caregiving

Camille Tacderan is the Daytime Charge Nurse on the South Three (S3) Palliative Care Ward at Laguna Honda Hospital, where ZCP volunteers have served for over 30 years. We spoke to Camille about the value the Volunteer Program brings, her experience of working through the pandemic, and her excitement about the Volunteer Program starting up again. 

You have spent many years on the ward with the volunteers. What impact do you see them having? 

Residents really benefit from having volunteers on the ward to interact with. It can be as simple as them sitting and talking with a resident in the Great Room [the communal area of the ward], or for some residents who are non-verbal just being present with them or holding their hand. Also, the volunteers are on the ward weekly and often have regular visits with residents whose conditions are changing over time, so they build a relationship with them and can tailor their interaction to that resident’s current needs. 

They also support the families of residents. What is special about S3 is that it allows family members to be family members. They don’t have to be medical caregivers and instead can live their own lives and visit as sons and daughters, or spouses. The volunteers are a big part of that specialness because families know that even if they can’t be there to sit with their friends or relatives, the volunteers can be. And that is really reassuring. 

For staff, more than anything else, it is just knowing that there is someone to sit with a resident when they aren’t available to do so. As staff, we are looking after a number of patients and sometimes can’t sit with people as long as we would like. Especially when that person is approaching the end of their life, it is comforting to know that the volunteers are available to be with that person in their last moments. 

“It is comforting to know that the volunteers are available to be with that person in their last moments.”

You worked through the pandemic when volunteers weren’t able to visit the ward in person. How was that experience for you?

The pandemic was really challenging. On a personal level, there was a lot of anxiety around safety for yourself, your family, the residents, and the other staff on the ward. 

The ward closed to visitors and volunteers early in March 2019 to protect residents and stayed closed until mid-2021. During this time a lot of residents didn’t understand what happened, some didn’t recognize staff with masks on, and some clearly missed the interaction they had with volunteers and family. For staff, it was also very difficult as we were busy adapting to new protocols and keeping residents safe, and it was at this time, when we were busier than ever, that it would have been wonderful to have the support of the volunteers who could also be with the residents. 

The volunteers have started to come back in person to the ward. How do you feel about that?

I’m really excited as the volunteers are such a big help. We are getting more younger residents joining the ward, who are alert and will be in the ward for a long time so have a big need for social interaction from those around them. With our workload, the staff can’t always provide that level of interaction, which is where the volunteers come in. 

Some of these younger residents come to the ward having experienced a lot of social isolation. Some have been living in COVID hotels, experiencing a lack of contact and services. Some have been living alone at home or in an SRO. It is so nice to know that they can get the companionship and interaction they want, need, and deserve when they get to the ward, thanks in a big part to the volunteers. 

As the hospital is run by the San Francisco Public Health Department, we are the safety net of the city. Our residents may have been living outdoors on the streets with no family or connections and it is lovely to know that they can come to this ward and spend the last few days, months, or years of their life being cared for and that they knew there were people around them who did care about them. 

“What we do on the ward is give the residents love.”

What we do on the ward is give the residents love. They are warm, get three hot meals a day, and get taken care of physically and emotionally. Volunteers are a crucial part of this as they fill the gaps when the staff can’t be there. And that is what makes the ward such a special place.

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From a recent study conducted by the AARP and the National Alliance for Caregiving,

“…there are more than 43.5 million adults in the United States who have provided unpaid care to an adult or child within the last year. 34.2 million of these Americans provide care to an adult age 50 or older. On average, a family caregiver will spend over 24 hours each week providing care to a loved one, although many report spending over 40 hours per week on caregiving duties.”

Caregiving, in any capacity, can be quite rewarding but it also comes with its own set of challenges. For some, caregiving can be stressful, overwhelming, strenuous and frustrating. Asccare.com lists a number of difficulties for you to pay close attention to, here are a few;

• Depression and isolation
• Sleep deprivation
• Emotional and physical stress
• Lack of privacy
• Being afraid to ask for help
• Financial strain
• Managing time

Coping with any one of these challenges can be trying though many of you face multiple challenges on a daily basis. Thankfully there are mindfulness-based tools and approaches to help you build emotional resilience to maintain delivery of high-quality and compassionate care to your loved ones.

Our Mindful Caregiving Education (MCE) introduces caregivers to mindfulness-based approaches and tools to help build their emotional resilience and work with stress. These approaches help caregivers successfully navigate the unique and challenging situations that can arise in caregiving. Through mindfulness-based education, you can build the skills needed to take on the common challenges of caregiving.

Zen Caregiving Project’s Mindful Family Caregiving, Four-Part Online Series, starting April 7, helps family caregivers find support and community while sharing resilience-building tools to improve the caregiving experience. This online series will help you:

• Increase the capacity to cope with discomfort and suffering
• Create a plan for maintaining self-care
• Establish healthy boundaries in relationships
• Deepen and sustain compassion for self and others

I invite you to take a moment and consider our Mindful Family Caregiving course and see if it fits with your schedule. If you have any questions, feel free to email us at education@zencaregiving.org

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.

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.

AgingCare

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.

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. 

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

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

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.

RAISE

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.

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.