praying before it.
A question I’ve been asked over the years is which of the books that I’ve written is my favorite. This is a question that is as impossible to answer as which child is my favorite. Each book is special to me. I’m proud of all of all of them for different reasons.
Each was written with an intent to fill a need. Each book was sent out into the world with a mission to offer information and consolation to a particular audience. Most have won awards and sold consistently well over the years. And now I’m very excited about a new book coming out this year, which I will tell you about at the end of this post.
Mentoring Heroeswas my first book. Published in 2000, this book centered on my recognition through newspaper articles I’d written that successful people attributed their progress to the mentors who helped them along the way. I also recognized that women’s lives are complicated and multi-layered with family, household, and work responsibilities, and therefore, more challenging in finding ways in which to be mentored. Mentoring Heroes was widely used in university Women Studies programs and by clubs and groups. Today, I know that the book is dated in the way that it was printed–with copper plates and blue-line editing as opposed to today’s digital print method–and due to men participating more in household responsibilities and technology offering more ways in which to be mentored. Yet, the overall benefits and need for mentoring remains relevant.
The Rosary Prayer by Prayer, Grieving with Mary, andFatima at 100. Fatima Todaywere inspired by a devotion to the Virgin Mary. These were the types of books I wanted to write since childhood. Praying with Mary should always lead to a greater devotion to her son, Jesus. Mary is our heavenly mother, and like a good mother, she loves us dearly, promotes peace among all creation, and encourages us to care for one another as Jesus does. Praying with her offers a sense of calm in a world where this type of alliance is greatly needed.
With the The Rosary Prayer by Prayer readers can pray along simply by following pages showing the placement on the rosary, the prayer to be prayed, illustrations by Joseph Cannella, and a reflection. Grieving with Mary is a best-seller that aligns praying with Mary in a wide variety of ways during times of loss. And Fatima at 100. Fatima Today is a little booklet that reviews Mary’s messages in Fatima, Portugal in 1917 and how those messages remain vital in attaining peace.
Seven Principles of Sainthood Following Saint Mother Theodore GuerinandSaint Theodora and Her Promise to Godare books about a woman who immigrated to the United States to teach children and young woman. Saint Mother Theodore Guerin, also known as Saint Theodora, and a small group of sisters opened schools throughout rural Indiana and Illinois in the mid to late 1800s, a time when Catholic schools were greatly needed and in which this band of women faced great obstacles. The sisters also opened a school for the higher education of women when women had little-to-no choice for such an opportunity. Seven Principles was written for adults and Saint Theodora and Her Promise to Godwas written for children. I was inspired to write these books after attending Saint Mary of the Woods College, the school Saint Mother Theodore founded, as well as her canonization in Rome, Italy.
Young in the Spirit was published in 2013 when I was closing in on one of those big decade birthdays (I was 60 in 2014-Yikes!). Big birthdays spark contemplation on where we came from, how we arrived at a particular point in time, and where we anticipate the future to bring us. One of the areas of contemplation for me was in regard to my faith—how it changed through the years and what I could offer the Church now. Those thoughts are at the heart of Young in the Spirit.
Hans Christian Andersen Illuminated by The Message was part of a series initiated by my publisher, Greg Pierce. The series offers a unique way to promote prayer by pairing Scripture verses with passages from classic writings. I chose Hans Christian Andersen in remembrance of my mother and her childhood book, a 1936 edition of Anderson’s Fairy Tales, the same book from which my mother read to me.
Navigating Alzheimer’s,The Alzheimer’s Spouse, and Inspired Caregiving was born from a need recognized by Pam Sebern, the director of a memory care home where my husband resided in his last years. Pam asked for books to help families understand dementia and better care for their loved ones while caring for themselves along the way. She felt that the books available at that time were too medical and needed a perspective from one who lived the experience. As my husband suffered from symptoms from Alzheimer’s disease for more than 15 years, and I was an author with substantial writing experience, Pam believed I could fulfill that need.
Navigating Alzheimer’s covers the basics of Alzheimer’s and ways in which we can work with our loved one. It offers family members and caregivers a clear overall of the changes they’re likely to notice. The Alzheimer’s Spouse also covers the basics of the disease but from the perspective of the spouse. Alzheimer’s touches every aspect of both spouses in devastating ways. Inspired Caregiving provides readers with a daily/weekly boost of inspiration. Each weekly reflection follows a rotation that includes a photo, prayer, thought, activity, stretch, affirmation, quote, and bit of humor to offer guidance, encouragement, improved self-talk, and maybe a smile. All three of these books are recommended by memory care facilities across the country.
My next book, which currently is in publication, is less serious. I believe readers and I are in need of opportunities that promote peace, beauty, love, and inspiration. For this reason, my newest book, tentatively called The Gifts of Public Gardens, showcases vivid photos of nature that I have taken at public gardens paired with short, thoughtful poems. My intent is for readers to escape into the positive, wonderous gifts around us. I will keep you posted on when this book will be available.
If you’ve read any of my books, please post a review on Amazon. Readers rely on these comments to find books best suited to their needs.
On February 23, 2022, I posted about a new position I have with my publisher as a marketing advisor. I’m enjoying coaching authors in ways they can promote their new books. Every author and book are unique in its opportunities to reach their readers. I brainstorm with these authors on how they may take advantage of those avenues, such as reaching potential readers in their particular lane, as well as with press releases, blog posts, and maintaining an informative website.
If I was grading the authors I’ve worked with so far, I’d give them all A+s for their efforts. They fully understand their responsibility to promote their book along with the publisher and are striving to do so to the best of their abilities. Perhaps one or more of their books are exactly what you’re looking for. Following is a bit about each of them and links for ordering.
Steven Denny, author of The Merton Prayer: An Exercise in Authenticity illustrates how words are powerful, both the ones we say out loud and those that ramble in our heads. Author Steven Denny claims that a group of words written by Thomas Merton that begin with “My Lord God, I have no idea where I am going” changed his life. And he isn’t the only one. Denny offers fourteen reflections on this prayer with color photographs, scriptural passages, personal stories, and questions designed to stimulate serious and deep reflection on the profound words of the Merton Prayer.
Leaps of Faith: Playful Poems and Fanciful Photosby Marva Hoeckelman, OSB is a quirky, faith-filled book of playful poems and photos depicting contemporary monastic life in America. Sister Marva shakes up some of the stereotypes of vowed religious held by many in secular society with her imagination and personal experiences in this fun, yet thoughtful, book.
Sometimes David Wins is a remarkable book of true stories by community organizer Frank Pierson who spent a career encouraging and training people to organize enough power to take on the Goliaths that sought to do them wrong. Starting with his own family’s checkered history of involvement in the infamous Ludlow Massacre in Colorado in 1914 and continuing through the founding of community organizations in Illinois, New York, Arizona, Nevada, and Colorado, Pierson weaves his considerable storytelling skills to create a picture of “the world as it could be.”
Bending Granite: 30+ True Stories of Leading Changecompiled by Tom Mosgaller, Maury Cotter, and Kathleen Paris is an inspiring and informative book for leaders from committee chairs and supervisors to educators and students. Readers are gifted with more than 30 stories from people who share how they brought about positive change under circumstances that were as challenging as bending granite.
These books are available from both the publisher, ACTA Publications, and Amazon.
Midwest Mary 