Whole Caregiver

Season 2: The Ongoing Challenges of Caregiving--Erna

In this episode, Megan interviews Erna about the ongoing challenges she encountered while caring for her mom. Erna described the following challenges:
1. Scheduling and Traveling: By trying to do everything, Erna realized she had not planned time for herself. Because of this, she made herself sick. 
2. Asking for Help: Due to the wise words of a therapist, Erna learned that she was doing too much, and she could rely on others to help with her mom. She used an organization called Visiting Angels: https://www.visitingangels.com/.
Episode take homes: It is okay to not be there all of the time or do everything. Also, get therapy if you need it :). 
Don't forget to find us on Facebook at The Whole Caregiver or follow us on Instagram @thewholecaregiver.
Email us any questions, ideas, or feedback at: caregiverrevolution@gmail.com

Season 2: The Ongoing Challenges of Caregiving--Megan

In this episode, Erna interviews Megan about the consistent challenges related to family caregiving in her life. Megan identifies:
1. Sleep (or lack of)
2. The difficulty of transitioning care during a move. 
With caregiving, Megan has lived in four different states and has navigated the health and school systems with her kids. A big surprise with this current move was the nurse ratios at the school, which are far below the national recommendations of 1 nurse per 750 children as a minimum. With the growing complexity of child health, these ratios should be even further reduced. Here is more information about school nursing and safe ratios, if you want to reach out to school boards and state legislators:
https://publications.aap.org/pediatrics/article/137/6/e20160852/52405/Role-of-the-School-Nurse-in-Providing-School
https://www.nasn.org/nasn-resources/professional-practice-documents/position-statements/ps-workload
Our take home is to not forget the power of your voice, and advocate for the helpers such as teachers and nurses among us. 
Don't forget to find us on Facebook at The Whole Caregiver or follow us on Instagram @thewholecaregiver.
Email us any questions, ideas, or feedback at: caregiverrevolution@gmail.com

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