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Love Conquers Alz

Love Conquers Alz

Author: Susie Singer Carter and Don Priess

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2020 WINNER BEST PODCAST - New Media Film Festival. Caregivers have one of the hardest jobs in the world. Having both been caregivers for a family member affected with Alzheimer’s, Susie Singer Carter and Don Priess both know this is a disease that cannot be faced alone. In fact, their Oscar Qualified film based on Susie's Mother, MY MOM AND THE GIRL starring Valerie Harper in her final performance - has and continues to touch people all over the world. Their goal was to let others know they are not on their own and to help them find the JOY in the journey. And that's just what they do in their Podcast "Love Conquers Alz".
45 Episodes
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In Episode 44,  Don and I had a candid conversation with Jennifer Fink -   Founder and Host of Fading Memories Podcast - about a topic that doesn't  seem to get as much attention as it should. Personal hygiene and our loved ones. As Alzheimer's progresses, poor hygiene can become an issue: people living with dementia (PLWD) often refuse to bathe and even change their clothes.  It can even lead to medical problem such as urinary tract infections. Because Alzheimer’s causes a slow decline of cognitive functions, a PLWD will begin to get confused about seemingly simple things, like how to wash their hair.  A PLWD may be overwhelmed and confused by all the products on the bathroom counter, perhaps mistaking a tube of lotion for toothpaste. Sometimes they don't recognize their loved ones or even themselves, so the images they see in the mirror may be confused as strangers!Sensory perception, especially vision, touch and smell, also changes. This can make a tub of water seem scary as depth perception changes.  The water spray from the shower can feel like sharp needles.  A smelly shirt may be more comforting than a freshly laundered – but unfamiliar – replacement. Room or water temperature may feel different to the PLWD than it does to us. Jennifer shares some of the best tips for overcoming the challenges associated with PLWD's and their personal hygiene.  Jennifer spent the first half of her adult life as a portrait photographer, retired from in early 2020. Listening to podcasts became a favorite way to learn new things while walking the dogsor doing household chores. After the death of her father in March 2017, dealing with and caring for her Mother became a much bigger part of her life. Looking to her favorite media in search of answers and not finding what she was looking for, Jennifer decided she would create a supportive podcast that caregivers of Alzheimer’s patients need and deserve. Jennifer is the daughter, grand daughter & great grand daughter of women who suffered from Alzheimer’s or other cognitive impairment. Looking for answers on how not to become the fourth generation with this problem  has led her on this interesting journey with her new passion, podcasting.Connect with Jennifer: FACEBOOK TWITTER INSTAGRAM LINKEDIN APPLE PODCAST SPOTIFYSupport the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
In our Season Three Premiere (wow!!), Episode 43,  Don and I talked with the force that is Marianne Sciucco -a registered nurse who's cared for hundreds of dementia patients over a 20-year career.  Her novel, Blue Hydrangeas, an Alzheimer’s Love Story, is based on a couple she met through her work and is a testament to the power of love in the face of this heart wrenching disease. Marianne’s tender work of fiction brings consolation and understanding to all who encounter Alzheimer’s. Ironically, two years after her novel’s publication, she started living her own story when her stepfather was diagnosed with mixed dementia: frontotemporal lobe, vascular, and Alzheimer’s.  As his Health Care Proxy and Power of Attorney, she became his medical, legal, and financial representative. At the same time, she became the same to her mother, who was suffering from heart failure and dementia caregiver PTSD.  With her novel in place, it eventually morphed into her current project which is Alzauthors, a global community of over 300 writers who are writing about all dementia from their personal experience. She also launched her own podcast “Untangling Alzheimer’s and Dementia: An AlzAuthors Podcast”Email  - mariannesciucco@gmail.comTwitterFacebookLinkedInSupport the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
In Episode 42, Don and I spoke with Swedish Caregiver, Patrick Berglund,  We "met" this angel after he watched our film, My Mom and The Girl, and reached out through social media to tell us how much he enjoyed it. And we have been friends ever since.I have always been  struck by Patrick's dedication to caregiving and the pure joy it gives him.  I found it fascinating and beautiful that a young father -- without any family  living in a senior facility -- chose to make his living in Elder Care.  He definitely falls outside outside the American Caregiver box. Patrick has been working in  elder care for almost 19 years. As he says, "To work with the elderly has been the best job in my life."  And, of course,  we delved into the moniker  - The Singing Nurse -  he was recently given by the Swedish Press. In his spare time, Patrick is a team leader for a women's soccer team.   He lives with his wife and two daughters 24 and 17 years old in Sweden in a town called Motala, by the second largest lake Vättern. FACEBOOKINSTAGRAMSupport the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
In episode 41, Don and I spoke to the absolutely delightful and dynamic Kennedy Loftin, Chief Development Officer at the Montrose Center, one of the nation’s largest LGBTQ+ resource centers . Kennedy led the $26.5 million campaign to build The Law Harrington Senior Living Center, the nation’s largest, LGBTQ affirming senior housing center that opened on June 24, 2021. In response to Hurricane Harvey, Kennedy launched the LGBTQ Hurricane Harvey Relief fund which raised $2.3 million to help the LGBTQ+ community recover from the disaster. In the wake of the coronavirus pandemic, the Center launched a fund that has currently raised $2.1 million in funds focused on providing direct financial assistance to vulnerable members of the LGBTQ+ community. Kennedy is a founding member of Houston Mayor Sylvestor Turner’s LGBTQ Advisory Board, has served on several boards, and is a sought-after development educator and leader in the industry, with guest teaching at Rice University, Glasscock School Center for Philanthropy and Nonprofit Leadership and the University of Houston.Kennedy  was born in Houston, grew up in East Texas, and after experiencing housing insecurity following coming out to his family decided to channel his activism into nonprofit development impacting underserved communities. Kennedy began his career at Best Buddies Texas, an organization that serves people with intellectual disabilities, and became the Director of Special Events for Miami-based Best Buddies International. In 2006, Kennedy returned home to Houston to serve as executive director for Best Buddies Texas, and was the youngest executive director in the history of the organization. Kennedy became the Chief Development Officer for Interfaith Ministries in 2008. During his tenure, he led a $15 million capital campaign for the new Interfaith Conference Center and for the construction of the Meals on Wheels building which serves 4,500 seniors daily. FacebookInstagramLinkedInTwitterSupport the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
While our population lives longer... caregivers get younger. More millennials are becoming caregivers in their 20s and 30s. Of the over 40 million caregivers in the United States, one-fourth of them are millennials.  Like the incredible Lauren Dykovitz.Lauren Dykovitz knew nothing about Alzheimer’s when her mother was diagnosed at the age of 62.  She was only 25 years old at the time.  By the time she was 28, she quit her full-time job and became a caregiver for her mom. Lauren started the Life, Love, and Alzheimer’s blog and social media pages to document her journey and share her experience as a caregiver. She self-published her first book, Learning to Weather the Storm: A Story of Life, Love, and Alzheimer’s, in 2017 and is currently finishing up her second book, When Only Love Remains: Surviving My Mom’s Battle with Early Onset Alzheimer’s, which she plans on self-publishing in early summer 2021. Although her mom passed in April 2020, it is Lauren’s mission to help others on their Alzheimer’s journey by sharing stories and lessons from her personal experience. In many ways, she feels like she is just getting started!Lauren lives in New Jersey with her husband and two black labs.BLOG: LIFE, LOVE, AND ALZHEIMER'SFACEBOOKINSTAGRAMLEARNING TO WEATHER THE STORM: A STORY OF LIFE, LOVE, AND ALZHEIMER’S SIGN UP FOR LAUREN'S  MAILING LIST TO RECEIVE THE INTRODUCTION TO MY NEW BOOK, AS WELL AS ANY UPDATESSupport the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
In celebration of Pride Month 2021, we had the honor of speaking with Chris MacLellan, author of "What's The Deal With Caregiving?".   Christopher and his partner, Richard Schiffer,  were featured in a 2015 Pulitzer Prize-nominated caregiving story "In Sickness and Health; A Couple's Final Journey", that chronicled their journey of caregiving.  The story told of the challenges that LGBT partners have in dealing with the medical and legal system, but it also told of the love and joy that Richard’s last years had on their relationship. The Whole Care Network™ has been a dream of Chris’ for quite some time.  He started The Whole Care Network based on his own experience as a working family caregiver and the passion that he has gained through advocacy and collaboration before, during and after caregiving ends. Christopher MacLellan is affectionately known nation-wide as The Bow Tie Guy in the vast network of family caregivers. He founded the Whole Care Network in 2016, presents regularly on topics that impact family Caregivers and now is Aging Gayfully after caregiving has ended.Support the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
In Episode 38, Don and I speak with the incredibly inspirational, ANTHONY COPELAND PARKER. When Tony and his partner, Catherine Elizabeth Popp, were in their 50’s, they found that he needed a heart-valve replacement, and she had early-onset Alzheimer’s. They both had a history as endurance athletes, so their reaction to the news was to sell their home, retire from their jobs, and become nomads, running marathons and half- marathons all over the world. That's also when Tony began writing his blog, PlayHard-HaveFun.com. Since then, he and his partner Catherine have traveled to 82 different countries. They have run at least a half-marathon in thirty-five countries and on all seven continents. Tony has also written a book, Running All Over The World, Our Race Against Early Onset Alzheimer’s. Due out June 15, 2021. This is truly a special story. You will be moved and motivated to move!! Love, SusieFOLLOW TONY ON INSTAGRAMSupport the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
In Episode 37, Don and I have a fantastic conversation with DAN JAWORSKI - whose diagnosis a year and a half ago of Mild Cognitive Impairment hasn't slowed down him down one bit! Dan is currently training for the 2021 Kona Ironman World Championship!  Dan's philosophy on life and how he chooses to embrace his challenges. Dan is gifted with an enormous amount of inspiration and empowerment to share with everyone, including families on the dementia journey. You will lean into the sunnier side of your own life after listening to this episode! I promise!!! xoSusieAbout: Learn more about IRONMAN Dan’s fundraising progress and who he is dedicating each mile of his IRONMAN to on his fundraising page for The Longest Day. Mild Cognitive ImpairmentAdopt a Healthy DietSupport the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
In episode 36, we had the absolute pleasure of speaking with Judy Cornish, author, founder of the Dementia & Alzheimer’s Wellbeing Network (DAWN®), creator of the DAWN Method® of dementia care, and a retired elder law attorney.  Judy is a maverick in the caregiving community and I hope you will take the time to listen and take notes! We could have talked for, at least, another 2 days!!Her two books , The Dementia Handbook and Dementia With Dignity,  take person-centered dementia care from theory to practice by identifying the skills not lost to dementia. Through DAWN, Cornish provides online training programs for families and professional caregivers, as well as certification courses for agencies and facilities.  Judy's life work has been making dignified dementia care and aging in place available for all. TEDx Spokane 2017208.388.8898Support the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
In EP 35,  we spoke with  Marisa Pasquini, an international educator for caregivers who serve people with dementia and Alzheimer’s. She has spent the last 12 years developing strategies that help caregivers survive the challenges of caring for people with dementia. She takes an empathic approach in assessing the needs of clients with dementia and teaches caregiving skills that allow the caregiver to accept and enter into the persons' "New Reality." The goal of developing these skills is to decrease the fear experienced by people with dementia, helping them feel safe. Her methodology gives caregivers confidence, creates inclusion for people experiencing cognitive decline and an empowered way of being in relationship with them. Marisa is especially skilled at understanding the rhythm of the person with dementia, and focusing on the state of the caregiver who is overwhelmed, grieving and in need of self-care.Marisa a Certified Alzheimer's and Aging Educator and a Certified Dementia Practitioner. She's the founder of the National Home Care Academy  and provides certified training for professional caregivers, and support, education and consulting for family caregivers. Marisa is the author of the Amazon Best Seller, Surviving Dementia Without Losing Your Mind.Receive your audio book at 50% off HERE(this link should include the discount code, but if not the Discount Code is loveconquers at checkout (not case sensitive)Find Marisa at:FACEBOOKNATIONAL HOME CARE ACADEMYSupport the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
Susanne White is the Founder of Caregiver Warrior and the author of the "Caregiver’s Little Guide to Survival!" and has found the most happiness in sharing her knowledge, wisdom, and experience as a Caregiver. She wants Caregivers to survive what she calls "this amazing roller coaster of a ride and be open to scream, cry, laugh, and finally arrive home after the ride of your lifetime".Support the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
Joey Paul Jensen is an award winning Casting Director, Movie Producer, Acting Coach, Motivational Speaker, and Peak Performance coach.  She also is a devoted caregiver who knows first -hand that miracles can and DO happen!Joey has been a driving force working with talent in Hollywood for over 20 years. She is a BFA graduate of Disney’s Cal ARTS.  She has appeared as a speaker on Dr. Phil, E Entertainment, TLC, Access Hollywood, Nightline, and The Biography Channel as an expert on self image, acting and pursuing show business.Joey is an entrepreneur and a business leader. She is president of Omnia Entertainment, part of Omnia Global with offices in Switzerland and Los Angeles. She is also the president of JP Casting, a movie and television casting company in Hollywood for over 20 years.​Most notably, Joey co-produced and cast, the award winning SONY release of “Soul Surfer”. It is the famous story about how Bethany Hamilton overcame the struggle of losing her arm to a great white shark. Joey received the prestigious Artios Award for Casting Disney Channel’s “That’s So Raven” along with 12 other nominations which also includes the movie “Soul Surfer”. JP Casting is a casting company with over 70 feature film credits and more than 16 television series.­­­­­­​Since 1994, Joey has cast live action and animated movies and series for Disney Channel, Nickelodeon, Cartoon Network, Discovery Kids, Hallmark, Fox, CBS, ABC, PBS, Lifetime, Syfy, Universal, and Sony.​Joey has taught acting since graduating college and has developed a comprehensive program that guides actors to a greater sense of themselves and their purpose in their acting careers. She is an inspiring and energetic speaker working with kids/teens and professionals about their impact on others, social and emotional awareness, and what motivates our behavior! What is driving us? Joey likes to make small thinkers or big thinkers into even greater thinkers and inspire them to grow in exciting and creative ways.Support the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
The Bob and Diane Fund is an annual grant for visual storytellers—about Alzheimer's and dementia. The 501(c) organization was founded by Gina Martin, a longtime National Geographic photo representative for their photo agency. Gina is committed to finding a cure for Alzheimer's and dementia. This is the 5th year of the Bob & Diane Fund.  They support photographers who are working on stories related to Alzheimer's and dementia through grants and scholarships.  The grant supports work that already exists and to assist in getting the work published in magazines, online, book form, or exhibits. You can more information and view the INCREDIBLE photo essays on the website, here. Support the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
In Episode 30, Max Goldman, a startup entrepreneur and tech industry veteran, has a message: "To the 45 million of you caring, coordinating and contributing to a loved one’s daily money matters: you are not alone."The ProblemTo understand why we are here, call a bank and ask literally any question that would help you understand or protect your parents’ financial activity.If making this call sounds awful and unproductive, we agree. The reality is, today's banking systems weren’t built for caregiving.The StoryTodd Rovak spent the first part of his career helping financial services firms find new and innovative ways to better serve their customers. For years, he imagined a new kind of financial company that could focus specifically on the caregiving life stage (and he’ll be glad to show you his sketches).‍He brought the idea to his friend Max Goldman, who’d recently sold his company to Google. At first, Max just didn’t get it. But then, like so many in the sandwich generation, he began providing care to a loved one and started to experience the challenges of the financial caregiving journey for himself.A Better ToolkitThey are building Carefull because taking care of aging parents is about more than health and safety. It’s also about making sure money issues are under control.Your own children, job and everyday life require so much energy, but you somehow still make time to support the ones who supported you. You make sure bills get paid, watch for fraud or mistakes, and ask siblings to contribute — yet the best the world can offer to help you is paper, spreadsheets, and hold music.Creating safer, smarter tools for financial caregiving isn’t only about money. It’s about relentlessly simplifying the awkward tangle that happens when money and family come together.They see what’s truly possible when it’s easier to manage loved ones’ daily money matters.CAREFULL WEBSITESupport the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
Episode 29:  If you have parents, you need to listen to the week's episode with  Cameron Huddleston,  who shares how caregivers - or anybody -  can learn to confidently face the "F" word... FINANCE!!! Cameron Huddleston is an award-winning journalist with nearly 20 years of experience writing about personal finance. Her work has appeared in Forbes, Kiplinger's Personal Finance, MSN, Yahoo and many more print and online publications. She is also the author of Mom and Dad, We Need to Talk: How to Have Essential Conversations With Your Parents About Their Finances. This book draws on her experience as both a financial expert and a daughter who has had those essential money talks with a parent. Full of practical advice from her life, from others who’ve had the “talk,” and from financial, legal and elder care experts.Support the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
Episode 28:  Senator Monique Limón was elected to the Senate in November 2020 and represents the 19th Senate district, which includes the County of Santa Barbara. Her election makes her the second woman and first Latina to be elected to represent Santa Barbara and Ventura Counties in the State Senate. Her focuses include health, women, consumer protection, natural disasters, and Alzheimer’s Awareness.As Assemblymember, the Senator had the opportunity in 2017, 2018, 2019, and 2020 to put forward a bill every year related to Alzheimer's.  Her work advancing healthcare access earned her the 2017 Legislator of the Year recognition by the Alzheimer’s Association of California. And in 2019, she was successful in putting the Healthy Brains Initiative forward, which allowed for funding to go to our continuums of cares in the counties to be able to do more outreach in relation to early prevention and early detection, which she feels is a top priority for those with Alzheimer’s and their families.  The Senator is a Superstar Advocate driven by her own experience with her beloved grandmother.  How you can contact the Senator:  District Phone: (805) 965-0862 Email: senator.limon@senate.ca.govSupport the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
Episode 27:  Rick Lauber is a professional freelance writer with a sizable portfolio. He began his writing career after pursuing radio broadcasting, bartending, and marketing/public relations. Outside of writing, he continues to work part-time, travel to the mountains as often as possible, and cheer on the Edmonton Eskimos.Rick is also a former co-caregiver for both of his aging parents (his mother had Parkinson’s Disease and Leukemia and his father had Alzheimer’s disease) turned book author. With help from his two sisters, Rick  assumed many new-found caregiving responsibilities. Rick learned that caregiving can impact a person physically, mentally, emotionally, and financially and managed his own health and well-being by writing. Rick’s initially published stories became the platforms for two published caregiving guidebooks – Caregiver’s Guide for Canadians and The Successful Caregiver’s Guide. Rick continues to reach out to prospective new, and current caregivers through different means including presenting webinars and active writing about caregiving and caregiving-related issues for printed and on-line publications. Rick has written two non-fiction books, both published by Self-Counsel Press (North Vancouver). Caregiver’s Guide for Canadians was initially published in September 2010, and has subsequently been updated to a second edition. The second book, The Successful Caregiver’s Guide, published in September 2015, focuses on the American market. Both books are valuable resources for prospective, new, and current caregivers (those helping and supporting aging seniors or preparing to do so). In both books, Rick discusses caregiving as a timely and topical issue, shares his own caregiving story, discusses issues relevant to caregivers, and provides website resources where caregivers can find help at many levels.In addition to his caregiver’s guides, Rick Lauber contributed to Chicken Soup for the Soul: My Very Good, Very Bad Cat—101 Heartwarming Stories about Our Happy, Heroic & Hilarious Pets and Chicken Soup for the Soul: It’s Christmas—101 Joyful Stories about the Love, Fun, and Wonder of the Holidays.OFFICIAL WEBSITESupport the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
Episode 26: In 2002, Trish Laub was told that her father was being treated for Alzheimer’s. Trish and her husband moved from suburban Chicago to the Denver area in 2012 not only to enjoy the beautiful mountains but also to be closer to her parents. With her abundant expertise, Trish has created Comfort in their Journey. Her award winning Comfort in Their Journey book series (A Most Meaningful Life, Peaceful Endings, and Through the Rabbit Hole) provides the clear, concise and easily accessible information that she wishes had been available to her. Trish offers readers her story and experience, and the opportunity to thrive during the caregiving process. These nuts-and-bolts books enable caregivers to be quick studies, think and then act by making informed decisions. After spending 18 years developing computer systems, Trish went on to cofound both a national dance education company and a national nonprofit prevention theater company focused on helping at-risk teens. She is a Black Belt instructor of The Nia Technique and has been licensed since 1999. Using her previous computer and teaching experience in combination with her most recent caregiving experience, Trish provides practical guidance for dignified care through end of life through her book series, speaking engagements and workshops, and consulting. For info: wwwTrishLaub.com. You can also hear Trish on her new radio broadcast, A Cup of Comfort, LIVE the 2nd and 4th Tuesdays at 12PT/3ET on the #1 Positive Talk Radio Network.Support the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
Episode 25Don't wait to advocate!  Nancy Daly is a successful Actor/Playwright/Voice Over Artist, but she says her greatest achievement is as the Founder and National Team Captain of Actors & Artists Unite to End Alz, a National Team for the Walk to end Alzheimer’s sponsored by the Alzheimer’s Association. Actors & Artists Unite is the only non-corporate, grass roots National Team and has raised over $300,000 since 2011.Support the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
Episode 24:  The Power of the Human - Horse Connection.Connected Horse offers human-animal connection, engagement and understanding through its innovative workshops and research which encourage and support individuals living with dementia diagnoses, care partners and professionals.Our work is solely focused on the relationship between people and horses. Through our equine-guided workshops, we are supporting people affected by dementia and their caregivers.  www.connectedhorse.comNancy is a co-founder and Educational Director of  Connected Horse and is a widely known, highly regarded gerontologist and Alzheimerʼs/dementia care specialist,  consultant, speaker and trainer. As principal and founder of Alzheimerʼs Care Associates LLC, she strives to enable her clients to achieve excellence in dementia care.  Whether the environment is assisted living, adult day programs, skilled nursing or home care, Nancy is dedicated to promoting “person-centered” care that offers those with dementia opportunities to grow socially and spiritually and to enjoy enriched and satisfying lives.  Paula is a co-founder and President of Connected Horse,  and she has spent the last 25 years focused on improving service delivery systems for elders in need of care and services through consulting projects and executive management positions. She has broad experience in senior housing and assisted living operations, staff training, regulatory compliance, new program development and family and community needs. She is the founder of Senior Living Consult and co-founder of The ElderHub and provides consulting  services to organizations and individuals in need of  operational and strategic direction regarding elder care services and program development. Support the show (https://www.patreon.com/preview/3feccac8decf451cbee818066461f7c1)
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