Love Doesn't Pay The Bills (Two Squared Media Productions)

Welcome to Love Doesn't Pay The Bills!

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Karen Warner Schuler, author of The Sudden Caregiver, joins us to talk about the vast need for caregivers that is predicted by our demographics, as well as ways individuals can begin to prepare ourselves and our families to be as resilient as possible. The holidays are coming up, so of course we discuss examples of giving from abundant capacity rather than sense of obligation. Find Karen's resource guides at: https://www.thesuddencaregiver.com/resources/

transcription:
https://docs.google.com/document/d/1Omemuu3L3Hbok9h8x_B6lVvWe-8BEd96/edit?usp=sharing&ouid=116946706116646252571&rtpof=true&sd=true


*Please note: transcriptions are automatically generated, and may have inaccuracies.


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Grace Fox, student of midwifery, shares her experiences as the mother of children who experience disability. We discuss why life would be far easier for families of many people with disabilities if all public, formal resources were accessed at a single point of contact with a simple process. Find Grace at https://www.facebook.com/DragonflyMidwife

Transcript:
https://docs.google.com/document/d/13cumQpWCTbMrxAGZSgkCxiYg4O_rrs1cPYOPPTvyhbM/edit?usp=sharing

*Please note transcriptions are automatically generated and likely to contain errors.

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Steve Mullen, co-host of Caregiving Gen X Style joins us to describe the time-intensive care he and his wife provide for their parents. https://caregivinggenxstyle.podbean.com/

transcription:
https://docs.google.com/document/d/1rTQzsymMPKoosjtJDWIqMDSKaShieNKZ/edit?usp=sharing&ouid=116946706116646252571&rtpof=true&sd=true

*Please note transcriptions are automatically generated and likely to contain errors.

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.

Shasta Kearns Moore shares her experiences as the mother of twins who experience disability, as well as a bit about the advocacy for parents of children with disabilities to remain eligible for paid caregiver positions https://www.medicalmotherhood.com/

transcript:
https://docs.google.com/document/d/1pTQeoF2CUtTdeujFBYEOAE8ipB7A42uo/edit?usp=sharing&ouid=116946706116646252571&rtpof=true&sd=true


*Please note transcriptions are automatically generated and likely to contain errors.

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Becca Webb Ingersoll is a mother of twin boys, both of whom experience disability. She joins us to talk about her caregiving experience. She turns the table on Lisa to ask about advocacy with legislators.

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Wendy Fox-Grage describes the RAISE act and the implementation of the National Strategy To Support Family Caregivers.
https://acl.gov/CaregiverStrategy
https://www.nashp.org/

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Guest Amanda Mazdzer shares her experiences as the mother and caregiver of a child with a disability. We discuss the administrative load that family caregivers carry and the organizational skills we often develop by necessity. amandamazdzer@hotmail.com

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Jill McClennen joins us to talk about how caring for her grandmather led to her work as a death doula and what she has learned about living well. https://www.endoflifeclarity.com/ https://open.spotify.com/show/6BxGAdDYkkfcXKue3RUQca?si=64731d40190b4e92

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.

Jill McClennen joins us to talk about how caring for her grandmather led to her work as a death doula and what she has learned about living well. https://www.endoflifeclarity.com/ https://open.spotify.com/show/6BxGAdDYkkfcXKue3RUQca?si=64731d40190b4e92

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.

Psychologist, family therapist, and author of "The Emotional Survival Guide For Caregivers" Dr. Barry Jacobs unpacks the importance of community support systems and how to prevent caregiver burnout.

transcript:
https://docs.google.com/document/d/1EjII-Tu5wWQeKrQ7h-Da8cSO-3Fz6Aqp/edit?usp=sharing&ouid=116946706116646252571&rtpof=true&sd=true

*Please note transcriptions are automatically generated and likely to contain errors.

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.

Part 1 of 2:

Guests Amanda and Scott Mazdzer share their experiences as parents and caregivers of a child with a disability, as well as a mental healthcare provider's perspective on mental wellbeing for caregivers. We discuss outside support systems and the ways they reduce caregiver stress.

amandamazdzer@hotmail.com

transcript:
https://docs.google.com/document/d/1eoCcgDCyYCo_WWlvjE_9qxfi8dXO-p_9/edit?usp=sharing&ouid=116946706116646252571&rtpof=true&sd=true

*Please note: transcriptions are automatically generated, and may have inaccuracies.

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.

Part 2 of 2:

Guests Amanda and Scott Mazdzer share their experiences as parents and caregivers of a child with a disability, as well as a mental healthcare provider's perspective on mental wellbeing for caregivers. We discuss outside support systems and the ways they reduce caregiver stress.

amandamazdzer@hotmail.com

Transcript:
https://docs.google.com/document/d/11HhKo87e8RPCbrO3WKJ1W4O1TEg5wnJh/edit?usp=sharing&ouid=116946706116646252571&rtpof=true&sd=true

*Please note: transcriptions are automatically generated, and may have inaccuracies.

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.

Guest Carlen Maddux, author of A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, shares the personal experience of caregiving for his wife. We discuss family connections and how to keep them strong when faced with Alzheimer's.

http://www.carlenmaddux.com/

https://docs.google.com/document/d/1E_0dsXqav-nYYP48oWIokXqmh_8KIil5/edit?usp=sharing&ouid=116946706116646252571&rtpof=true&sd=true

*Please note: transcriptions are automatically generated, and may have inaccuracies.

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.

Guest Shasta Kearns Moore makes a return to discuss two bills recently addressed in the Oregon State Senate. These bills represent parents advocating to be eligible to work paid positions as caregivers to their children with disabilities.

https://www.medicalmotherhood.com/

https://olis.oregonlegislature.gov/liz/mediaplayer?clientID=4879615486&eventID=2023021052

transcript:
https://docs.google.com/document/d/1wn_NjRINMxJ3Vf9n5uO3qmRmho2sd-kx/edit?usp=sharing&ouid=116946706116646252571&rtpof=true&sd=true

*Please note: transcriptions are automatically generated, and may have inaccuracies.

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.

Susan Cybele is a caregiver to two family members and a ceramic artist. We discuss the importance of creativity, respite and independence for both caregiver and care recipient.

https://labiasculptures.com/

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The Guest this week is Calli Ross who is a family caregiver and leader in the movement in Oregon to allow parents to be paid for providing care to their minor children with disabilities.

https://www.facebook.com/groups/1750726871736838

https://www.facebook.com/ADSOregon

https://olis.oregonlegislature.gov/liz/mediaplayer/?clientID=4879615486&eventID=2023021052

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.

Dr. Lucille Carriere is a psychologist and Angie Ruvo Endowed Chair for Caregiving at the Cleveland Clinic Lou Ruvo Center for Brain Health. We discuss stress and impacted mental health amongst caregivers, as well as reducing anxiety amid responsibilites.

https://my.clevelandclinic.org/locations/nevada/specialties/caregiver-resources

Transcript: https://docs.google.com/document/d/1yLESq3bks9PddkEcnh7L_8JP188tK5Bb/edit?usp=sharing&ouid=106863056658610480232&rtpof=true&sd=true

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.

Danielle Miura is a family caregiver and certified financial advisor with a focus on helping other family caregivers stay financial stable. We discuss savings, insurance policies, and how caregivers can feel more secure in their budget.

https://spark-fin.com/

Transcript: https://docs.google.com/document/d/1uA9LgaiR3kn-ehXWaiO77iooUveb4HdY/edit?usp=sharing&ouid=106863056658610480232&rtpof=true&sd=true

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Guest Manjari Raman helps define the relationship between caregivers and employers and how to have conversations about accomodations and flexibility in the workplace.

Transcript

Read the full report

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This episode is about the Oklahoma Caring for Caregivers Act which will, if it passes the state sentate, provide a tax credit to reimburse family caregivers who have spent money on the care of their loved one. It's one piece of asstance, dwarfed by the estimated labor value of 6.6 billion dollars annually provided by Oklahoman family caregivers. Still, the bipartisan support of such measures around the country, could lead one to believe that we as a nation are moving in the direction that future family caregivers will be well cared for themselves. We discuss the relation between policy on the state and Federal level, with state programs often being incubators for Federal policy.

AARP's Valuing the Invaluable Report 2023
AARP's caregiver resources

https://www.oklahoman.com/story/opinion/2023/04/14/guest-caring-for-caregivers-act-would-offset-costs-for-oklahoma-families/70101049007/

transcript

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.

Nicole Jorwic, chief of advocacy and campaigns at Caring Across Generations, discusses the personal cost borne within families for providing care when there aren't enough care workers for hire, as well as what it would mean to make more of that cost public.

https://thehill.com/opinion/congress-blog/3980173-the-care-tax-the-cost-of-the-lack-of-care-for-caregivers/

transcript

#family #caregivers #support #DSP #careworkers #carecrisis

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Calli Ross is back to discuss the current state of the movement in OR to allow parent paid caregivers through Medicaid Home and Community Based Services. Just in time for mother's day, hundreds of mothers in Oregon lost their income for meeting the extraordinary needs of their children as the state of emergency which temporarily allowed parent paid caregivers expires without a permanent replacement yet in place.

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Maressa Brown joins us to discuss possible ways that some family caregivers may be able to get paid for work.

read the full article on care.com

https://maressabrown.com/

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transcript

Elise's letter on healthcare workforce shortages

ANCOR's report "The State of America’s Direct Support Workforce Crisis 2022"

Elise Augilar, Director of Federal Relations at ANCOR discusses the shortage of (non family) direct support providers. We discuss the need for DSP jobs to be properly recognized and paid.

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We're joined by Kim Evon to discuss California caregivers and the large gap in staffing that leads to reliability issues in caregiving. We discuss why family caregivers may have difficulties working full-time and what happens when there's not enough care to go around to those who need it.

transcript

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.

Melinda Kavanaugh describes what her organization YCARE does to support young caregivers. Young caregivers are very frequently overlooked, yet perform many of the same tasks as adults with many of the same responsibilities. Hear how Melinda brings youth caregiving education and a chance to connect to same age peers with similar experiences.

https://uwm.edu/ycare/

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Connie Siskowski, President of the American Association of Caregiving Youth, joins us to discuss youth caregivers. Her program recognizes and supports young people who are caregivers

Find out more about the American Association of Caregiving Youth

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.

We're joined by Emily Kenway, the author of "Who Cares: The Hidden Crisis of Caregiving, and How We Solve It". "Who cares" is a very loving memoir of Emily's own caregiving experience. It also is a great work of advocacy by imagining the changes that would happen throughout our world if we started from the default assumption that all people will be caregivers at some time in their lives.

https://www.emilykenway.com/about

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Kitty Eisle, executive producer for podcasts with Texas Public Radio and NPR, as well the host of Twenty-Four Seven: A podcast about caregiving, joins us to discuss caregiving for parents, how to prepare ahead of time for caregiving needs, and why it's important to know your neighbors.

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.

In this re-launch of the podcast, we talk data around caregiving.   Denise Brown is with us to talk about data, why it matters and her tool to help you view some of your own numbers.  Why do we need the numbers around care?  We have some compelling reasons.  

Explore your own caregiving stats
The Data Story of Caregiving event registration

Denise supports individuals managing difficult life experiences with coaching, planning and training. Through her work, Denise helps clients find hope, possibilities and a path forward. Denise began helping individuals who care for a family member in 1990 and launched a business to help them in 1995. She created one of the first online caregiving communities in 1996 which she managed until its sale in 2020.

Denise now develops and delivers training programs for the workplace and for individuals who want to coach family caregivers. More than 400 individuals from eight different countries have enrolled in her training programs offered through her company, The Caregiving Years Training Academy.

Denise began helping her parents in 2004 after her father’s bladder cancer diagnosis. Her mom, who had Parkinson’s disease, died in August 2022, one year to the date after Denise’s brother died. Her father died in July 2023.

You can connect with Denise via her community, CaringOurWay.com.

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.

This is a must listen episode!  Elissa Strauss brings to the podcast her deep contemplation of all aspects of caregiving. 

Elissa is the author of "When You Care", which is described as an “urgent and necessary book” by Rebecca Traister, New York Times bestselling author and we agree.  

How do we see care as the huge profound experience that it is?: Care is just as worthy of storytelling, respect, and material support as mountain climbing, and full of opportunitites to engage with the core questions around being human.  

Details about the book here: https://www.simonandschuster.com/books/When-You-Care/Elissa-Strauss/9781982169275

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A heartfelt wish for your holiday season from Lisa.

May your coming month be full of moments that you genuinely enjoy! 

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When we move away from specifying the care recipient's disease to focus on the caregiver, we find that different ways of talking about care experiences are very useful and descriptive.  The Rosalynn Carter Institute for Caregivers together with Duke University created a system to describe various caregiver experiences called Caregiver Profiles:  Are you learning about a new diagnosis for your family member?  or maybe managing a static illness?  or managing a system or setting change with your loved one? This way, we can talk about our experiences and needs as caregivers without sharing the medical details of our loved ones, and find commonality with people who don't even have direct care experience.  For example: everyone has been through some kind of big change where they had to learn a lot at once.  

Dr. Jennifer Olsen joins us.  Dr Olsen is an experienced epidemiologist.  She serves as Chief Executive Officer of the Rosalynn Carter Institute for Caregivers (RCI), which promotes the health, strength, and resilience of the 53 million family caregivers throughout the United States. 

More information about the Caregiver Profiles is here.



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Jessica Patay is the founder and executive director of We Are Brave Together which brings together and uplifts over three thousand parents of children with disabilities.  When her son was diagnosed with Prader-Willi syndrome, she met a warm community of famlies whose child also experienced the condition.  We Are Brave Together creates a similar experience for many more moms whose children experience a wide variety of disabilities.  You can join a free online or in person facilitated support group, receive newsletters and check out the Brave Together podcast!

We talk about loving our caree, all the myriad feelings that can come up during the holidays including cyclical grief, and how to gift a family caregiver.  



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Lynn Abaté-Johnson  joins Lisa to discuss the breadth and complexity of our human feelings as caregivers, particularly at the holidays.  We reflect on the paradox that embracing difficult emotions can bring more ability to adjust to them, live with them, and notice the more pleasant ones which can exist right alongside them.

After being a primary caregiver for her mom for over six years, International Best-Selling Author & Speaker, Lynn Abaté-Johnson, understands the typhoon of emotions and responsibilities that come with caring for a loved one. Like most family caregivers, Lynn juggled caregiving duties with a full-time career. In her daily life, she’s a global community builder and business consultant. Lynn wrote the book, “Out Of Love: A Daughter’s Journey With Her Mom To The End” to normalize and de-stigmatize what many families may take for granted or miss in their roles as caregivers. She offers practical tools & resources, along with encouragement for other family caregivers, with the goal of bringing light to the dark and peace to the soul.

Get a free chapter of the book here!

Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.