On Death, Dying, and Disbelief


by Nicole Carr

As humans, most of us—especially after the last couple of pandemic years—have experienced the loss of a loved one. As humanists, we know how difficult it can be to grieve as a nontheist in a world that is designed for the religious. Many of the rituals our society uses to mark the end of life are built around belief in the afterlife, and that can leave nontheists feeling stranded and alone at a time when they especially need support. Candace R. M. Gorham offers that support with her book On Death, Dying, and Disbelief, published last year by Pitchstone Publishing.

When my mother died (much too young), I was still a believer. I had already stopped regularly going to church, but I believed in god and the sentiments that the people around me uttered were actually comforting: “She’s in a better place,” “You’ll be together again someday,” “She’s looking down on you.” I knew the rituals and they worked for me.

Twenty-five years later, when my husband died (again, much too young), I hadn’t found humanism yet, but I definitely considered myself a nontheist. Grieving was different this time, and I needed to find new ways to mark his death and find a way to live without him. I wish I’d had this book then.

As a licensed mental health counselor and a former ordained minister turned atheist activist, Gorham is uniquely suited to write this book. She also draws on her personal experience with grief. As she writes in the book’s introduction,

The ten tips I offer in this book were selected based on common questions and conversations I have had with nontheists and are things that have helped me personally. In this regard, I combine my personal awareness of issues unique to nontheists with my professional expertise in mental health counseling, and I try to address this deeply personal subject with the tenderness of one who can fully commiserate with the target audience.

And she succeeds. The book is deeply personal and yet still applicable to the reader’s own situation and experience. The chapters are organized as ten tips, and each one begins with a poem written by the author when she was coping with her own grief.

On my own journey from religion to nontheism, the idea I found hardest to let go was that loved ones who had died were in some other—better—place, where they were somehow watching over me. I held on to that idea tightly after all my other religious beliefs had fallen away. In fact, I held on to it for quite a while after I called myself non-religious. Gorham’s first chapter deals with just that concept, and how to reconcile a sometimes deep desire to believe that a loved one is still with us with our understanding that there is no heaven.

There’s a lot of important advice included about taking care of yourself physically, psychologically, and emotionally. There are the basic things, of course: eating, drinking, sleep, exercise. But there are also tips about things you might not think about in the midst of grief, like the importance of establishing new routines to help you move forward.

Gorham also includes information about when to seek out a therapist, the beneficial possibilities of medication, how to identify when grief has passed into a danger zone of potential self-harm or pathology, and the healing qualities of nature to help create a “restorative environment.”

And there’s a whole chapter on the need to “Cry. Cry. And then cry some more” which the author describes as “the most cathartic activity I have ever done.” Since humanists tend to like science and evidence, Gorham details, for instance, studies that point to the beneficial hormones and proteins that crying produces, along with the stress-relief and cathartic effect of the physical act.

In the same chapter, however, she reminds readers to “embrace the times when they are not crying” and find moments of enjoyment in the midst of grief. After all,

As a nontheist, you very likely do not believe that your loved one is watching you from the great beyond. So, it is not like they are there judging the extent of your grieving. And you are not competing with friends and family to see who can grieve the hardest and longest.

One powerful chapter is Tip #8: Do something in their honor. Gorham sets out several options for rituals that one can create to remember and memorialize a deceased loved one. In some humanist circles, “ritual” can be a bad word, but many people do feel a need to mark an important loss. As Gorham writes,

As nontheists, we might not like the word “ritual” because of its close ties with religion. However…synonyms include custom, fashion, habit, pattern, practice, and second nature. As you can see, a ritual is certainly more than just a religious activity. Rituals are extremely powerful tools that, when controlled and properly applied—as opposed to letting them control us—can provide the most healing of all of the activities, tips, actions, and recommendations I discuss in this book.

Her suggestions range from “Visit the Gravesite” to “Complete a Project.”

This is a compact book at just 152 pages, and its structure is perfectly suited to dipping in to find just the right tip for where you are in the process of grieving. With a final chapter devoted to advice for people who want to support those who are grieving, the book covers a lot of ground.

Everyone will find sections of the book useful to them. For instance, Gorham stresses the restorative power of nature, but not being an “outdoorsy” person, that advice doesn’t really speak to me. Instead, the sections that resonated most with me were Tip 8 (on ritual) and Tip 9 (on crying), described above. For others, it might be the opposite.

For me, the best passages are the ones that remind the reader that, though we must grieve, grief is not all there is:

You are alive and you must keep living. If you wake up crying, cry while you are getting dressed, cry while driving, cry when music is playing, cry anytime you are alone, cry in the shower, cry in bed, cry at meal time. If you cannot help yourself, then cry, cry, cry. However, it is also absolutely critical that you let yourself experience joy whenever possible….When you are able to break free from its hold and peek your head above water for even ten minutes to breathe the pure air of laughter and smiles, you must take it in as fully as you can.

Most importantly, Gorham stresses that each journey is unique and each person grieving is on a different timeline. The most repeated advice in the book is to be patient with one another—and yourself.

Complete Article HERE!

Oregon ends its residency rule for medically assisted suicide

The state Capitol in Salem, Ore.


Oregon will no longer limit medically assisted suicide to the state’s residents after a lawsuit successfully challenged the restriction as unconstitutional.

In a settlement filed in U.S. District Court in Portland on Monday, the Oregon Health Authority and the Oregon Medical Board agreed to stop enforcing the residency requirement and to ask the Legislature to remove it from the law.

Advocates said they would use the settlement to press the eight other states and Washington, D.C., that allow terminally people to end their own lives with medical help to drop their residency requirements.

“This requirement was both discriminatory and profoundly unfair to dying patients at the most critical time of their life,” said Kevin Diaz, an attorney with Compassion & Choices, the national advocacy group that sued over Oregon’s requirement.

Laura Echevarria, a spokeswoman for National Right to Life, which opposes such laws, warned that, without a residency requirement, Oregon risked becoming the nation’s “assisted-suicide tourism capital.”

But Diaz said that was unlikely, given safeguards in the law, such as the requirement that physicians determine whether patients are mentally competent. He said it was extremely difficult for terminally ill people to make extended trips to another state and that many people would want to die in the presence of loved ones near home, not in another part of the country.

“There’s no tourism going on,” Diaz said.

Enacted in 1997, Oregon’s first-in-the-nation law allows terminally ill people deemed to have less than six months to live to end their lives by voluntarily taking lethal medications prescribed by a physician for that purpose.

Compassion & Choices sued on behalf of Dr. Nicholas Gideonse, a Portland family practice physician and associate professor of family medicine at Oregon Health and Science University. A longtime supporter of medical-aid-in-dying laws, Gideonse had been unable to write prescriptions for lethal medication for patients who lived just across the Columbia River in Washington state.

While Washington has a law similar to Oregon’s, healthcare providers willing to participate can be difficult to find in the southwestern part of the state, where many hospital beds are in religiously affiliated healthcare facilities that prohibit assisted suicide. Requiring his patients to find other doctors to provide assistance in ending their own lives can compound their suffering, Gideonse said.

“Any restriction on medical aid in dying that doesn’t serve a specific medical purpose is difficult,” Gideonse said Monday. “In no other way is my practice restricted to Oregon residents, whether that’s delivering babies in the past or other care that I provide.”

The lawsuit argued that the residency requirement violated the U.S. Constitution’s Commerce Clause, which gives Congress the right to regulate interstate commerce, and the Privileges and Immunities Clause, which forbids states from discriminating against citizens from other states in favor of its own citizens.

The Oregon Health Authority and the medical board declined to comment on why they settled the case. The state attorney general’s office did not immediately respond to an interview request.

Under Oregon’s law, terminally ill patients must make two verbal requests, at least 15 days apart, to their doctor for lethal medication, as well as a written request signed in the presence of two witnesses. The attending physician and a consulting physician must confirm the patient’s diagnosis and prognosis, and determine whether the patient is capable of making healthcare decisions; if either doctor believes the patient to be suffering from depression or another mental disorder, they can refer the patient for a psychological exam.

Since the law took effect, 2,159 people have used it to end their lives, according to data published last month by the Oregon Health Authority.

California, Colorado, Hawaii, Maine, New Jersey, New Mexico, Vermont, Washington state and Washington, D.C., have approved similar laws, all with residency requirements. Montana’s Supreme Court has ruled that state law does not prohibit medical aid in dying.

National Right to Life is concerned that people might be able to travel to Oregon without having much of a relationship with a doctor in the state, thus chipping away at protections limiting the use of the law, Echevarria said.

“The hope is that doctors will continue to evaluate patients, but it certainly creates a situation where there could be more abuse of that law,” she said.

Complete Article HERE!

A ‘death doula’ explains how to transcend your fear of dying so you can truly live in the present

Death doula, Tree Carr, explains what she’s learned as an end-of-life guide and how to overcome fear of death so you can live a life with no regrets


Death doula Tree Carr’s insight into peoples’ final days means that she’s more in touch with mortality than most. Supporting people on their final journey may sound like a grim task, but for Tree, this calling has taught her lessons on how to truly live. Lessons which she has shared with woman&home…

Death is the great unknown and the idea of having to face up to our own mortality and how we’ll be remembered after death can feel more than daunting. However, by learning to interact with this inevitable experience with a positive and supportive lens—you can stop being scared of it. In doing so, you focus on living a far better life, with no regrets.

The word alone can evoke terror, superstition, grief, feelings of loss of control, and existential dread. The sobering reality of death is often kept swept under the carpet and considered taboo for most conversational circles. 

In our long timeline of humanity, we’ve sought to cheat it; delay it; bargain with it; or transcend it. Its great and elusive mystery has captivated the mystics and has raised the eternal question that science has yet to answer—does consciousness carry on after the body expires? No matter what your ontological or epistemological worldview on death is, it’s safe to say that most people are scared to death of dying.

What is a death doula?

A death doula is an end-of-life guide who holds compassionate space for a person journeying through the psychological, emotional, spiritual, and practical terrains of death and dying. The word doula is from ancient Greek, meaning, ‘a woman who serves’—although the role is far from being gender-specific.

I felt the calling to become a death doula in my early forties after a lifetime of synchronistic events all revolving around death. From a near-death experience of nearly drowning in the Atlantic Ocean at the age of four, through to many serendipitous moments involving being at the right place at the right time when strangers on the street have been close to death.

“You can stop being scared of it. In doing so, you focus on living a far better life, with no regrets.”
— Tree Carr

What I’ve learned as a death doula

In my work as a death doula, the most challenging aspect that I witness a dying person go through is surprisingly not the biological deterioration of the body (there is plenty of palliative care pain control for that). In fact, it is the emotional or psychological loss of the sense of ‘self ‘ that appears to be the most painful.

From what I’ve personally observed, at the end of life many people experience a long, slow, and winding loss of who they knew themselves to be. They are thrown into the existential dark night of the soul asking the big questions: What am I? Who was I? What was this all for?

As a result, this can propel the dying person into depression, grief, isolation, and anxiety. This is where the role of a death doula can be very helpful, traversing alongside a person as they lean into the fears and trepidation of the big D!

Certainly, overcoming the fear of death it’s not a ‘one shot’ remedy most of the time and can be a gradual unfolding that combines a mixture of practices and experiences.

How I help people overcome fear of dying

Person contemplating life

Surprisingly enough, my death doula work isn’t always for people who are actively dying. I have folks getting in touch who aren’t dying at all, but they have anxiety around death. Perhaps they are coping with the loss of a parent or struck with grief from experiencing the death of another person they knew.

I guide my client’s through navigating death phobia, tackling grief illiteracy, bereavement catharsis, and reframing the narrative around the topic and therefore moving into a peaceful acceptance of death.

Part of the journey can involve meditations on death, closure techniques, and emotional integration through a variety of creative processes—letter writing, drawing, conversation, and more.

Here are some simple practices I encourage my clients to engage in each day to help overcome the uncomfortable feelings around death…

Observe the ‘little endings’

One way you can start to journey into your fear around death is to have a daily practice where you bear witness to the ’little deaths’ all around you every single day.

It’s a form of mindfulness with a central focus on the theme of endings. When you meet a friend for coffee and then you both say goodbye and they walk away and leave. This is a little ending. When you lose your mobile phone. This is a little ending when the sun sets every evening. This is a little ending.

Allow yourself to hold awareness for these little endings and be with any emotions rising up. Begin to surrender to the process of not holding onto the little endings but allowing them to release. 

Engage the art of non-attachment, seeing that the only constant, is change. Regular meditation practice is also a good habit because it will help to stabilize a conscious state of equanimity through experiencing endings.

Watch the cycles of nature

A pathway through a dark foggy wood

Another helpful tip is to sit and be with nature, observe and be mindfully present. Being closer to nature connects a person to the reality of impermanence. Observing the shifting and changing of the seasons. The growth, decay and return to Spring Equinox. This forever cycle of life, death, and rebirth.

Observe yourself falling asleep

Something else that can help out is sleep. The threshold states of sleep are liminal experiences just as death can be. When one becomes comfortable in these altered sleep states it can help ease the fear of death.

Make space in your bedtime routine for observing this. As you fall asleep every night and you hover on the liminal threshold of the hypnagogic state you can practice and surrender to the idea of your own death. Allowing yourself to relax and surrender to sleep from the cusp of fatigue is a surprisingly easy and transformative technique.

Attend a Death Cafe

Death Cafes are safe spaces to gather and meet to talk with other people about all things death and dying over coffee, tea, and cake. Whether you share your own experiences around losing a loved one or a beloved pet. Or maybe you are navigating your own end-of-life journey, Death Cafes are death-positive, compassionate, non-biased, and non-judgemental events.

In the many Death Cafes that I’ve facilitated worldwide, I see the boundaries of culture, gender, age, race, and religion dissolve as we all come together in solidarity over the one thing we all have in common—the fact that we will all one day die.

Living a life in fear of an inevitability that we all share can prompt or worsen difficult emotions, like anxiety, depression, panic attacks, and conditions like sleep anxiety
and insomnia.

However, by embracing the awareness of this inevitable life process, through positive and supportive ways, can not only help us live a more enriching life—but also help us to live one with no regrets.

Complete Article HERE!

For end-stage dementia, Medicare can make hospice harder to access

The number of elderly Americans with the disease is projected to double by 2060. Many will need hospice care but the program will need reform to aid them, experts say

By Emily Harris

Janet Drey knows how hard it is to predict the future, especially the future of someone who lives with dementia. In 2009, a neurologist diagnosed her mother, Jean Bishop, then age 79, with frontotemporal dementia, a disorder that irreversibly damages the front and sides of the brain.

When Jean could no longer walk, speak or feed herself a year later, doctors confirmed that she had less than six months to live, Drey recalls. The prognosis fit Medicare’s definition of being terminally ill. That prognosis qualified her for hospice care, an interdisciplinary approach that prioritizes comfort and quality of life in a person’s final months.

The streamlined access to doctors, nurses, social workers and medications covered by Medicare, quickly became essential to Jean and her husband, and made it possible for them to continue living together on their 40-acre farm in rural Iowa.

But as can be the case with dementia, Jean’s decline was less precipitous than expected. When she was alive after six months, her physicians took another look at her condition. It seemed to be deteriorating, so they recertified her for hospice.

After several more months of care, Jean’s condition stabilized. She was still living with a progressive disorder, but Medicare’s coverage of her hospice costs was stopped because her eligibility for it was tied to her condition worsening.

Without it, Jean’s husband, Leonard Bishop, in his mid-70s at the time, was on his own most days to care for her: lifting her out of bed and placing her before her favorite south-facing window, helping her bathe and eat, and managing her pressure sores.

Inevitably, Jean’s dementia worsened. When Leonard found Jean unresponsive one morning in 2011, doctors deemed again that she had less than six months to live. She was re-enrolled. This cycle in and out of hospice occurred three times over three years.

Exhausted, Jean’s husband almost didn’t enroll her the third time, asking Drey and her siblings, “Well, if they’re just going to discharge us again, should I even do this?” Jean died almost exactly six months after her third admission.

Jean’s experience isn’t an outlier.

Based on a recent study, Medicare’s hospice regulations are not working as intended for many people with dementia, says Elizabeth Luth, a sociologist at Rutgers University who studies end-of-life care. According to her study of 3,837 hospice patients with dementia, about 5 percent are pulled from hospice when their condition seems to have stabilized.

Plus, the number of Americans over 65 with dementia is projected to more than double to 13.8 million by 2060. Many will need hospice care. “It’s worth asking the question, ‘Should we reevaluate?’ ” Luth says.

The Centers for Medicare and Medicaid Services (CMS) has been introducing new payment structures, pilot programs and quality metrics to address weaknesses in the hospice admission criteria. None of their solutions, however, have modified the six-month benchmark — that would require a change in law, according to a CMS spokesperson. With no amendment to the six-month rule in sight, hospice and palliative care workers are pushing for a different end-of-life model for people with dementia.

Congress created Medicare’s hospice benefit in 1982 to provide dying patients with medical, social and psychological support. To keep costs of the new benefit down, it capped the definition of terminal illness at six months to live to balance money spent on hospice care with expenses saved from avoiding costlier hospitalizations that often occur at the end of life.

For a couple decades, the six-month benchmark worked. Most early hospice patients — over 75 percent in 1992 — had cancer. Doctors can predict with relative accuracy when a patient with advanced cancer has less than six months to live.

Today, the average hospice patient is very different. About half have dementia, according to a study published last year. And as Jean’s family experienced, predicting when a patient with dementia has only six months to live is difficult.

“Dementia clearly does not fit the disease trajectory of 70s cancer patients,” says Joan Teno, a health services researcher and former hospice medical director

Theoretically, up-and-down declines and incorrect prognoses shouldn’t be a problem. Doctors can recertify hospice patients who are alive after six months as still terminally ill, as Jean’s physicians did during her first hospice stay, and Medicare will continue to reimburse for that extra time.

But reality can be more complicated, says Krista Harrison, a health services researcher at the University of California at San Francisco. Hospice programs with too many patients receiving care for more than six months raise some flags for Medicare, and are sometimes audited as a result — an expensive, time-intensive process. If an audit uncovers seemingly inappropriate use of the benefit, the hospice might have to repay money that Medicare reimbursed, which can run up to millions of dollars.

Sometimes, people with dementia can stabilize while they are receiving hospice services, as Jean did. “For those people living at home, there’s not really any other services out there that provide the same level of support,” says Lauren Hunt, a former nurse practitioner who now researches end-of-life care at UCSF.

So when patients enroll, they may finally have the care they needed all along and their condition can get a little better or at least stabilize. This can then make them ineligible for Medicare support going forward.

In the end, Medicare’s penalties leave clinicians and hospice organizations in what Harrison calls “an impossible moral quandary,” with the needs of their patients with dementia on one side and Medicare’s six-month regulations on the other.

“We need to update the payment models, and especially hospice, to really reflect this changing disease trajectory of an aging society,” Teno says. “What I’d rather see is some flexibility.”

CMS began to update its payment models in 2016 after years of warnings from Medicare’s advisory body that some hospice organizations were using the benefit for financial as much as for care reasons.

The payment reform has Medicare reimburse more (about $200 for routine care) for the first 60 days a person is enrolled in hospice and about $160 after that, until care again intensifies at the end of life. That scheme aligns better with hospice’s U-shaped pattern of costs. Before that, when Medicare paid a flat rate, it was easier for financially driven organizations to enroll patients with unpredictable declines too early and make extra money during their lengthy middle periods.

Another new model started on the first day of 2021. It’s one that applies to people enrolled in Medicare Advantage, the insurance people over 65 can opt for instead of Medicare. This pilot program is meant to smooth fragmentation in hospice care, previously covered only by Medicare, for the roughly 40 percent of older Americans with Medicare Advantage.

Beginning this year, Medicare also introduced a quality metric that tracks the number of people unenrolled from hospice, giving CMS another way to keep tabs on organizations with too many people unenrolling from hospice.

Without a change in the six-month rule, however, many end-of-life care experts say Medicare should come up with a new rule to provide palliative care for people with dementia that focuses on pain and other quality-of-life issues, and that is tailored to the person’s needs earlier in their illness. More intensive hospice services would be added later.

“What makes sense is to have a different type of program that allows for a larger prognostic window, but that would also reimburse less than hospice does,” says Claire Ankuda, a palliative care physician and researcher at Mount Sinai.

Jean Bishop’s family agrees with that.

Several months into 2013, she had qualified again for hospice, her third go-round. A week before Christmas, the 83-year-old mother of 10 died, surrounded by her husband and children, four years after she had been diagnosed with dementia.

Because Jean’s disease unfolded slowly, it would have been helpful for her and her husband to have had consistent support from the start that eased into hospice care, Drey says.

Instead, Jean and her family weathered abrupt gaps at an already vulnerable time. For Jean’s husband, Leonard, one of the most devastating parts was the questions that would go unanswered between enrollments without the advice and help of hospice specialists: What the end would look like, and whether he would know what to do for Jean — and be able to do it.

“He had to work out in his head a scenario so that if something happened and it was a crisis, he knew how he would act,” Drey says.

During the periods that Jean was ineligible for hospice, he knew he would have to handle those crises alone.

Complete Article HERE!

In Difficult Cases, ‘Families Cannot Manage Death at Home’

Health care researchers argue that hospice facilities could better serve some terminal patients, and ease the burden on exhausted loved ones.

A hospice and palliative care center in Corvallis, Ore. Although most people say they wish to die at home, it’s not always the best course, some health experts argue.

By Paula Span

Where do people most want to be when they die? At home, they tell researchers — in familiar surroundings, in comfort, with the people they love.

That wish has become more achievable. In 2017, according to an analysis in The New England Journal of Medicine, home surpassed the hospital as the most common place of death — 30.7 percent of deaths occurred at home, compared with 29.8 percent at the hospital.

“It’s probably the first time that’s happened in the United States in modern times,” said Dr. Haider Warraich, a cardiologist at the Veterans Affairs Boston Healthcare System and an author of the study, published in 2019. Technically, the proportion was even higher, since some people who died in nursing facilities (20.8 percent) were long-term residents and the nursing home effectively was their home.

Dr. Warraich credited the change to the rise of hospice care, for which Congress authorized Medicare coverage 40 years ago. By 2019, more than half of Medicare beneficiaries who died were enrolled in hospice. “There’s been a cultural shift,” he said. “People don’t want to die in hospitals, and hospice helps make that possible.”

But not always.

When Lee Zeiontz was dying of lung cancer, she wanted to remain in her apartment on the Lower East Side of Manhattan with her cat on her bed and her neighbors stopping by. Lynda Hollander, her niece, hired a round-the-clock aide to supplement the hospice staff.

But Ms. Zeiontz’s pain eventually intensified and her older relatives were uneasy about administering morphine. “I think they were afraid of her dying at home,” said Ms. Hollander, a social worker in West Orange, N.J. They moved Ms. Zeiontz to an inpatient hospice unit at Mount Sinai Beth Israel Hospital, where she died a day and a half later, at 70.

Similarly, Alan Mironer had vowed to care for his wife, Lynne, with hospice help in their home in Edina, Minn., as she died of breast cancer. “He felt it was his responsibility,” their son, Mark, said. But as she weakened and became unable to walk to the bathroom, he said, “suddenly, it was so much more work to take care of her.” The elder Mr. Mironer, then 81, became overwhelmed.

Neighbors told them about a small hospice facility in Edina, with room for eight patients. Ms. Mironer spent her final week there, dying at 78.

Such experiences prompted an article this month in The New England Journal of Medicine that pointedly asks, “Is There Really ‘No Place Like Home’?”

The lead author, Dr. Melissa Wachterman, a palliative care specialist at Harvard Medical School, and her co-authors argue that alternative locations, including free-standing inpatient hospice facilities and hospice units within hospitals, could better care for some terminal patients with difficult symptoms and provide relief for exhausted families. They also contend that financial incentives play a role in where death occurs.

“There’s a lot of cultural pressure: ‘If you really loved this person, you’d keep them at home,’” Dr. Wachterman said in an interview. “We need to acknowledge that there are people whose needs are so great that families cannot manage death at home.”

Ninety-eight percent of hospice patients covered by Medicare receive what is called “routine home care.” The hospice organization sends nurses, aides, a social worker and a chaplain, in addition to drugs and equipment like a hospital bed, to the patient’s home. But it can’t provide 24-hour care; that falls to family or friends, or helpers paid out of pocket.

Often, that’s sufficient. But death can follow unpredictable trajectories, and some terminal conditions appear better suited to home death than others. Cancer patients have the greatest odds of dying at home, Dr. Warraich’s analysis showed. Patients with dementia are most likely to die in a nursing home, and those with respiratory disease in a hospital.

Some patients “may not need someone at the bedside 24 hours a day, but they need someone available 24 hours a day,” Dr. Wachterman said.

A handful of hospice patients receive “continuous home care,” which means nurses and aides are provided eight to 24 hours a day; this accounts for 0.2 percent of hospice days, according to the Medicare Payment Advisory Commission, an independent agency that advises Congress on Medicare issues. Another handful receive inpatient services in a hospice facility, hospital or nursing home.

But inpatient care is hard to secure, accounting for just 1.2 percent of all hospice days in 2019. To be covered under Medicare, the patient must be diagnosed with a symptom that cannot feasibly be managed in any other setting, and “that’s a pretty high bar,” Dr. Wachterman said.

The authors also argue that although Medicare pays more for inpatient care — $1,000 a day, on average, compared with $200 for home care — profit margins are higher at home. More than 70 percent of hospices are now for-profit agencies.

Rankings on the quality of hospital care like those published by U.S. News & World Report may also prompt hospitals, who want to keep their mortality statistics low, to discharge patients to home hospice.

Edo Banach, president and chief executive of the National Hospice and Palliative Care Organization, disputed the article’s financial assertions. “It’s not true that margins are necessarily higher for routine home care versus inpatient,” he said, attributing profit differences to the length of a patient’s stay rather than the setting.

Instead, Mr. Banach primarily blamed a fear of Medicare audits, which are not uncommon, for the infrequent use of inpatient hospice care. “Providers are very reluctant to use that benefit unless it’s also clear that they won’t be hurt by the government on the back end” and forced to return contested payments, he said.

Still, he said there was nothing in the authors’ recommendations that he fundamentally disagreed with, including their calls for changes like financial support for family caregivers who assist dying patients.

The authors also advocate expanded access to continuous home care and lower barriers to inpatient end-of-life care, in hospice facilities (the national organization estimates that about 30 percent of hospices have them) or hospice units within nursing homes and hospitals.

Of the three times I have accompanied family members to their deaths, we achieved the good-death-at-home paradigm once: My mother died at 80, with uterine cancer and after a major stroke, in her own bed. My father and I cared for her, with a hospice team. He died at 90, when sepsis overwhelmed him in a hospital before I could arrange for hospice care at home.

My sister’s death in 2015 showed the possibility of a middle ground. Disabled by late-onset Tay-Sachs disease, a neurological condition, she had been hospitalized with an uncertain prognosis. I was her health care proxy.

As she declined, she developed such severe pain that, between sobs, she was calling for our long-dead parents. I immediately enrolled her in hospice and began planning to move her back to her assisted-living facility, so that she could die in her own apartment.

It soon became clear that would be impossible. In the hospital, hospice nurses visited twice a day, constantly raising the dose of her morphine drip before switching to more potent medications. Having staff nurses always nearby allowed us to provide comfort, relying on a team we never could have duplicated on our own.

To its credit, the hospital understood our needs. It arranged for a private room with 24-hour access for my cousin and me. We turned off the TV and the intercom, dimmed the lights, played soothing music, allowed family and friends to come and kept the vigil. It wasn’t homey, but it was peaceful. My sister, just 62, died after 24 days in the hospital and 14 in hospice care.

Far more hospice patients and families could probably benefit from a similar option when home care proves too difficult.

“For many patients, ‘home’ isn’t the physical place,” Dr. Warraich said. “It’s a metaphor for a place that’s not medicalized, that’s comfortable and full of love.”

Complete Article HERE!

Caregiving Is The Ultimate Relationship Challenge.

Here’s How To Reclaim Your Love And Yourself Through It All

By Alena Hall

When two people commit to spending their lives together, it’s a moment of celebration. They often envision settling into a home together, maybe growing a family, going on adventures, exploring shared passions and hobbies, and celebrating major milestones. It’s a hopeful acknowledgement of all the wonderful things life has to offer—and often neglects the real and raw challenges that can arise along the way.

Becoming a caregiver for your partner is rarely included on a person’s list of future-facing fantasies, but it occurs far more frequently than most realize. An estimated 6.36 million U.S. adults ages 18 and older are considered caregivers to their partners, according to the Caregiving in the U.S. 2020 report from AARP and the National Alliance for Caregiving. And while specific care needs vary dramatically from couple to couple, one thing is certain: Caregiving can flip your existing relationship dynamic upside down.

As a society, we tend to push the topics of illness, dependency and ultimately death as far away as possible, as if these elements of the life cycle are somehow less valid or valuable than the ones we deem more positive and productive. But here at Forbes Health, we are holding space for this important narrative despite the discomfort and fear it tends to trigger.

It’s our goal to help and support existing caregivers who are looking to strike a better balance between their clinical responsibilities and their role as a loved one, as well as people who want to be better prepared for whatever caregiving experience may present itself in the future.

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Life Before Illness: The Foundation of Your Relationship

While some couples begin their life journey together with chronic illness or disability as part of the picture, those who experience it down the road are often surprised by how it affects the ways in which they think, feel, behave and communicate with each other. It’s easy to blame the caregiver experience for unwanted changes in the relationship, but that tendency misses the root cause.

The reality is the foundation of a relationship—before the introduction of an illness, deterioration or disability—provides the roots for how the care partner and care receiver experience life together thereafter. The couple’s dynamic is most often amplified—not modified—by the caregiving experience, explains Brenda Gurung, a dementia specialist, senior living expert and 2022 Forbes Health Advisory Board member. The relationship itself is their crystal ball.

“You have to ask yourself: Outside the caregiver experience, what kind of couple were you in the first place?” she says. “Alzheimer’s [disease] and dementia in particular open all the closets and pull out all the skeletons—everything repressed, everything you said you weren’t going to do or become—which then makes it an even more nuanced experience. Every relationship is truly unique in its partnership, its dynamic, your histories, how you come together, your gender roles and norms you do and don’t accept. That makes your caregiving experience entirely your own.”

Caregiving Is The Ultimate Relationship Challenge. Here’s How To Reclaim Your Love And Yourself Through It All

Linda Keilman, a gerontological nurse, Michigan State University College of Nursing faculty member and 2022 Forbes Health Advisory Board member, echoes the sentiment that a caregiving experience is very much dependent on the kind of relationship the partners have. “Relationships run the gamut as far as why people are together, and sometimes when a caregiving situation arises, it doesn’t fit in with the partner’s—or maybe even both of the partners’—visions or hopes for the future,” she says. “It’s not something one of them signed up for; it’s not in their plan.”

Plans aside, caregiving is one of the hardest jobs a person can ever take on, says Keilman. “People have no idea how difficult it is—it really is 24/7, and not everyone is cut out for it,” she says. “The more dependent they become, the more involved the caregiver has to be, and it gets to be very, very difficult. It’s a commitment that requires 100%, and it really is about a partnership.”

But no relationship is perfect, reminds Judy Ho, Ph.D., a triple board-certified and licensed clinical and forensic neuropsychologist and 2022 Forbes Health Advisory Board member. “And clearly something this stressful is going to bring out the biggest problems a relationship already had before reaching this phase,” she says.

Regardless of whether you’re at the beginning of your caregiver journey, reflecting on the early days or anticipating what could come, it helps to start from a place of honesty, grace and compassion with your partner and yourself, says Dr. Ho. “Any relationship, even one that’s really healthy, would have so many difficulties navigating this transition. But it can be an opportune time to address some of the things you maybe haven’t dealt with before to provide a better pathway to a closer, more intimate and more fulfilling relationship for both parties.” That work requires intent and investment, but can make the moments that follow significantly easier.

How Caregiving Shifts Partner Dynamics

Caregiving is a role and responsibility experienced by nearly every generation in the U.S., even when we focus on people caring for their partners specifically. For some, care needs are short-term, such as navigating recovery and rehabilitation from surgery or an acute illness. For others facing chronic, degenerative and terminal illnesses, they are indefinite. And the more a partner’s care needs evolve over time, the more the relationship between them and their caregiver can morph, placing greater emphasis on medical demands than love and intimacy.

“At the beginning, the [care] partner often says, ‘Yes, of course, I’ll step up to this [task],’ but they don’t always know the toll the process can take,” explains Gurung. They may make promises to provide care in certain ways—vowing to never move their partner to a nursing home, for example—when they aren’t necessarily in a place to make that commitment for the entirety of their journey. They also experience the immense emotional weight of questions like:

  • How long is this experience going to last?
  • What is the end going to look like?
  • Am I going to lose this person?
  • Will I be able to maintain my own identity at the end?

It’s likely that the couple will also experience significant role transitions as one partner grows increasingly dependent on the other, says Dr. Ho. “People settle into a certain dynamic, and when there’s a renegotiation of that role, it can be very difficult for both parties to mourn their old roles in the relationship and try to navigate the new ones because they’re not used to relating to each other in that way, and that can even cause conflict,” she says. “You have to really take your time to settle into it and mourn the past relationship and dynamic, and then try to have as much direct communication about those difficulties as possible so the relationship can stay healthy.”

Meanwhile, the caregiver is also providing the literal care their partner needs. Unsurprisingly, these mental, physical and emotional demands can compound over time to create a single, all-consuming experience that overshadows the other elements of life that help them enjoy who they are with the person they love most.

“The reality is that when you’re loving someone, there can be a blurred line between needing to provide medical care and wanting to be a supportive spouse or partner,” says Rufus Tony Spann, Ph.D., a licensed professional counselor and 2022 Forbes Health Advisory Board member. “Over time, we can get very routine in how we’re helping,” he explains. “It becomes more of a position or job that we’re taking on.” Meanwhile, Spann adds, the care receiver often wants to be seen and loved by their partner for who they were before the onset of their illness or condition—not as someone in need. 

When Caregiver Burnout Strikes, Love Suffers

As a person’s care needs span months and even years, likely intensifying with the progression of illness, their partner can feel over extended between the constant juggling act of managing their partner’s health, maintaining their own health and nurturing the relationship itself—and that’s just within the confines of the couple. Caregiver burnout, an overwhelming feeling of emotional exhaustion, is an all-too-common result of this constant strain.

“Care partnerships become all-consuming, and the least important person becomes the person providing the care,” says Keilman. However, caregivers don’t often realize this shift because they’re so focused on providing quality care to their partner, she adds.

Caregiving Is The Ultimate Relationship Challenge. Here’s How To Reclaim Your Love And Yourself Through It All

“I’ve heard some describe caregiving as caretaking, and there’s some truth to that—there’s someone taking your care from you so you can’t share it with other people,” says Belinda Gordon-Battle, a licensed clinical therapist and 2022 Forbes Health Advisory Board member. “I’ve also heard the term labor of love—labor being emphasized—because this is a job. A caregiver works every day, mentally, physically and emotionally, from the time they wake up in the morning until they can take a nap at night, because it is just a nap. Oftentimes, as a caregiver, you don’t get that continuous six, seven, eight hours of sleep, and it’s not quality sleep.”

The level of hyper-awareness that often comes with being a caregiver for a partner—managing their health status, daily care needs, doctor appointments, prescription refills, insurance company communications, home health aide schedules and more—can become incredibly taxing. And ultimately, both partners suffer.

“When a caregiver is getting to that burnout point and they’re getting really snappy, losing patience and willingness to listen, from the care receiver’s perspective, it can appear that they aren’t able to see where they are [in their own journey], and it feels more like an aggression toward them,” says Gurung. “I see it trickle down so often, especially around really intimate care like bathing assistance or bathroom assistance.”

“If I’m the caregiver and I’m in a space of frustration, there’s no way the actual care is going to go well, and then the care receiver doesn’t feel supported,” she adds. “And it’s emotionally removed—turn off the emotion to get the job done. When you get stuck in that place for too long, it’s harder to bring the partner element back into the mix.”

The role so many caregivers are forced to assume—that of a home nurse—further detracts from any potential for intimacy. “Care partners often learn what nurses learn in years of classes overnight out of necessity to keep their partner safe,” says Keilman.

“They’re given this title—you must be the nurse in the home—and that is such a demanding title,” echoes Gordon-Battle. “That’s when I see burnout occur—when we’re not realistic about what we actually can provide for our loved ones, when you cannot become the nurse or be the nurse.”

Burnout is a very real phenomenon in caregivers, especially in situations of chronic illness, explains Dr. Ho. It’s highly stressful, adds Keilman, which can cause physical symptoms like high blood pressure, headaches, gastrointestinal issues and even pain.

Depression is a major consequence as well. Research shows care partners experience depression at higher rates than non caregivers, says Keilman. “There’s so many emotional struggles—guilt, anger, resentment…they’re also experiencing anticipatory grief and loss, and they feel hopeless and powerless. A lot of times, the care partners themselves become ill,” she says.

As these elements pile up, little room is left for the focal point: the couple and the magic that holds them together. Moments of kindness and compassion, a sweet smile or a silly joke, a break in the flow of the day for human connection are all so easily replaced by clinical routines and stressful to-do lists that never seem to shorten. While love remains, it gets buried under the weight of everything else.

How to Stay Connected With Your Partner

There’s no denying how challenging it is to balance the scales of partner and caregiver, but there are practical steps care partners can take to regain and maintain their connection in their relationship amid stress, fear, grief and exhaustion. 

Person Over Patient

It’s easy to become so focused on caregiving that the care partner misses out on the simple moments they can still experience with their other half. “We really have to be careful because sometimes we forget to focus on our ability to just be there with them and that they’re still with us,” explains Spann. “We need to make sure we’re centering the person first and [be aware of ] how we’re treating them. Remember this is somebody we love and fell in love with—it’s less about them being a patient or someone who needs our help.”

Gurung agrees. “Make sure you offer them choices and ask their opinion. No matter what they can share, they can feel acknowledged and included,” shes says. “Assume the humanity and essence of the being you’ve always known and work with them from that place.”

This focus helps keep an important sense of connection intact, notes Gordon-Battle. “If you keep giving them their moments, looking at them eye-to-eye and bringing experiences you know they enjoy into that space, it makes the person still feel a part of the unit,” she says. “They’ll feel less like a problem and burden. That’s our caregiver responsibility—to make that human connection and maintain it through their illness.”

Learn More About the Ailment

“Education sounds boring and like work to the caregiver, but it’s so critical,” says Gurung. 

Take a dementia diagnosis, for example. “So much of society thinks dementia relates exclusively to memory and doesn’t know how much more it affects,” she says. “But getting some practical education [about the condition] is going to benefit your day-to-day life with your partner because it helps you meet them where they are.” And education comes in many forms beyond medical studies. “Watch YouTube videos, follow experts on social media, lean into whatever you enjoy so you can absorb the information,” she adds.

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Redefine Intimacy

“Some people get into a clinical routine of caregiving and forget that you can still have a level of arousal, desire, connection and touch,” explains Spann. “People still need that human component. It may be difficult to figure out how to do that when your partner has an illness or they’re going through something you find very technical, but when you’re with your partner and providing care, there are still things you can do.”

Spann encourages caregivers and their partners to look for times in which they can create romance or sensuality, even if it’s as simple as a caress on the hand or a stroke of the neck. “The level of touch doesn’t have to be erotic—it can just be enough to make the person feel human,” he says, and that same value applies to the caregiver.

Intimacy can take myriad forms, from touch to playing music to enjoying an activity together you previously found grounding, says Spann. Find what inspires a human connection, and let clinical needs take a backset, even if just for a brief moment.

Communicate With Your Entire Body

Many care partners and care receivers witness how much an illness can alter the ways in which they used to communicate with each other.

“In a majority of couples I’ve met who said, ‘I don’t know how to communicate with them anymore,’ it’s almost always because they’re only focused on verbalization,” says Gurung.

Instead, she suggests thinking about communication from a whole-body perspective. “I often find the visual aspects can really shift a couple, unless there are vision deficits, in which case they do other things.” She regularly recommends techniques like mirroring the other person, keeping word choice simple and being really expressive with body language to help overcome new communication obstacles.

Be Real With Each Other

Sugarcoating the situation with endless optimism can often backfire in caregiving situations. Despite the best of intentions, it’s disingenuous and can rob both the care partner and care receiver of much-needed space to feel how they feel. Instead, Gurung suggests remaining open and honest with each other, even on bad days.

“It can be empowering and grounding to just preempt before assisting with care, ‘Gosh, honey, today just feels like a rough day.’ It’s not something that implies that the care receiver is a burden; instead, it makes it more about the activity being hard,” says Gurung. “It adds this element of verbalizing in this ‘me and you’ space that this is hard, but it’s not accusatory. We set what our space is today to make sure we know where each other is so we can both get out of it what we need. Set that expectation together.”

Make Space for Gratitude

“Gratitude allows you to look at things through a different lens so you’re able to still see the positive and enjoy the good moments where they exist,” says Spann. But it’s not automatic—caregivers have to choose gratitude for themselves and their partners every day, and it’s not an easy choice, especially as an illness progresses or burnout takes hold.

In moments when gratitude feels hard to find, Spann suggests using reframing language like, “It’s different, but we still have X,” to help acknowledge reality and feel gratitude in equal measure.

Believe They Can

“If you’re working with someone with dementia, the loss of certain functions or a loss of ability to even reciprocate expressively through language, continue to talk to them with a level of love and care, and caress them with that same level of love and care,” suggests Spann. Rather than spend energy guessing what the care receiver can and cannot hear, feel or understand, choose to believe they can experience it all in full.

Play their favorite music, talk about joyful times and hang art on the walls they would appreciate. “There’s a lot of power in our words, and there’s a lot of power in our presence,” says Spann. “You never know when that moment of connection can happen.”

Caregiving Is The Ultimate Relationship Challenge. Here’s How To Reclaim Your Love And Yourself Through It All

Let Help In

All too often, caregivers fall into a “I can do it all” routine with their partner, so much so that they lose sight of how to accept help when it’s available. “When you’re caring for a loved one, you want to do everything you can to solve the problem, but at the same time, some things are best left to professionals,” says Dr. Ho.

Spann recommends caregivers consider adding a certified nurse assistant or home health aide (if financially feasible) to their current care team to distribute the workload in a healthier way. “It’s okay to realize there’s only so much you can do,” he says. “Professional support can help serve as a buffer where you feel a level of exhaustion, be it physically, mentally, emotionally or spiritually. It’s going to help make sure there’s a separation in those identities.”

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Remember Your Value

Typically, people are partners well before they become caregivers—and that first role can be the most significant. “The value of what you can provide your loved one oftentimes is emotional support and companionship,” says Dr. Ho. It does require accepting help so you can step out of your caregiver shoes from time to time, but doing so also enables you to tap into a power only you possess for your partner.

In fact, Spann suggests love alone can be quite healing in a care partnership. “There are moments when we need to give proper care and be very aware of the right thing to do to make sure they’re stable, but there’s also something so powerful in love, compassion and grace that’s just as medicine-like that can actually help them. Be mindful of that,” he says.

How to Reconnect With Yourself

Despite how it may feel, a caregiver’s existence does not (and should not) begin and end with the ways in which they serve their partner. Room must exist for the individual and their own identity to maintain their physical, mental, emotional and spiritual health. And while bandwidth is often severely limited for most people in caregiving roles, there are expert-recommended practices to help inspire that balance.

Redefine Self-Care

When suggesting self-care to a caregiver, the response, “Are you kidding me?” is a common one. The idea feels so out of sync with their reality, especially when it conjures images of jet setting to an island vacation or taking a spa day. However, it’s the most important thing from day one in any relationship, according to Keilman.

“Self-care is the easiest thing we can do for ourselves, but we don’t think about it that way, and we don’t think about it as taking care of the self,” she says. “We think about it as being selfish or self-centered. If people just ate enough fruit and vegetables and healthy meals, drank enough water, got some physical activity, slept well and had some fun doing something they enjoy on a regular basis—even if it’s just reading a book—everyone would be able to manage stress much easier.”

“We need a new word or concept, something that doesn’t make it seem as time consuming,” adds Gurung. “Maybe it’s a minute of deep breathing or a quick walk around the block— something that’s still rejuvenating to the caregiver but doesn’t feel like another task. It’s also something they can use consistently and build into their life as a tool they can lean on. Everyone can benefit from this kind of self-care.”

Meditation, mindfulness and talking openly with a friend are all among simple moments of self-care Keilman recommends as well.

Find Respite for Yourself

When symptoms of burnout begin to stack up, it’s critical that a caregiver seek space for their own healing.

“You have to take a break and step away from what’s happening,” says Spann. “Your hyper-awareness and hyper-focus on the person you’re loving comes from compassion, but if you’re not giving that same grace and compassion to yourself and taking time for a break, you will find yourself burning out quicker than you think. Caregivers who have a balance, find time to take care of themselves, eat healthy, get rest and find support where they need support are able to find more sustainability in providing that for their partner.”

Similar to self-care, respite can exist in small moments. It’s simply a space that gives your mind the opportunity to have its own space for you, says Spann. “Find a small moment for a nap or discuss with your partner the need for time with your friends. Gradually build it up to where you’re able to feel comfortable and trust that your partner is okay with you going off and doing other things that make life worth living. If you’re hyper-focused on your partner and you’re not having those conversations, you’re going to find that you’re living more for them and not having your own life.”

For Keilman, stress reduction is one of the main goals of respite. “You have to keep your care partner role balanced with the rest of your life, even though being a care partner takes 100% [of that space] most of the time” she says. “You still need respite, you still need to get out, you still need to take care of yourself. Learn how to control your stress with simple things. Music is great, dance is great… Maybe you can try placing a bird feeder outside your window. There’s so much that we can do that isn’t rocket science—you just have to get a little creative.”

And when you do step away for that break, make it a real break, says Gordon-Battle. “Don’t use it to call the insurance company or refill medications. Make that break for yourself.”

Join a Support Group

While some supportive services like home health assistance can cause caregivers additional financial stress, there are resources that are both free and highly effective.

“When it comes to support for the caregiver, see if there’s a network of support they could have, be it family or friends or someone close enough to help guide them through the situation as a listening ear,” says Spann. “That kind of network could be very helpful for them in creating space and respite for themselves.”

Keilman agrees, adding, “It’s amazing what care partners can learn from other care partners.”

It’s important for caregivers to know they’re not alone even if they feel like they are, says Dr. Ho. “Understand that it’s okay to reach out to get your own support. Whether you find a group online or reach out to a few close friends, try to engage with other people and ask for the support you need,” she says. “You have to give yourself that time because, ultimately, your health and the health of the person you’re caring for is reliant on your emotional health to a great degree.”

Caregiving Is The Ultimate Relationship Challenge. Here’s How To Reclaim Your Love And Yourself Through It All

Try Therapy

If community support isn’t enough, connect with a therapist or counselor for help.

“Therapy gives the caregiver the opportunity to speak openly and freely about what they’re feeling and what they may be going through,” says Gordon-Battle. “Spouses caring for each other definitely need to be in therapy because it also helps in the long term. Anger and frustration come when there’s a loss, and if they’re already connected with a therapist, they can navigate that freely rather than hold it in. It also helps them become independent,” she adds. “Just be open to the process and try it. It gives everyone a leg up.”

Focus on the Joy

Life as a care partner is tough, but that doesn’t mean every day is a bad day. “Focus on what you can do together and what brings you happiness and joy when you’re providing care, because there are good times,” says Keilman. “Sometimes we just have to focus more on those things while also understanding that it’s tough. The people I’ve seen be successful caregivers took themselves lightly, focused on the joy and really looked for it.”

Be Honest About Your Loss

As a caregiver remembers to feel joy, it’s equally important to process the loss they already experienced.

“I don’t think it’s healthy to look at a situation that’s changing and pretend that it’s not changing,” says Gordon-Battle. “I don’t encourage people to fantasize or believe the person in front of them is the same person they were dating and experiencing life with previously, because that’s no longer the case. I want them to be realistic about what exactly is being presented to them; it’s really important to begin to process that loss and begin to adjust. That, too, is part of self-care, including talking about what you miss.”

Give Yourself Credit

At the end of the day, as caregivers work to balance the needs of their partner and themselves, they desperately need to practice self-appreciation. “You are doing the best you can, and if that’s the best you can do for that day, don’t guilt yourself or shame yourself if you don’t see any change from your partner,” says Spann. “Each day is a new day, and if you’re doing your best, that’s all you can do.”

Learning How to Talk About Illness and Death

Caregiving is not an exclusive experience—one out of every five U.S. adults serves as a family caregiver to some extent in a given year, according to the AARP report. And as the baby boomer generation continues to age and live longer, more older adults are navigating chronic and oftentimes complex medical issues outside care facilities. In fact, 43% of senior respondents want to age in place at home, and 35% want to live with family members as they age, according to the Care.com 2021 Senior Care Outlook Survey. So if you have yet to explore this possibility with your partner, consider yourself lucky: You still have time to prepare, and it’s imperative that you do so.

“We have to normalize that aging and medical needs are going to come,” says Gordon-Battle. “Just like we plan for the birth of a baby, we have to plan for the other end of the life cycle. Start that dialogue.”

Caregiving Is The Ultimate Relationship Challenge. Here’s How To Reclaim Your Love And Yourself Through It All

Make a Plan 

Before challenges arise, make a point to sit down with your partner and discuss the following questions:

  • What do you want life together to look like when you’re 60, 70 or 80 years old?
  • What would you want your partner to do for you if you got sick? What would they want you to do for them? Are you comfortable with the idea of meeting those needs for each other? If not, what are your other options?
  • If an illness were to progress, do you have an understanding of each other’s advanced directives when it comes to more serious medical decisions? Do you feel confident in your ability to carry out each other’s wishes?
  • What kind of financial support would be required to provide the care desired by the both of you? Does that seem manageable? If not, how would you handle it
  • How often will you review this conversation to account for any potential changes?

This type of planning can be uncomfortable, awkward and emotionally draining, but it’s invaluable.

“We don’t want to burden anyone, so we don’t always communicate,” says Gordon-Battle. “But the goal is to start that communication, ask questions, share your thoughts, make sure you know what their needs are and set a plan up to say, ‘This is where I can help,’ or, ‘These are things I cannot do.’”

The plan can start simple, and you can work to fill in the holes over time. But begin to normalize aging by having this conversation early, even as you start a new life with a partner, suggests Gordon-Battle. “Young people have to be responsible for normalizing this conversation now,” she says.

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Check In Regularly With Each Other

Remember: The foundation of a relationship is amplified by the caregiving experience. So take the time to tune into your dynamic with your partner now. Celebrate what’s working, nurture what needs improvement and check in regularly to avoid unwanted surprises down the road.

“People need to examine their relationships on a regular basis,” says Keilman. “Discuss what the past year has been like and your short-term and long-term goals for the future, especially as you get older. Even people who live the healthiest lives imaginable get chronic illnesses.”

“COVID-19 is a perfect example,” she adds. “Who expected that? Do a checkup on your relationship on a regular basis. It’s all about communication and having the trust and honesty to say, ‘This is working out great’ or ‘This is bothering me.’ And it’s an opportunity when everyone is cognitively intact to talk about the ‘what ifs.’”

Even the most intimate of couples can fear difficult conversations, but if you love each other for who you are, then you can trust that you’re in a safe space. Together, you can navigate the full circle of life, including all the joy and pain it undoubtedly brings. Hope for the best, plan for the worst and stay open for what’s to come.

In memory of the love and life of William Hall, and in appreciation of the superhuman strength of Sandra Rivas-Hall


1. Caregiving in the U.S. 2020 Report. AARP and National Alliance for Caregiving. Accessed 3/8/2022.

2. Caregiving in the U.S. 2020 Report. AARP and National Alliance for Caregiving. Accessed 3/8/2022.

3. New senior care survey reveals lasting impacts of the pandemic on older adults and family caregivers. Care.com. Accessed 3/8/2022.


Caregiver Statistics: Facts About Family Caregivers. Aging Care. Accessed 3/8/2022.

Caregiving for Family and Friends — A Public Health Issue. Centers for Disease Control and Prevention. Accessed 3/8/2022.

Caregiver Burnout. Aging In Place. Accessed 3/8/2022.

Cohen SA, Kunicki ZJ, Drohan MM, Greaney ML. Exploring Changes in Caregiver Burden and Caregiving Intensity due to COVID-19. Gerontol Geriatr Med. 2021;7:2333721421999279.

Pinquart M, Sorensen S. Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging. 2003;18:250-267.

Complete Article HERE!

Lively conversations about dying


Death Café opens up difficult dialog

Things at the Death Café were cheerier than one might think. There were tears, of course, but there was also laughter, regret, gratitude, questions and advice. Above all there was wonder and awe — a sense of reverence for a process that all of us will experience, yet few of us talk about.

Longtime Mazama resident and “death doula” Bo Thrasher recently collaborated with Methow at Home to host a Death Café, inspired by the model developed in England in 2011 by Jon Underwood and Sue Barsky Reid. Based on the ideas of Bernard Crettaz, a Swiss sociologist and anthropologist who debuted the first “café mortel” in 2004, a Death Café is a social gathering designed to stimulate frank conversations about taboo subjects, including death.

Thrasher’s own interest in becoming a death doula — a person who helps others navigate end of life assistance from logistical, spiritual, emotional, physical and practical perspectives — stems from the hospice workers who helped her mother die peacefully at home. Through her work as a death doula, Thrasher “is striving to help make the idea of dying and death a natural part of our culture within the whole life cycle.”

“When my mom passed away I was amazed by the beauty and care with which she was treated by hospice,” Thrasher said by way of introduction in the Death Café. “I decided I wanted to work with people in the end of life. We’re all born and we’re all going to die. I wanted to be a part of that, to think about how we think and talk about death, and how that affects life and how we want to live.”

Reclaiming the word “doula” from its origins — “doule” in ancient Greek means “female servant” — Thrasher and other death doulas around the globe are reclaiming the process of leaving life behind, shuffling off our mortal coils not in sterile environments attended by strangers but in sacred spaces and homes, surrounded by loved ones.

Thrasher said that she and her fellow death doulas are “non-medical professionals who advocate for the dying, give comfort and emotional support, work with hospice and medical professionals, and work with aftercare resources like funeral homes and cemeteries.”

Opening the conversation

A Death Café doesn’t have an agenda or a theme; it’s designed simply to open the conversation about death. And like any gathering without a theme, the recent Methow Valley Death Café covered a range of topics. Some attendees shared their own stories with death, ranging from a “horrific experience” of removing a father from life support to getting to hold a mother’s hand while she took her last breath to reminiscing with siblings while sorting through parents’ belongings after both had passed.

While the overwhelming message from those who have experienced the death of a close loved one and who have had to navigate dealing not just with the body of the deceased but later the possessions of the departed is to “talk about end-of-life concerns so you’re on the same page before death arrives,” suggestions were intensely personal and represented opposing perspectives.

One attendee noted the gratitude she felt for her father’s attention to his possessions before his death; his children will not be left with a house full of things to distribute and dispose of. Another agreed: “When you die, you’re already leaving your loved ones with a lot of stuff. If there’s anything you can do to make it easier for them to say goodbye without overwhelming them, you should do it.”

But others said that going through their parents’ possessions after they died was cathartic and bonding: “It helped us acknowledge the end of an era,” one said. “We had so much fun putting stickers on things that we wanted in my parents’ house,” said another. “It was just another way of connecting with my siblings.”

Another participant shared the experience of attending a funeral that had been planned by the deceased prior to death, down to the music, the speeches, and the readings. “Every bit of it was orchestrated, and it seemed stilted to me. People weren’t as engaged as they would have been had they had a part in planning it,” she said. “It made me rethink my own eventual memorial service. I have this favorite song that I always imagined would be playing. But maybe that song won’t resonate with the people there. Maybe part of dying is letting go, leaving it to others to decide how best to celebrate and grieve with those who are left behind.”

The same participant shared that at her mother’s funeral, an aunt told her “Honey, life is for the living; you gotta move on.” She took that to heart and it reframed her thinking, not just about her own funeral, but also where she might be laid to rest.

“My family always does cremation and spreading ashes and my grandparents are in urns in a fancy mausoleum in Seattle,” she said. “But I was recently at Beaver Creek cemetery and I was very moved — it was such a lovely place to go and contemplate someone’s life.”

“Cremation is quite toxic on the environment,” she continued. “I had always thought that was the best option, environmentally, but now I’m more interested in a truly green burial.”

“Ashes to ashes, dust to dust,” another participant said. “I have an arrangement with a carpenter friend to make me a wooden box. I want to return to the earth.”

She was echoed by another: “It’s important to me that all of my molecules go back into life, and that doesn’t happen in a vault.”

Expanded choices

Although options for body disposition are fairly limited in Washington state, the range of choices has expanded to include aquamation (biocremation using lye and heat) and natural organic reduction (human composting). The People’s Memorial website (peoplesmemorial.org) offers educational workshops that provide information about avenues for body disposition, as well as other death-related challenges like transporting bodies and coordinating at-home funerals.

The aftermath of death is a necessary part of the process, not for the deceased but for those left behind. Organizing memorials, laying the body to rest, combing through possessions, wrapping up paperwork — all can be cathartic and help bring closure. But advance planning not only makes this process smoother, it also helps “spur good thinking about how we want to live our lives,” one participant said.

But not all of the dialog at the Death Café centered on the logistics of death and the legal and administrative consequences. At the core of the conversation was the agreement that journey between life and death remains mysterious, unknowable. Thrasher said, “Like birth, there’s this moment where you’re not really here or there, you’re between. It’s important to recognize those moments.”

Several participants described their parents’ passing — all of whom were surrounded by family and friends — as “unbelievably beautiful,” “fairytale,” “profoundly loving,” and “wonderful.” One participant said that she felt so fortunate to have experienced both of her parents’ deaths at home that she would like to help others have similar experiences. “We took back childbirth,” she said. “Now we need to empower people to take back death, to take control of the end of their lives.”

“There’s something about the last breath,” said another participant. “It sounds strange, but that last exhalation is a magical thing. It’s the transition to the unknown, the unknowing. It’s just fascinating.”

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