caregiving

Emotional Support For Caregivers is Vital, So Why Aren’t We Talking About It?

Caregiving has got a bad rap

A lot of what we read about caregiving paints a very negative picture. Caregivers stressed by their caregiving responsibilities are at higher risk of experiencing fatigue, depression, and social isolation than non-caregivers, and some studies found that caregivers had decreased life expectancy compared to their non-caregiving equivalents.[1]

An interesting review of the research in the field from a professor at John Hopkins University points out that it isn’t caregiving per se that leads to these negative impacts, it is the stress response that caregiving can produce. In the case of research into life expectancy, those caregivers who were not over-strained had the same life expectancy as non-caregivers and, what’s more, in a few studies, caregivers had a longer life expectancy.[2] This leads to the conclusion that if we can find ways of helping caregivers reduce the stress they experience, we can protect them from the negative impacts of caregiving. Maybe we can even help them benefit from the positive effects of caregiving, such as a sense of purpose, increased confidence, and a deep connection.[3]

How can we reduce the stress of caregiving?

Stress occurs when a situation exceeds the resources that the caregiver feels they have to deal with it – we can all relate to that feeling of overwhelm and anxiety when we feel we are not able to manage the situation in front of us. 

We can, therefore, reduce stress in two ways. The first is by changing the situation the caregiver is in so that it doesn’t exceed their resources to cope with it. Family caregivers can face a lot of situations that could contribute to a feeling of overwhelm, e.g., carrying out medical tasks with little training, the physical and emotional fatigue of many hours caregiving, adjusting to the loss of a relationship, loss of time for yourself and increased financial strain to name a few.[4] In response to this, there is a large number of caregiving programs that try in various ways to improve these external circumstances and support the reduce their external stressors by providing practical, logistical, and financial support to caregivers.

The second way to reduce stress is by building up the emotional resources of the caregivers. This helps them to feel more able to meet skillfully and cope with situations as and when they arise (life has a habit of presenting us with “interesting” events and situations when we least expect it!). This emotional resilience approach is the approach that Zen Caregiving Project takes in its Mindful Caregiving Education. In our courses, caregivers are taught mindfulness-based tools and strategies to help acknowledge, understand, and skillfully respond to challenges that arise in their caregiving. By teaching these skills, we are increasing the caregiver’s emotional resource or capacity, meaning they feel able to cope better with more situations whenever they happen and reduces the likelihood of them becoming overwhelmed and stressed. 

It’s not an either/or

Here at Zen Caregiving Project, we champion all efforts to support the vital and powerful work that caregivers do, and we realize that a combination of both approaches described above is optimal. We are, however, sometimes surprised that emotional resilience-building is seen as “nice to have” rather than the essential skill we feel it is. Caregiving courses often focus on practical skills related to ADLs, or activities of daily living, like how to bathe or lift someone, or how to navigate the complex health systems. Yet, skills to support emotional resilience are conspicuously absent. Typically, suggestions for self-care when presented focus more on discrete activities such as doing regular exercise and having long baths. Both are great, but it’s best to address the problem of stress once it’s arrived rather than building a set of skills that strengthen emotional resilience and minimize the stress in the first place.

Skills that build emotional resilience aren’t magic cures. Still, we would argue they are equally as important as the more practical skills, both for the caregivers’ wellbeing and the quality of the care they provide to their loved ones.[5]

Work with us to build emotional resilience in those who need it

Here at Zen Caregiving Project, we offer our courses directly to caregivers and also work with partners in a range of sectors to build in emotional resilience into any caregiving support they provide. We hope to continue to raise awareness around and meet this vital need and welcome conversation and collaboration with the network of amazing organizations that work tirelessly to support caregivers. 

[1]National Academies of Sciences, Engineering, and Medicine. 2016. Families. Caring for an Aging America.

[2] The authors hypothesized that the positives of caregiving such as having a feeling of purpose in your life, and a connection with the person you are caring for, could explain the longer life.

[3] See Families. Caring for an Aging America for a good overview of the positive and negative impacts associated with caregiving

[4] It is no surprise that in the research caregivers with greater external challenges (such as caring for a loved one with greater needs, greater time spent caring and caring for people while on a low income) all experience higher stress than those with less external challenges.

[5] A study by Ankuda et al (2017) found that those individuals whose caregivers had poor wellbeing were more likely to be admitted to the Emergency Department and have higher Medicare Expenditures.

Mindful Family Caregiving Course

December 14, 2019 (9:00am - 5:00pm PDT/San Francisco)
1161 Mission Street, San Francisco CA 94102
$160 Benefactor / $130 Standard / $90 Student/Accessibility

Our Mindful Family Caregiving Course helps family caregivers find support and community, and shares resilience-building tools to improve their care experience.

Instructor: Roy Remer

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Support and Resources for Family Caregivers

Family Caregiver Alliance

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.

Caregiver Action Network

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

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.

Alzheimer’s Association

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.

American Cancer Association

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. 

Next Step In Care

Next Step In Care provides guides for family caregivers that help them through any medical treatment – from visiting the family doctor, trips to ER, hospitalization and discharge and Homecare.

Mindful Family Caregiving, Four-Part Online Series

October 1, 8, 15, and 22, 2019 (3:00pm - 5:00pm PDT/San Francisco)
Zoom Live Webinar
$125 Benefactor / $100 Standard / $70 Accessibility

Our Mindful Family Caregiving Four-Part Online Series helps family caregivers find support and community, and shares resilience-building tools to improve their care experience.

Instructor: Mary Doane

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A Course on the Foundations of Mindful Caregiving

October 26-27, 2019 (9:00am - 5:00pm PDT/San Francisco)
2701 Folsom Street, San Francisco, CA 94110
Registration through Re:Imagine

Foundations of Mindful Caregiving is a deep immersion into time-tested practices for cultivating mindfulness and compassion in caregivers. This weekend course offers a methodology for maintaining healthy and sustainable relationships through challenging times.

Instructors: Mary Doane and Cassandra Palmer

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Five Useful Resources to Learn About and Explore Palliative and End-of-Life Care

A Beginners Guide to the End: Practical Advice for Living Life and Facing Death

Written by BJ Miller (a previous Zen Hospice Project Executive Director) and Shoshana Berger, Director at IDEO, this book is a practical guide to approaching the end of life. It includes instructions on everything from navigating the health care system, to talking to your children about your will, to writing a great eulogy.

Get Palliative Care

This website provides clear and comprehensive information on palliative care for people living with a serious illness, or those caring for them. It includes detailed descriptions of what palliative care does and how to access it, videos and podcasts on the topic, and a directory of Palliative Care providers across the US. 

National Hospice and Palliative Care Organization (NHPCO)

Part of the NHPCO’s website, the Patient and Caregiver pages provide free resources on a range of topics, including deciding palliative care, hospice care, advance care planning, caregiving, and loss. Their resources are practical, clear, and easy to read.  

Compassion and Choices

This interactive site provides templates, resources, and toolkits to help you with planning for your future care. Spanish versions of all site documents are also available.

HospiceDirectory.org

Sponsored by the Hospice Foundation of America, HospiceDirectory.org provides a national database to locate hospices by location and/or name, as well as links to additional information for both caregivers and patients.

Foundations of Mindful Caregiving Course

September 21-22, 2019 (9:00am - 5:00pm PDT/San Francisco)
2701 Folsom St, San Francisco, CA 94110
$350 general admission / $380 general admission for RN CEUs

Foundations of Mindful Caregiving is a deep immersion into time-tested practices for cultivating mindfulness and compassion in caregivers. This weekend course offers a methodology for maintaining healthy and sustainable relationships through challenging times.

Instructors: Hephzi Plotkin and Amanda Coggin

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Zen Caregiving Project Custom Mindful Caregiving Courses

At organization or external venue

We can customize our courses to fit the needs of your organization and of those you serve. Using our core curriculum as the foundation of any course, we can tailor our content to focus on different aspects of caregiving and loss, and tailor the length and format of the course to fit your requirements.

 

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