"I Didn't See It Coming" - Interview with LBD caregiver Mary Lou Falcone
Release Date: 11/05/2023
Can Improv Help Dementia Caregivers Survive?
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You know that caring for a loved one with Alzheimer's or other form of dementia can leave your mind confused, your body exhausted, and your spirit depressed. Yes, and what if I said there's something simple that might help you survive the caregiving journey? Yes, and what if I said this something is fun and free? I'm talking about improvisational theater, "improv" for short. Imagine a group of people on stage, making up a comedy skit as they go along. No experience required for what I'm suggesting in this episode. I've been talking with my nephew, Stephen Gillikin, co-founder of an...
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My Two Elaines - A Governor's Dementia Caregiving Memoir
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“None of the books I read conveyed the ugly truth about caregiving: that it can destroy you – even kill you – if you go about it wrong.” That's just a taste of the hard-hitting reality conveyed by author Martin (Marty) Schreiber in his memoir, "My Two Elaines." Elaine was Marty's highschool sweetheart and wife of 62 years when she died from Alzheimer's. As a former governor, Marty was prepared for the political responsibilities focused on leading the State of Wisconson. As a loving husband to a wife with Alzheimer's, he floundered. Marty talks bluntly about several aspects of...
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A Husband Videos His Dementia Caregiving Journey
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At part of their daughter's wedding ceremony, Heather was supposed to give their daughter a necklace that had once belonged to Heather's mother. Heather's husband, John, talks about what it was like when he and his daughter realized Heather had not brought the jewelry. "Our daughter actually took me aside before the ceremony and said, 'Dad, I've been wondering about something and I have to ask. Does mom just not care anymore or does she have dementia or something?'" In four short years, John Van Gurp watched his loving wife, Heather, fade from a beautiful, vibrant, creative, multi-tasker...
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Visited Mom Today - An Interview with Author John D. Scully
My Spouse Has Dementia
For 13 years, John Scully visited his mom in a nursing home. For the last 8 years of her life, she couldn’t talk. So he had other conversations. And they became a book. It’s called Visited Mom Today: Conversations Through the Lens of Alzheimer’s and Dementia. Mentioned in the podcast: - The website of author John D. Scully , a podcast that interviews authors of dementia caregiving memoirs.
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How Did I Survive? Truth, Strength, and Walter Cronkite
My Spouse Has Dementia
I grew up listening to Walter Cronkite. He signed off each nightly newscast with “And that’s the way it is.” As a kid, I was often alarmed by the news. But I reasoned that if Walter Cronkite respected me enough to tell me the truth, then I could handle it. Yes, my reasoning was flawed. Mr. Cronkite didn’t know me. In this episode, I share deeply personal stories from my childhood. That's when my first caregiving experience really began. Both of my parents had enough confidence in me to tell me the truth, even at five years old. Still, decades later, Mr. Cronkite's respect...
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The Caregiver You Love Needs Help!
My Spouse Has Dementia
This episode is a message for the caregiver to send to someone else, someone who doesn't know, or doesn't understand, the stress the caregiver is going through. I liken that stress to driving alone, in an old car, up a steep mountain on a narrow, twisting road with no place to pull off. There are no guardrails. The caregiver's spouse is at the top of that mountain, dying. I created this episode especially for the caregiver whose spouse has Alzheimer's or other form of dementia. While statistics vary, approximately 40% of family dementia caregivers die first -- meaning, the...
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Tall Ships and Facing Death - Victoria Burdick, Hospice Chaplain, Ret.
My Spouse Has Dementia
"Between now and dead, you've got a purpose. Don't be timid." Before she retired as a hospice chaplain, Reverend Victoria Burdick faced her own death several times. In her 30s while in divinity school, she wrote a series of essays she called "Lunch with Heron." In one of those essays, "The Tall Ships," she recounts the breast cancer diagnosis that led her to the Festival of the Tall Ships in Europe, and her harrowing ordeal crewing on a ship with a captain and crew who were rarely sober. One night, exhausted after an 18-hour shift at the helm, and weak from the cancer drugs she was...
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Anticipatory Healing - What Family Dementia Caregivers Need to Know to Survive
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You've probably heard of anticipatory grief. Unbidden, hidden, and immediate, it comes with the diagnosis that your loved one has Alzheimer's. Depending on when the diagnosis was delivered, it can be several years or more before your loved one dies. Something in addition to anticipatory grief can also happen along the way, especially in those devastating late years of the disease. I call it Anticipatory Healing. It's connected to grief. My husband had Alzheimer's. I'm publishing this episode on the second anniversary of his death. In these last two years, I've come to see my...
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Wandering and the Bring Me Back Home Program
My Spouse Has Dementia
For a person with Alzheimer's or other form of dementia, wandering can be dangerous. If that person isn't found within 24 hours, the chances that he or she will suffer serious injury, even death, increase dramatically. The family dementia caregiver will likely experience serious stress until the loved one is found. According to the Alzheimer's Association 6 in 10 people with dementia will wander. A person with dementia might lose the ability to recognize familiar places and faces. Losing that ability can happen at any stage of the disease. Connecticut has partnered with the Alzheimer's...
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The Dilemma of Dementia and Driving: Taking away the keys?
My Spouse Has Dementia
Your spouse has Alzheimer's. You know he - or she - shouldn't be driving. When you bring up the subject, you hear some version of, "That's ridiculous! I know how to drive a car." He might be right. He might still know how to drive a car. The problem is that he shouldn't be driving a car. No, this isn't a simple matter of semantics. Your spouse may still have the muscle memory to operate a motor vehicle. That doesn't mean he remembers the rules of the road. At some point, the muscle memory fades, too. Plus, medication may cloud both physical and mental functions. Getting your...
info_outlineMary Lou Falcone became a caregiver when her father had a massive stroke. She was 10 years old. The experience prepared her for the day, many years later, when her husband, illustrator and 1950s rocker Nicky Zann, was diagnosed with Lewy Body Dementia (LBD).
In her memoir, I Didn't See It Coming: Scenes of Love, Loss, and Lewy Body Dementia, Falcone talks about what it was like to have an international career, to be thought of in their social circles as "the golden couple," and then to face the cruel reality that the love of her life had an incurable, fatal disease.
Falcone talks candidly about three of the most challenging aspects of caring for a spouse with dementia, especially LBD: incontinence, violence, and hyper-sexuality.
She also shaes the challenges she faced in writing the memoir, particularly when her second editor guided her to reveal the deeply buried emotions that resulted in this personal and poignant story, a winner of the 2023 NYC Big Book Award "Distinguished Favorite" in the category of Caregiving.
Falcone also shares an overview of the differences between LBD and Alzheimer's Disease, why it can be difficult to get a diagnosis, and her ongoing work as an advocate for LBD awareness.
The interview portion of thie episode was originally recorded for a show on YouTube called "Page 1." Here's the link to see the video version of this podcast episode.
The video version on YouTube includes a PSA created to honor my husband's memory. In the PSA is a photo of me and my husband at a wedding reception in 2017. Several hours after that photo was taken, he was rushed by ambulance to the ER. He had choked on a piece of meat.
The PSA also includes a brief video I took one morning while my husband and I were hiking around a local reservoir.
For more info in Mary Lou Falcone and her book, see her website: MaryLouFalcone.com