The Whole Caregiver Podcast

Season 2: Introduction to Our New Format

Hello and welcome back to The Whole Caregiver! We are excited to launch our second season. This brief episode introduces you to some important changes that will be coming your way this season:
1. Social media engagement! We now have a Facebook page: The Whole Caregiver and an Instagram handle: @thewholecaregiver.
2. Email to share feedback and ask questions: caregiverrevolution@gmail.com
3. Content on social media including episode drops, Quote of the Week, Policy Advocacy with Erna, and Megan's Media Corner. 
We look forward to another season with all of you! Thank you for your support!

Season 1 Wrap-Up

In this short episode, we reflect on the first season of "The Whole Caregiver," and discuss what is ahead. We have so much gratitude for those who have been interviewed and for our listeners. Thank you for joining us on this journey as we have learned and continue to learn. Please join us next season starting in Fall 2024. Be on the lookout for social media engagement opportunities and ways you can communicate with us about your caregiving experiences and needs. 
Thank you and take care!!

Transitions: Megan

As we start wrapping up the season, Erna interviews Megan about caregiving transitions she has experienced. We discuss what might be ahead for Megan with her caregiving responsibilities for growing children and aging parents. The take home from this episode is to be present and accepting of where we are, regardless of whether it fits what we wanted or imagined. 
The quote of the week is by James Baldwin: “Not everything that is faced can be changed, but nothing can be changed until it is faced.”
Many caregivers can relate to the experience of just having to go through, because sometimes that is the only choice. 
Megan mentioned once of James Baldwin's short stories--she called it "Sonny's Song," but it is called "Sonny's Blues." It is a beautiful story and worth checking out. 
Our news of the can be found here: https://fortune.com/well/2024/05/20/health-care-low-trust-health-literacy-cvs/
This article had sobering statistics about health literacy and how far we need to go in ensuring individuals have access to and can understand the health care system in the United States. 
Thank you for listening. We look forward to engaging with you more on social media and other outlets. 

Transitions: Lindsay

For this episode, we welcome a wonderful guest, Lindsay Fernandez. Lindsay Fernandez is a bereavement counselor, certified grief educator, certified grief movement guide, and founder of Life After Loss. Lindsay has navigated family caregiving with her mother, as well as the deep grief of her mother's death. Lindsay provided beautiful and insightful experiences and information for anyone who has been, is, or will be working through grief. We are so grateful for her time and expertise. We have provided additional information if you want to learn more about Lindsay and her work:
Her Instagram handle: @_lifeafterloss
Lindsay's essay: https://www.lifeafterloss.co/blog/learning-to-live-without-you
Our news item of the week focuses on paid caregivers, essential workers who deserve higher wages for the care and work they do. The article Erna highlighted addressed paid caregivers in Nebraska and the impact of increasing wages for these folks. Importantly, when these caregivers are paid a living wage, or higher than a living wage (ideally), the economy can be more robust, family caregivers receive some reprieve, and everyone is more well (paid caregivers, family caregivers, and the people receiving care). 
https://theconversation.com/paying-caregivers-more-could-boost-nebraskas-economy-new-research-227646
We will end with the quote of the day, which is the Serenity Prayer. This prayer represents a spiritual orientation to life that is used in Alcoholics Anonymous and other 12-step programs. It is most often attributed to Reinhold Niebuhr, an American theologian. 
"God grant me the serenity to accept the things I cannot change, the courage to change the things that I can, and the wisdom to know the difference."
Thank you for spending time with us! Take good care. 
 

Transitions: Cindy

This week we had the privilege of interviewing Cindy, a nurse and family caregiver who has a remarkable story about caring for her daughter with Hirschsprung's Disease. During the interview, we found ourselves in awe and in tears. We are super grateful to Cindy for sharing her time and insights with us. For those who may not have understood some of the terminology, we have some definitions below. 
Our quote of the week was from Pema Chödrön: "The off-center, in-between state is an ideal situation, a situation in which we don’t get caught and we can open our hearts and minds beyond limit." 
Our news of the week was: https://www.aarp.org/caregiving/home-care/info-2024/carehaus-baltimore.html
This article talked about an intergenerational cohousing community in Baltimore for older adults. They will reside in the community with caregivers and caregivers' families. This housing setup will benefit all involved by providing an affordable space to live, work, and socialize. We could not help but think of Rachel Cohen and her inspiring interview in which she shared the value of intergenerational communities.
Definitions: 
-TPN (Total parenteral nutrition): nutrition that is delivered through an IV to bypass the digestive system. 
- Ileostomy: a surgical opening connecting the ileum (part of the small intestine) to the skin surface to allow for stool to pass into a collection bag. 
- Hirschsprung's Disease: a birth defect where the nerve cells that affect the colon do not work. This can lead to serious issues such as infection.
- Thymoglobulin
- ED (Emergency department): AKA emergency room.
- GI (Gastrointestinal): the digestive system starting at the mouth and ending with the anus. 
- Vent (Ventilator): a machine that helps someone breathe.
- IV (Intravenous): A plastic tube placed in a peripheral vein for fluids and medication. 
- Central line: A line like an IV that provides access to veins near the heart. 
- PICC (Peripherally inserted central catheter) line: A line like an IV that provides access to veins near the heart. It is generally inserted in the arm where it bends. 
- Port (Port-a-cath): A type of central line that is surgically embedded underneath the skin and accessed with a specialized needle called a Huber needle.
- Heparin: A type of medication that is used to prevent clots in central lines. It may also be used to treat clotting issues. 
- IVIG (Intravenous immunoglobulin): An antibody treatment that is used to treat  autoimmune, infectious, and inflammatory conditions. It is given through an IV. 
 

Transitions: Annie

This week, we had the privilege of interviewing Annie, a family caregiver of two adult children on the autism spectrum. She shared her insights about supporting her children into adulthood, while also maintaining other important family relationships. We are so grateful to Annie for her time and wisdom!
Our quote of the week was from Megan and it was short and sweet: "Change is hard." We recognize that there are always opportunities for growth and good things with change, but that does not diminish the difficulty of it.
Our news of the week can be found at this link: https://www.whitehouse.gov/briefing-room/statements-releases/2024/04/09/fact-sheet-biden-harris-administration-highlights-substantial-progress-on-the-presidents-care-agenda-during-month-of-action-on-care/
This highlights President Biden's support for care workers and recognizes the important work they do in caring for children, older adults, and those with disabilities and chronic health conditions. Sometimes the line between care worker and family caregiver is not that distinct, and we want to celebrate all those who do the work. The best way we can do this is by supporting policies that enable health and well-being for care workers and family caregivers. 

Transitions: Erna

This week, Erna gives us a deeper perspective of her experiences as a caregiver. She describes the transitions she experienced throughout her twenty-year caregiving trajectory, including the transition away from caregiving when her mother died. For those caregivers experiencing such transitions, it can be a time of both growth and deep difficulty. We see you. 
To go along with our topic, here is our quote of the week from Ecclesiastes Chapter 3 verses 1-4:
"To every thing there is a season, and a time to every purpose under the heaven: A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted...a time to break down, and a time to build up; A time to week, and a time to laugh; a time to mourn, and a time to dance;"
We recognize that life is lived in the transitions and ups and downs, which is often the fundamental nature of caregiving. 
Our news of the day is about a grassroots movement at Pinterest, now called the Pinterest Caregivers group, which has influenced policy and culture at the company:
https://www.forbes.com/sites/christinecarter/2024/04/01/pinterest-employees-drive-policy-and-benefits-change-boost-productivity/?sh=268a6d29187e
Thank you for joining us!

Transitions Introduction: Megan

In this episode, Megan introduces the topic of transition with her experiences as a nurse, researcher, and family caregiver. The next several episodes will focus on transition experiences, starting with Erna and followed by some podcast guests.
The quote of the day is attributed to Abraham Maslow: “One can choose to go back toward safety or forward toward growth. Growth must be chosen again and again; fear must be overcome again and again.”
The caregiver news item is an article focused on an organization that offers online support groups and educational programming called Duet.
Here is a link with more information: https://www.cbsnews.com/news/family-caregivers-nationwide-support-group-duet-aims-to-help-them/
If you want to learn more about Megan’s family caregiving research, here is a link to her Google Scholar profile:
https://scholar.google.com/citations?user=HVNx3_wAAAAJ&hl=en
 

Caregiving in Community: Rachel Cohen

Hello and welcome to our podcast this week! We have a wonderful friend and guest, Rachel Cohen. She has a robust background in aging and intergenerational communities. She is so many things, but a few of the many are: a caregiving and community advocate, a wife, a duck mom, the founder and CEO of a consulting firm called Aging Dynamics, the Executive Director of LinkAGES Connects, and co-designer and instructor for Change Makers, a course at the University of Colorado Denver. 
If you would like to find out more about Rachel's work, here are some links to explore: 
https://www.aging-dynamics.com
https://www.LinkAGESconnects.org
https://www.ucdenver.edu/change-makers
 
We talked about intergenerational communities and some innovations to promote intergenerational or multi-generational living and being including parks and housing. In addition, we discussed the importance of intentional programming to foster better community awareness and support, and taking responsibility at both the individual and systems levels to improve community cohesion and care for those aging among us. Which, let's be real, is all of us. 
In closing, here is our quote and news of the week: 
Quote of the week:
"In Africa there is a concept known as 'ubuntu' - the profound sense that we are human only through the humanity of others; that if we are to accomplish anything in this world it will in equal measure be due to the work and achievement of others." Nelson Mandela
News of the week:
"In October, nonprofit Area Agency on Aging 1-B launched the [Caregiver Respite Voucher Program](https://www.caregiverrespiteprogram.org/), which provides informal and family caregivers a voucher worth up to $575 to pay for respite care, or temporary relief from caregiving responsibilities."
https://www.hometownlife.com/story/news/health/2024/01/02/caregiving-vouchers-southeast-michigan-area-agency-on-aging/72086273007/

Caregiving in Community: It Takes a Village

We are pumped to dive into our topic of the month: Caregiving in Community. To open the show, Megan shared a Yiddish Proverb for the quote this week: "God gave burdens, He also gave shoulders." We like to think of shoulders as our own and the shoulders of others. As social beings, we need the support of each other to make it through the mess of life. We both shared the importance of having chosen family and of creating community with our caregiving experiences. 
Here is our caregiving news:
More states are and are also considering additional ways of providing support to caregivers. Here's what Oklahoma is doing.  https://states.aarp.org/oklahoma/what-oklahoma-family-caregivers-need-to-know-about-the-caring-for-caregivers-actFor the 2024 tax year, unpaid family caregivers will be able to claim up to $2,000 or $3,000 in tax credits for out-of-pocket costs incurred for eligible expenses, depending upon the person for whom they are providing care.
New York state is considering new legislation that would increase the amount of family leave time allowed under New York’s program to 26 weeks and allow for 100% wage replacement. https://www.observertoday.com/news/top-stories/2024/01/legislation-to-expand-nys-paid-family-leave-proposed/
Yay for the states who are putting their money where their mouth is. Caregivers need all of the support--social, financial, emotional. 
Megan mentioned land grant universities, and here is a link to learn more: https://www.aplu.org/about-us/history-of-aplu/what-is-a-land-grant-university/
Thanks for taking time to join us for this episode!