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Throughout this season, we learned from the lived experiences of care partners and experts who shared really eye-opening insights into the impact on our close relationships and how we can work our way through hard conversations and unexpected caregiving challenges with our sanity intact. 

I hope the stories and perspectives shared by our incredible guests make a positive difference that we know won't make the mountain any smaller, but gives you some provision, ideas, and faith to sustain you to the other side of your caregiving journey. They certainly have for me.  

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About Kris McCabe

Kris McCabe is a 34-year-old full-time caregiver over the last 5 years for her 84-year-old grandmother Mary. Prior to being diagnosed with Alzheimer’s, Mary lived with different family members until it was decided that 24-hour care in a professional setting was the best way to meet her changing care needs. Except, it turns out that for Mary, it wasn’t. In 2017, Kris made the decision to move Mary into her Chicago apartment. Since then, Kris and Mary have collaborated on social media as Life With Grams, sharing insight into their journey together. 

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I am so grateful to all of the guests this season, who vulnerably and courageously shared their stories and provided their guidance and expertise with us. Through them we have learned new ways to effectively communicate, seek help, and find resources on our caregiving journeys.  

Some of my favorite conversations covered how to care for loved one with brain change, how to seek support and community, how to achieve independence through mobility modifications, and how to find joy in difficult moments. I’m hopeful that through your listening you gained some valuable insight and tools for your caregiving toolbox. 

We are already hard at work planning up some very exciting ideas for Season 2, which will be launching in early 2023.  

Until then, for more, empowering content to support the health of you, your loved ones, and your communities, visit empoweredus.org to check out our other podcasts and projects.  Follow the Empowered Us community on Instagram @empoweredusnetwork and Twitter @empowereduspod to stay up to date with all podcast happenings and to connect with us.  

A special thank you to the Empowered Us team and Good Days for their support as we hold these important conversations about what it is like to care for loved ones in need.  

Empowered Us is a storytelling and resource hub led by Good Days, a national nonprofit that lifts the burdens of chronic illness through assistance, advocacy, and awareness. Visit MyGoodDays.org to learn more.   

I look forward to continuing to learn and grow with all of you. 

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Time Stamps: 

• 02:15 Laura’s 3 core values and how they connect to her caregiving experience 
• 05:18 How Laura’s father’s dementia diagnosis changed her personal and professional life 
• 09:47 Things that would have helped Laura better handle the challenges of long-distance caregiving 
• 12:06 Ideas for long distance caregiving to make planning ahead easier for everyone 
• 14:59 Laura’s experience “time traveling” with her Dad, in his dementia 
• 20:05 Laura’s recommendations for better understanding your loved one and their care partner. 
• 23:47 What makes long-distance caregiving unique 
• 25:04 Laura’s 5 big tips for long-distance caregiving 
• 27:24 Laura’s passions outside of caregiving 

“I feel like long distance caregivers, because we had that emotional disconnect, that can actually be a strength because we're able to see the big picture.” - Laura Smothers-Chu 

Takeaway Learnings:

1.     Long-distance caregiving can be an opportunity for long term care planning with a bird's eye view. Your role can give you perspective to map things out outside of the overwhelm of daily care activities, which is incredibly helpful to not only prepare for what’s next, but provide practical support for a primary, hands-on caregiver. 

2.     Long-distance caregiving doesn’t mean you’re separated from the hard emotional experience or logistical challenges. It requires resources and support, and you’re deserving of that, just as a caregiver in closer proximity is. 

3.     Patience with ourselves, other care partners, and the person we care for is key. We can expect each person to process this experience in ways that may look different from our own. 

Actionable Tips:

1.     Consider doing research to learn more about a diagnosis. This can help us be more informed in making care decisions, and to better prepare for what’s next. 

2.     Try to work your way to finding acceptance for a loved one’s diagnosis helps make room to be more emotionally present and supportive. 

3.     Practice self-compassion. Regardless of the messages we may have internalized that say otherwise, it is a gift we can give to ourselves. We may need to remind ourselves that we’re doing the best we can. 

About Laura Smothers-Chu:

Laura is the CEO and founder of Befriended Heart. In her work, she guides long distance caregivers managing dementia care from the early through late stages. 

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In this bonus episode, Dannelle discusses 5 components of searching for a senior care community for a loved one.

1.    The Community’s Reputation  

• You want to know the reputation, licensing status, and other background information. 
• You can also research online to check reviews and reach out to others whose loved ones live or have lived in an assisted care community. If researching online, be careful about providing personal information online to avoid being overwhelmed by marketing calls.  
• To compare Medicare providers visit this medicare.gov link.

2.    The Environment and Location of the Community  

• Expect to tour to get a feel for the community.
• Keep alert for the energy and atmosphere, as well as cleanliness and upkeep.   
• While not always possible, do your best to find a location within commuting distance for regular visits.  
• Ask about the building’s safety procedures, particularly if it’s a memory care or continuing care community.  

3.    Eligibility and Cost  

• Have a clear understanding of costs and the pricing system based on your loved one’s needed level of care. Request details in writing.  
• Ask about the age and care restrictions.
• A care professional can also help identify and navigate eligible benefits including those earned by eligible veterans that can significantly reduce the cost of care.    

4.    Your Loved One’s Care Needs  

• It’s important to consider not only what kind of care and housing options your loved one needs right now, but how their needs may change over time.  
• Ask about the staff – what kind of training and support do those who provide daily care receive? Are there nurses and doctors on call? How is medication distributed? What does night staffing look like? What is staff to resident ratio?  

5.    Culture  

• Ask yourself: What’s most important to your loved one about their environment and daily culture?
• For example, if they like to play mahjong, listen to Marvin Gaye, or only speak Spanish and no one in the community can relate or share those experiences, it’s likely not to be a good fit.
• Ask about events and activities.
• If there’s an opportunity, speak with current residents to see how they like living there.
• You may also consider asking the staff about how to introduce potential friends with similar interests.   

Consider working with a certified senior advisor, a placement specialist, or another care professional who can provide detailed options based on your needs and preferences. Most reputable placement specialists will not charge a fee from you or your care partner because they're paid by the community. To find a placement specialist or certified senior advisor near you, check out our resources below.

About Olia Davis

Olia Davis is a Certified Senior Advisor with Oasis Senior Advisors based in McKinney, TX. Prior to working in senior advising, she had a career in telecommunications. As a Senior Living Advisor, Olia works with families to find the right senior living facility for their loved one. 

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“When she moved her to a residential care home, now when she comes, she is spending time with her grandmother. She doesn't have to worry about all those other things... it's a completely different interaction. It's no longer task oriented. It's more emotional because all that stress and all those other things you have to worry about are gone.” - Olia Davis 

Timestamps

• 02:26 - Olia’s three core values and how they connect to working with older adults and caregiving 
• 04:06 - Signs that a senior may need more help with care and possibly a community care living situation 
• 07:05 - Having conversations with loved ones about moving to a senior living facility 
• 10:19 - Finding the right community for your loved one 
• 17:41 - Support for caregivers of seniors 
• 20:36 - Options for affording care for seniors 
• 24:21 - The benefits of long-term care facilities 
• 26:48- What Olia is passionate about outside of her work with older adults and families 

Takeaway Learnings

1) A hard decision, like moving a loved one to a care facility, begins with a conversation involving everyone concerned. Moving is known to be one of the most stressful life transitions. So, even when we make care decisions for someone who isn't independently capable, including them in the process whenever, and to the extent, possible helps make better choices and lessens the stress of transition. 

2) Take time to understand the different options to make a more informed decision with your loved one, when possible, about what kind of community makes sense based on current and future level of care needs, cost, location, staff, and community policies, and other factors that may be important to your loved one's quality of life. 

3) Consulting a senior care advisor can help narrow the field of best options that work for your situation with less stress. 

Actionable Tips

1) We can't always check in in person, so it's important to be aware of potential signs that a loved one needs more help if they live alone or have infrequent visitors. Some of those warning signs may include: weight loss, a change in hygiene habits, memory loss, unpaid bills, or unopened mail, and increased isolation. 

2) The considerable cost of care is a key variable for most of us when choosing a senior community. It's important to fully review, as best we can, what financial resources and benefits may be available to help cover the cost of both in-home and community care, such as Veterans Aid and Attendance, long term care insurance, personal savings, or other resources. A good place to learn about financial options for long term care is paying for SeniorCare.com. 

[00:46:00] 3) Navigating eligibility and applying for potential care benefits can be complicated. So, it's wise to seek guidance from a professional, like a financial advisor specializing in long-term care, a VA pensions manager, a benefits counselor at your local Area on Aging, or other long-term care professional. 

About Olia Davis

Olia Davis is a Certified Senior Advisor with Oasis Senior Advisors based in McKinney, TX. Prior to working in senior advising, she had a career in telecommunications. As a Senior Living Advisor, Olia works with families to find the right senior living facility for their loved one. 

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“We had a very intense, emotional conversation about what it looks like to be the spouse of somebody with Ehlers Danlos Syndrome (EDS)...Everything from how does taking care of the kids work? How does navigating the healthcare system work? How does being intimate work when you have a partner who gets injured easily?... I think that helped decrease my fear of the unknown”. - Dr. Zev Minkoff 

Timestamps

• 02:23 Zev’s three core values and how they connect to his caregiving experience 
• 04:03 More about Eva’s diagnoses 
• 06:19 How to advocate for loved ones to get a proper diagnosis 
• 11:03 How to prepare to be a caregiver 
• 16:39 Zev’s thoughts on Eva’s future and prognosis 
• 21:06 How to help caregivers as a physician 
• 23:04 How the healthcare system can support family caregivers 
• 25:34 Zev’s passions outside of caregiving 

Takeaway Learnings

1. Preparing for a care partnership is not something we’re taught how to do. Committing to an ongoing conversation about what works and doesn’t work for both care partners’ needs create opportunities to find solutions as care needs change. 

2. Being in a care partnership takes courage. It’s important to find ways to be both compassionate and set personal boundaries when flare ups or moments of distress occur. 

3. Strong care partnerships, whether professional or informal, are centered around communication. An essential part of effective communication for professional caregivers in particular is asking: “What questions do you have?”. When we’re dealing with the unknown, we can support caregivers by creating an environment that normalizes questions and demonstrates empathy. 

Actionable Tips 

1. No one wants to react to an emotionally charged situation in a way we later regret. Dr. Zev described using the count down from 10 technique to take a moment before reacting. Taking a pause gives us time to respond with our best selves. 

2. The stressors of caregiving mean that we need to stay tuned in to our mental health. In addition to professional therapy, it’s important to know we have no or low-cost options as well. Using a meditation app as part of our self-care routine, making sure we’ve got the number for a crisis or support organization, like those available through the National Alliance on Mental Illness (NAMI) or the Caregiver Action Network, and checking in with a caregiving support group are a few ways we can prepare to take care of our mental and emotional health. 

3. When in situations with so many variables outside of our control, prepare as best you can for the unexpected to stay more flexible, like packing an extra bag with supplies you can’t otherwise easily access, planning extra time for travel, using a mobility device or private transportation if feasible, and of course, don’t forget the extra snacks and water.   

About Dr. Zev Minkoff

Dr. Zev Minkoff is an outgoing, double board-certified Pediatric Gastroenterologist and the husband of Empowered Us’ Eva Minkoff. Eva has been diagnosed with Fibromyalgia and Ehlers Danlos Syndrome. Zev’s background in medicine gives him an understanding of the medical system and a different perspective in anticipating being a future primary caregiver for his wife. 

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In this bonus episode, Dannelle discusses the difference it makes to keep company with others in spaces that support caregivers.

Our work as care partners requires learning how to manage intense and ongoing stressors we’re often unfamiliar with.

Working through these challenges can make us feel so isolated from the rest of our world. One of the primary benefits of finding a support community we feel comfortable in is the connection with others who understand and help normalize the complexity of emotions and experiences that are part of our journey. And it’s not just an ambiguous improvement in how we deal with the worries and stress.

According to the National Institutes of Health, studies have shown that programs that support caregivers can improve the quality of life of both the caregiver and the loved one and can delay nursing home placement. In fact, one clinical research study indicated participants who accessed regular supportive group counseling were able to perform caregiving in the home for up to 18 months longer than those in the study group who received no support. 

Aside from extending the longevity of providing care, caregiver support groups can also be a source of additional resources, information and strategies that resonate, because they come with shared perspectives.

They can help improve our understanding of our loved one’s condition, how we navigate the healthcare system, and discover new ways to help our care partner better manage difficult symptoms. 

As much as we value self-reliance, one of the lessons of caregiving is that we need each other.

The opportunity to create, contribute, and be a part of building community is vital to our wellbeing. And in order to stay strong for others, we need space where we don’t have to be. That’s what a support group can be for us, a place of emotional rest where we are fortified from depletion. 

There are a variety of different types of support spaces, including condition-specific groups, groups targeting different caregiver demographics, peer-led support groups, and groups led by a trained facilitator.

There are virtual support groups and digital programs, like Shaikha’s organization Haus of Care, which offers flexible support if attending a group in person feels overwhelming or inaccessible.  

Check out the websites of major disease charities and contact their chapters to find groups near you. 

You can also seek out referrals from friends, medical staff, and others who may have a connection to support spaces. A resource I recommend is the Caregiving Community Guide, a free digital resource directory for and by family caregivers, linked in our show notes. 

Once you find a support community that feels safe and welcoming to you, you can participate in whatever way works for you.

Listening to and receiving insight from other peoples’ stories without engaging may be all we have energy for some days, and that is enough. However much or little you interact, connecting with others who understand and support our experience is essential to reducing burnout, combating stress, and increasing our ability to recognize and respond to meaningful moments in the present with our loved ones. 

I hope you found this information valuable to add to your caregiving toolbox. 

About Shaikha Alothman

Shaika is the Co-Founder and CEO of Haus of Care, a company that utilizes the overlooked resource of family caregivers to support other caregivers in a peer-to-peer fashion. The system is a free web and mobile platform that “matches” caregivers and then allows them to communicate with each other to provide non-medical home-care guidance.

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About Kylie Walker

Kylie Walker is a licensed clinical social worker in the Dallas, TX area. She is skilled in treating anxiety, depression, and adjustment to life events, including grief and loss, chronic illness and pain, and caregiver stress. In her role as a therapist in private practice she has been able to provide emotional support to clients as they provide care for their loved ones. She has also had her own experience as a caregiver for her parents, which allows her to work with her clients from a place of personal experience. 

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About Theresa Wilbanks 

Theresa Wilbanks cared for her father until his passing at 99 years of age. During that time, she experienced the raging river of emotions that comes with caring for a family member. Overwhelmed and drowning, she navigated toward a more sustainable caregiving experience. Theresa founded Sustainable Caregiving and works with fellow family caregivers to help them navigate their caregiving journey. With humor and vulnerability, Theresa shares her story and strategies in her book, Navigating the Caregiver River: A Journey to Sustainable Caregiving. 

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“I want to communicate through my work to family caregivers that you actually matter, and your expertise is actually valued. We can see the weight that you bring to the table.” – Shaikha Alothman 

Timestamps

• 02:47 How Shaikha got into caregiving and research 
• 05:44 Why some caregivers have a hard time identifying themselves as caregivers 
• 09:14 Shaikha’s 3 core values and how they connect to caregiving 
• 12:49 How family caregivers are an asset to the healthcare system 
• 14:01 Shaikha’s research on caregiving 
• 18:34 How Shaikha started support groups for caregivers 
• 21:11 How Shaikha’s work was able to expand to other healthcare systems 
• 24:35 The research Shaikha is currently working on 
• 26:21 What Shaikha is passionate about outside of caregiving 

Actionable Tips

1.     Many family caregivers minimize their roles and experience because their work has not reached a level of intensity that they correlate with being a caregiver. If you know of someone providing care, support them in their efforts no matter what part of the journey they are on. 

2.     Caregiving has a history of being stuck from breaking barriers in the ways many other industries have been able to innovate. If you are a developer, consider creating tech resources and communication spaces for caregivers to receive resources and support. 

3.     If you are seeking support and resources to provide more effective care, check out Haus of Care. 

4.     If you are an entrepreneur, consider creating innovative social causes that are sustainable. There are ways to create supportive resources, while still being profitable. 

5.     Caregivers have so much expertise to share. Create spaces for family caregivers to step in and lead. This could be through in-person support groups in medical settings or community centers, or even though social media pages. 

About Shaikha Alothman 

Shaika is the Co-Founder and CEO of Haus of Care, a company that utilizes the overlooked resource of family caregivers to support other caregivers in a peer-to-peer fashion. The system is a free web and mobile platform that “matches” caregivers and then allows them to communicate with each other to provide non-medical home-care guidance. 

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Based on the work of The Conversation Project, which is an organization that helps people talk about their wishes for care through the end of life, as well as based on our own experiences, we know these discussions can be very difficult and overwhelming to initiate and to receive. So, let's go through it in steps. 

Step One: Think about what matters. 

Start with good questions, which may include, “What does a good day look like?” Is it quality time with loved ones or doing certain activities or even creating a certain environment? This helps us to better understand how our loved ones would like to spend their day.  

We can also ask, “What does support look like in hard times?” Is it going to your place of worship or spending time with family or friends? The answer can help give insight into what our loved one feels they need most when life is hard. 

We can also ask, “What matters most in life for you right now?” As well as “What matters most through the end of life?” It could be the question of what do you want your family and others to understand about you? Consider what the priorities are when imagining what a good death looks like. 

Step 2: Plan Your Talk 

It's so important for all of us to have a say in our care. While certain circumstances may not allow all requests to be honored, conversations can give us a stronger understanding and greater certainty in honoring our loved one's wishes. And frankly, it's not going to happen in one conversation. 

This is an ongoing conversation so that we can better understand how much our loved one wants/needs to know about potential diagnoses and conditions; how involved they want to be in their medical decisions, who gets to be involved in making decisions on their behalf, as well as concerns about potential interventional treatments.

Step 3: Start Talking 

Regardless of whether or not we have a close relationship with our care partner, it's just not possible for us to know everything unless we ask. Clarity helps give peace of mind. 

Think about some of the preparations to have these conversations and where would they feel most comfortable having this kind of discussion. Such as, who would our loved one like to have these conversations with? Who else should be in the room? Make a clear decision about when you would like to hold this conversation and write out a list of the most important things to cover. 

We can always practice having conversations to feel better prepared. The more we talk about it, the more informed decisions we can make. 

Step 4: Keep Talking 

When we make the courageous and important decision of initiating these conversations, keep going! Who else might need to be part of the conversation? As we continue to ask questions and listen, we build confidence that we understand what matters most for our loved one. 

Reflect on past conversations and decide when you would like to speak again, what might be important to revisit or clarify and what might be important to cover in the next conversation. 

For more information on having these conversations, check out The Conversation Project. There you can download their free conversation guides to provide even more guidance for these conversations.  

About C. Grace Whiting

With extensive experience in the nonprofit sector, Grace is a mission-driven leader with a commitment to make the world a more caring place. She is an expert in long-term care and health policy and has served as a resource for Members of the U.S. Congress, national and global advisory boards, and media such as the New York Times and CSPAN. Grace joins NAELA from the National Alliance for Caregiving, most recently serving as President/CEO. Grace also worked at the Alliance for Home Health Quality and Innovation and Leaders Engaged on Alzheimer’s Disease. Grace earned her JD from the University of Memphis School of Law. There, she helped launch an Alternative Spring Break and received the Memphis Bar Association’s Irvin Bogatin Public Service Award. A graduate of Louisiana State University, Grace started her career at the Louisiana Family Recovery Corps, which led hurricane recovery efforts. She lives in Maryland with her husband, writer Geoffrey and distinguished pug, Chief Justice.  

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In addition to our full-length episodes, we'll be releasing minisodes with strategies and resources that may be helpful in your caregiving journey. This month, our guests will share their stories, giving insight into what empowerment looks like in their caregiving experiences. 

Whether you're helping someone with daily needs and activities, managing paperwork and bills, or providing emotional support, the work you do is the heart of what it means to value human dignity. You deserve support and care in this work. 

We hope you'll share this month's episodes of The Caregiving Soul with friends, or listen as a group - to help energize your conversations, inspire new perspectives, and encourage one another as we all learn to better care for our loved ones and ourselves. 

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“That's where I feel like an elder law attorney or special needs lawyer comes in, because one of the things that makes them unique is unlike other areas of law - divorce, employment law - you don't go to an elder law attorney or a special needs lawyer just for one thing, you go to them and they look at the whole situation and they think about how does everything interrelate?” – C. Grace Whiting

Timestamps

• 02:15 Grace’s personal and professional background in caregiving 
• 03:33 Grace’s 3 core values and how they connect to her professional roles 
• 06:52 The importance of an elder law attorney and Grace’s work with NAELA 
• 09:32 Educating caregivers on the importance of connecting with an elder law attorney 
• 13:52 Recent laws that benefit caregivers 
• 18:48 How some laws truly originate 
• 22:17 Creating caregiving-friendly workplaces 
• 25:21 Grace’s passions outside of caregiving 

Actionable Tips  

1. If you are considering seeking out legal advice to effectively plan for your care or care for a loved one, reach out to The National Academy of Elder Law Attorneys or your local bar associate to be connected to a lawyer who suits your needs. 
2. Start from a position of planning as a family before medical needs and emotions become heightened. The conversation can be difficult, but focusing the conversations on honoring what your loved one wants allows space for an open dialogue. For more resources to have these discussions, check out The Conversation Project. 
3. Be active in demonstrating the need for change in caregiving legislation. Much of policy and legislation changes begin at a grassroots level by advocates who are deeply passionate and willing to speak with their local congress people. Know that it may take time for a policy to be created but taking action makes all the difference. 
4. If you manage or own a business, part of supporting diversity, equity, inclusion, and belonging in workplaces is recognizing that many caregivers would like to participate fully in their careers. As much as possible, support them by making simple accommodations, like remote work or flexible schedules. 

About C. Grace Whiting

With extensive experience in the nonprofit sector, Grace is a mission-driven leader with a commitment to make the world a more caring place. She is an expert in long-term care and health policy and has served as a resource for Members of the U.S. Congress, national and global advisory boards, and media such as the New York Times and CSPAN. Grace joins NAELA from the National Alliance for Caregiving, most recently serving as President/CEO. Grace also worked at the Alliance for Home Health Quality and Innovation and Leaders Engaged on Alzheimer’s Disease. Grace earned her JD from the University of Memphis School of Law. There, she helped launch an Alternative Spring Break and received the Memphis Bar Association’s Irvin Bogatin Public Service Award. A graduate of Louisiana State University, Grace started her career at the Louisiana Family Recovery Corps, which led hurricane recovery efforts. She lives in Maryland with her husband, writer Geoffrey and distinguished pug, Chief Justice.  

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“Emergencies don't happen conveniently. You're not able to run home and then find that manila folder that has the advanced directives and everything that you need. You need it right now. To be able to have that at their fingertips, and to know that it's there, and whoever may need it, they can get it, too. That, I think, provides the biggest peace of mind for both the families and the professionals” – Carl Hirschman  

Timestamps

• 02:14 - Carl’s 3 core values and how they connect to caregiving 
• 06:50 - How Carl’s personal/professional experience led to the development of CareTree 
• 09:42 - Benefits of using technology for care partners 
• 12:07 - How technology and CareTree has helped reduce stress and overwhelm 
• 14:49 - What kind of tech to consider if you aren’t tech savvy 
• 17:05 - Examples of tech and apps that Carl recommends for safer home monitoring 
• 20:10 - How to use technology to reduce the risk of caregiver burnout 
• 23:30 - Other technology that care partners should know about 
• 25:59 - What Carl is passionate about outside of caregiving 

Actionable Tips

1) Ask questions to help make more informed decisions. There is no way for us to know everything. Our determination to seek answers is how we build confidence in the hard decisions we have to make. 

2) Create routines and processes that are transferable, and easily communicated, to allow us a little breathing room as care partners. It's not a fix for how hard caregiving is but helps sustainability and our ability to manage the unexpected. 

3) Think about what simple technologies exist that could reduce the strain of trying to be everywhere all at once. Like online grocery delivery or a smart doorbell. 

4) Consider using easy storage and communication platforms like CareTree or CareBridge. These technologies can help automate some of the tasks that consume so much time and energy, including maintaining health records, communicating with other care partners, and scheduling appointments and activities. 

5) If you're unsure of what technologies suit your needs as a care partner, learn more about options at resources like caregiver.org, AARP caregiving, and Dr. Handicap. Look for reviews from companies that are well-established and have a track record of positive feedback. 

About Carl Hirschman

Carl Hirschman is the Founder of CareTree. After hearing about the challenges of family caregiving from his mother and other industry professionals, Carl started down the path of creating CareTree - a platform to help families and professionals manage the care for their aging loved ones, giving them a centralized place to communicate, share health information, and receive recommendations on best practices to provide peace of mind. CareTree has grown to now serve approximately 1/3 of private-pay geriatric care managers as well as home care companies, insurance providers, and thousands of families nationwide. 

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Grief is complex, messy, and rarely a linear experience. When caring for a person with dementia, it feels like we are mourning the person they used to be. As their dementia progresses, we may have a variety of phases of grieving including denial, frustration, anger, guilt, sadness, and finally acceptance. These phases rarely happen in any particular order.

Being open with yourself about your grief and feeling those emotions fully can be so difficult, especially with everything else going on. But it is the first step toward processing these complex feelings and taking ownership of your grieving experience. If you have the opportunity, seek out a support group or therapist.

The frustration of managing this disease and the influx of emotions understandably distracts focus from connecting with our loved one as a person. But this can also be an opportunity to celebrate who they are becoming. Once you have begun the process of grieving and reframing your experience as a care partner for a loved one with dementia, there is an opportunity to find strength and connection through the caring process.

Grieving while still providing care for your loved one is not one-size-fits-all. But knowing that you are not alone is key. Your feelings, no matter what they may be, are valid. You deserve to process and feel any emotion. You can grieve, while simultaneously accepting your current situation and perhaps even finding pathways to gratitude in the process.

Tips for Reframing Grief

1. Be open with yourself about your grief and let yourself feel your emotions.
2. Seek a support group or therapist.
3. Celebrate who your loved one is becoming.
4. Know that you are not alone.
5. Grieve while also accepting your current situation.
6. Find gratitude.

About Shanae Rhodes

Shanae Rhodes a Registered Nurse specializing in adult care. As a student researcher and founder of My Sister’s Keeper, a virtual health-education platform dedicated to women of color, Shanae is committed to a career in community service and research that advocates for social justice for underserved and ethnically marginalized communities. Shanae’s current research is focused on gaining a more in-depth understanding of the experience of African American women who are dementia caregivers and their mental health. 

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“I love the saying that if you see something wrong, but you don’t do anything about it, you’re just as guilty as the person who is causing the issue. And so, I feel like that’s the same thing in this situation is that if we just sit back and don’t do anything about it, we’re part of the problem, when we should be part of the solution.” - Shanae Rhodes 

Timestamps

• 02:24 Shanae’s 3 core values and how they connect to her caregiving work 
• 04:48 Shanae’s research studies on caregiving experiences of African American women 
• 09:30 Dr. Woods-Giscombé’s study on the superwoman schema 
• 14:38 Access to training for dementia caregivers 
• 16:44 How to provide resources for under-resourced dementia caregivers 
• 19:11 How to advocate for people with dementia and their caregivers 
• 21:40 What Shanae learned from patients that she didn’t learn in nursing school 
• 22:35 The impact of lack of dementia training on under-resourced communities 
• 25:42 Other tips from Shanae on how to help caregivers 
• 26:41 What Shanae is passionate about outside of caregiving 

Actionable Tips 

1) In caring for a person with dementia, the frustrations of managing the disease understandably detract focus from connecting with our loved one as a person. Stay mindful to separate symptoms of the disease from the value of the person we care for. It's an essential part of how we maintain compassion.  

2) In under-resourced communities, underlying physical, economic, accessibility, environmental, and other social conditions, exacerbate the physical and mental impact for both caregivers, and those we care for. If you're an advocate, educator, or someone who supports care partners, include targeted resources and educational tools for these communities as a part of everyday programs.  

3) For those who work in a medical or social services setting, ask your administrators to bring a dementia program to train staff in compassionate, evidence-based dementia care. Patients with dementia are often seen and treated for some other condition without recognition that the treatment plan is influenced by symptoms and challenges associated with neurodegenerative disease.  So, it makes sense to include dementia care as part of the core staff competencies. 

4) If you're involved with a mobile clinic, going to rural areas, consider providing educational tools for dementia caregivers and patients where resources are harder to access.  

5) Educate yourself about dementia and how we can create more dementia friendly communities. Many caregivers avoid going to public spaces with a loved one because they just don't wanna deal with negative reactions when a loved one says or does something as a result of brain changes. Resources like TeepaSnow,com, The Alzheimer's Association, and Dementia Friendly America at dfamerica.org, are a great place to start. 

About Shanae Rhodes

Shanae Rhodes a Registered Nurse specializing in adult care. As a student researcher and founder of My Sister’s Keeper, a virtual health-education platform dedicated to women of color, Shanae is committed to a career in community service and research that advocates for social justice for underserved and ethnically marginalized communities. Shanae’s current research is focused on gaining a more in-depth understanding of the experience of African American women who are dementia caregivers and their mental health. 

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One of the tools covered was Square Breathing - a self-regulating tool that Shirley highly recommends. In this bonus mini-episode, we dive into the what, the why, and the how of Square Breathing so that you can apply it to your life as it makes sense.

What is Square Breathing?

Square breathing, also called Box Breathing, is a breath-based, self-calming tool taught to United States Navy SEALS to manage overwhelming situations. It is a tried and true method that can be so helpful in a variety of scenarios.

The Square Breathing technique originates from the yogic practice of pranayama or focusing on the breath. 

The reason for its common name, Box Breathing is because a square has four sides, which are represented by the breath – four counts to breathe in, four counts of holding your breath, four counts to exhale, and four counts of holding your breath after the exhale.

Why is Square Breathing impactful?

Caregiving can be a difficult task, with many stressful moments. Breathwork, such as Square Breathing activates the parasympathetic nervous system, which is the system responsible for rest, calming down the sympathetic nervous system’s “fight or flight response”.

When we are anxious, our breaths our short and shallow. Taking a moment to focus on deep, slow breathing through techniques such as Square Breathing calms the mind and allows us to feel more grounded in the present moment.

Overall, Square Breathing can result in the following:

• Lower stress levels
• Boosted mood
• Decreased blood pressure and heart rate
• Improved sleep

How do you practice Square Breathing?

Breathe in through your nose for four counts

Hold for four counts

Exhale for four counts

And hold for four counts

Continue breathing like this until you feel a deeper sense of calm and your heart rate goes down.

This technique can feel a bit awkward at first, especially if you are not familiar with breathwork. But if you’re determined to find more healthful ways through the madness, you might find that you don’t really care if it’s awkward. Because the fact is, everything’s awkward right now anyway! So keep practicing!

We hope you found this technique valuable to add to your caregiving toolbox.

Tips for Square Breathing in Practice

1. Practice with good posture
2. Try the lengthen the count over time
3. Set a clear intention
4. Combine Square Breathing with other pranayama practices
5. Develop a habit of stepping back throughout your day to re-center and align your energy

About Shirley Riga

Shirley Riga is the author of two books focused on surviving and thriving as a caregiver while living with her daughter’s chronic illness. An advocate for self-care and a teacher of meditation, Riga is a Certified Psychosynthesis Counselor, a Spiritual Director and a Psychic Medium. Riga came to this work after a lifetime of intense challenges –alcoholic family home, childhood abuse, toxic relationships, chronic illness, and the death of her spouse and her daughter. She struggled with poor self-esteem, immobilizing fear, and lack of a belief in a Higher Power. She learned to turn around challenges into lessons and tools, rebuilding herself while witnessing the firsthand positive changes rippling down to her children. Riga works with clients and groups as a coach, motivational teacher and trance healer sharing the process of finding empowerment through adversity.

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“I've learned a lot. That's why I call my daughter my teacher. I didn't know I was in a classroom. I had no idea, but what I have learned about myself continues to grow.” - Shirley Riga 

Timestamps

• 02:37 Shirley’s 3 core values and how they relate to her life and caregiving experience 
• 03:25 How Shirley’s core values have changed over time 
• 06:01 Shirley’s experience when she first learned of her daughter’s diagnosis 
• 10:34 Shirley’s coping tools for grief 
• 12:57 Square breathing and other techniques Shirley learned in therapy 
• 15:51 Scripts Shirley used for discussing how she and her daughter were doing with acquaintances 
• 19:31 More tools that helped Shirley 
• 23:23 Reparenting ourselves to better support ourselves 
• 25:48 What Shirley is passionate about outside of caregiving 

Actionable Tips

1) We all deserve love. Even if we don't feel that we're receiving it from an external force, we can give it to ourselves. Consider writing yourself a letter to create a reminder about how much you love yourself, and then read it out loud.   

2) When life and death is at stake, it's no wonder we worry about what's going to happen. When we stay grounded in the present, we're more open to see what's possible in the moment. Try touching your nose and saying, “I am right here” or have sticky notes around your space that say, “I am in the present”. 

3) Plan and enforce boundaries to create emotional safety and protect our hearts and mental wellbeing. We're our own best advocates to determine what that looks like. 

4) When we're caught up in a stressful moment, consider some of the coping strategies Shirley mentions including square breathing, passing a coin from hand to hand, or self-massage. 

About Shirley Riga

Shirley Riga is the author of two books focused on surviving and thriving as a caregiver while living with daughter’s chronic illness. An advocate for self-care and a teacher of meditation, Riga is a Certified Psychosynthesis Counselor, a Spiritual Director and a Psychic Medium.  Riga came to this work after a lifetime of intense challenges –alcoholic family home, childhood abuse, toxic relationships, chronic illness, and the death of her spouse and her daughter. She struggled with poor self-esteem, immobilizing fear, and lack of a belief in a Higher Power.  She learned to turn around challenges into lessons and tools, rebuilding herself while witnessing the firsthand positive changes rippling down to her children. Riga works with clients and groups as a coach, motivational teacher and trance healer sharing the process of finding empowerment through adversity. 

Hosted on Acast. See acast.com/privacy for more information.

“I am saying harsh things to people that I love. I'm not showing up sometimes as the person that I wanna be. And I know it's coming from a place of hurt, but I also am like trying to say, “look, you caused harm and it's because you’re feeling harmed and/or in pain and/or hurt. Do what you can to rectify that, but also don't continue shaming yourself also. That's been like really important for me lately. Just like, giving myself as much grace as I can.” - Jacquelyn Revere 

Timestamps

• 03:29 Jacquelyn’s recent decision about her stutter and showing up more authentically 
• 7:42 Jacquelyn’s 3 core values 
• 11:26 Giving yourself grace during periods of grief 
• 15:49 Jacquelyn’s experience connecting with caregivers through creating social media content 
• 22:16 The juxtaposition between grief and relief after a loved one dies 
• 26:16 Figuring out what’s next after losing a loved one you were caring for 
• 28:58 What Jacquelyn is passionate about outside of caregiving 

Actionable Tips

1) How we respond to the difficulties and obstacles in our lives is a choice that takes time to master. Try to focus on the love and the laughter that helps us find our way forward through uncertainty. 

2) There is no singular expression of grief. Grief is complex. We can simultaneously feel a desperate heartbreak, relief, and hopefulness about what might be next. Be kind to yourself, however you are in that moment. It allows us to stay present and intentional with the emotions we're experiencing. 

3) We are changed by the experience of caregiving in a way that can enrich our lives when our loved one is no longer here. Continue to reflect on what was learned from caregiving to honor ourselves and our loved ones in a way that can help others on their journey. 

4) Grieving requires a different kind of support. Find others who understand what it's like to lose a loved one, whether that's someone you already know, a support group, or faith-based organization. Mom of My Mom has an amazing chronicle of what it's like when we lose our person after caregiving that helps us feel not so alone in grief. 

5) When you're ready, consider reaching out to friends to connect and hold space for you as you need it. Know that it's okay to also make time for joy as we grieve and begin a new phase of life. 

About Jacquelyn Revere 

Jacquelyn Joyce Revere is a television writer, director, and producer. She was born and raised in Inglewood, California. A professed theatre nerd, she studied Shakespeare at Oxford University before receiving her Bachelors and Masters in Fine Arts. After graduate school, Jacquelyn became the ambassador for AIS (The American Institute for Stuttering). 

As their Ambassador, she has traveled to 3 continents connecting with other stutterers and facilitating week long improv courses. Her speaking engagements garnered her a following which quickly grew her YouTube channel dedicated to visibility and advocacy for the stuttering community. 

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“The way might not look like we think it should look or like it used to look, but when we open up our mind to the possibilities, when we stay open-minded as to how something can happen, it's limitless.” - Emilia Bourland 

Timestamps

• 03:31 Emilia’s three core values and how they connect to occupational therapy and caregiving 
• 07:43 Educating people on caregiving by explaining the “how” and the “why” 
• 10:07 How occupational therapists help with safety 
• 13:21 An example of how an adaptation can help with transfers 
• 18:46 Affordable places to buy durable medical equipment 
• 21:24 How home health assessments can help improve accessibility 
• 24:26 Paying for home health assessments with an occupational therapist 
• 28:02 How to help loved ones adjust to integrating mobility aides 
• 32:28 Examples of simple, inexpensive home modifications that will make life easier 
• 37:02 Amelia’s passions outside of caregiving 

Takeaway Learnings

1. Balancing safety with support for our care partner’s independence can be so challenging. Using mobility devices, adaptive equipment, and home modifications can help create a care environment that reduces risk of injury for both care partners, while also empowering more self-reliance in those we care for. 

2. When we have the right information, we’re empowered to make better decisions. The disconnect between educational resources and the people who need them most is frustrating, but most importantly know that they exist, and may require a little digging to find what works. It may also be helpful to enlist a professional, or provide additional information like the Home Modification Information Network, which has been developed with support from the Administration for Community Living. On their site, you can find educational materials, programs, policies, funding, and more resources by state. 

3. If the person we care for is in medical crisis or rehabilitation, that’s an optimal time to talk with an occupational therapist or other appropriate care specialist to do a home safety assessment. 

Actionable Tips

1. Emilia talks about the difference our approach can make to help reframe how loved ones can understandably feel about using mobility aides. The default feeling is often that using a device like a walker or lift aid represents a taking away or loss of independence. When we’re having these conversations, taking time to first think about how we present choices and their benefits can be helpful – like, “I want to support you in doing what you can for yourself for as long as possible”. So, we’re addressing the fear and grief around loss of independence along with a potential help.  

2. For those of us who provide educational support, training, or instruction, as care professionals, it’s important we’re clear about our role – which is not about trying to fix a single specific problem or situation, but rather asking ourselves, “What information can I share to help care partners make more informed decisions now and in future?” This is empowerment. 

3. We need to take our physical strain and limitations seriously. Ask yourself, your support group, or consult with a professional about what kind of device aids, tools, or other assistance can help ease the strain of transfers or other daily caregiving activities. 

About Emilia Bourland

Emilia Bourland, OTR, ECHM is the president and founder of Higher Standards Caregiver Training, as well as co-founder of The Purpose Project. She has been an occupational therapist for over 10 years, working in adult settings ranging from home health to the ICU, and everywhere in between. Emilia has worked as adjunct faculty at Texas Woman's University, teaching masters level occupational therapy students both hands on clinical skills and advanced professional reasoning. She has taught safe handling and care skills to nurses, caregivers, and clients/patients since the start of her career as an occupational therapist, providing direct training to thousands of people, in addition to logging tens of thousands of hours in her own clinical practice. Emilia holds her master's degree in occupational therapy from Texas Woman's University and her Executive Certificate in Home Modification from the Leonard Davis School of Gerontology at the University of Southern California. She is nationally registered with the National Board of Certification of Occupational Therapists and is licensed as an occupational therapist in the state of Texas. Emilia has been academically published in "Topics In Stroke Rehabilitation," and is the creator of "The Guide to Successful Aging" Planning Tool. 

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“The dynamic of who your loved one used to be - do you want to hold on to that or do you want to let that go and do you want to be present? It's your time, make the best choice of the time that you have, and all your feelings are valid.” – Jenn Chan 

Timestamps

• 3:02 Jenn’s 3 core values 
• 7:56 Caregiving as a young adult compared to an older age group 
• 10:37 The best resources for younger caregivers 
• 13:35 What is anticipatory grief? 
• 17:45 How did Jenn come up with the Senior Shower® Project? 
• 21:38 What is Jenn currently passionate about? 

Takeaway Learnings

1. Millennial caregivers generally walk a very different journey than older counterparts. Many are holding off or limiting dating, career, social life, and personal goals while taking care of a loved one.  

2. Creating connections with other young caregivers is so important for emotional health. Finding support groups, educational workshops, and community resources can help develop self-care routines and navigate unfamiliar caregiving territory. 

3. Although it affects many, anticipatory grief can be hard to put a finger on. It can manifest as anger, sadness, frustration, or a loss of control. Being able to name it and identify the loss (of personal time, career opportunity, social life, etc.) in that moment can clarify the root of our emotions. With clarity, we can begin to accept what we cannot change. 

Actionable Tips

1. Seek out spaces – whether virtual or in person - that help you feel less alone. A supportive friendship, young caregivers group, or educational workshop are a few ways to consider building the kind of connections that keep us in balance.  

2. Invest in what helps you feel better (physically, emotionally, spiritually) to care for yourself. It might not look the same as it did before caregiving, but you’re worthy of being looked after, too. 

3. Celebrate the caregivers in your life! Jenn has created the Senior Shower® Project to lift up and honor caregivers and caregiverhood. Let’s act on showing how much we appreciate the work of caregiving. 

About Jenn Chan, CSA®, CCC™

Jenn Chan, CSA®, CCC™, is the CEO & Founder of Senior Shower® Project, a startup gift shop with a mission to celebrate family caregivers of older adults with a party. Inspired by caregiving for her grandma, Jenn dedicates her career to elevate the family caregiver role with fun, love, and positivity. As a Certified Senior Advisor and Certified Caregiving Consultant, Jenn also facilitates support groups for LGBTQ+ seniors, dementia caregivers, and young caregivers. 

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In this episode, you’ll hear from Teepa about her experience guiding caregivers and patients of all ages, specializing in neuro-degenerative care. You’ll learn about the specific challenges we face as care partners for those with neurodegenerative conditions. Teepa and Dannelle will also discuss how the words and physical language we choose can help develop a more compassionate relationship and how we can be part of changing the culture of care for people with neurodiversity. 

“...I talk a lot about dancing with your partner because I think you have to learn the steps of their dance first, and then you invite them into a slightly different dance.” - Teepa Snow 

Timestamps 

• 03:13 Teepa’s core values 
• 05:47 Compassion fatigue in dementia care 
• 08:23 Reframing thinking about caregiving 
• 10:48 Different types of “language” to communicate with loved ones with dementia 
• 15:20 How to connect with loved ones with dementia 
• 21:18 Different ways to communicate with loved ones with dementia 
• 23:40:96 Tips for showers and hygiene 
• 31:54 Informed trauma care 
• 34:21 Information about the Creative Care Collaborative 
• 38:18 What Teepa is passionate about and who she is outside of caregiving 

Takeaway Learnings  

1.    When caring for a family member with dementia, we often mourn the person they used to be. When we take time to sit in silence to recognize our grief, we’re better able to take the next step - to be present with our person as they are right now.  

2.    Our tone of voice has a huge impact on how our loved one responds in difficult or frustrating situations. Taking a pause to deliberately choose how we want to interact, including a welcoming and affirming tone of voice can help strengthen our relationship. 

3.    Teepa says that caregiving is a dance. When we learn our care partner’s steps first, we can adjust the dance to a rhythm that works for both of us. 

Actionable Tips  

1.    Stay curious and ask questions to help maintain compassionate engagement with the person we care for, especially when communication is challenging. 

2.    Be open to doing something differently to help get better results – it may not be the original result or response we had in mind, but one that’s an acceptable alternative. 

3.    Stay open to learning what the person we care for is capable of to better position ourselves to support and empower with less strain. 

4.    Build connection and respect with questions rather than interruptions. 

About Teepa

Teepa Snow is an Occupational Therapist with over forty years of rich and varied clinical and academic experience. Her experiences led her to the development of the Positive Approach® training strategies. Her company, Positive Approach to Care® (PAC) provides online and in-person education, products, and resources. Teepa presents with extraordinary expertise and humor to audiences throughout the world. Her mission is to change the culture of care for those living with brain change, one mind at a time. 

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“When it comes to caregiving, it is difficult and it is hard, but there is joy also to be found in serving others and knowing that because you were there you made someone's life better.” - Angela Banks 

Timestamps  

• 03:29 Lena and Angela’s core values 
• 06:13 Lena and Angela’s feelings about their mom’s caregiving 
• 09:54 Tips for caregivers 
• 13:24 The value of journaling for caregivers 
• 16:57 Their mom's passions outside of caregiving 

Takeaway Learnings 

1. The unspoken obligation of family caregiving happens so frequently, in so many different families, it can be hard to see. Many of us take on the responsibilities without much thought, and therefore we’re unlikely to be prepared for the challenges. 
2. Self-care is of the utmost importance for us and those we care for. We can’t rely on the consent or support of others to determine whether or not we do what’s necessary for our own wellbeing. Paying attention to our limits and setting (and re-setting) boundaries are a part of loving ourselves. Those limits and boundaries may be related to a specific task, our time, our emotions or physical health, or anything that requires the finite amount of energy we have. 

Actionable Tips  

1. Try to listen without trying to solve the problem. The reason why this is an effective way to support a caregiver is because sometimes the problem may be unsolvable, but having someone just listen, makes room for us to find potential solutions on our own and to process our emotions in a more healthy way. 
2. Consider writing down thoughts and feelings in a journal, or even on random pieces of paper, without judgement. You can speak, or even yell the stress out loud, in private. Share with others who understand what it’s like in a support group. Any way that relieves the pressure before it overflows. Our stress needs to go somewhere. 
3. Acknowledge the work and positive difference that a caregiver makes, whether that’s you or someone else. 
4. It may be helpful to think about what tasks can be done differently to save time. 

About Angela and Lena Banks

Angela is an attorney and writer. She received her bachelor's in Business Administration and a Doctorate of Jurisprudence from the University of Texas at Austin. She lives in the Dallas area with her nine-year-old son, Ronan.  

Lena has worked in strategy and marketing for nearly 20 years, with a focus on data-driven decision-making, and innovation within organizations. Lena lives and works in Austin and currently serves as VP of Member Experience and Business Intelligence for Texas Medical Association. 

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On this show, Dannelle will be speaking with a variety of guests, including but definitely not limited to caregiving experts, thought leaders, and day-to-day caregivers like us.  

About Dannelle Leblanc

Dannelle LeBlanc is a Certified Senior Advisor and Caregiving Consultant who loves to help others persevere and grow through difficult life experiences. She blends 20+ years of professional experience in chronic illness and aging-related services with her lived experiences as a caregiver to help individuals and organizations navigate the challenges of family caregiving.

Dannelle is the founder and owner of Caregiver Transitions LLC, a grant award recipient of the North Central Texas Area Agency on Aging to deliver training to those who care for and/or work with older adults.

She has been a leadership member of the DFW Certified Senior Advisor network and is involved in both local and national initiatives related to caregiving and senior services. 

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