caregiving

Table of Content

• Caregiving Organizations
• Specialized Support
• Planning Guides & Tools

Caregiving Organizations

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.

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.

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.

---

Specialized Support

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 Society

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.

George Mark Children’s House

Life-affirming care and comfort for children with illnesses and their families.

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.

Lorenzo’s House

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

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.

This interview between Mary Doane and Aisha Adkins from Caring Across Generation discusses what it’s like to be at the intersection of caregiving and young adulthood and managing your own future while caring for your loved one in the present. This interview was recorded on November 3, 2022.

Drawing from her own experience as a Sandwich Generation Caregiver, Mary Doane shares how the use of mindfulness, compassion, and clear boundaries can shift how you feel about your role, how you act within it and how you care for yourself in addition to others. This session ran on April 27, 2022.

Community Forward SF is a non-profit that works with and supports the most vulnerable and underserved communities in San Francisco: adults and older adults, who are or have been chronically homeless, those who are dually or triply diagnosed, those with chronic medical conditions, substance abuse issues and mental health needs and those who are BIPOC, LGBTIQQ. Community Forward SF offers medical, emergency, and transitional shelter, supportive housing, and a large array of wrap-around services such as mental health services, case management, substance abuse treatment, and domestic violence support to meet clients where they are at when they access the service.

The nature of the work they do results in front-line and clinical staff at Community Forward SF witnessing loss, suffering, and distress on a daily basis which can lead to emotional strain, empathy fatigue, or overwhelm. This strain on the staff has only increased since the pandemic. 

In response, Community Forward SF is partnering with ZCP who will deliver four monthly sessions to Community Forward SF’s clinical staff. These sessions will cover the role of mindfulness in exploring and regulating emotions, compassion for yourself and others in a caregiving role, the role of loss in caregiving, and how to approach maintaining healthy boundaries. 

Suzanne Adams, PhD, the Vice President of Clinical Services at Community Forward SF explained why she approached ZCP to support her staff: 

“Mindfulness is an integral part of a cultural shift I hope to impart on not only for our clients’ wellbeing but for our clinical team, as well. Our clinical staff manage the demands of difficult jobs–feelings of activation, coping with vicarious trauma, and issues of burnout–while also being called to address the essential need of self-care. I reached out to Zen Caregiving to provide the education, resources, and emotional support to my team that can help them in all areas of their experience.”

Sessions will begin in January 2022 and will run until April 2022. 

If you are interested in how ZCP can support you and your team, please contact sarah@zencaregiving.org to learn more.

If you like what you read, please join us and enroll in one of our courses, share our work with someone you think will benefit from it, or support us through a donation.

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.

If you like what you read, please join us and enroll in one of our courses, share our work with someone you think will benefit from it, or support us through a donation.