A Beautiful Place to Die

My mother died on April 30 of this year. It was seven weeks from diagnosis to death.

I had just flown in from wherever I had been when I received a text from my dad saying that he needed to talk to me about something important. I was running around, rushing to another event, so I told him I would call when I was finished.

When we spoke later that evening, he told me that my mom had not been acting like herself.

Having grown up as the grown-up in the family, I wondered whether they had argued or whether something else had happened. I wasn’t sure.

But as he began describing her symptoms, I felt a tightness in my chest.

My mother was my world and my heart. She was the strongest woman I had ever known. She had served in the military and believed there was a place for everything and that everything belonged in its place.

Suddenly, she was putting towels in the refrigerator.

I immediately called my best friend, a public health nurse in Alameda County. We call her our night nurse. I ask her every health-related question I have, whether she knows the answer or not.

She asked me many questions, most of which I could not answer. Together, we began narrowing down what might be happening.

Had my mother experienced a small stroke? Was she showing early signs of dementia or Alzheimer’s?

I added my dad to the call, and we agreed on a plan. He would call the doctor’s office first thing in the morning and insist that my mother be admitted for an MRI.

They had already asked for one, but the doctors did not want to do it. They believed it might be an unnecessary procedure.

The next morning, I learned that my parents had successfully advocated for the MRI.

Later that day, I was once again rushing to an event. I grabbed my shoes and my speech, smoothed my skirt, and began walking out the door.

My phone rang.

When I answered, all I heard was sobbing.

They had found a mass in my mother’s brain.

My mom was on the phone, so I had to explain what was happening.

“Mom,” I said, “they found a tumor in your brain.”

“Oh,” she said, almost childlike.

This woman I had always known to be so capable and intelligent suddenly seemed different. I could not tell whether she understood what I was telling her or was completely unaware of what was happening.

Either way, it was terrifying.

The next seven weeks were a war wound.

It began with learning how to rearrange our lives.

My mother had always been the caregiver in our family. As the daughter, I had of course been raised to know how to care for others, but my mother had always led the way.

My dad had recently developed a chronic spinal condition. He needed medication and was constantly uncomfortable.

My mother made sure he attended his medical appointments. She made sure he completed his physical therapy and took his medication at the right time, with the right food.

For months, she had been trying to convince him to consider surgery and reassuring him that the doctor probably would not kill him, as he feared.

Now my mother was the one who needed care.

We quickly discovered that she needed it around the clock.

She became disoriented very quickly. She would go outside looking for the bathroom.

She had always moved silently, which meant we had to adjust the way we paid attention to her. One moment she would be nearby, and the next we would look up and find her outside beside the swimming pool.

We all had to learn how to pay close attention to the woman who had always paid such close attention to us.

A week earlier, I had launched an organization focused on building Black political power. Everything had to be placed on hold.

I spent a week in Northern California cooking, cleaning, and talking with relatives about what was happening, even though I had no answers.

I tried to soothe my father as he faced the possibility of losing his partner of more than 30 years far earlier than he had imagined.

I had to teach him how to use the washing machine and the dishwasher.

We also had to find a doctor. Internet searches are not especially helpful when someone you love is suffering and you cannot determine who is truly an expert or who will be best for your loved one’s particular condition.

One day, my mother was walking and talking. The next day, she was not.

A scheduled MRI became a rush to the emergency room. Her brain was bleeding, most likely because of the tumor, and she lost consciousness.

She needed emergency surgery to stop the bleeding and drain the fluid building inside her brain. She needed a shunt installed, followed by another MRI under sedation.

We spent four weeks in the hospital, including two weeks in the intensive care unit.

We met new doctors and nurses. We met families, some of whom had stories of recovery and others who were losing the people they loved.

Every moment in a place like that is uncertain. It is a roller coaster.

Some days, my mother was lucid and completely herself. On other days, she was unconscious or sleeping.

For four weeks, we had no real answers about what was happening.

Then the doctor told us that my mother was dying. There was no treatment she could survive that would address both the localized cancer and the cancer that had spread across her brain.

That was the day our lives changed forever.

My mother was only 63 years old. She did not have a wrinkle in sight.

Moving her into hospice care was unlike anything I had ever experienced.

We all know that we are eventually going to die, and we do many things to keep that day from arriving sooner than we think it should. We use Botox. We exercise. Or, like my partner’s 95-year-old grandmother, we eat nothing white.

But hospice was an entirely new dimension for me.

For our family, hospice became about embracing death and embracing the life that remained with as much agency and dignity as possible.

It was not possible for my mother to die at home. My parents lived three and a half hours away. My dad did not know how to be a caregiver, and we could not imagine having someone move into their home so far from the rest of our family’s support system.

Working closely with the palliative care team at UCSF, for whom I will always be grateful, we were welcomed into Zen Hospice Project.

Zen Hospice was established in the mid-1980s to provide dignified care for people dying on the streets and in single-room-occupancy hotels. During the height of the AIDS crisis in San Francisco, it cared for people with AIDS whose families had abandoned them.

When we entered Zen Hospice, I am fairly certain I cried with relief.

My mother did too when she arrived later that day.

I have a photograph of her wearing one of her signature wide-brimmed hats. She had begun wearing them because she was self-conscious about the stitches on the top of her head.

She was also wearing a T-shirt that said, “Phenomenal Woman.”

It was the first time in four weeks that she had worn ordinary clothes.

Hospitals are difficult environments.

I am grateful for every doctor who explained what was happening to my mother for the hundredth time and for everyone who helped ensure that our family did not kill one another before she died.

I am also grateful to every overnight nurse who chased my mother through the halls of UCSF during her manic episodes.

At Zen Hospice, however, my mother had a chef who would prepare anything she wanted. She had her own bedroom overlooking the garden. Only six residents lived there at a time.

There were no fluorescent lights and no constant noise, so she could actually sleep.

Zen allowed us to experiment with what worked best for my mother and respond to whatever she needed in a particular moment.

Sometimes that meant cannabis oil because she was not eating or needed help sleeping.

Sometimes it meant a signature lemon pound cake to satisfy her sweet tooth.

At other times, it meant allowing her a glass, or three, of wine, as she had been accustomed to drinking for the previous 30 years.

Sorry, Mom.

The hospice was also close enough that I could visit whenever I needed to.

Hospice was not only for my mother. It was for our entire family.

We all became intertwined, and each of us received the care we needed to embrace the moment we were living through.

The volunteers learned that my mother loved having her nails done, so once a week, they painted them.

She was deeply self-conscious about her appearance. She had the scar and the shunt on her head, dry skin, and tape marks across her body.

We brought in a stylist to help her feel beautiful again.

I spoke with the hospice nurses at least once a week to receive updates about her prognosis.

My mother always had a big smile for everyone she loved, and even for people she did not know. But there were also times when she withdrew deeply into herself.

One day, a hospice nurse told me that my mother had sobbed the night before.

She had remembered that her own mother was dead. She had also become conscious of the fact that she herself was dying.

“I’m not ready to die,” she told the nurse.

They sat together and held one another in the middle of the night.

What would we have done without a caregiver there for my mother at the moment she needed someone most?

My mother died on April 30, seven months ago last week.

I was holding her hand when she took her final breath.

I imagine that is how it should be: taking your last breath on your own terms, surrounded by the people you love and who love you.

I miss my mother terribly.

When she was sick, I felt as though every cell in my body was splitting apart.

But I can stand before you and say that we encountered angels through the care our family received.

My mother was able to die with dignity.

Care and caregiving were essential to our experience, but it is not the experience many families have across this country.

I spend most of my days trying to move people to act around the issues that affect our collective well-being.

I have done that through the Black Lives Matter Global Network, working to ensure that Black people can live full and dignified lives without having those lives cut short by inadequate policing, disinvestment, criminalization, or the many other forces that treat Black lives as disposable.

Before Black Lives Matter, and still today, I worked with the National Domestic Workers Alliance, one of the country’s leading organizations fighting for the rights and dignity of caregivers, including childcare workers, elder-care workers, house cleaners, and people who support the independence of those with disabilities.

Domestic work and caregiving in this country are rooted in the legacy of slavery. The remnants of that terrible institution remain within the industry today.

We work to ensure that caregivers are also able to care for themselves.

We fight for caregiving to be recognized as work and for that work to be paid as though it is valued.

We work to make care affordable and high-quality while ensuring that caregiving itself is valued for the extraordinary contribution it makes.

In the 1930s, domestic and agricultural workers were excluded from basic labor protections granted to other workers.

That exclusion resulted from a racist compromise between union leaders and Southern lawmakers who were unwilling to give Black and Brown workers, who made up the vast majority of those sectors, the same rights and protections as white workers.

Today, we fight state by state to win rights and respect for the people who care for those we love most.

We have won protections for caregivers in eight states across the country.

My family could not have survived without the care we received.

Caregivers are the backbone of our society and our economy.

Yet many caregivers do not have the protections or wages they need to support their own families.

More than a million caregivers in this country remain excluded from basic labor protections, even though caregiving is one of the fastest-growing sectors of our economy.

Every eight seconds, someone in the United States turns 65, and we do not have enough caregivers to support our aging population.

My mother was not old.

She was 63. She had not experienced a long illness. She had not even retired.

She and my dad had just purchased a home in Northern California where they planned to spend the rest of their lives together. They were beginning to discuss retirement now that both of their children were grown and at least one of us was self-sufficient.

Yet more and more people like me are caring for children while also caring for aging or seriously ill parents.

My story resembles many others. An illness appears without warning and overturns even the best-laid plans.

But my family had resources.

My mother was meticulous about planning, and that helped when she could no longer make decisions for herself.

We did not encounter problems with insurance companies refusing to cover procedures, even though both of my parents received coverage through the Affordable Care Act.

We were admitted to a facility with a waiting list several weeks long because a nurse recognized me and respected my work.

She pulled strings to get us there.

My family lives here. We are fourth-generation San Franciscans, a quickly disappearing group.

We all lived within two hours of the place where my mother came to die.

I had airline miles and enough money to fly her twin brother from Georgia to San Francisco twice so he could spend his best friend’s final days beside her.

My family was more than fortunate. We had privileges.

Many people who need care do not have access to those privileges. That is unfair, and it is criminal.

My mother’s death has affected me in ways I still cannot fully understand.

But I can say that everything I needed was available to me.

What happens to those who do not have those resources? How do they die with dignity? What do their families do?

This work has always been personal to me.

My mother cleaned houses when I was young to make ends meet. My grandmother worked as a caregiver for one family for 30 years.

The work was always personal, but it became even more personal when I had to depend on caregiving myself.

I needed support while caring for my mother. When she was dying, I could not be beside her every second, no matter how desperately I wanted to be.

Bless the caregivers who held her while she cried.

Bless the caregivers who chased her through the hospital during the manic moments of her illness.

Caregiving is the work that makes all other work possible.

Why, then, are caregivers not cared for in return?

The home where my mother died closed shortly afterward. She was its final resident.

A few weeks after her death, I encountered her caregivers at a film festival honoring another friend who was dying of cancer.

My friend Alana fought a rare form of gastrointestinal cancer for two years before dying a month ago.

When I saw my mother’s caregivers, I held them for a very long time.

They told me they had received only a few weeks’ notice that they would soon lose their jobs because the house was closing.

I recently learned that the building has been placed on the market.

That breaks my heart.

I had only just begun gathering the strength to return, complete the volunteer program, and give back some of the care my family had received.

Now I cannot.

It raises an important question: Why is our care infrastructure left to nonprofit organizations dependent on philanthropy and goodwill?

Why is it not embedded within the infrastructure of our cities?

My friend Alana received hospice care at home. Her experience was completely different from my mother’s.

The caregiving was more formal and more isolating. There was no care for the family, only the minimum patient care permitted by her insurance.

Even after her death, I wished she could have received the same level of care my mother did.

This is why movements matter.

“Movement” has become a buzzword over the last several years. People often ask how they can simply add water and create one.

I keep telling them that you cannot add water and start a movement.

Movements are not built from hashtags or Twitter followers. They are not built by small groups of people who already agree with one another.

Movements are built by people who care.

They are built by people directly affected by an issue who come together to ask, “Why is this happening to us, and what are we going to do about it?”

Within movements, we learn how to work across our differences for the sake of our collective liberation.

We learn how to leave no one behind. We learn how to interrupt the forces designed to divide us.

I have been part of the domestic workers movement for about five years and other movements for nearly 20 years.

Do not let the baby face fool you.

But I walked unknowingly, and somewhat unwillingly, into the movement for dying with dignity.

It is a movement seeking to transform how we understand death’s place in society. It works to break the silence and isolation surrounding dying.

It cares for people at the moment they most need and deserve care.

Yet families, caregivers, and those of us living on both sides of that relationship do not have what we need to die with dignity or support a dignified death.

Here is my call to action: Keep going.

Do not allow caregiving to remain available only to people with financial resources and access.

Do not allow caregivers and their essential role to be erased.

Bring the different parts of this movement together so we can become stronger and more dangerous together.

The dignified dying movement, the domestic workers movement, the movement for affordable healthcare, and the movements against racism, sexism, homophobia, and ableism are all connected.

We desperately need one another.

Caregiving is facing a crisis in this country, and our individual voices are not loud enough.

This room must be multiplied by a thousand, a hundred thousand, and a million.

We need one another to succeed.

We must change the composition of rooms like this and reconsider who is sitting in them.

The people doing the work must occupy these seats and help us imagine what a caring economy can become.

We have no choice but to prevail because the dignity of every one of us is at stake.

Every one of us will die someday.

Every one of us needs and deserves care.

What is at stake is our ability to reach toward something that is our birthright.

Please keep going.

Thank you.