A Journey of Resilience: Navigating Parkinson's Through Caregiving and Advocacy

Caring for a loved one diagnosed with Parkinson's disease is a journey filled with challenges, emotional upheaval, and moments of profound resilience. This week’s episode delves into the transformative experience of caregiving, advocacy, and personal growth, as illustrated through the story of George Ackerman, a son who navigated his mother's 15-year battle with Parkinson's. From the complexities of the disease to the inspiring legacy left behind, let’s explore the intricate layers of this journey and the call to action it inspires.

Understanding Parkinson's and the Role of Caregivers

Parkinson's disease is a complex neurodegenerative disorder that affects millions of individuals worldwide. Characterized by symptoms such as tremors, rigidity, and balance issues, the disease can vary significantly in its progression and impact on individuals. For caregivers, this means adapting to an ever-changing landscape of needs and challenges. In this journey, the role of a caregiver is both vital and multifaceted, encompassing medical advocacy, emotional support, and the day-to-day management of symptoms.

One of the most poignant aspects of caregiving is the emotional toll it can take. Witnessing a loved one's decline, particularly when faced with delusions and hallucinations, requires immense resilience and compassion. It is a testament to the strength required to navigate such unpredictable terrain while maintaining a sense of hope and determination. Through shared experiences, caregivers can find solace in the knowledge that they are not alone, and that their efforts are crucial in supporting both their loved ones and the broader Parkinson's community.

Transforming Personal Loss into Advocacy and Hope

The journey of caregiving often culminates in a profound sense of loss, as caregivers grapple with the grief of losing a loved one to Parkinson's. However, this loss can also serve as a powerful catalyst for change and advocacy. In honoring the legacy of those who have battled the disease, caregivers can channel their experiences into raising awareness and promoting understanding.

Creating symbols of unity, such as the wristbands George created in memory of his mother, can serve as a tangible reminder of the shared struggle and the collective efforts needed to combat Parkinson's. These initiatives not only commemorate the lives of those lost but also galvanize communities to join the fight against the disease. Public figures like Michael J. Fox have played a pivotal role in amplifying the message of Parkinson's advocacy, demonstrating the impact that personal stories and public awareness can have in driving legislative and social change.

Balancing advocacy with personal life is another significant challenge faced by caregivers. The dedication to raising awareness and supporting research can often feel overwhelming, yet it is essential in keeping the conversation alive and fostering a sense of community among those affected by Parkinson's. By turning personal loss into a beacon of hope and action, caregivers can inspire others to join the movement for a cure.

The Power of Storytelling in Educating and Inspiring Change

Sharing personal stories through mediums like books and podcasts can be an effective way to educate others about the realities of Parkinson's disease and the caregiving journey. These narratives offer invaluable insights into the emotional and practical aspects of caregiving, providing a voice to those who may feel isolated or misunderstood.

For some, writing a book – such as George’s "A Son's Journey" – allows caregivers to preserve cherished memories and document the complexities of their experiences. It also highlights the importance of storytelling in raising awareness and fostering empathy. By capturing moments of joy and struggle, these stories serve as a testament to the enduring bond between caregivers and their loved ones.

Educating specific groups, such as law enforcement, about the symptoms of Parkinson's can lead to greater understanding and improved interactions with individuals affected by the disease. Misunderstandings can arise from symptoms like tremors or slurred speech, which may be mistaken for intoxication. Through targeted educational initiatives, caregivers can contribute to a more informed and compassionate society.

The journey of caregiving for someone with Parkinson's is both challenging and rewarding. It is a journey that requires resilience, empathy, and a commitment to advocacy. By sharing their stories and experiences, caregivers can inspire change, foster community, and keep the fight against Parkinson's alive.

As we continue to navigate this journey, it is crucial to remember the importance of self-care and the support of the broader community. Together, we can transform personal loss into a powerful call for action, ensuring that the legacy of those we have lost continues to inspire hope and drive progress in the fight against Parkinson's disease.

Remember to take care of yourself as a caregiver - take time each week (even for an hour) for “me” time so that you can better care for your loved ones!

Have you been looking for professional advice to cut through the enormous amount of information around senior placement or the correct type of caregiving for your parents, spouse, or yourself? Book a time with me for a complimentary consultation. Please find out more by booking your introductory call or by calling me directly at 503.830.1812

Embracing the GEMS Model to Transform Your Dementia Care Strategies

Dementia caregiving presents unique challenges, demanding not just patience but also a compassionate understanding of the cognitive shifts that individuals experience. A groundbreaking approach to this complex journey is the GEMS model, which emphasizes recognizing and valuing the abilities of those with dementia rather than focusing on their decline. This model likens cognitive states to gemstones, each representing different levels of brain function and abilities. By adopting this approach, caregivers can foster more compassionate and positive relationships, ultimately enhancing the quality of life for both the caregiver and the individual with dementia.

Understanding the GEMS Model

The GEMS model offers a fresh perspective by categorizing different cognitive states as gemstones, such as "sapphire" for flexibility and "pearl" for rest and recovery. Unlike traditional models that focus on the deterioration of abilities, this approach emphasizes what individuals can still achieve, encouraging caregivers to adapt their expectations and maintain meaningful connections. This paradigm shift allows caregivers to focus on strengths rather than limitations, providing a hopeful framework for navigating the unpredictable journey of dementia.

By recognizing the enduring opinions and dignity of those with dementia, caregivers can foster more respectful and effective relationships. This model encourages caregivers to look beyond conventional caregiving tasks and instead prioritize maintaining relationships, even in the face of challenging behaviors. By focusing on the abilities that remain, caregivers can create an environment where individuals with dementia can shine, fostering a sense of respect and dignity.

Practical Strategies for Compassionate Care

A key aspect of the GEMS model is its practical application in addressing challenging behaviors and communication needs. For instance, using visual cues and gentle guidance can help caregivers navigate situations where individuals with dementia struggle to express their needs or emotions. This approach not only minimizes frustration but also fosters better communication and care.

Caregivers are encouraged to recognize when someone is in an "emerald" or "amber" state, where communication abilities may be limited. By being patient, flexible, and curious, caregivers can provide the right support at the right time, ensuring the well-being of both the individual with dementia and themselves. This understanding is crucial in maintaining positive relationships and avoiding caregiver burnout.

Moreover, the GEMS model underscores the importance of letting go of certain expectations. Caregivers are encouraged to focus on what can be achieved rather than dwelling on what is lost. For example, if an individual resists taking a shower due to sensory overload, caregivers can explore alternative methods to maintain hygiene. This flexibility not only respects the preferences of the individual but also reduces stress for both parties.

The model also emphasizes the importance of fostering a positive environment. This can include creating spaces that are both safe and stimulating, allowing individuals to engage with their surroundings in meaningful ways. By doing so, caregivers can help individuals with dementia maintain a sense of purpose and fulfillment.

Building Connections Beyond Caregiving

The insights from the GEMS model extend beyond dementia care, offering valuable lessons for broader human interactions. By emphasizing empathy, understanding, and flexibility, caregivers can apply these principles in various relationships. The model draws intriguing parallels between dementia care and parenting, highlighting the importance of compassion and skill-building to navigate challenging situations.

The journey through different cognitive states also serves as a reminder for caregivers to acknowledge their own needs. Recognizing when to take breaks and maintaining a balance is crucial in preventing burnout and ensuring the sustainability of caregiving efforts. By caring for themselves, caregivers are better equipped to provide effective and compassionate care.

Additionally, the GEMS model introduces valuable resources such as the Gems Workbook, which offers guidance for navigating the caregiving journey. This resource equips caregivers with the tools needed to understand and support those with dementia, fostering a more informed and prepared approach to caregiving.

The GEMS model revolutionizes dementia care by shifting the focus from decline to abilities, offering caregivers a transformative framework for compassionate care. By recognizing the unique strengths of individuals with dementia, caregivers can build more positive and respectful relationships, ultimately enhancing the caregiving experience. This approach not only benefits individuals with dementia but also enriches the broader spectrum of human interactions, emphasizing the power of empathy and understanding. The model invites a reevaluation of caregiving roles, encouraging a shift towards a more supportive and nurturing environment for everyone involved.

Remember to take care of yourself as a caregiver - take time each week (even for an hour) for “me” time so that you can better care for your loved ones!

Have you been looking for professional advice to cut through the enormous amount of information around senior placement or the correct type of caregiving for your parents, spouse, or yourself? Book a time with me for a complimentary consultation. Please find out more by booking your introductory call or by calling me directly at 503.830.1812

The Unexpected Benefits of Assisted Living for Aging Parents

As our parents age, one of the biggest concerns we often face is ensuring their well-being while maintaining their independence. Contrary to popular belief, assisted living communities can be a powerful ally in achieving this balance. These communities are not about restricting freedom; rather, they are designed to foster an active, engaged lifestyle for seniors. Let’s explore the surprising benefits of assisted living, how it empowers aging parents, and the essential role of self-care for caregivers.

Shattering Myths: Assisted Living Promotes Independence

Many people mistakenly believe that moving into an assisted living facility means relinquishing independence. However, the reality is quite the opposite. Assisted living communities are structured to support seniors in maintaining as much independence as possible. They offer assistance with daily activities such as dressing, bathing, eating, and medication management. This ensures that seniors receive the care they need while still participating in various social and recreational activities. From book clubs to movie nights, and scenic tours to swimming classes, assisted living communities provide a vibrant social environment that promotes both independence and quality of life.

The design of these communities also includes a critical safety net: 24-hour medical assistance. In the event of a fall or medical emergency, help is just minutes away. This rapid response not only protects physical health but also alleviates emotional stress, providing peace of mind for both seniors and their families. Furthermore, the availability of nutritious meal plans and exercise programs encourages a healthy lifestyle, contributing to better overall well-being.

The Financial and Emotional Advantages of Assisted Living

For seniors who have experienced falls or other health issues, assisted living communities offer a comprehensive solution. The built-in social network and comprehensive care reduce the risk of severe health declines due to falls, and provide an environment where seniors can thrive rather than simply survive. The presence of a community helps to combat isolation, which studies have shown can have significant negative impacts on health.

Financially, assisted living can also be more cost-effective than maintaining a home. While it might seem expensive at first glance, when you consider the costs of home maintenance, utilities, and in-home care, assisted living often comes out ahead. The all-inclusive nature of these communities means that everything from meals to healthcare is bundled into one predictable monthly fee, providing both financial savings and emotional benefits.

Additionally, the move to assisted living can actually lead to improvements in health and independence. Many seniors who initially require higher levels of care experience a revitalization once they are part of a community. The support and social interaction available can lead to better health outcomes, and in some cases, seniors have even moved from assisted living back to independent living. The transition also allows for a more personalized approach to care, as staff can tailor support to each resident’s unique needs and preferences.

Supporting Caregivers: The Importance of Self-Care

While the benefits of assisted living for seniors are significant, it’s equally important to recognize the impact on caregivers. Taking care of aging parents can be physically and emotionally taxing, and caregivers often neglect their own well-being in the process. Prioritizing self-care is essential for caregivers to provide the best possible care for their loved ones.

Finding resources and support is crucial. Connecting with a senior advisor can provide valuable guidance and support, helping caregivers navigate the complex landscape of senior care options. It's also important for caregivers to take regular breaks and ensure they have time to recharge, allowing them to maintain their own health and well-being. Engaging in activities they enjoy and seeking emotional support from friends or professional counselors can significantly enhance their resilience.

Assisted living communities offer a wealth of benefits that can enhance the independence and quality of life for aging parents. By providing comprehensive care and a supportive social environment, these communities not only promote independence but also offer financial and emotional advantages. For caregivers, recognizing the importance of-care and seeking support can make a significant difference in their ability to care for their loved ones effectively. Embracing assisted living as a positive step rather than a last resort can lead to a more fulfilling and balanced life for both seniors and their families.

Remember to take care of yourself as a caregiver - take time each week (even for an hour) for “me” time so that you can better care for your loved ones!
Have you been looking for professional advice to cut through the enormous amount of information around senior placement or the correct type of caregiving for your parents, spouse, or yourself? Book a time with me for a complimentary consultation. Please find out more by booking your introductory call or by calling me directly at 503.830.1812

Mastering the Art of Caregiving: Practical Strategies for Caring for Aging Parents

Caring for aging parents can be a daunting and emotionally taxing experience. However, with the right strategies and insights, it's possible to provide exceptional care while maintaining your own well-being. This comprehensive guide offers practical advice on managing finances, ensuring quality care, and building a reliable caregiving team, drawing on the wealth of experience shared by seasoned caregivers.

Navigating Financial Challenges and Compensation

One of the most pressing concerns for family caregivers is how to get compensated for their time and effort. It's essential to explore various compensation options, including Medicaid qualifications, long-term care insurance, and even obtaining a Certified Nursing Assistant (CNA) certification. Open communication with your parents about financial arrangements is crucial, especially if you consider quitting your job to provide full-time care.

Understanding Medicaid qualifications can be particularly beneficial. Each state has its own procedural requirements, and you'll need to submit specific forms to your state Medicaid agency. It's also important to note that Social Security does not cover caregiving services directly, so any payments would come from your parent's account.

Additionally, maintaining a simple yet effective system for tracking caregiver hours can streamline the compensation process. A straightforward log, detailing the days, times, and tasks performed, can serve as invaluable documentation for Medicaid and long-term care insurance claims.

Building a Reliable Caregiving Team

Managing a caregiving team is no small feat, especially when dealing with the high emotional and physical demands of caring for aging parents. Identifying the right individuals to join your team is crucial. Look for people who have some experience in caregiving, whether it's from taking care of a family member or through professional experience. Essential characteristics include a compassionate heart, common sense, and the ability to handle personal care tasks without hesitation.

High staff turnover is a significant pitfall in caregiving, so it's vital to create a stable and reliable team. Hiring a lead aide can help maintain accountability and ensure consistent care. This lead aide acts as the point person, managing other aides and serving as the primary contact for any issues that arise. This structure can significantly reduce the stress of managing multiple caregivers and ensure that your parents receive continuous, high-quality care.

When hiring aides, consider conducting background checks and interviews, both in person and over the phone. Trust is paramount, so it's essential to feel confident in the capabilities and integrity of each team member. If an aide doesn't meet your standards, don't hesitate to make changes quickly. Quality care should always be the top priority.

Balancing Caregiving Responsibilities and Personal Boundaries

Balancing caregiving responsibilities with personal life can be incredibly challenging. It's essential to set clear boundaries to avoid emotional and social isolation. Caregiving can be an all-consuming role, but it's crucial to take time for yourself to maintain your mental and physical health.

One effective strategy is to keep a detailed journal of daily activities and care tasks. This documentation can help you stay organized and provide a clear picture of your caregiving efforts, which can be particularly useful if you need to justify your work to other family members or Medicaid agencies. It also serves as a personal record, helping you reflect on your caregiving journey and identify areas where you might need additional support.

If you're managing caregiving from a distance, having a lead aide who can handle day-to-day responsibilities is invaluable. This person can provide regular updates and ensure that everything runs smoothly in your absence. Additionally, consider leveraging technology, such as video calls, to stay connected and monitor your parents' well-being.

It's also important to recognize when professional help is needed. While personal care often involves deeper emotional connections, it can also be more challenging. Hiring aides directly, rather than through an agency, can offer more control and consistency. However, it's essential to weigh the benefits and drawbacks and make decisions that best suit your family's needs.

Practical Tips for Effective Caregiving

Communication is key: Maintain open lines of communication with your parents about their care needs and financial arrangements. This transparency can prevent misunderstandings and ensure that everyone is on the same page.

Documentation: Keep detailed records of all caregiving activities, hours worked, and any changes in your parents' condition. This documentation is crucial for compensation claims and provides a clear picture of your caregiving efforts.

Build a strong team: Hire individuals who are not only qualified but also compassionate and reliable. A stable caregiving team can significantly enhance the quality of care your parents receive.

Set boundaries: Protect your mental and physical health by setting clear boundaries. Take time for yourself and don't hesitate to seek professional help when needed.

Stay informed: Educate yourself about Medicaid qualifications, long-term care insurance, and other financial assistance options. Understanding these can help you navigate the financial aspects of caregiving more effectively.

By following these practical strategies, you can provide exceptional care for your aging parents while maintaining your own well-being. Remember, caregiving is a challenging but rewarding journey, and with the right tools and support, you can navigate it with wisdom and heart.

Remember to take care of yourself as a caregiver - take time each week (even for an hour) for “me” time so that you can better care for your loved ones!

Have you been looking for professional advice to cut through the enormous amount of information around senior placement or the correct type of caregiving for your parents, spouse, or yourself? Book a time with me for a complimentary consultation. Please find out more by booking your introductory call or by calling me directly at 503.830.1812

Overcoming Loneliness with Aging Parents

In today's fast-paced world, it's easy to overlook the silent epidemic of senior loneliness. As families become more geographically dispersed and the demands of daily life increase, many elderly individuals find themselves isolated, leading to severe emotional and health consequences. Let’s take a look at strategies for fostering meaningful connections with aging parents, aiming to improve their well-being and enrich family bonds.

Recognizing the Signs of Loneliness in Seniors

Senior loneliness is more than just a temporary state of sadness; it's a pervasive condition that can have significant health implications. Studies show that loneliness increases the risk of premature death, hospitalization, dementia, and heart disease. Recognizing the signs of loneliness is crucial for early intervention and support.

To identify loneliness, one must first foster a genuine curiosity about the senior's life and experiences. Engaging in regular conversations and showing interest in their personal stories can reveal changes in behavior or mood that might indicate isolation. Empathizing with their situation—imagining spending most of your day alone with only the television for company—can provide insight into their feelings of boredom or loneliness.

Creating an environment where seniors feel comfortable expressing their emotions is essential. Encourage them to share their experiences and listen actively. Often, seniors may not express their loneliness directly, fearing they might burden their family members. However, by showing a sincere interest in their lives and establishing a strong foundation of trust, they may become more open to discussing their feelings.

Navigating Sensitive Conversations About Loneliness

Approaching conversations about loneliness with aging parents requires sensitivity and tact. Establishing a routine of casual, daily interactions—whether through phone calls, texts, or visits—can help build the necessary trust for more profound discussions. These interactions not only provide companionship but also pave the way for addressing more serious topics naturally.

When initiating conversations about loneliness, it's essential to approach the subject with empathy and humor. Reminiscing about shared experiences can serve as an effective icebreaker, creating a comfortable atmosphere for deeper discussions. Acknowledging the role reversal, where adult children now support their parents through life's transitions, can also help in framing these conversations sensitively.

Encouraging seniors to reflect on their life stories and experiences can be a valuable tool in combating loneliness. This not only allows them to share their legacy but also reinforces their sense of purpose and value. Ensuring that these stories are preserved is crucial, as they hold the essence of family history and connections.

Preserving Memories and Strengthening Bonds

One of the most significant aspects of connecting with aging parents is preserving family stories and memories. These narratives provide a sense of identity and continuity for both the storyteller and the listener. Engaging seniors in conversations about their past can evoke feelings of joy and nostalgia, strengthening emotional bonds and alleviating feelings of isolation.

In addition to personal interactions, leveraging resources designed to combat senior loneliness can be highly beneficial. Programs that offer companionship and activities can significantly enhance seniors' quality of life. By participating in classes or activities, seniors can continue learning and connecting with others, reinforcing their sense of belonging and purpose.

Creating opportunities for seniors to share their knowledge and experiences can be a powerful antidote to loneliness. Encourage them to become the hero of their own stories, and facilitate platforms where they can pass down their wisdom and insights. This not only helps in preserving valuable family history but also empowers seniors, reinforcing their importance within the family and community.

Furthermore, the role of technology should not be underestimated in bridging the gap between generations. Simple tech devices can help seniors stay connected with loved ones who live far away. Video calls, social media, and online communities offer a sense of participation and presence, even when physical visits are not possible. Assisting seniors in becoming familiar with these tools can open new avenues for interaction and engagement.

Additionally, community initiatives such as intergenerational programs, where younger individuals visit or interact with seniors, can play a significant role in alleviating loneliness. These programs foster mutual learning and understanding, breaking down stereotypes and building friendships that benefit both parties. Schools and community centers can facilitate these interactions, creating a vibrant community fabric where every member feels valued.

Senior loneliness is a pressing issue that requires attention and action from family members. By recognizing the signs of loneliness, engaging in meaningful conversations, and preserving cherished memories, we bridge the gap with our aging parents. These efforts not only enhance the well-being of seniors but also enrich the lives of family members, creating lasting connections that transcend generations. Through empathy, curiosity, and engagement, we can combat senior loneliness and ensure that our loved ones feel valued and connected. By embracing both traditional and modern means of communication and support, we can create a more inclusive and compassionate society for our elders.

Remember to take care of yourself as a caregiver - take time each week (even for an hour) for “me” time so that you can better care for your loved ones!

Have you been looking for professional advice to cut through the enormous amount of information around senior placement or the correct type of caregiving for your parents, spouse, or yourself? Book a time with me for a complimentary consultation. Please find out more by booking your introductory call or by calling me directly at 503.830.1812

The Unforgettable Gift of Love Letters

In a world that moves at breakneck speed, it's easy to lose sight of the stories that make up our very essence. Our family legacies, rich with history, values, and wisdom, are narratives that should not be allowed to fade into the oblivion of time. One compelling way to capture these invaluable narratives is through the timeless tradition of love letters. This practice not only holds the power to bridge generational gaps but also serves as a poignant testament to the lives and experiences of our loved ones.

The Emotional Impact of Handwritten Letters

There's an undeniable charm and intimacy to the written word, especially when it is handwritten. In an age where digital communication reigns supreme, a handwritten letter stands out as a relic of personal touch. These letters are tangible pieces of our history, infused with emotions and a sense of permanence that digital formats often lack. Holding a letter, knowing it was touched and signed by a relative, perhaps from a bygone era, fosters a connection that transcends time and space.

Moreover, the act of writing a letter allows for introspection and storytelling that can be deeply cathartic for the writer. It’s a personal, reflective process that often reveals the core values and life lessons that have shaped an individual's journey. For recipients, these letters become priceless keepsakes that offer insights into the personal histories and relationships that have woven the fabric of their family's story.

The Process of Crafting Family Love Letters

The creation of a family love letter is a thoughtful and deliberate process. It begins with comfortable conversations, often over the phone, to ensure the ease and comfort of the storyteller, typically an elderly family member. This approach fosters an environment where stories can flow freely without the distractions or pressures of technology.

Through a series of guided discussions, a narrative begins to take shape. The storyteller is given the freedom to delve into memories, articulate their values, and share wisdom with their future generations. This journey is not just about capturing stories but also about the storyteller revisiting and cherishing their life experiences. The process is often filled with laughter, sometimes tears, and always a profound sense of connection.

Once the stories have been gathered, they are artfully composed into a letter. This is not just any letter, but one that is beautifully presented on fine stationery, meant to be held, read, and treasured. It is a legacy in written form, one that can be passed down through the generations, preserving the essence of the family for years to come.

Overcoming Objections to Sharing Personal Histories

Despite the apparent benefits of crafting such letters, there are common objections that arise. Some fear that their life stories are too ordinary or fraught with challenges that may not be worth sharing. Others may feel uncomfortable opening up to a relative stranger or worry about the emotional toll such recollections might bring. It's essential to address these concerns with empathy and to reassure that every life story is unique and worth preserving.

The truth is, every individual's journey, no matter how seemingly ordinary, is a mosaic of moments that can provide comfort, inspiration, and wisdom to others. Even the struggles faced and overcome are a testament to resilience and can serve as powerful lessons for future generations. The goal is not to idolize a life but to document the real, lived experiences that contribute to the richness of a family's history.

The Gift That Keeps on Giving

Family love letters are not reserved for moments of parting or the aftermath of loss. They can be gifted during life's milestones or as heartfelt surprises, prompting conversations and strengthening bonds while everyone involved is still present to enjoy the exchange. This proactive approach allows for real-time appreciation, discussion, and even further storytelling.

Imagine the delight of receiving such a letter on a special birthday, an anniversary, or simply as a token of love. It opens up avenues for dialogue, laughter, and a deeper understanding of each other. These letters become not just static records of the past but living, breathing pieces of ongoing family dialogue.

The preservation of family legacies through love letters is a noble and deeply meaningful endeavor. It is a gesture that conveys love, respect, and reverence for the lives lived before us and a commitment to the generations that will follow. In crafting these letters, we are reminded of our shared humanity, the enduring power of storytelling, and the incredible legacy that each person has the opportunity to leave behind.

By embracing the art of family love letters, we ensure that the stories, values, and wisdom of our loved ones are never lost. Instead, they become cherished treasures, binding us to our past and guiding us toward our future.

Remember to take care of yourself as a caregiver - take time each week (even for an hour) for “me” time so that you can better care for your loved ones!

Have you been looking for professional advice to cut through the enormous amount of information around senior placement or the correct type of caregiving for your parents, spouse, or yourself? Book a time with me for a complimentary consultation. Please find out more by booking your introductory call or by calling me directly at 503.830.1812

Caring for My Terminally Ill Parents

How I Cared for My Terminally Ill Parents

Both my parents had cancer in the same timespan - and they both passed away within a year of each other. From diagnosis to when they passed in their home, I was their caregiver and provider of all of their needs - from emotional, to physical and medical.

At the time I was caregiver for my parents, my now adult children were under the age of 10, and I experienced being the sandwich generation at the early age of 29. From my experience, I understand how hard it is to take care of your parents, especially when you’re managing doctors, their place of residence, medical bills, and finding the right type of care when they have to leave the hospital. It’s hard to juggle family life when you have your parents to take care of, and this episode will give you a bit of an insight into the challenges I faced taking care of my terminally ill parents over a decade ago.

My mom was especially hard to take care of because she didn’t have an invested interest in taking care of herself. She had a poor diet and lifestyle, which led to her having and not surviving stage 1 breast cancer, even with an early diagnosis. If she had a healthier lifestyle, she would most likely have been able to survive her cancer.

In addition to her poor lifestyle habits, she also implicitly trusted her doctor, even when she showed signs of her cancer returning and her oncologist ignored them. She refused to get a second opinion, and that mistake cost her her life. 

While it was hard to watch her go through these health challenges, since she didn’t have dementia until the last two months of her life, she was making all of her healthcare choices - most of which were not in her favor or benefitted her health. The decision to stay with her same doctor, even though she had many signs that her cancer had returned (and the doctor wouldn’t see her for a new evaluation) had me frustrated and spent, to say the least. Listen in to Season 01 Episode 03 to find out more about how I cared for my mother.

How I Cared for My Terminally Ill Father

When we found out my dad had cancer, he was diagnosed with Stage IV adenocarcinoma. Today, I believe he had Celiac disease that was undiagnosed as this type of cancer is one of the cancers you can get when you don’t eat a gluten free diet. Because we have auto-immune in our family, it’s very probable that he was Celiac and wasn't aware of it. Had he known, he would have changed his diet and would not have had cancer.

Because your small intestine absorbs your nutrients, you can be eating many calories a day, but never absorb any nutrition. In turn, you’re eating and losing a significant amount of weight because you’re not absorbing your food. When my dad was diagnosed, they gave him six months to live. Although he lived for three years, he wasted away slowly as his body wasn’t able to sustain basic functioning and his digestive tract was riddled with disease.

In Season 01 Episode 04, I talk about the overall journey taking care of my father, what we went through, and the challenges I faced when caring for my terminally ill father, including finding a care facility with certified nursing on staff after one of the times he was released from the hospital.

When you have parents that are stubborn or won’t listen to reason, and they are cognizant and able to make decisions, you have to let go emotionally to protect yourself. This is a healthy boundary to have and is essential to know which battles to choose with your parents when you care for them as they age.

I wish I was able to connect with a senior care advisor, like myself, when I was in the midst of caregiver turmoil. I sure could have used the extra assistance and support!

Remember to take care of yourself as a caregiver - take time each week (even if its for an hour) for “me” time so that you can better care for your loved ones!

-Lynn Smargis CSA, CDP

Certified Senior Advisor

Certified Dementia Practioner