Lewy Body and Mindful Caregiving
A weekly podcast hosted by Krystal Jakosky about caring for a loved one with Lewy Body Dementia, the disease her mother was diagnosed with in November 2023. Each episode shares her personal experience of the diagnosis, the daily challenges, and the emotional ups and downs of being a caregiver. She aims to raise awareness of what makes Lewy Body different from other dementias and to offer practical and emotional support to others in similar situations. The show also highlights the importance of humor and small moments of joy for mental health during a difficult illness. It is available as both audio and video.
Episodes
Projections and Assumptions
Just returned from a rejuvenating weekend away, and I'm here to dive deep into a topic that's been on my heart—projections and assumptions in caregiving. ✨ Join me as I unravel the emotions hidden beneath my mom's words, like her oft-repeated "you're so busy," which speaks volumes about her loneliness and desire for connection. In this episode, I'll sha
The Importance of Having a Medical Log
Today, I’m diving deep into the importance of maintaining a detailed medication log for our loved ones. Having juggled numerous meds for my mom, I've learned the hard way about the significance of recording not just the 'what,' but the 'why' of every shift. This log has become my lifesaver in tracking changes and managing side effects. Plus, always make
Navigating Holiday Traditions: Mindful Caregiving for Loved Ones with Dementia
In this heartwarming episode, I guide you through the holiday season, offering practical tips on balancing cherished traditions with mindful caregiving for your loved ones with dementia. Join me as we explore ways to honor and celebrate together while nurturing our own well-being, ensuring a joyful and peaceful holiday season for us all. Tune in for ins
Caregiving Lessons We Wish We Knew
In this heartfelt episode, I dive deep into the invaluable lessons and reflections shared by fellow caregivers on what they wish they'd known sooner. Join me as I explore the emotional nuances of caregiving, from self-care strategies to navigating the tough road of regrets and making peace with them. Let’s embrace this journey together and find joy amid
Honoring Her Wishes: A Journey Through Comfort and Care in Dementia
In this heartfelt episode of Lewy Body and Mindful Caregiving, I open up about the emotional and physical challenges of navigating my mom's declining health. From the guilt of missing a call in the night to honoring her wishes for comfort care, join me as I share the tough decisions and moments of self-care that define this caregiving journey. Your supp
Balancing Self-Care and Caregiving: The Lifeline of Asking for Help
I'm taking you on a deeply personal journey. Caring for my mom since 2018 has been both a blessing and a challenge, especially as her condition has evolved. This episode digs into my struggle with caregiver burnout, those sleepless nights worrying about her safety, and the emotional toll it took on me.
I open up about reaching a breaking point where I f
Emotional Check-In for Caregivers of Lewy Body Dementia
Today, I delve into the nuanced differences between "how are you doing?" and "how are you feeling?" This conversation is vital for caregivers like us who often mask our true emotions. But first, let's talk self-care. With the first snow here, I cozied up with a warm blanket, a book, and tea for half a day - a much-needed pause. Throughout this episode,
Coping with Hallucinations: Support for Dementia Caregivers
In this episode of Lewy Body and Mindful Caregiving, I delve into the world of hallucinations that accompany Lewy Body Dementia. Join me as I share personal insights on understanding and navigating these experiences, while offering heartfelt strategies to maintain peace and connection with our loved ones. Let's journey through this challenging path toge
56: The Emotions of Lewy Body
Join me on this week's episode of "Lewy Body and Mindful Caregiving" as I dive into the emotional landscape shaped by Lewy Body Dementia. I share personal insights from caring for my mom, whose emotions often mimic those of a child—joyful, sudden, raw. We'll explore managing these emotional waves and the crucial role of self-care in maintaining balance
55: Navigating Sleep Disturbances in Lewy Body Dementia
Join me, Krystal, as we delve into the world of Lewy body dementia and its ties to sleep disturbances. From night wanderings to sleep eating, I'm sharing practical tips to ensure both you and your loved one find a peaceful night’s rest. Learn from my own journey with my mom—a simple CPAP changed our lives. Remember, your self-care is just as crucial. Le
54: Your Unique Caregiving Journey: Embrace Your Path
In this episode of "Lewy Body and Mind for Caregiving," I open up about the deeply personal and unique journey of caregiving and the weight of making difficult decisions for our loved ones. I share how pottery has been my solace and self-care, a space where I can let go and create. We delve into the importance of personalized choices and understanding t
53: Embracing Lewy Body Dementia Medication
In today's episode of Lewy Body and Mindful Caregiving, I open up about the sensitive journey of embracing medications for loved ones with Lewy Body Dementia. While these meds don't cure the illness, they can enhance the quality of life by reducing symptoms like hallucinations and anxiety. I share personal experiences with my mom's care and the tough de
52: Trust the Evidence: Navigating Dementia's Subtle Shifts
This week on Lewy Body and Mindful Caregiving, I delve into the reality of watching a loved one with dementia and the importance of trusting tangible changes. From playing pickleball as a self-care practice to sharing insightful conversations with my sister, join me in uncovering how documenting those small, everyday changes can provide clarity and assu
51: Little Lies are Necessary
This week on Lewy Body and Mindful Caregiving, I'm sharing a heartfelt story about how little lies can bring big comfort to our loved ones with dementia. Join me as I explore the balance of honesty and empathy, and how a simple 'I understand' can transform confusion into peace. Let's navigate this journey with compassion and self-care.
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50: Navigating the Triggers Caused by Your Lewy Body Family Member
In this heartfelt episode of Lewy Body and Mindful Caregiving, I delve into the deeply personal and challenging experience of caregiving for a loved one with Lewy Body dementia. Often, past wounds resurface and our buttons are pushed in ways we never expected. But amidst it all, self-care is paramount. Join me as I share how I navigate these emotional l
49: Finding Companionship: A Key to Caregiver Self-Care
Today on Lewy Body and Mindful Caregiving, I’m sharing the importance of finding a companion for your loved one and how it ties into essential self-care. Join me as I discuss my personal journey of seeking support, not just for my mom, but for myself too. Let’s dive into practical strategies that can help you breathe a little easier and improve the qual
48: Self-Care is REQUIRED
In this episode of "Lewy Body and Mindful Caregiving," I delve into the critical importance of self-care. I'm Krystal Jakosky, your host, and today I share a personal journey emphasizing why self-care is not a luxury, but an absolute necessity. With a staggering statistic that 60% of caregivers pass away before their loved ones due to neglecting their o
47: Extending Life vs. Quality of Life
Today, I'm tackling an emotional topic: who are we really keeping our loved ones around for? I dive into the heart-wrenching decisions caregivers face, the balance between self-care and caregiving, and the importance of honoring the wishes of those we love. Plus, a personal story about my own mom's journey. Let’s navigate these challenging discussions t
46: Lewy Body Dementia and Anxiety
Hey there, listeners! Welcome back to another episode of 'Lewy Body and Mindful Caregiving.' I hope you're taking good care of yourself. Today, we're diving into the challenges of anxiety in Lewy body dementia, but first, let's talk about self-care. I recently went on an incredible, yet nerve-wracking, early morning hike with a friend. The trail was new
45: The Lewy Body Teenager
After our brief hiatus for some much-needed self-care, I'm excited to be back with you on Lewy Body and Mindful Caregiving. In this episode, I dive into my unique analogy comparing my mom to a teenager and how it perfectly illustrates the caregiving journey. Whether it's navigating their unpredictability or supporting their increasing needs, caregiving
44: We Are Taking a Break
As I share my experience of taking a much-needed break to focus on gratitude and relaxation, I invite you to also prioritize self-care and embrace moments of respite. Let's navigate the ups and downs of caregiving together, knowing that we are never alone in this challenging yet rewarding journey. Stay tuned for more insights and guidance when we return
43: Embracing The Four Agreements in Caregiving: Part 4 - Do Your Best
Tune in to this episode of Lewy Body and Mindful Caregiving, where I delve into the importance of always doing your best when caring for a loved one. Join me as I share my personal experiences, struggles, and triumphs in providing quality care while prioritizing self-care. Stay tuned and take care until next time.
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FIRST TIME HERE
42: Embracing The Four Agreements in Caregiving: Part 3 - Don't Make Assumptions
Join me in this powerful and eye-opening episode of Lewy Body and Mindful Caregiving, where we explore the transformative impact of the third agreement from Don Miguel Ruiz: "Don't Make Assumptions." Through personal stories and practical examples, learn how letting go of assumptions can bring clarity, understanding, and deeper connections in caregiving
41: Embracing The Four Agreements in Caregiving: Part 2 - Don't Take it Personal
Join me on the journey of compassionate caregiving as we explore the transformative power of not taking things personally. Discover how understanding and empathy can shift your perspective and bring peace to both you and your loved one.
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FIRST TIME HERE? Hey, there! I’m Krystal Jakosky - a teacher, writer, and transformational lif
40: Embracing The Four Agreements in Caregiving: Part 1 - Be Impeccable With Your Word
In this episode of Lewy Body and Mindful Caregiving, I delve into the transformative power of being impeccable with your word in caregiving. Join me as I share personal insights, practical tips, and heartwarming anecdotes that showcase the profound impact of honesty, compassion, and understanding in the caregiving journey. Tune in to learn how embracing
39: The Rollercoaster of Dementia
In this episode of Lewy Body and Mindful Caregiving we are digging deep into the dementia 'yo-yo'. Sharing my personal journey, I highlight the ups and downs of caring for a loved one with dementia, and shine a light on the importance of self-care amidst managing demanding responsibilities and the substantial role medications play in the lives of those
38: Balancing Roles: Being a Caregiver vs. Loved One
Join me on this episode of Lewy Body and Mindful Caregiving as we delve into the intricate balance between being a caregiver and a loved one for someone with dementia. Discover the importance of self-care, understanding your roles, and embracing emotional connections. Explore how wearing the caregiver hat and the loved one hat can bring harmony, energy,
37: Dementia Medication | Good, Bad and the Ugly
In this video we into the complex world of medications in dementia care, exploring the good, the bad, and the ugly. Join me as I share my personal experiences and invaluable insights on how to navigate the challenges of medications while providing mindful caregiving. Stay tuned for expert advice, touching stories, and practical tips on managing symptoms
36: How to Add Joy as a Caregiver
Balance, joy, and self-care amidst the overwhelming responsibilities of caregiving - This is Lewy Body and Mind: What Caregiving? I'm your host, Krystal Schakowsky, and in this intriguing episode, we dive into finding harmony amidst chaos by adding a dash of joy and fun to your life. Say "yes" to self-care, learn a new skill, maybe take up pickleball li
35: Palliative Care VS Hospice Care
This week we delves= into the crucial differences between palliative care and hospice care. Join her as she shares personal insights on navigating these care options and emphasizes the importance of self-care along the caregiving journey. Tune in to gain clarity on these essential topics and discover how to best support your loved ones. Stay informed an
34: Behind the Scenes | The Deep Struggles of a Dementia Caregiver
Dive deep into the heart of caregiving with us in this raw, emotional episode. Join me as I navigate the turbulent waters of providing care for someone with Lewy Body dementia, unmasking the unseen struggles and sharing the reality of how quickly things can shift. This intensely personal episode reveals the highs and lows, the strength, and struggles of
33: Debunking Dementia Myths: What You Need to Know
In today's episode of Lewy Body and Mindful Caregiving, I will be debunking common myths and sharing essential facts about dementia. Covering topics from self-care to the different types of dementia and common misconceptions around them, this episode is packed with crucial information to help you be a more informed and mindful caregiver. We also discuss
32: 10 Things to Know About Lewy Body Dementia
In this episode of Lewy Body and Mindful Caregiving, I dive deep into the intricacies of this often misunderstood form of dementia. From understanding the symptoms to navigating through treatment options, join me on this journey of knowledge and empowerment. Don't miss out on valuable insights and tips to help you and your loved ones through this journe
31: Final Comforts | End of Life Planning for Lewy Body Dementia
In this episode of Lewy Body and Mindful Caregiving, I delve deep into the often overlooked yet vital topic of end of life planning. With great passion and urge, I encourage everyone to make these life plans as early as possible - because passing can occur without warning, catching loved ones off guard.
Our discussion takes a closer look at 'big picture
30: The Slow Goodbye is a Blessing in Lewy Body Dementia
In this episode of Lewy Body and Mindful Caregiving, we discusses the concept of 'the long goodbye' in relation to caring for loved ones with forms of dementia. While it is undoubtedly a difficult journey, it also provides an opportunity to preserve shared experiences, record beloved phrases or conversations, and learn unique nuances of the person being
29: Lewy Body Dementia Caregiving Arc
Join me for the journey through the Caregiver Arc. Understand what the caregiver arc is, where you might be in it, and how it can manifest in anxiety, depression, and eventually proficient care. Learn about self-care strategies and the importance of looking after your own mental and physical health as you navigate your new role as a caregiver.
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28: The Paradox of Self-Care in Lewy Body Dementia Caregiving
In this episode of our podcast, we delve deep into the essential topic of self-care while navigating the challenges of Lewy Body Dementia caregiving. As a caregiver, I share my personal experiences, discussing the paradoxes of self-care and the importance of mindfulness, intention, and personal needs. Aiming to be both informative and supportive, this e
27: Family Gatherings with Dementia | A Survival Guide
In this episode shares intimate details of a recent family gathering planned to spend meaningful time with her mom who has been diagnosed with Lewy Body Dementia. Krystal explains how she navigated the gathering, ensuring her mom didn't get overstimulated, while also taking care of her own self. This episode illustrates the power of setting clear bounda
26: UPDATE: Mom's Lewy Body Status
Join me as I share the journey of my mother's struggle with Lewy Body Dementia. From moving her to Colorado in 2018 to her diagnosis, I've been her caregiver. On this episode, we discuss the challenges, changes, and lessons learned as her world continues to shrink in ways we never anticipated. The rollercoaster of life is relentless, but there's so much
25: Deflecting Negativity: Don't Take It Personally
When it comes to caregiving, it's essential not to take things personally, especially any criticism or judgment from outsiders who aren't familiar with the full context of your situation. While it's difficult to ignore the opinions of others, it's crucial to remember that such individuals often lack a comprehensive understanding of the caregiver's daily
24: Dealing with Self Judgement as a Caregiver
In the latest episode of my podcast, I delve into the complexities of processing emotional battles and self-care in the journey of caregiving. Join me as I confess my struggle with personal guilt and emotional upheaval while caring for my loved one. Learn how I navigated these choppy waters and discovered a profound understanding of love and compassion
23: From Frustration to Acceptance: It (Can) Take a Year
Join me for this episode that revolves around adjusting to the role of caregiving for a loved one with terminal illness. Just remember, the importance and necessity of practicing self-care during this process to avoid complete burnout. And remember when it comes to grief, allow yourself the necessary time, around a year, to adjust and process these subs
22: Navigating Parent-Child Role Reversal
Hello everyone, and welcome back to our podcast channel, Lewy Body and Mindful Caregiving. I am your host Krystal Jakosky. In this episode, we delve into the challenging dimensions of caregiving, mirroring self-awareness, and finding wisdom behind it all.
The message of this podcast is about the power of introspection, transformation, and healing while
21: Facing Caregiving Reality with Loved Ones
Hello and welcome back to Lewy Body and Mindful Caregiving. I'm your host, Krystal Jakosky, and in this episode, I share my recent self-care journey during a family vacation. Packed with activities and surrounded by loved ones, I decided to consciously set aside time for rest and self-nourishment, a decision that eventually led to me feeling rejuvenated
20: Decoding Dementia: Facing Grief & Embracing Acceptance
In this episode of Lewy Body and Mindful Caregiving, I delve into understanding acceptance, grief, and self-care amidst conflicts. I reveal why it's so challenging to sustain a state of acceptance and juxtapose this emotional state with grief; they are two sides of the same coin. From detailing daily life struggles to sharing common emotions such as ang
19: A Caregiving Conversation with my Counselor
In today's episode, we’re venturing into the often difficult but very necessary conversation about end-of-life care for our loved ones with dementia. We'll explore the tough decisions caregivers have to make, from defining comfort care to having those tough discussions with our loved ones, and even ourselves, about 'The End'. This is a very personal jou
18: Reflecting on End of Life Planning and Finding Peace
Welcome to another enlightening episode of Lewy Body and Mindful Caregiving, I am Krystal Jakosky, your guide through this journey of caring for a loved one with Lewy Body Dementia. Today, we delve into the importance of self-care, tough conversations, and the decisions that come with caregiving. I share my personal experiences and insights around exten
17: Unexpected Causes of Death in Lewy Body Dementia.
In this emotional roller-coaster of an episode, we navigate the turbulent journey of caregiving for a loved one with Lewy Body dementia. Sharing personal experiences, she explores the struggle to maintain her own identity while shouldering the overwhelming responsibility of caregiving. I opens up about my fears, frustrations, and the small victories tha
16: Unexpected Causes of Death in Lewy Body Dementia.
In this deeply personal episode of "Lewy Body and Mindful Caregiving", I tackle the realities and complexities of caring for my mom who is battling Lewy Body dementia. I take you on a journey that confronts the often-unspoken truth about managing the disease's decline and the unpredictability of what finally leads to the end of life.
I recount my strugg
15: Finding Joy Amid Caregiving
In this deeply personal episode of Lewy Body and Mindful Caregiving, I share my ongoing journey as a caregiver for my mother, who's battling Lewy Body dementia. I delve into the emotions, challenges, and unexpected gifts that this journey has brought me. I share my experience with self-care— getting lost in the world of the Highlander series— and how th
14: Finding Lewy Body Support Groups and Therapists
In this episode of Lewy Body and Mindful Caregiving, we emphasize the importance of self-care and developing a support system amidst the challenges of caregiving. I share my personal experiences seeking solace in pottery and establishing different support avenues like therapy, social media groups, and discussions with family and friends. Insightful and
13: Post Travel Insights
In this touching episode, I share a deeply personal account of a recent trip I undertook with my mother, who suffers from Lewy Body. I delve into the unique struggles of traveling with someone who requires special care; the highs and emotional lows, and the recognition of her decline. I also touch upon the importance of self-awareness, self-care, and ke
12: Navigating Travel with Dementia
In this heartfelt episode, I openly discuss the anxieties and preparations involved in planning a bucket-list trip to Switzerland for my mother who has Lewy Body dementia. I share insights on everything from ensuring a comfortable sleep environment and managing medications to meeting her daily needs and maintaining some semblances of her routine. At the
11: Dealing with the Darkness
In this episode we delve deep into the concept of embracing change. As your life coach and guide, I explore our innate tendency to resist change and challenge you to reframe this fear into an opportunity for growth. The key message of this episode is clear - change is not only inevitable but also essential for personal development. Through narratives, e
10: Looking to the Future
Join me in this riveting episode of Lewy Body and Mindful Caregiving. In this journey, we'll explore how stepping into a life coach's shoes can help shape your caregiving future. Are you seeking strength, balance, and resilience on your caregiving path? Are you eager to avoid future regrets and design a path you can look back on with satisfaction? It's
9: Navigating Relationships as a Caregiver
Join us in the latest episode of our life-affirming podcast, 'Lewy Body and Mindful Caregiving: Understanding the Changes in Your Relationships While Being a Caregiver'. In this heartfelt episode, our host, Krystal Jakosky, dives deep into how caregiving affects our relationships, reshaping friendships and widening our perspective of support systems. Li
8: Those Difficult Thoughts are NORMAL!
Hey there, it's Krystal Jakosky, your host of Lewy Body and Mindful Caregiving. In this episode, we're diving deep into the thoughts that often plague caregivers like ourselves. Those thoughts that make us feel like we're failing, like we're horrible people. But guess what? You're not an asshole, and I'm here to tell you why. We'll explore the challengi
07: Mom’s Symptoms and Challenges
Welcome back to another episode of Lewy Body and Mindful Caregiving. In this poignant episode, I, your host, Krystal Jakosky, discuss my personal journey caring for my mother who suffers from Lewy Body dementia. From recognizing initial symptoms, navigating doctor visits, to addressing the debilitating hallmarks of the condition that includes muscle rig
06: Being an Advocate
Tune in to our latest episode of Lewy Body and Mindful Caregiving where our host, Krystal Jakosky, continues her conversation on the importance of end-of-life documentation and the importance of advocating for your loved ones. Through her own personal experiences, Krystal emphasizes the necessity of being a firm advocate to ensure your loved one's wishe
05: End of Life Planning
Welcome to another episode of Lewy Body and Mindful Caregiving. In this episode, we delve into the critical yet often overlooked discussion about end of life documents. As a caregiver, I share personal experiences and insights regarding the preparations my loved ones made for their demise, recounting the peace and clarity it offered to everyone involved
04: Admitting I am a Caregiver
In this episode of Lewy Body and Mindful Caregiving, I embark on a journey of personal reflection, breaking down the stark reality of what it means to be a caregiver. Drawing from my personal experiences of caring for my mother, I delve into how I transitioned from seeing myself as 'just her daughter' to identifying as a caregiver. I'll explore the broa
03: Mom, Me and a Diagnosis
Welcome to another episode of Lewy Body and Mindful Caregiving. Join me on a beautiful journey filled with emotions, life lessons and the courage to face life's challenges. In today's episode, we delve deep into the story of my mother's declining health and the struggles of caregiving. From the joy of building a mother-in-law unit for my mother's comfor
02: A Caregivers Most Valuable Resource
In this episode, I delve deep into the true essence of caregiving, underscoring the immense value of self-care in this journey. I emphasize how, as caregivers for loved ones with Lewy Body dementia, we must prioritize our own well-being, otherwise we risk depleting our resources and our relationship with our cared ones could turn into resentment and fru
01: What is Lewy Body?
Welcome to the premiere episode of "Lewy Body and Mindful Caregiving." A heart wrenching yet inspiring podcast dedicated to sharing the life-altering journey of a caregiver. Our host, navigating the role of a caregiver to her mother diagnosed with Lewy Body dementia, serves as your guide through the ups and downs.
In this episode, we dive deep into unde
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