My Spouse Has Dementia  By  cover art

My Spouse Has Dementia

By: Zita Christian
  • Summary

  • A free, bi-weekly podcast that uses personal stories, occasional interviews, and simple rituals to support dementia caregiving spouses
    Zita Christian 2024
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Episodes
  • Wandering and the Bring Me Back Home Program
    Jan 3 2024

    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

    Alzheimer's Association 

    Register to the Bring Me Back Home Program

    UPMC - Wandering Behavior: Individual Profile

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    23 mins
  • The Dilemma of Dementia and Driving: Taking away the keys?
    Nov 19 2023

    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. There's an article about that on MedicalNewsToday.com. 

    Not long ago, a personal injury law firm in West Virginia contacted me about a guide the firm had created titled "Dementia and Driving." 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. 

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    18 mins
  • "I Didn't See It Coming" - Interview with LBD caregiver Mary Lou Falcone
    Nov 5 2023

    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." 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  

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    30 mins

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From the heart

This podcast leaves me wanting to hear more. My husband also has Alzheimer’s. Listening to this journey resonates with me and comforts me. We’re not alone.

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