"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 taking, Victoria, mother of two young girls, came face-to-face with what was now an 8-week prognosis. Her self-determined transformation empowered her to survive. The day she pulled her rigging knife on the captain--the day she caught him molesting his young daughter-- confirmed the strength growing inside her.  Victoria is descended from seven generations of sailmakers, seafarers, and what she proudly terms "warf rats." Growing up on the water prepared her for the ordeal described in the book and movie "The Perfect Storm."  Yes, she, her father, and other members of her family's crew were on one of the ships caught in that storm.  It comes as no surprise that when faced with the diagnosis of cancer, she sought to do battle on the deck of a ship, a place where she had once before beaten death.  Victoria personifies courage and the determination to survive, two qualities needed by those of us caring for a loved one with Alzheimer's or other dementia.   The "Lunch with Heron" essays are not published. Victoria Burdick graciously agreed to share one of the essays here with the hope that her experience might inspire others. You can learn more about her and her work at her  website: <a href= "http://authenticceremony.com">AuthenticCeremony.com</a>

<description>&lt;p&gt;"Between now and dead, you've got a purpose. Don't be timid."&lt;/p&gt; &lt;p&gt;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. &lt;/p&gt; &lt;p&gt;One night, exhausted after an 18-hour shift at the helm, and weak from the cancer drugs she was taking, Victoria, mother of two young girls, came face-to-face with what was now an 8-week prognosis. Her self-determined transformation empowered her to survive. The day she pulled her rigging knife on the captain--the day she caught him molesting his young daughter-- confirmed the strength growing inside her. &lt;/p&gt; &lt;p&gt;Victoria is descended from seven generations of sailmakers, seafarers, and what she proudly terms "warf rats." Growing up on the water prepared her for the ordeal described in the book and movie "The Perfect Storm."  Yes, she, her father, and other members of her family's crew were on one of the ships caught in that storm. &lt;/p&gt; &lt;p&gt;It comes as no surprise that when faced with the diagnosis of cancer, she sought to do battle on the deck of a ship, a place where she had once before beaten death. &lt;/p&gt; &lt;p&gt;Victoria personifies courage and the determination to survive, two qualities needed by those of us caring for a loved one with Alzheimer's or other dementia.  &lt;/p&gt; &lt;p&gt;The "Lunch with Heron" essays are not published. Victoria Burdick graciously agreed to share one of the essays here with the hope that her experience might inspire others. You can learn more about her and her work at her  website: &lt;a href= "http://authenticceremony.com"&gt;AuthenticCeremony.com&lt;/a&gt; &lt;/p&gt;</description>

"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...

Tall Ships and Facing Death - Victoria Burdick, Hospice Chaplain, Ret.

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 grief in three stages:  <ol> <li>React:  This is the six-month, zombie-like period right after my husband died. I didn't have the mental energy to handle anything more than what was absolutely necessary -- the funeral, Social Security, insurance, probate, and more. I saw the fool's errand in all that wishful thinking I had indulged in when my husband was first diagnosed. I felt a new kind of empty. </li> <li>Realize:  Over the next year, the truth of my new reality settled on my shoulders. I had already absorbed all of the routine tasks my husband used to handle. That happened several years earlier. Now there was a finality to those tasks. I learned to carry grief without it closing my throat or stinging my eyes. I needed to think about my future...because now I realized I had a future. </li> <li>Reflect: I'm here now. Looking back, I can see how countless little visions of the future shaped the belief that I would survive. Those visions were not obvious! Some were born from frustration. Others from determination. Others from imagination. Hidden in those visions and experiences, I discovered inner strength. I learned to set wise priorities. I found joy, deep joy, in loving memories. I accepted my new life. In doing so, I anticipated that my heart would heal. </li> </ol>

<description>&lt;p&gt;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.&lt;/p&gt; &lt;p&gt;Something in addition to anticipatory grief &lt;strong&gt;can &lt;/strong&gt;also happen along the way, especially in those devastating late years of the disease. I call it &lt;strong&gt;Anticipatory Healing. It's connected to grief. &lt;/strong&gt;&lt;/p&gt; &lt;p&gt;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 grief in three stages: &lt;/p&gt; &lt;ol&gt; &lt;li&gt;&lt;strong&gt;React&lt;/strong&gt;:  This is the six-month, zombie-like period right after my husband died. I didn't have the mental energy to handle anything more than what was absolutely necessary -- the funeral, Social Security, insurance, probate, and more. I saw the fool's errand in all that wishful thinking I had indulged in when my husband was first diagnosed. I felt a new kind of empty. &lt;/li&gt; &lt;li&gt;&lt;strong&gt;Realize&lt;/strong&gt;:  Over the next year, the truth of my new reality settled on my shoulders. I had already absorbed all of the routine tasks my husband used to handle. That happened several years earlier. Now there was a finality to those tasks. I learned to carry grief without it closing my throat or stinging my eyes. I needed to think about my future...because now I realized I &lt;strong&gt;had&lt;/strong&gt; a future. &lt;/li&gt; &lt;li&gt;&lt;strong&gt;Reflect:&lt;/strong&gt; I'm here now. Looking back, I can see how countless little visions of the future shaped &lt;strong&gt;the belief that I would survive.&lt;/strong&gt; Those visions were not obvious! Some were born from frustration. Others from determination. Others from imagination. Hidden in those visions and experiences, I discovered inner strength. I learned to set wise priorities. I found joy, deep joy, in loving memories. I accepted my new life. In doing so, I anticipated that my heart would heal. &lt;/li&gt; &lt;/ol&gt;</description>

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....

Anticipatory Healing - What Family Dementia Caregivers Need to Know to Survive

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 Association to offer a state-wide registry to help police and first responders locate people with dementia who have wandered. The program is called "Bring Me Back Home."  When you register your loved one on the program, you'll be asked to complete a form. It asks for a lot of information. Even if you don't live in Connecticut, download the form. Pay attention to the information the authorities find helpful in finding a person who has wandered.  The Senior Services Department of UPMC (Universithy of Pittsburgh Medical Center) also has a form that can help first responders if your loved one has wandered. That form is called "Wandering Behavior: Individual Profile." You can download it for free, too.  If you're a family dementia caregiver and you're suddenly asked to provide information about your loved one, you might be under too much stress to remember everything in the moment. So download one, or both, of these forms. Start filling them out now. Have the information handy should you ever need it.    Mentioned in this episode:  <a href="https://www.alz.org">Alzheimer's Association</a>  <a href= "https://login.ct.gov/ctidentity/login?goto=https://bringmebackhome.ct.gov/Default.aspx"> Register to the Bring Me Back Home Program</a> <a href= "https://dam.upmc.com/-/media/upmc/services/seniors/resources-for-caregivers/documents/wandering-info-sheet.pdf?rev=2067db50cede4686a71c3c23cc92d249&hash=CEC1D4ED81FACC8D19173839B19DFE02"> UPMC - Wandering Behavior: Individual Profile</a>

<description>&lt;p&gt;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. &lt;/p&gt; &lt;p&gt;According to the Alzheimer's Association &lt;strong&gt;6 in 10 people with dementia will wander&lt;/strong&gt;. 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.&lt;/p&gt; &lt;p&gt;Connecticut has partnered with the Alzheimer's Association to offer a state-wide registry to help police and first responders locate people with dementia who have wandered. The program is called &lt;strong&gt;"Bring Me Back Home."&lt;/strong&gt; &lt;/p&gt; &lt;p&gt;When you register your loved one on the program, you'll be asked to complete a form. It asks for a lot of information. Even if you don't live in Connecticut, download the form. Pay attention to the information the authorities find helpful in finding a person who has wandered. &lt;/p&gt; &lt;p&gt;The Senior Services Department of UPMC (Universithy of Pittsburgh Medical Center) also has a form that can help first responders if your loved one has wandered. That form is called &lt;strong&gt;"Wandering Behavior: Individual Profile."&lt;/strong&gt; You can download it for free, too. &lt;/p&gt; &lt;p&gt;If you're a family dementia caregiver and you're suddenly asked to provide information about your loved one, you might be under too much stress to remember everything in the moment. So download one, or both, of these forms. Start filling them out now. Have the information handy should you ever need it. &lt;/p&gt; &lt;p&gt; &lt;/p&gt; &lt;p&gt;&lt;strong&gt;Mentioned in this episode&lt;/strong&gt;: &lt;/p&gt; &lt;p&gt;&lt;a href="https://www.alz.org"&gt;Alzheimer's Association&lt;/a&gt; &lt;/p&gt; &lt;p&gt;&lt;a href= "https://login.ct.gov/ctidentity/login?goto=https://bringmebackhome.ct.gov/Default.aspx"&gt; Register to the Bring Me Back Home Program&lt;/a&gt;&lt;/p&gt; &lt;p&gt;&lt;a href= "https://dam.upmc.com/-/media/upmc/services/seniors/resources-for-caregivers/documents/wandering-info-sheet.pdf?rev=2067db50cede4686a71c3c23cc92d249&amp;hash=CEC1D4ED81FACC8D19173839B19DFE02"&gt; UPMC - Wandering Behavior: Individual Profile&lt;/a&gt;&lt;/p&gt;</description>

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...

Wandering and the Bring Me Back Home Program

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 spouse to give up the car keys is traumatic for both of you. For weeks, my husband stood at the window and stared at the spot where his car used to be. I watched from the kitchen, knowing we were both at the threshold of a major change in the progression of the disease.  In this episode, I share some of my own stories, as well as those of my friends.  Some states require that when a doctor diagnoses dementia, the doctor must report the diagnosis to the state's department of motor vehicles. <a title="MedicalNewsToday.com" href= "https://www.medicalnewstoday.com/articles/dementia-drivers-license-revoked"> There's an article about that on MedicalNewsToday.com. </a> Not long ago, a personal injury law firm in West Virginia contacted me about a guide the firm had created titled <a title= "Warner Law Offices guide "Dementia and Driving"" href= "https://www.wvpersonalinjury.com/dementia-and-driving/">"Dementia and Driving."</a> The guide talks about when a person should stop driving. It gives a list of things to watch for and includes additional links you might find helpful.   Alzheimer's robs a person of so much. When it comes to driving, you might feel that you're robbing your loved one of even more. It all comes down to your need to be observant, patient, realistic, kind, brave, and responsible. There's so much at stake.

<description>&lt;p&gt;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." &lt;/p&gt; &lt;p&gt;He might be right. He might still know how to drive a car. The problem is that he shouldn't be driving a car. &lt;/p&gt; &lt;p&gt;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. &lt;/p&gt; &lt;p&gt;Getting your spouse to give up the car keys is traumatic for both of you. For weeks, my husband stood at the window and stared at the spot where his car used to be. I watched from the kitchen, knowing we were both at the threshold of a major change in the progression of the disease. &lt;/p&gt; &lt;p&gt;In this episode, I share some of my own stories, as well as those of my friends. &lt;/p&gt; &lt;p&gt;Some states require that when a doctor diagnoses dementia, the doctor must report the diagnosis to the state's department of motor vehicles. &lt;a title="MedicalNewsToday.com" href= "https://www.medicalnewstoday.com/articles/dementia-drivers-license-revoked"&gt; There's an article about that on MedicalNewsToday.com. &lt;/a&gt;&lt;/p&gt; &lt;p&gt;Not long ago, a personal injury law firm in West Virginia contacted me about a guide the firm had created titled &lt;a title= "Warner Law Offices guide "Dementia and Driving"" href= "https://www.wvpersonalinjury.com/dementia-and-driving/"&gt;"Dementia and Driving."&lt;/a&gt; The guide talks about when a person should stop driving. It gives a list of things to watch for and includes additional links you might find helpful.  &lt;/p&gt; &lt;p&gt;Alzheimer's robs a person of so much. When it comes to driving, you might feel that you're robbing your loved one of even more. It all comes down to your need to be observant, patient, realistic, kind, brave, and responsible.&lt;/p&gt; &lt;p&gt;There's so much at stake. &lt;/p&gt;</description>

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...

The Dilemma of Dementia and Driving: Taking away the keys?

Mary 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." <a href= "https://www.youtube.com/watch?v=MitvbI53eLk&t=152s">Here's the link</a> 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: <a href= "https:maryloufalcone.com">MaryLouFalcone.com</a>

<description>&lt;p&gt;&lt;strong&gt;Mary Lou Falcone&lt;/strong&gt; 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 &lt;strong&gt;Nicky Zann&lt;/strong&gt;, was diagnosed with &lt;strong&gt;Lewy Body Dementia&lt;/strong&gt; (LBD). &lt;/p&gt; &lt;p&gt;In her memoir, &lt;strong&gt;&lt;em&gt;I Didn't See It Coming: Scenes of Love, Loss, and Lewy Body Dementia&lt;/em&gt;&lt;/strong&gt;, 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.  &lt;/p&gt; &lt;p&gt;Falcone talks candidly about three of the most challenging aspects of caring for a spouse with dementia, especially LBD: &lt;strong&gt;incontinence, violence, and hyper-sexuality&lt;/strong&gt;. &lt;/p&gt; &lt;p&gt;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 &lt;strong&gt;2023 NYC Big Book Award "Distinguished Favorite" in the category of Caregiving. &lt;/strong&gt;&lt;/p&gt; &lt;p&gt;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. &lt;/p&gt; &lt;p&gt;The interview portion of thie episode was originally recorded for a show on YouTube called "Page 1." &lt;a href= "https://www.youtube.com/watch?v=MitvbI53eLk&amp;t=152s"&gt;Here's the link&lt;/a&gt; to see the &lt;strong&gt;video version&lt;/strong&gt; of this podcast episode. &lt;/p&gt; &lt;p&gt;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. &lt;/p&gt; &lt;p&gt;The PSA also includes a brief video I took one morning while my husband and I were hiking around a local reservoir. &lt;/p&gt; &lt;p&gt;For more info in Mary Lou Falcone and her book, see her website: &lt;a href= "https:maryloufalcone.com"&gt;MaryLouFalcone.com&lt;/a&gt;  &lt;/p&gt;</description>

Mary 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...

"I Didn't See It Coming" - Interview with LBD caregiver Mary Lou Falcone

A free, bi-weekly podcast that uses personal stories, occasional interviews, and simple rituals to support dementia caregiving spouses

My Spouse Has Dementia

Details

Recent Episodes