Hello, 

I am starting to feel like I'm writing to a group of family and friends who are all sitting in our living with us. As I write this, it occurs to me that many of you don't know what I do for a living, and I want to share that with you simply because it informs the way I view my mother's current health issues.

I work for a nonprofit in San Francisco that offers courses to paid and family caregivers in self-care: how to manage big emotions, self-compassion, mindfulness, and loss and grief. We teach caregivers across the country on how to care for themselves so they can do a better job of caring for others. We also manage about 60 volunteer caregivers in palliative and hospice care at a hospital and at a housing facility for unhoused persons who can no longer care for themselves in the Bay Area. 

Because of this work, I am a huge proponent of hospice not only for those who are actively dying, but especially for those experiencing illnesses that are not curable. 

That being said, we have been having a lot of conversations in our family about what hospice is and what hospice isn't, when is the right time to call hospice, and how does a person make that decision which is never an easy one. What I have found in discussions with our mom and among some her friends and family is that the concept of what hospice does is quite different from the truth of it. As such, I wanted to share with all of you what we have been learning over the last few weeks together as we host informational hospice sessions with hospice organizations in Orange County, and as we try to educate one another. 

What the research on hospice supports is that the earlier you invest in yourself by letting hospice care for you, the more quality time you have with family and friends. The research suggests that families have increased satisfaction and quality of life, a reduction in emotional stress, and a reduction in prolonged grief and suffering. For those families that call upon hospice at the very end of life, they find the experience quite rewarding but often say, "I wish our family had called hospice sooner."

Hospice best serves those patients who continue to live life fully in the face of a disease that is not compatible with life. In other words, hospice is best served by those interested in still living rather than those actively dying. When a patient decides to go on hospice care, here is what happens:

* Active treatment stops and so do visits to the doctors--the oncologists, the neurologists, the primary care doctors, the urologists, etc., and instead the doctors and nurses come to you. In the early days, that means a nurse may stop by twice a week to check your vitals, but other than that, the whole week is wide open to whatever it is you want to do--visits from family and friends, lunches out, walks on the beach, manicures and pedicures, etc. 

* Trips to the pharmacy stop and instead, the nurse or doctor brings your medications to you. 

* Trips to the medical equipment stores stop and instead, everything is delivered (and paid for by hospice!) to you--durable medical equipment, walkers, wheelchairs, etc. 

* In other words, hospice acts as home health care so that our mom wouldn't have to spend four, six or even twelve hours a week in doctor's offices and at the hospital. 

* Hospice is about making your quality of life better by reducing the pain and suffering. 

In our mother's case, what we are seeing is that chemotherapy treatments during those weeks she has them renders her unable to walk, eat well, hydrate, and stay awake. Her body essentially shuts down and for three to five days after treatment, her quality of life plummets. 

In the two and a half weeks since she's given her body a break from chemo what we have witnessed is quite remarkable: an increased appetite along with joy and delight in eating; one nap on some days and no naps on other days; often walking without assistance and with a cane instead of a walker for short distances; she has read an entire novel in a week--one that she has struggled to read 10 pages of in the last 10 weeks; she is watching tv and movies; enjoying outings (see pictures) and above all else--her sense of joy and enthusiasm for living has returned.

As we continue on this journey, we ask for your prayers for our whole family and especially for our mother for discernment and clarity as we balance the delicate decisions around quality of life vs. quantity of time, as we balance continuing with chemotherapy vs. stopping the treatments that cause her so much suffering. 

When I toss and turn at night over something that troubles me, I often turn to one of my favorite poets, David Whyte, and so I share one of my favorites with you as I sign off:

Enough
     --by David Whyte

Enough. These few words are enough.
If not these words, this breath.
If not this breath, this sitting here.
This opening to the life
we have refused
again and again
until now.
Until now.

--Sarah