“The Long Haul: The Impact of Long-Term Dementia Caregiving," an AlzAuthors Live! Event
Jan 29, 2025 3:01 pm
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Hello ,
If you're like most caregivers, you may have stumbled into your care journey with little to no warning or preparation. At its onset, you may have thought it a temporary situation, maybe a few weeks or months, perhaps a year. Or two. And then it stretches on, until a decade (or more) has passed and you're still caregiving. This is The Long Haul, and it's filled with its own set of challenges and concerns: emotional, physical, social, and financial.
Please join us for an enlightening discussion on the long-term impacts of caregiving with Jean Lee, (Alzheimer's Daughter), Loretta Woodward Veney (Becoming My Mom's Mom), Ann Campanella (Motherhood Lost and Found), and Dave Iverson (Winter Stars: An Elderly Mother, an Aging Son and Life’s Final Journey) on Tuesday, February 18th at 2 pm EST via Zoom.
Moderated by Marianne Sciucco and Christy Byrne Yates, this event will be recorded and published on our podcast and YouTube Channel on March 15th as part of Podcasthon, a global initiative of 1,500+ podcasts to raise awareness and funds benefiting just as many charitable organizations.
Potential topics:
The Emotional Toll: One of the most significant challenges faced by long-term dementia caregivers is the emotional toll. As the disease progresses, caregivers often witness the gradual decline of their loved one’s cognitive abilities and personality. This can lead to feelings of grief, loss, and despair. The constant stress and worry can also contribute to anxiety and depression. Caregivers may experience a range of complex emotions, such as guilt, anger, and resentment. These feelings can arise from the challenges of balancing caregiving responsibilities with other commitments, or from the frustration of dealing with behavioral changes associated with dementia.
The Physical Strain: Long-term dementia caregiving can also take a significant physical toll. Caregivers may find themselves constantly on call, sacrificing sleep and rest to attend to their loved one’s needs. This can lead to physical exhaustion, chronic pain, and weakened immune systems. Additionally, the physical demands of caregiving, such as lifting and transferring, can increase the risk of injury.
The Financial Burden: Financially, long-term dementia care can be overwhelming. The costs of in-home care, adult day care, or nursing home placement can quickly deplete savings and retirement funds. Caregivers may also face significant out-of-pocket expenses for medications, medical equipment, and home modifications.
Social Isolation: Caring for a loved one with dementia can lead to social isolation. Caregivers may find it difficult to maintain friendships and hobbies, as their time and energy are consumed by caregiving responsibilities. This isolation can exacerbate feelings of loneliness, stress, and depression.
Strategies for Coping: While the challenges of long-term dementia caregiving are significant, there are strategies that can help caregivers cope and maintain their well-being. The authors will share strategies that worked for them.
Meet the Panelists
Jean Lee Jean is the author of Alzheimer’s Daughter, her gripping memoir about caring for both parents with Alzheimer’s at the same time. After the publication of Alzheimer’s Daughter, Jean connected with other authors of Alzheimer’s books to co-found AlzAuthors.com. Growing from her years of teaching elementary school, Jean has also published three children’s books, Lexi’s Triplets, Lexi’s Litter of Three and Julia’s Journey to Her Forever Home about her grandchildren and their beloved pets. Learn more about Jean here.
Ann Campanella is the award-winning author of three memoirs and four poetry collections. Formerly a magazine and newspaper journalist, her writing has been published worldwide. Her memoir, Motherhood: Lost and Found, was named “One of the best Alzheimer’s books of all time” by BookAuthority two years in a row. Twice, Ann has received the Poet Laureate Award from the North Carolina Poetry Society. She has served on the AlzAuthors management team since 2017. Ann lives on the banks of Lake Norman in North Carolina and enjoys nightly sunsets with her husband. Learn more about Ann and her writing here. Learn more about Ann here.
Loretta Woodward Veney is an author and motivational speaker who has delivered more than 300 presentations on the topics of aging, caregiving, and dementia. She is the author of Becoming My Mom’s Mom, Refreshment for the Caregiver’s Spirit, and an intergenerational coloring book entitled Colors Flowing from My Mind. She may be best known for her work as a LEGO Ambassador, sharing her love of LEGOs as an engagement tool for those living with dementia. Learn more about Loretta here.
Dave Iverson is a writer, documentary film producer/director and retired broadcast journalist. When Dave was 59, he moved in with his 95-year old mom, Adelaide, when she could no longer care for herself. His memoir Winter Stars: An Elderly Mother, an Aging Son and Life’s Final Journey tells the story of the ten-year caregiving odyssey they shared, until her passing at the age of 105. He has produced and reported more than 20 documentary specials for PBS, including the Frontline film, “My Father, My Brother and Me” which explored his family saga with Parkinson’s disease. Dave hosted local PBS and NPR programs at Wisconsin Public Broadcasting and at KQED San Francisco, where he hosted the Friday edition of Forum for ten years. Dave is also a founding member of The Michael J. Fox Foundation’s Patient Council. His awards include a national Emmy, numerous regional Emmys and multiple film festival citations. Winter Stars is Dave’s first book. Learn more about Dave here.
Meet the Moderators
Additional Info
This virtual event is on Tuesday, February 18th at 2 pm EDT via Zoom. You will receive the link to the event the day before and a reminder will be sent that morning. The program will be recorded and added to our podcast and YouTube channel. The event is free, but donations are welcome. Click here to donate.
Registrants are allowed to ask questions ahead of the event. You may present your questions in the registration form.
Please contact AlzAuthors@gmail.com for more information.
How to Help
We want to fill the Zoom Room as we believe these inspirational stories have much to offer caregivers caught balancing dementia care and their relationships with their loved ones. Any assistance you can bring via your own network and platform is greatly appreciated. Please share our tweets and posts on social media as you see them, and pass this newsletter on to your own friends, family, and followers.
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2025 Books & Chit Chat, Podcasts, and AlzAuthors Live! Virtual Events
2/5 - NEW AUTHOR: Debra Hallissey, A Relationship Contract for Dementia Caregivers: Navigating the Complexities and Challenges of Caring for the Memory Impaired
2/18 - AlzAuthors Live! The Long Haul: The Impact of Long-Term Dementia Caregiving, a virtual Q&A with Jean Lee, Ann Campanella, Dave Iverson, and Loretta Woodward Veney
2/19 - Replay of Books & Chit Chat with Mary Crescenzo on podcast and YouTube
2/25 - Books & Chit Chat with Susan Landeis, In Search of Rainbows: a daughter’s story of loss, hope, and redemption, a caring for mother memoir
3/5 - NEW AUTHOR: Marilyn Raichle, Don’t Walk Away: A Care Partner’s Journey
3/15 - PODCASTHON: Replay of The Long Haul: The Impact of Long-Term Dementia Caregiving
3/19 - Replay of Books & Chit Chat with Susan Landeis on podcast and YouTube
3/25 - Books & Chit Chat with Debra Tann, Ed.D, The Race of Dementia, a caregiver guide
4/2 - NEW AUTHOR: David Bredbenner, Going Home,A Journey with Dementia
4/22 - Books & Chit Chat with Marita Golden. The Wide Circumference of Love, a novel
4/29 - AlzAuthors Live!: National Poetry Month Virtual Poetry Reading
5/7 - NEW AUTHOR: Carol Steinberg,Come Grandpa Meow, Let’s Fly
5/27 - Books & Chit Chat with Peter Berry and Deb Bunt, Slow Puncture: Living Well with Dementia, a memoir, and Walk With Me: Musing Through the Dementia Fog, poetry
6/4 - NEW AUTHOR: TBA
6/24 - Books & Chit Chat with Jean Lee, Alzheimer’s Daughter, a caring for two parents memoir
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Your Management Team
L to R: Vicki Tapia, Ann Campanella, Christy Byrne Yates,
Marianne Sciucco, Susan Landeis, and Jean Lee
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