family caregiver
CAREgiving Self-Paced
In cooperation with our digital platform partner, Tend, Zen Caregiving Project offers you CAREgiving, a self-paced six session course covering essential topics that address the emotional burden caregivers often experience. With short meditations, engaging instructional videos, and exercises you will build skills that will support the quality of your caregiving and enhance your overall sense of wellbeing.
Fully present, in the moment
June 14, 2023 was a day that changed the lives of the Barker family forever.
Anne Barker, who has been married for more than 25 years to the love of her life, Chris Barker, has an incredibly busy life. With six children, theirs is a household filled with happy chaos and constant motion.
So when Chris, at the age of 51, was unexpectedly diagnosed with stage 4 kidney cancer, the family’s world fell to pieces, and Anne found herself as a full-time caregiver needing to navigate the challenges of caring for Chris and her children, all while continuing to show up for work each day.
In the midst of all of this, Anne felt as if her own self-care was non-existent so someone invited her to take an Essentials of Mindful Caregiving course.
“I was hoping to get some tools to put in my toolbox to be able to use in a moment of crisis,” Anne said. “During a time that was very scary for all of us–I was learning what our future may look like or not look like–this course allowed me to set aside time to focus on just me which was so important. I learned how to care for myself more completely while I continued to care for Chris.”
Because of the generosity of Zen Caregiving Project donors, Anne was given a scholarship to take the course.
“When I think back to the time that I took the course, I have such a feeling of peace. I was losing so much of myself during Chris’ diagnosis that I really looked forward to each week when I was able to commune with other caregivers who were experiencing their own caregiving.”
One of the most important aspects of the course for Anne was that it became a safe place to share her feelings without worry. “Each of us in the course was able to express what we were thinking and feeling as caregivers. It was about us when so much of our worlds were focused on others. It made me feel so much less alone.”
It’s been more than a year since Anne took her eight-hour course, and she now uses some of the tools she learned in the course on a daily basis as her family navigates their new normal of monthly visits to the oncologist, quarterly scans, daily medications, and all of the things that come with a cancer diagnosis.
“I practice mindfulness daily, and I wake up 30 minutes early in order to ground myself. I don’t think I would have done that prior to taking the course, and I find such value in that,” Anne said.
“I take those first minutes each day to remind myself that I am present in this moment, my feet are on the ground, my heart is beating, and I am here. I don’t always know what’s on the other side of those moments so knowing that I can breathe, I can be present, I can put my feet on the ground, is everything.”
As she reflected on the past 15 months, Anne explained that she has always been strong and her strength during this cancer journey doesn’t surprise her. She paused for a moment as her voice caught in her throat.
“Sometimes, I think about those nights that I laid in Chris’ arms and cried. I am still surprised and shocked at how weak I am. Being mindful of my caregiving is what I needed. I give myself permission to be okay with my weakness. It makes me catch my breath and catches me off guard, but that’s okay.”
As a realist, Anne knows what the outlook is for someone with stage 4 cancer. And she has never been afraid of stating the truth.
“I kind of know our ending and that knocks the wind out of my lungs.
“For now, I am fully present, to be mindful, to be here.”
Anne and Chris are both here. And that really is everything.
CAREGIVING RESOURCES
Table of Content
- Caregiving Organizations
- Specialized Support
- Planning Guides & Tools
Caregiving Organizations
A website to support families. The site has an active online forum where caregivers can share their experience and learn from others by asking questions, giving answers, or participating in a group discussion.
CAN (the National Family Caregivers Association) provides articles, videos, and peer support to family caregivers across the country free of charge. They cover a broad range of topics from practicalities such as medication and nutrition management, to caregiver self-care to navigation of the medical system.
This non-profit’s mission is to improve the quality of life for caregivers and the people who receive their care. Their website has an online learning center and links to many other resources such as in-person support groups.
Specialized Support
For those caring for loved ones with Alzheimer’s, this website has clear and easy to access information on practical and emotional elements of caregiving.
The caregiver page of the website has an interactive caregiver resource guide, articles, and videos on cancer-related caregiver topics, online communities, and links to other support groups.
Companioa from the Institute on Aging
A paid-for service, to support caregivers of loved ones with dementia. This service pairs you with a personal “Care Coach”, a trained dementia expert. The Care Coach helps assess your loved one’s needs, map out a care plan and meet with you bi-monthly to discuss the plan and your needs.
Life-affirming care and comfort for children with illnesses and their families.
Imerman Angels support cancer fighters, survivors, previvors and caregivers by matching them with a “Mentor Angel” – a cancer survivor or caregiver who has faced the same type of cancer and who can answer questions and provide one-to-one support.
Lorenzo’s House focuses on younger-onset dementia and revolutionize care in an industry where existing practices need profound reimagining.
Planning Guides & Tools
A List to Reduce Work for Your Next-Of-Kin
This useful list and accompanying templates were kindly shared with us by Donna Woodward, a Hospice Volunteer and Dementia-care Volunteer. They will be particularly useful for friends or family in a caring role.
AARP Local Caregiver Resource Guides
AARP has put together local resource guides showing what support is available for family caregivers in different states and different cities.
How Do I Start My Advance Care Planning
A list of links to guides and toolkits for creating your Advance Care Directives.
Next Step In Care provides written guides and videos for family caregivers that help them through any medical treatment – from visiting the family doctor, trips to ER, hospitalization and discharge and Homecare.
Weekly Guided Meditation (Online, live on Tuesdays)
Facilitators: Roy Remer, Mary Doane, Alistair Shanks, Teresa Bouza
Cuidar y Cuidarse
Instructora: Teresa Bouza
Working with Sutter Health to support family caregivers
This year we began a two-year project in partnership with the Palliative Care Team at the Palo Alto Medical Foundation (PAMF), which is part of the Sutter Health Network. The aim of the project is to introduce support sessions for family caregivers within Sutter Health.
The project began with Zen Caregiving Project (ZCP) delivering four sessions to the Palliative Care Team in Palo Alto and San Mateo. These sessions covered self-care, managing difficult emotions, loss, and maintaining healthy boundaries. The sessions were a way of introducing ZCP’s teaching approach and content to staff, helping them to recommend the sessions to family caregivers in the future, and hopefully also provided support to the staff in their emotionally demanding work.
The next stage of the project will be running our CAREgivers program for family caregivers in Sutter Health. The CAREgivers course consists of six one-hour sessions, run weekly. The sessions are drop-in providing flexibility for the caregivers with their often unpredictable schedules. Each session includes some teaching on a topic, a short guided meditation, activities, and an opportunity for sharing with other caregivers in the group.
We are working with social workers from two Sutter Health locations to recruit for our first pilot course in October and are planning to run another three to four courses in 2022. We hope that these first courses, taught by ZCP instructors, will build awareness and demand for the CAREgivers program among the family caregiver population. Following completion of the ZCP-led sessions, we hope to train Sutter Health staff members in the delivery of the program as part of our established Train-the-Trainer program. In this way, we would ensure the sustainability of the program and continued support for family caregivers.
For more information on this project, CAREgivers, or our Train-the-Trainer program, please contact us at education@zencaregiving.org.
Support and Resources for Family Caregivers
This non-profit’s mission is to improve the quality of life for caregivers and the people who receive their care. Their website has an online learning center and links to many other resources such as in-person support groups.
CAN (the National Family Caregivers Association) provides articles, videos, and peer support to family caregivers across the country free of charge. They cover a broad range of topics from practicalities such as medication and nutrition management, to caregiver self-care to navigation of the medical system.
Better Health While Aging provides actionable information for older adults and family caregivers, grounded in what geriatricians believe to be optimal healthcare for older adults.
A website to support families. The site has an active online forum where caregivers can share their experience and learn from others by asking questions, giving answers, or participating in a group discussion.
For those caring for loved ones with Alzheimer’s, this website has clear and easy to access information on practical and emotional elements of caregiving.
The caregiver page of the website has an interactive caregiver resource guide, articles, and videos on cancer-related caregiver topics, online communities, and links to other support groups.
AARP Local Caregiver Resource Guides
AARP has put together local resource guides showing what support is available for family caregivers in different states and different cities.
Imerman Angels support cancer fighters, survivors, previvors and caregivers by matching them with a “Mentor Angel” – a cancer survivor or caregiver who has faced the same type of cancer and who can answer questions and provide one-to-one support.
Next Step In Care provides written guides and videos for family caregivers that help them through any medical treatment – from visiting the family doctor, trips to ER, hospitalization and discharge and Homecare.
Companioa from the Institute on Aging
A paid-for service, to support caregivers of loved ones with dementia. This service pairs you with a personal “Care Coach”, a trained dementia expert. The Care Coach helps assess your loved one’s needs, map out a care plan and meet with you bi-monthly to discuss the plan and your needs.
On September 22, 2021, the Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council delivered its initial report to Congress. It includes a comprehensive review of the current state of family caregiving and 26 recommendations for how the federal government, states, tribes, territories, and communities—in partnership with the private sector—can better Recognize, Assist, Include, Support, and Engage family caregivers.
Download the RAISE Family Caregivers Act Initial Report to Congress.
To learn more about how the council developed this report, check out the Implementing the RAISE Family Caregivers Act factsheet.
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