Inspired Caring Michele Magner

Introduction: In this episode, we delve into the profound journey of Mary Lou, a dedicated caregiver to her husband, the renowned artist and rocker, Nicholas ‘Nicky’ Zann. Mary Lou candidly shares their story of navigating life with Lewy body dementia, shedding light on the challenges, resilience, and the importance of understanding and support.

Key Points Covered:


Understanding Lewy Body Dementia (LBD):


Mary Lou describes how LBD differs from Alzheimer’s, with fluctuating symptoms affecting memory and behavior. It's a condition affecting 1.4 million Americans and 11 million globally, though it remains relatively less known.


The Caregiver’s Perspective:


Mary Lou emphasizes the need to meet the person with dementia where they are, suspending personal needs to prioritize theirs. Caregiving is described as improvisation, requiring adaptability and a willingness to accept failures.


Lessons in Forgiveness and Vulnerability:


She reflects on her book, “I Didn’t See it Coming, Scenes of Love, Loss and Lewy Body Dementia,” as a journey of reconciliation with herself as a caregiver. Forgiveness and vulnerability are central themes, offering insights into the complexities of caregiving.


Nicky’s Messages and Final Moments:


Mary Lou shares Nicky’s enduring messages and the profound experience of understanding his needs in his final moments. She highlights the transformative potential of grief, turning it into catharsis.


Raising Awareness and Encouraging Support:


Mary Lou advocates for greater awareness of Lewy body dementia, urging celebrities and public figures to help shine a light on this condition. She underscores the importance of creating supportive communities for family caregivers.



Notable Quotes from Mary Lou:

“You have to join the person where they are, you can’t expect them to come to you in their former state. It’s just not possible.”

“Suspend what you need and give them what they need.”

“Grief doesn’t have to be your nemesis, it can be your
catharsis.”



Closing Thoughts:
Mary Lou concludes by emphasizing the moments of light and hope amidst the challenges of caregiving. Her story serves as an inspiration and a call to action for increased understanding and support for those affected by Lewy body dementia.

ABOUT THE AUTHOR & ILLUSTRATOR

Mary Lou Falcone is internationally known as a classical music publicist/strategist who for 50 years has helped guide the careers of celebrated artists – Van Cliburn, Gustavo Dudamel, Renée Fleming, Sir Georg Solti, James Taylor – and advised many institutions including Carnegie Hall, Chicago Symphony, Los Angeles Philharmonic, Philadelphia Orchestra, New York Philharmonic, and Vienna Philharmonic. Combining communication skills with her background as a performer and educator, she now adds another layer: advocate for Lewy body dementia (LBD) awareness. Her late husband, the illustrator Nicky Zann, who died from LBD in 2020, was the catalyst for this, her first book.

Nicholas ‘Nicky’ Zann, the inspiration for this book, was a popular 1950s rock ’n’ roll musician who became a world-renowned cartoonist, illustrator, and painter. His work hangs in the permanent collection of London’s Victoria and Albert Museum, and the illustrations featured throughout this book come from his bestselling fortune-telling card game, The Answer Deck.

Visit Mary Lou's website HERE.

Buy her book HERE.

When DeAnna's Dad began to need more help, she and her husband opened up their home, not realizing they were embarking on a journey that would span many years.

Sharing her home with her dad provided the daily opportunity for him to be around her kids, which brought them all tremendous joy. DeAnna shares how she navigated her role through the frustrations, touching moments, and ultimately end of life care for her dad.

Losing someone you care for creates a unique void that is hard to fill. She was grateful to the Hospice company for their compassionate follow up in the weeks and months after he passed away. Grief is not linear, and she has found comfort in allowing herself to feel whatever comes up and journaling her thoughts.

She mentions that she is an Executive Coach so if that caught your attention, I want to be sure you can reach her!

Next Steps: Be sure to connect with DeAnna,

1) On Facebook

2)On LinkedIn

At the end of this episode, there is a clip of a song created for DeAnna's family about her dad by Singer-Songwriter, Colin Roberts.

When writing lyrics, Colin wants to be sure to touch on what is most meaningful to the family. For DeAnna, this included each of the girls’ names - Dawn, Dixie, DeAnna, and Dana. She recalled that when her Dad would leave a voice message he often said “Hello, it’s your dad, You better call me back” and they have fond memories of how much their dad loved hosting pasta Sundays.

Thank you, DeAnna for sharing this deeply personal gift of music with us, and to Colin Roberts for making it happen.

Episode Summary: Singer-songwriter Colin Roberts shares his journey of writing personalized songs for life's significant moments. From weddings to funerals, his mission is to tell stories by capturing the essence of cherished memories and heartfelt emotions and turning them into music.

Bio: Colin has been performing his entire adult life. He grew up in rural Nebraska and now lives near Omaha. Colin's music combines the soulful vocals of Chris Stapleton and the honest songwriting of Bruce Springsteen. He enjoys various genres like Americana, Alternative, Folk, Country, Rock, and Pop. Some of his biggest influences include Jason Isbell, BJ Barham, Ruston Kelly, The Lumineers, The Head and the Heart, Chris Stapleton, U2, Pearl Jam, and Led Zeppelin, among others.

Summary: Colin’s journey into music was deeply personal, sparked by the therapeutic writing process after his father's passing. This profound experience led him to a realization: “People want to feel,” and he believes that “every story should be allowed to be sung.” 

His music is a testament to this belief, a heartfelt expression of the human experience.

Today his music is about crafting songs that genuinely reflect others' experiences; weaving deep meaning into each note. Through collaborative sessions with clients, he shapes their words into lyrics, ensuring that every song is a unique and personal creation.

“The Joy is When Music and Lyrics Marry Each Other”

Colin reflects on music's profound impact on listeners, as it evokes memories and emotions unique to the individual. A chorus can bring goosebumps, and songs can have layers that make one feel deeply moved. Songs written about one’s personal experience could unexpectedly resonate with others, reinforcing the universality of human emotion.

He elaborates on his approach to songwriting, from chord progressions to melody creation, ensuring each element complements the story being told. Colin discusses the collaborative nature of his work, inviting clients into the process and ensuring their stories are authentically represented.

Next Steps:


Explore song samples and submit your story for a song at https://www.colinrobertsmusic.com/
Listen to the song he wrote to honor his father "⁠Coffee In The Driveway⁠".
Personalized songs can be enjoyed privately as you take your recording with you, or they can be shared with others when set to imagery as part of a photo slideshow, further enhancing the emotional impact of music.
Colin is also available for live shows where musical memories that resonate with listeners form deep, emotional connections.

Current research shows 1 in 2 cases of dementia can be
prevented.

In his book, Dementia Prevention, Use Your Head to Save Your Brain, co-written with his wife, Dr. Emily Clionsky, Neuropsychologist Mitchell Clionsky Ph.D., addresses how to prevent dementia. Not surprisingly, earlier interventions are KEY.

This conversation covers a lot of territory and you will
have specific things you can do today to set yourself up for success.

Three key areas to focus on prevent dementia.

1. Address underlying Medical Issues

2. Get the appropriate medication

3. Address daily habits

Medical Issues

              We may test at normal folate and B12 levels but vitamins aren’t crossing the brain-blood barrier so absorption is low and you may test low on the amino acid, homocysteine. When it’s time for blood work be sure to ask for this important test.

              Sleep apnea must be addressed. People 58 or older have a 50% chance of having sleep apnea disorder. If erectile dysfunction is a concern it’s an oxygen and blood flow issue, so there may be a connection to sleep apnea that needs to be explored. Red flags are if people stop breathing for more than 10 seconds or blood oxygen levels drop 4% during an episode. A simple overnight test (in your own bed!) can give you this information.

Memory Medications

There are 4 medications approved by FDA since the 1990s.

Practitioners have been misled, looking at short-term results rather than the long gains. The evidence for them is they can prevent decline, it’s not going to improve memory, but it keeps you from declining.

Daily Habits

Denial doesn’t help, The first thing is to be aware and honest about your habits!

Exercise - Your brain needs enough exercise to keep working properly.  Follow the 10 by 3 rule – 10 minute brisk walk 3 times a day. Exercise is cumulative. 150 -300
minutes per week is the range you’re after.

Alcohol consumption matters. This is not a yes or no
question about if you drink or not. It’s how much, how often, and what you drink that needs to be explored.

Social connection – people who have this habit are
better protected against dementia. Having connections is important!

Keep learning – not just brain games and reading, do the
interpersonal version of learning/problem solving like playing pool or cards.

Don’t retire from life when you retire from your job. Start
planning for it, and continue to have long-term goals.  Be bad at new things you’re trying to learn.

Reframing things is an important part of psychology. Adjusting the way we think about certain things and adapting to being different than how we were, fosters growth. This is especially important with aging.

Pay attention and be mindful, of what you’re doing throughout your day and what you’re eating.

Mitchell also clears up some of my misunderstandings about
Frontotemporal dementia and reassures me that even by today’s standards, my mother-in-law's dementia is one of the tougher ones to treat.

The mortality rate of caregivers is higher than non-caregivers. Don’t be the person who drowns trying to save someone else!Download your dementia prevention checklist and roadmap at www.braindoc.com.

Buy the book, Dementia Prevention, Use Your Head to Save Your Brain.

When the love of his life had a stroke, Dave Nassaney quickly fell into the role of caregiver, uncertain of what the future was going to bring.

Determined to beat the alarming statistic of caregivers dying before their loved one, two decades later, Dave is “The Caregiver’s Caregiver” using every platform available to share their love story and help others find success in the caregiver role.

Dave shares his C.A.R.E. formula and encourages people to stay away from guilt. Guilt is like taking poison and expecting the other person to die.

He emphasizes the importance of not allowing yourself to be bullied or abused by the person you are caring for and that finding forgiveness will set you free.

Dave’s programs teach people how to put their own needs first, in order to provide the best care possible.

Dave is confident that God has a plan for him and Charlene. He reflects on them being better people today because of her stroke.

Although she is unable to speak, he credits her ability of being a great communicator to their success. You will
hear how he fine tuned his communication skills, having an
ability to read the nuances of her body language and gestures.

We also discuss the typical caregiver pitfalls and how to avoid them.

His knowledge and wisdom are extraordinary, this is a Conversation with Caregivers you don’t want to miss!

Connect on ⁠Facebook⁠
Read his ⁠Books⁠
Listen to his Podcast
Visit his ⁠Website⁠

One of the greatest fears we have is the day the person living with dementia doesn't recognize us.

While there is really nothing that can prepare us for this moment, there was a progression of things I noticed with my mother in law, Sherry, that led up to it.

While the brutal reality of this moment stings and cannot truly be prepared for, the work that we do here with Inspired Caring around knowing ourselves, learning how to feel our emotions, being mindful, and having present moment awareness, helps us navigate through this experience.

In this episode, I share the stages of what I noticed and how long it took to progress from full recognition to not knowing who we were.

You'll discover the strategies we used to have the most meaningful interactions along the way.

I want to hear from you!

Send me your questions or comments, hello@inspiredcaring.com. I'll get back to you right away.