The Whole Caregiver Podcast

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!

Sandwich Generation Caregivers: Xue Peng

Hello and welcome to our second episode of the month focused on sandwich caregivers. We are really excited to welcome a friend and fellow caregiving advocate, Xue Peng. To us, Xue epitomizes a sandwich generation caregiver. She took on the care for aging parents as well as her nephews. With these responsibilities, she had to leave the workforce for a time. As she will discuss in the show, there were some clear challenges with caring for people at both ends of the aging spectrum. 
Before we dive in, here is the quote for this week's episode:
“Heroes didn't leap tall buildings or stop bullets with an outstretched hand; they didn't wear boots and capes. They bled, and they bruised, and their superpowers were as simple as listening, or loving. Heroes were ordinary people who knew that even if their own lives were impossibly knotted, they could untangle someone else's. And maybe that one act could lead someone to rescue you right back.” – Jodi Picoult
While caregivers are human and are dealing with their own knotted lives, they certainly do so much to untangle the lives of those they support. Thank you to all of you who are doing this work.
Also, our news about family caregiving highlighted new AARP Vermont research: https://www.reformer.com/news/study-supports-need-for-paid-family-and-medical-leave-in-vermont/article_07c697aa-c512-11ee-966b-bf840ddde62e.html"Among the financial expenses Vermont’s caregivers have incurred to help care for a loved one, AARP Vermont’s research shows 49 percent are paying for modifications to their or their loved one’s home and 40 percent are buying assistive technology such as a wheelchair, hearing devices and vision aids." 
We know that many caregivers contribute significant out-of-pocket funds to support those for whom they care. It is exciting to hear about the states that are acknowledging this and supporting caregiver needs with policy. 
Back to Xue! Xue shared so many important insights with us during the show. As part of her Chinese culture, she discussed that being there for her parents and nephews is just what she does. She did not even identify herself as a family caregiver until she was pretty far along her journey. There are many caregivers out there who can relate to this. Taking care of family is who we are and what we do.
When her dad had a health scare, Xue dove right in with arranging care, going to appointments, figuring out power-of-attorney, and advanced directives for her parents. She also stepped up to raise her nephews and did the hard work of supporting her nephews during the pandemic while they did schooling at home. That is no easy task and as Erna noted, Xue did a beautiful job providing the support her nephews needed to thrive academically during the pandemic. 
Some great takeaways from Xue and this conversation are:
-The importance of caregivers talking to and supporting each other like Erna and Xue did.
-Letting go and not trying to control everything.
-Realizing that we have to do things for ourselves. We do not always have to volunteer to do all of the things. We can step back and take the time we need to be well. 
A big thank you to Xue for her wisdom and time!

Sandwich Generation Caregivers: What's in a Name?

This month we will be focusing on a specific type of family caregiver--sandwich generation caregivers. While we talked a lot about this topic and the issues related to naming caregiving, we never defined sandwich generation caregivers in our discussion. So, here is a better late than never definition: someone caring for both young and old at the same time. They are essentially "sandwiched" between generations. Here is a great article, if you want to dive deep: https://www.washingtonpost.com/parenting/2023/03/22/caregivers-sandwich-generation/
To open the podcast, we shared a quote: "So far you have survived 100% of your worst days. You are doing great!"
Truth :)
Our news for this episode emphasized the caregiving of Gen Z. About 72% of individuals in Gen Z expect to be caregivers, yet 16% understand the costs required to do this caregiving. Yikes!! These folks already have the deck stacked against them with rising costs in all facets of life, including long term care. This is a great place for policy work that supports people who are aging and the people who will care for them. Here is an article to learn more: https://www.fastcompany.com/90995611/gen-z-elder-care-crisis-aging-parents
The bulk of our conversation focused on labeling and naming family caregiving. We talked about both the challenges that can arise and the benefits that can come from calling something what it is. The work setting was one area we identified where naming family caregiving could come with some additional baggage. But, if we can work on caregiver friendly workplaces and better health policy, maybe that does not always have to be the case. Here is an interesting academic article about word use with family caregiving: https://agsjournals.onlinelibrary.wiley.com/doi/full/10.1111/jgs.15988
Finally, Megan mentioned the RAISE Family Caregivers Act, but provided the wrong context for it (oops and sorry!). That is the danger of having unscripted conversations. We always want to be sure we are providing y'all with accurate information. So, the RAISE Family Caregivers Act is all about creating awareness and infrastructure for family caregiving. You can read more here: 
https://acl.gov/programs/support-caregivers/raise-family-caregiving-advisory-council
What Megan referenced is actually called the Caregiver Advise, Record, Enable Act. This is being adopted at the state level, and it requires that hospitals record the family caregiver in the electronic health record, notify them when their care recipient or loved one is being discharged, and provide education to the family caregiver. You can read more here: 
https://www.aarp.org/politics-society/advocacy/caregiving-advocacy/info-2014/aarp-creates-model-state-bill.html
Thanks for joining us today and take care!!

Well-Being and Goals Part 2

For our second January episode, we will be focusing on goal-making for our own well-being. What does it look like? How can we make things happen when there are so many other important responsibilities? In both the business and academic worlds where we come from, SMART goals are a thing. We do not dig into this during the episode, but we have provided some information about SMART goals here: https://www.indeed.com/career-advice/career-development/how-to-write-smart-goals
We talked about ways we learned how to fit exercise in with the other demands on our time. Megan discussed running and focusing on the fact that she ran rather than the time she spent. Erna talked about learning to adapt her Pilates practice to yoga and using resources like Yoga with Adriene: https://www.youtube.com/user/yogawithadriene
We love her yoga videos! She has something for everyone.
As family caregivers, we have found that flexibility and grace need to come along with goal-making. Goals are a way to help us assess and move forward. Not achieving a goal is not failure, but a time to re-evaluate. What barriers were there? Was this the right goal in the first place? We can ask ourselves what is most needful for us right now. Megan summarized this quote she saw on X (formerly Twitter): "Diamonds are formed under pressure. And bread dough rises when you let it rest. We are all our own things. What may be motivating to you may be crippling to others." Victor Linao
Erna mentioned this book that talks about wintering: https://www.npr.org/2020/12/03/941789158/wintering-is-painful-but-embracing-the-cold-makes-it-hurt-less
Sometimes we need to hunker down, warm up, reflect, and rest. And that is okay. 
Sometimes we need to get out of bed and push ourselves a little. That is okay, too. 
There is no right or wrong in goal-making. There is no failure. Our quote of the day from Father Richard Rohr sums this up well:
"In reality our growth is hidden. It is accomplished by the release of our current defense postures, by the letting go of fear and our attachment to self-image. Thus, we grow by subtraction much more than by addition. It’s not a matter of more and better information. The wisdom traditions say that information itself is not the key. Once our defenses are out of the way and we are humble and poor, truth is allowed to show itself. It is not acquired. It shows itself when we are free from ideology, fear, and anger. 'I know' won’t get us anywhere. The truth is, I don’t know anything...Only nonknowing is spacious enough to hold and not distort the knowing that is possible.”
Finally, we will wrap up with our caregiver news: https://www.warnock.senate.gov/newsroom/press-releases/u-s-senate-passes-resolution-led-by-senators-reverend-warnock-and-ossoff-honoring-the-life-of-first-lady-rosalynn-carter
First Lady Rosalynn Carter was honored by the U.S. Senate for her work to foster health across the globe, in her state of Georgia, and in the United States. She was a champion for family caregivers, among others. We are grateful for her legacy. Reverend Raphael Warnock stated: "Her commitment to destigmatizing mental health care, strengthening human rights, and improving global health was an extension of her faith and a testament to her caring spirit. Her work was not about politics—it was about uplifting the vulnerable, showing mercy, and embodying the belief that we are all connected.”

Well-Being and Goals Part 1

To kick off the New Year, we wanted to share some insights we have gained about being well and being a family caregiver. For this episode, we will focus our attention on well-being. Our next episode will focus more on goal setting. We recognize that when a caregiver is balancing work, family, social relationships, and family caregiving, their well-being, goals, and needs can often come last. There are consequences to putting ourselves last. 
We share some statistics from both the Centers for Disease Control and Prevention and the National Alliance for Caregiving. While we can see the consequences of family caregiving in ourselves, data can help us understand that we are not alone with these challenges. It can also spur us to action when we realize that putting ourselves last matters and can impact our health for the rest of our lives.
https://www.cdc.gov/aging/caregiving/caregiver-brief.html
https://www.caregiving.org/research/caregiving-in-the-us/caregiving-in-the-us-2020/
Megan mentioned a study that identified increased risk of mortality for family caregivers. It can be found here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3674731/
The main finding is that caregivers with high caregiver strain had higher mortality rates than those with lower caregiver strain. 
We also discussed valuing care work more in our country. AARP has a great report about the economic value of family caregiving: https://www.aarp.org/ppi/info-2015/valuing-the-invaluable-2015-update.html
When we say your work matters as a family caregiver, we mean it.
Back to well-being :). Well-being is multi-dimensional and can be defined in many different ways. If you Google well-being, many definitions, resources, and opinions come up. We really like the resources found at the Greater Good Science Center, because they are holistic and scientifically-vetted. Here is a link to explore: https://greatergood.berkeley.edu/key
We recognize the difficulty of trying to be well. It is work, and it is hard when there are so many other demands. But, we each matter! Not because of what we do for others, but because we have intrinsic value. 
As part of the New Year, we will be sharing some caregiver news at the beginning of each episode. Some really cool news is this product: http://paidleave.ai/
This was developed by Moms First, an organization led by Reshma Saujani. It is a resource to help individuals navigate paid family leave in New York State. There is information about whether paid family leave is provided in other states and the goal is to expand the platform to states beyond New York. 
Finally, we wanted to leave you with our quote of the day: “Wellness is the complete integration of body, mind, and spirit – the realization that everything we do, think, feel, and believe has an effect on our state of well-being.” – Greg Anderson

Grief Part 2

In this episode, we continue our conversation about grief. We get more specific about ways we have coped with grief and provide examples of how others can be supported in their grief. You'll notice we both identify the important role counseling has played in our lives and grief experiences. And, we highlight other strategies including bereavement support groups, exercise, mindfulness, music, visual arts, writing, and connecting with others. As you consider what you might need, remember that each person is different. Your way may not be our way. Please also remember that there is support if you are in crisis.
Reach out to a mental health professional immediately if you are in crisis. Here are some additional resources:
https://www.psychologytoday.com/us/therapists
https://www.samhsa.gov/find-help/national-helpline
https://www.crisistextline.org/
Here are some resources for coping with grief:
https://newsinhealth.nih.gov/2017/10/coping-grief
https://www.mskcc.org/news/coping-grief-7-things-remember-when-dealing-loss
https://www.mhanational.org/bereavement-and-grief
Here are some helpful tips about how to help others in their grief:
https://ctrinstitute.com/blog/supporting-someone-through-grief/
https://www.forbes.com/sites/forbesnonprofitcouncil/2021/10/27/five-ways-you-can-use-your-own-experience-of-loss-to-help-others-who-are-grieving/?sh=26ad400e298c
Here is some information about mindfulness with some exercises:
https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/mindfulness-exercises/art-20046356
Here is a Medium post from us about grief and joy:
https://medium.com/@TheCaregiverRevolution/2c67341665a4?source=friends_link&sk=60d5c4b50acaa20a4121a2f2ac7bc34f
 

Grief Part 1

The holidays can be a difficult time where grief may seem more profound. Grief and loss are pretty universal experiences, and can be part of the fabric of family caregiving. We can grieve the loss of health, the loss of a future, loss of relationships, loss related to death, among other losses. For the next two episodes, we will talk about the nature of grief and loss. We will also introduce strategies to cope with grief or support others during grief. 
For this first episode, we focus on a clip of Andrew Garfield from the Late Show with Stephen Colbert: https://www.youtube.com/watch?v=_u_TswLQ4ws
In this interview, Andrew Garfield touches on several topics including grief as a form of love, using his art to honor his mother who he is grieving, and sewing up our wounds through connection and art. 
We discuss the relevance of these factors in our own lives and experiences. We identify complicated grief, but do not go into depth with this. We have provided this link about complicated grief: https://www.mayoclinic.org/diseases-conditions/complicated-grief/symptoms-causes/
If you feel that you may be experiencing complicated grief, please reach out to a trusted friend, family member, and health care provider. We have also provided a list of resources for grief, crisis, or mental health.
https://hopeforbereaved.com/
https://optionb.org/
https://www.psychologytoday.com/us/therapists
If you are having thoughts of hurting yourself or others, please seek care with a mental health professional immediately. We have also provided these resources:
https://www.samhsa.gov/find-help/national-helpline
https://www.crisistextline.org/
Here is a Medium post from us about grief and joy:
https://medium.com/@TheCaregiverRevolution/2c67341665a4?source=friends_link&sk=60d5c4b50acaa20a4121a2f2ac7bc34f