The Challenges of Caregiving

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

Join Us for Our Open Death Conversation Daylong Workshop

Join us for our Open Death Conversation Daylong Workshop taking place in San Francisco on February 29, 2020, from 10:00 am – 4:30 pm PDT.

The location for the Daylong Workshop is here –

1161 Mission St.
San Francisco, CA 94103

Instructors Celeyce Matthews, BSN, RN, and Cassandra Palmer provide a guided journey into our own dying process to help us view the full arc of our lives in a realistic way and promote greater compassion towards others who are going through the end of life experience.

In this workshop, we get in touch with the final stage of life. This workshop incorporates guided meditations and experiential exercises that in turn guide the discussion. Conversation remains the vital element of class.

After each exercise, we sit, integrate, and share our experiences one-on-one, in small groups, and together as a whole.

As the day progresses, our discussions get deeper and our connections grow stronger.

Before the session closes we address Advance Directives and practical issues around end of life care. We consider what we may want for ourselves, how to assist others in receiving the care they prefer, and tools to get prepared.

Topics explored include:

  • Preparing for Death Meditation
  • Loss Exercise
  • Walking with Mortality
  • Guided Death Contemplation
  • Advance Directives
  • Group Meditation

For more information or to purchase a ticket, click through this link https://zencaregiving.org/events/event/open-death-conversation-full-day-workshop-3/

The Bathing Ritual at Laguna Honda Hospital

By Alistair Shanks

In a small room on the second floor of a Victorian house in San Francisco, eight people are gathered around a bed, autumn light pale on the faces and walls. A man, dead less than an hour, lies on the bed, head resting on the pillow, grey-white hair brushed in feathery strands, arms at his sides outside the covers, palms down. Except for the greyish pallor of his skin and unnatural stillness of his body, he could be asleep. Next to the bed is a table draped with a gold tablecloth and arranged with flowers, a bell, a candle, and a bowl containing an herbal brew. A volunteer rings the bell and the sound dissolves slowly into the silence of the room.

We are here to perform the “bathing ritual,” a ceremony that allows family, friends, volunteers, and staff to say their goodbyes to those they have loved and cared for. This scene has been repeated countless times over the years as Zen Hospice staff and volunteers have performed this ritual at the now-closed Guest House.

A middle-aged man steps forward, picks up a washcloth from a tray held by a volunteer and dips it in the bowl containing the herbal brew. It is Yerba Santa, translated as “holy herb,” also known as Penny Whistle, a fragrant herb that grows locally and is used by native American peoples for a variety of cleansing rituals. He squeezes it out and approaching the bed, picks up the dead man’s left hand and gently wipes it with the cloth, turning the hand over delicately to cleanse the palm and fingertips. His voice catches in his throat as he murmurs, “Thank you, Dad, for the way you always looked out for me… I love you…” His voice trails off into the stillness of the room.

Zen Caregiving Project volunteers care for people nearing the end of their lives, finding ways to provide companionship, kind attention, and a loving presence during whatever time they have left. As someone weakens and nears death we sit with them silently, offering a simple witnessing presence to their final hours, minutes, and breaths.

Our care does not end at death. For family and friends of a deceased loved one, as well as volunteers and staff, what happens after death, can be just as significant as the care they receive in their last weeks and days. Too often people don’t know what to do in those raw moments after their loved one has died. In many cases, we have lost the traditions and practices for honoring and marking the passing of those we love.

One by one the people in the room take their turn choosing a washcloth, dipping it in the Yerba Santa mixture, squeezing it out, and approaching the bed to cleanse the hands and face of the deceased man. Many do this in silence, some speak words of love and sadness, gratitude. When all have taken their turn we stand in silence until the volunteer rings the bell, sharp and clear in the stillness.

Since its beginning, Zen Hospice Project has offered this simple bathing ritual for deceased residents. It is a way to mutually engage family, friends, volunteers, and staff in a tangible enactment of love and grief. This tender act of cleansing may be the last opportunity family and friends have to touch their loved one.

Despite its long history at the Guest House, this ritual had never been done at Laguna Honda Hospital until October 12, 2019, when Zen Caregiving volunteers, with the support of hospital staff, performed it for 40 friends and family members of a deceased patient. Attendees ranged in age from seven to 79 years of age. Some participated actively, others observed. ZCP volunteer Audrey Meinertzhagen described it as a “force field of urgent love.”

In the institutional setting of a large, public healthcare facility that does not lend itself to intimacy, the enactment of this ritual takes on even greater significance. The true beauty of the bathing ritual lies not in creating a perfect environment, although all efforts are made to create a serene and safe space for its enactment. Its power comes from the careful and loving actions of the community of participants and the opportunity to express deep loss in a tangible way. We at Zen Caregiving Project are excited to be able to offer what the resident’s daughter described as a “loving and compassionate farewell,” to the families of residents who die in our care.

Hospice Myths: 6 Things Hospice Care Isn’t

Hospice care is often misunderstood, which can lead to confusion about what hospice is and is not. We dispel six hospice myths.

Hospice isn’t a place but a type of care.

Hospice care provides the highest quality of life possible during the time your loved one has remaining. Hospice focuses on alleviating pain and other symptoms while addressing emotional and spiritual needs.

Hospice care isn’t something to be feared.

While hospice doesn’t treat the illness, it maximizes the patient’s quality of life in their final months. Hospice addresses the spiritual and emotional needs of the patient while providing comfort at the end of life.

Hospice care isn’t about giving up.

Hospice isn’t about giving up hope but redefining hope by helping patients to restore relationships, find peace, and spend time with their loved ones without aggressive medical intervention that often is painful and intrusive.

Hospice care isn’t just for cancer patients.

Hospice is a special kind of care for anyone living with any serious illness that has been diagnosed with six months or less to live by their doctor or specialist. If a loved one has suffered from a stroke, dementia, ALS, MS, liver disease, heart disease, or other serious illnesses, he or she may benefit from hospice care.

Hospice care isn’t to cure the underlying disease.

The goal of hospice care isn’t to cure the underlying disease; its focus is on symptom management, pain control, and comfort so that the patient can enjoy the highest quality of life possible during the time remaining. Hospice care also provides counseling, practical support, and respite.

Hospice care isn’t always an easy choice.

Family and friends must remember that hospice exists to provide compassionate care for loved ones at the end of their life when it has been determined that there is nothing medically that can be done to reverse or cure the underlying disease. Hospice care focuses on pain alleviation and symptom control and encourages an emphasis on emotional healing and relationships.

The Challenge of Maintaining Healthy Boundaries

I have had the privilege of meeting many caregivers in my role of teaching Mindful Caregiver Education courses at Zen Caregiving Project. An issue that comes up, again and again, is the challenge they face of maintaining healthy boundaries. Boundary violations — when someone oversteps the limits of another’s comfort zone — are common in the caregiving experience because they are common in life. Interacting with others regularly means that we will bump up against emotional boundaries. There is really no way around it.

Some examples of boundary violations are:

A daughter caring for her father feels a boundary was crossed when he asks her to clean his house, so he does not have to pay a housekeeper.

A brother feels a boundary is crossed when his caregiving sister won’t let him speak for himself during an appointment.

A nurse feels a patient has crossed a boundary when the patient asks for a personal phone number to call after hours.

In our Mindful Caregiver Education courses, we help people recognize when their boundaries have been crossed and teach them skillful ways of responding to boundary violations. We are not teaching how to eliminate boundary issues. In fact, this really is not possible. However, caregivers can learn to respond skillfully, so their response does not worsen the situation. Boundary issues are complex, and learning to respond skillfully takes practice.

Whether or not we experience a boundary violation can depend upon how well-resourced we are feeling on any particular day. Sleep, nutrition, relationships, and stress can all influence how we handle boundary issues. Emotional boundaries are fluid and can change from day-to-day.

And, boundary issues go both ways. Often caregivers experience the recipient of their care overstepping a boundary. Yet, if a caregiver is not paying attention, they too can violate boundaries.

So, recognizing boundary issues and learning healthy ways of coping with them is really important for the long-term well-being of both caregiver and care-recipient.

Mindfulness is a key tool in recognizing and working with boundary issues. Sometimes we may not realize that our boundaries have been violated; we just feel that something is not right. When we lack clarity around what is happening, we can react unskillfully, and things just get worse. In this scenario, we can use mindfulness to deepen an awareness of the body and physical sensations. The body does not lie; it can know that something is not right even before we understand what is really happening.

Learning to pay attention to the body through mindfulness practice can also help us pause before reacting unskillfully. One of my favorite pieces of wisdom comes from the writer/philosopher Victor Frankl who wrote, “Between stimulus and response, there is a space. In that space is our power to choose our response. In our response lies our growth and freedom.” When we are paying attention to our own body and mind, we can actually choose our response in any given situation. We can respond to boundary issues in a way that clarifies our own needs while conveying clearly that the relationship matters.

Conveying a clear boundary to a loved one, or to someone we are caring for, can be an act of compassion. It conveys that we are at once, committed to caregiving, and committed taking care of oneself. These commitments are not separate. Finding ways to take care of oneself actually supports better caregiving. Better caregiving is what we are encouraging at Zen Caregiving Project. Let us know how we can support you.

Dying Days at the Guest House

By Celeyce Matthews

The Guest House
The Guest House

Although I love my new job as a neonatal intensive care nurse, I miss my work in hospice on a daily basis. Before I was a NICU nurse, I was a certified hospice and palliative care nurse assistant at Zen Hospice Project’s now-defunct Guest House. The Guest House was a six-bed hospice residence in an iconic Victorian home in San Francisco, caring for people at the end of life. In its own last year of life, the Guest House had fewer and fewer residents due to complex political and financial issues. While it was extremely painful and frustrating to watch that beautiful place slowly die after serving as a graceful home of living and dying for more than 30 years, its decline also afforded some exceptional experiences that I will forever be grateful for. And frankly wonder if will ever be matched in meaning and beauty.

Some weeks that last year we only had a couple of residents at the Guest House, and in my 12-hour shifts, I was able to spend significant time with people in their final days and minutes and be with them as they took their last breath. While there are some similarities between the NICU and hospice, the beginnings and ends of life, the intense clinical pace of the NICU does not allow for the meaningfulness of the work to register as keenly as the spaciousness of the Guest House allowed for, especially in its final year. The deep sense of peace mixed with the shared experiences of love, anguish, sadness, suffering, beauty, and gratitude as I cared for people letting go of life was profound. Real and raw, in the midst of truth and complexity, love, and pain, I found passionate equanimity; I found a home.

“Alan” was chatty the first day I met him. Jittery in his movements, his emaciated limbs shaking in his grand, arching gestures, he told me stories of growing up gay and black in an area of the country not welcoming of these identities. He rarely paused between his words, so incessant was his need to talk, to speak his life as it was slipping away. In the next days, he became silent but insisted on sitting upright on the side of his bed. His long, ethereal body precariously balanced, wavering as if just about to collapse, his eyes half-closed, teetering on the edge. He would sit like this all day, only willing to get in bed to be gently bathed. He also wanted basketball games to be continually on his television. Concerned about him falling, and because I had the time with only one other resident in the house who was being looked after by the other caregiver, I spent hours just sitting with Alan in his room. He seemed to be hovering in a liminal space, not fully here but not gone, as the sounds of a basketball game, the sounds of life, quietly played on in the otherwise quiet room.

As I sat with him, I became attuned to him, knowing when he was about to reach for a tissue to wipe his leaking mouth and handing it to him just as he lifted his hand. Occasionally he would become aware of me and turn toward me and say, “Oh, you’re still here.” “Yes,” I’d say, “Is that ok with you?” “Yeah, thank you,” he would sometimes say, sometimes only finding the energy to nod slowly. In that quiet drama of stillness and basketball and afternoon light and Alan’s struggle to stay upright wavering between life and death, I felt a deep human kinship and connection between us. Our differing backgrounds and current circumstances dissolved in the reality of approaching death. At the rawest and most stripped-down level that the end of life brings, we were just two humans sitting together on the precipice.

And the caring – caring about this man I didn’t really know, caring for his body in ways that he could no longer do for himself – caregiving felt like a sacred thing, one that nourished me deeply. Bathing the dying, changing their briefs, feeding them, receiving their life stories, holding their hands felt like an incredible privilege to me. In a way, I needed it as much as they did. I miss this every single day.

The last time I saw Alan, he had finally consented to lying safely in his bed, no longer able to sit upright on his own at all. It was a busier day, and I didn’t have as much time to sit with him. When I came to say goodbye and tell him that I was going out of town for a week, we both clearly understand that this was goodbye forever. He started to cry and reached for me. I think this was the moment that the closeness of his death became even more starkly clear to him; the chronicling of the lasts and the losses getting close to the bottom of the page. He thanked me, and I could again feel the care and connection between two humans flow between us. I hugged him and quietly beamed my love and gratitude to him, marveling at how loss, love, and sadness are woven into the fabric of life. I was sorry to not be there for his death.

To not flee from these realities of humanity, of life, love, and loss, to stay with them unflinchingly was my job, but more importantly, it is my calling.

Being in the highly clinical and yet heart-centered world of the NICU, these aspects of care can feel sometimes eclipsed by the intense technology and the often breakneck pace. But the moments of placing a sick premature baby on his mother’s bare breast for the first time, or teaching a new father how to change the diapers of his 3 pound baby, or holding and bottle feeding a cute growing baby, I feel the gifts of caregiving. The clinical demands of the NICU are not what I ever wanted to be involved in, but those tiny, fragile babies seduced me.

And so here I am, at the other end of life, the beginning. One day I will have to return to hospice, I truly do miss it daily. Although I may never be gifted with the spaciousness of time to just be humans together living and dying, and engage in slow, gentle, mindful care as I was lucky to do in the dying days of the Zen Hospice Project’s Guest House.

10 Tips for Caregivers Over the Holidays

The holidays can be a joyous but stressful time (but it doesn’t have to be stressful). We offer 10 tips for caregivers to take care of themselves over the holidays.

1. Practice self-love

While the holidays can be stressful, it’s essential to take care of your physical and mental health. Keeping yourself healthy produces positive outcomes and improves the quality of care for those who depend on you.

2. Keep it simple

Remember, you have only so much energy and so many resources, don’t expend them at the expense of your own health. Keeping things simple and stress-free will save energy and your mental health.

3. No-stress meals

It’s ok to go out for meals or order in. The point is to enjoy the time together with those you love. If the time spent preparing a meal is more stressful than it’s worth, skip it.

4. Start a new tradition

Sometimes getting out and about isn’t possible due to personal responsibilities and time constraints. Invite people over to decorate, watch holiday movies at home, make yourself your favorite treat. You can develop new traditions that fit your life.

5. You can ask for help

Ask your friends and family to help with cleaning or groceries, shoveling the walk, tidying up. If resources allow, you can also order the things you need online or hire someone to help you.

6. Shop online

With so much going on, it’s challenging to find time to shop for gifts. Don’t be afraid to shop online for gifts and groceries, it’s a great time saver and keeps things relatively stress-free.

7. Brush off negativity

It’s the time for connecting with loved ones but also a time to keep our differences in check. Negative comments may come and go but don’t own them, brush them aside. Enjoy the time with those you love.

8. Let go of perfection

Don’t let perfect be the enemy of the good. You have limited resources and limited bandwidth, work with what you have but leave perfection behind. The point is to enjoy the season.

9. Connect with caregivers

If you haven’t already, connect with caregivers in your community or find online communities to share your thoughts and gather tips. This is a great time to lean on these communities as you process the holidays.

10. Go with the flow

Take things as they come, there’s little need to stress about things that are beyond your control. You’ll feel much better physically and emotionally, but let go of the little things and allow yourself to enjoy the company of those you love.

Zen Caregiving Project New Volunteer Training Update

Working with the dying, you are constantly reminded of what matters: love, kindness, generosity, and our interconnectedness.” ~ Roshi Joan Halifax

Zen Caregiving Project will soon be taking applications for our Spring 2020 New Volunteer Training, to be held in April. The core training — an intensive 40 hours over ten days — is not oriented towards acquiring skills, so much as asking participants to examine and reflect on their own histories of loss and grief. By exploring our relationship to these issues, we become familiar with our own stories of suffering, enabling us to become more comfortable with the suffering of others. In other words, by becoming intimate with our own losses, our fears, and insecurities, we are more fully able to connect to the loss of others. We learn to connect through our shared vulnerability. This reflects the fundamental Buddhist teaching of interdependence and the Zen Caregiving philosophy of mutuality of service.

Please note that our open enrollment period runs until February 28th, and notification of the status of your application will not be sent out until mid-March. Applicants are required to attend all training sessions, including the Ongoing Sessions. We also ask participants to commit to a full year of service, volunteering one five hour shift per week on a regular schedule.

The application form for the New Volunteer Training will be live and accessible here on Monday, December 16th.

Zen Care Giving Project Spring 2020 New Volunteer Training Dates

Core Training

Wednesday & Thursday, April 15 & 16 (Evening Sessions), 5:45 PM – 10:00 PM

Saturdays & Sundays, April 18, 19, 25, & 26 (All Day), 8:30 AM – 5:30 PM

Ongoing Training (Third Tuesday Evening of the month)

Tuesday, May 19th, 7 PM – 9 PM

Tuesday, June 16th, 7 PM – 9 PM

Tuesday, July 21st, 7 PM – 9 PM

Tuesday, August 18th, 7 PM – 9 PM

Tuesday, September 15th, 7 PM – 9 PM

Attending Your Loved One’s Final Moments

Reddit is a great platform for asking important questions, I use it regularly and often come across posts that are thought-provoking. I cross-posted one recent question from the platform to our community on Facebook,

“Should I be in the room when they take my loved one off of life support?”

It’s a difficult question with no easy answers. I was curious to hear about the experiences of our followers and ultimately received varied yet quite insightful responses. Below is a sampling of the comments,

The question isn’t should I, but can I. If you can, then be there, and if you cannot … don’t. No wrong or right answer here and no one gets to judge you one way or the other!

Someone said to me it is an honor to be there when someone enters the world, it is also an honor to be there as they exit the world. And suddenly I got it, and felt so much better.

The most important question is…What do they want? What’s important to them? If they wish to be there then WE as a team should support them. We have no right to decide if they can “handle it” or not. We should allow them to decide what’s best for both their family and themselves. 

Retired Hospice Chaplain here:
If you feel you can and have good support.
It can be a mystical, beautiful moment to be there at the time of passing, but if you aren’t sure, have someone (maybe a Hospice person) with you. I’ll hold you in prayer.

I recently experienced this with a dear friend who had suffered a massive heart attack and was taken off life support four days later. I knew that she was already gone, but I still did not want her to be alone. It wasn’t gruesome or disturbing; was difficult emotionally and profoundly sad. It helped me know that I was there for her until the very end.

It’s certainly a difficult question. What are your thoughts? You can comment under the original Facebook post if you’d like to leave a response.