Category: Preparing for Death

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What to Do When a Loved One Dies

Advice to keep a sad event from becoming even more painful

By Consumer Reports

Responsibility for the various actions can be divided among family members and close friends of the deceased.

Immediately

1. Get a legal pronouncement of death. If no doctor is present, you’ll need to contact someone to do this.

  • If the person dies at home under hospice care, call the hospice nurse, who can declare the death and help facilitate the transport of the body.
  • If the person dies at home unexpectedly without hospice care, call 911. Have in hand a do-not-resuscitate document if it exists. Without one, paramedics will generally start emergency procedures and, except where permitted to pronounce death, take the person to an emergency room for a doctor to make the declaration. Keep in mind that do-not-resuscitate laws vary at the state level and if a person does not want to be resuscitated, “calling 911 is not necessary” according to the National Institute on Aging. “If the death is not unexpected, you might call the individual’s physician first,” says Lori Bishop, vice president of palliative and advanced care at the National Hospice and Palliative Care Organization.

  • 2. Arrange for transportation of the body. If no autopsy is needed, the body can be picked up by a mortuary (by law, a mortuary must provide price info over the phone if you ask for it) or crematorium.

    3. Notify the person’s doctor or the county coroner.

    4. Notify close family and friends. (Ask some to contact others.)

    5. Handle care of dependents and pets.

    6. Call the person’s employer, if he or she was working. Request info about benefits and any pay due. Ask whether there was a life-insurance policy through the company.

    Within a Few Days After Death

    7. Arrange for funeral, memorial service, and burial or cremation. Search the person’s documents to find out whether there was a prepaid burial plan. Ask a friend or family member to go with you to the mortuary. Prepare an obituary.

    8. If the person was in the military or belonged to a fraternal or religious group, contact that organization. It may have burial benefits or conduct funeral services.

    9. Secure the person’s home. Or ask a friend or relative to keep an eye on it, answer the phone, collect mail, throw food out, water plants, and keep minimal heat on to avoid frozen pipes if it’s winter in a colder climate.

    Up to 10 Days After Death

    10. Obtain the death certificate (usually from the funeral home). Get multiple copies; you’ll need them for financial institutions, government agencies, and insurers.

    11. Take the will to the appropriate county or city office to have it accepted for probate. Check your state’s laws, which may require you to file the will within a set period of time.

    12. If necessary, the estate’s executor should open a bank account for the deceased’s estate.

    13. Contact the following:

    • A trust and estate attorney, to learn how to transfer assets and assist with probate issues.
    • Police, to have them periodically check the deceased’s house if vacant.
    • An accountant or a tax preparer, to find out whether an estate-tax return or final income-tax return should be filed.
    • The person’s investment adviser, if applicable, for information on holdings.
    • Banks, to find accounts and safe deposit box.
    • Life insurance agent, to get claim forms.
    • The Social Security Administration (800-772-1213; ssa.gov) and other agencies from which the deceased received benefits, such as Veterans Affairs (800-827-1000; va.gov), to stop payments and ask about applicable survivor benefits. The SSA, like the VA, recommends immediately reporting the person’s death, though in many cases the funeral home will handle this.
    • Agency providing pension services, to stop monthly checks and get claim forms.
    • Utility companies, to change or stop service, and Postal Service, to stop or forward mail. Reach out to other companies to stop recurring bills and subscriptions. If home is vacant, contact the insurer to switch to a vacant policy. If home is under a mortgage, contact the lender.
    • The IRS, credit-reporting agencies, and the DMV to prevent identity theft.
    • Social media companies, such as Facebook or LinkedIn, to memorialize or remove an account.

    Know the Person’s Wishes

    For an elderly friend or relative:

    • Know the location of the will, birth certificate, marriage and divorce certificates, Social Security information, life-insurance policies, financial documents, and keys to safe deposit box or home safe. Ask the person to create an inventory of their digital assets (such as email, social networks, and digital files) and include a plan for these assets in their will.
    • Ask about the person’s wishes concerning funeral arrangements, organ and brain donation, and burial or cremation.
    • Have the person complete an advance directive, including a living will, which specifies wanted and unwanted procedures. The person should also appoint a healthcare proxy to make medical decisions if he or she becomes incapacitated. Some who are more seriously ill might also consider a Physician Orders for Life-Sustaining Treatment in addition to an advance directive.
    • Ask the person about end-of-life care, such as palliative and hospice care (which have key differences), and what their insurance will cover. Medicare, which covers most elderly Americans, will cover hospice care. Palliative care is growing in popularity, but “keep in mind that anyone with six months or less to live should have access to hospice,” Bishop says.
    • Have a do-not-resuscitate order drawn up if the person desires. That tells healthcare professionals not to perform CPR if the person’s heart or breathing stops and restarting would not result in a meaningful life.
    • Make sure the person gives copies of the documents to his or her doctor and a few family members or friends. Take the documents to the hospital if the person is admitted.

    Complete Article ↪HERE↩!

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Film ‘The Elephant in the Room’ Shines a Light on Palliative Care

By Holly Vossel

Public misperception is a barrier between patients and palliative care. Based on the true story of a nurse practitioner’s experiences with patients and families facing serious and terminal illnesses, the film “The Elephant in the Room” depicts the patient-centered interdisciplinary care that so many seriously ill patients need.

The film was written by Bonnie Freeman adapted from her novel, “Resilient Hearts: It’s All About the Journey,” based on true stories of her experience as a supportive care nurse practitioner for the Department of Supportive Care Medicine at City of Hope Medical Center located in Los Angeles. Shot throughout 2017 and directed by husband and photographer Allen Freeman, the book turned film brings an inside look into goal-concordant and patient-centered care through the eyes of those who provide it.

“Bonnie wanted to educate, that was her passion at the root of it all,” said Executive Producer William Dale, chair in Supportive Care Medicine at City of Hope. “She just wanted to make sure that our message got delivered. She had aspirations for us to break out of our little crowd that care about the cause, care about supportive care and palliative care.”

Dale also helped provide funding to support the film’s making.

According to producers, Freeman passed “unexpectedly and suddenly” before the film completed on April 26, 2018. She played an integral and hands-on role during filmmaking, working closely with Niko Vitacco, who played the lead role of nurse practitioner Michael Lafata. 

Films like the “The Elephant in the Room” could help to raise awareness and improve understanding of palliative care. The medical comedy-drama, walks viewers through end-of-life care through a provider’s lens, including goals-of-care conversations. The comical drama is currently available on Amazon Prime.

As many as 71% of people in the United States have little to no understanding of what palliative care is, including many clinicians in a position to refer patients to palliative care or hospice, according to A Journal of Palliative Medicine study.

While no standardized definition exists for “palliative care,” the U.S. Centers for Medicare & Medicaid Services (CMS) defines the term as “patient and family-centered care that optimizes quality of life by anticipating, preventing and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social and spiritual needs and to facilitate patient autonomy, access to information and choice.”

Roughly half of community-based palliative care providers in the United States are hospices, according to the Center to Advance Palliative Care (CAPC). While a growing number of hospices are diversifying their service lines to include palliative care, many struggle to sustain and grow programming due to a widespread lack of awareness. These services remain relatively unknown and misunderstood among the general public, as well as within medical communities.

“Bonnie knew that storytelling was a way to help improve end-of-life care,” said Vitacco, actor and co-producer of Absolution Films. Vitacco read the following quote Freeman initially wrote to pitch the film. “‘I realized many health care providers did not know what we provided and the community was even less informed. I felt a film would reach a broader audience and could be a tool to promote discussions about effective ways to communicate the need for compassion and show the difference a dedicated palliative care team can make in the lives of each other, their patients and their families.’”

The film strikes a strong chord as the world comes face-to-face with a deadly pandemic. The COVID-19 outbreak has brought serious illness to the forefront, with the World Health Organization reporting more than 1.6 million lives lost globally since its onset.

“Something within this script resonated so strongly with me. I saw it as an opportunity to help people on a larger scale, to share a story that was meaningful and bigger than me,” said Vitacco. “Even more so now in a world where humanity can sometimes feel lost, this film can show the type of the side of people that we all want to become but sometimes struggle to be.”

Despite heightened focus, palliative services remain underutilized throughout the globe. The World Health Organization reported in August that only 14% of people who need palliative care currently receive it. Many countries ranked low in an international review of length of palliative care received by people with life-limiting and terminal conditions, including the United States and Australia.

Increasing awareness around the benefits of serious illness care was a stated goal for the filmmakers.

“Palliative care is still considered new within the medical world,” said Vitacco. “Our mission was to make it universally known and share it with not only the professionals, but the public as well to show them what is readily available to them.”

Initially released in Middle Eastern countries, “The Elephant in the Room” came out in Australia, Canada, Germany, India, the United Kingdom and the United States on Amazon on Aug. 21, 2020, representing a broader reach for the film’s universal message.

“The subject is universal and we just wanted to release it wherever we could,” said co-producer Tamir Gedalia of Absolution Films. “For me, the message was that we need to change the way we treat terminally ill patients. It’s universal in every country. There is no country that doesn’t have this kind of love and treatment, there is no relation to a village.”

The film’s use of the term “supportive care” to describe end-of-life care was deliberate. The term is becoming more common in the field as providers seek to avoid stigma associated with the words “palliative” and “hospice.” Numerous organizations rebranded in recent years to remove those words from their company names.

Scenes show providers both engaging with patients and behind closed doors in interdisciplinary team meetings. The film’s team includes the supportive care department chair, oncologist, neurologist, pediatrician, pharmacist, nurse practitioner, social worker, chaplain and a staff psychologist who collaborate from the point of the patient’s admission through his passing. The social worker role of Valerie Howard was played by Rupinder Sidhu, a licensed social work program specialist at City of Hope.

Filming took place onsite for 12 days at City of Hope to minimize disruption to patients and operations, according to Dale, who expressed reluctance at opening the medical center’s doors to filming but ultimately valued an authentic setting.

“My hope is that people elsewhere understand the field and get entertained, but then also imbibe this message that it’s about how you take care of each other and take care of yourself,” said Dale. “We’ve all had those moments as providers when we’re in too deep with patients and families and we’ve gone across that line. The team did an amazing job dramatizing that, and I think that’s what Bonnie wanted and it’s my deepest goal for the field and for the film. This is more than we could have expected and we couldn’t have hoped for a better product that’s actually getting seen.”

Complete Article ↪HERE↩!

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End-of-Life Experts Call for Expansion of Patient-Centered, Goal-Concordant Care

By Holly Vossel

A deadly worldwide pandemic has helped to expose pitfalls in a broken health care system, drawing increased awareness and attention around the delivery of serious illness and end-of-life care, according to hospice and palliative care experts speaking at End Well’s Take 10 virtual conference.

The virus has claimed more than 1.6 million lives globally since its onset, according to a recent World Health Organization report which stated that the United States continues to bear the brunt of the pandemic’s effects, accounting for 86% of new deaths worldwide in the last week alone. According to a number of health care stakeholders, the government and the health care system itself hasn’t sufficiently adapted to meet patients’ needs during the crisis.

“We’ve been putting our elderly and disabled in solitary confinement for months, and that was understandable during the first few weeks where we didn’t understand anything about the virus or how to keep people safe. We saw entire units where elderly people and disabled people died, but now we know how to keep people safe,” said Atul Gawande, M.D., a surgeon, writer and public health leader, at the End Well event. “I myself have family with serious health issues and they need long term care, but we’re told we have to sign away the possibility that we’d ever see them again, that we’d ever hug them again and that’s just unacceptable. They won’t provide the [personal protective equipment (PPE)] and the training to make such things as possible, and that is outrageous.”

Gawande is founder and chair of Ariadne Labs, a joint center for health systems innovation, and of Lifebox, a nonprofit organization aimed at making surgery safer globally. He is also co-founder of the Massachusetts Serious Illness Care Coalition and serves as board chairman of Haven Healthcare. Gawande is among the providers calling for fundamental changes to the health care system.

A key component of that change would be to promote end-of-life and goals-of-care conversations among patients and families. Gawande cited surveys conducted by the Massachusetts Serious Illness Care Coalition, an organization he founded, which indicated that only about 50% of people who have a serious health condition have discussed their wishes with their loved ones. Only 25% have had such conversations with their clinicians.

“When they have those conversations they’re not at all confident that those wishes will be followed. That should be an outrage,” Gawande said.

COVID-19 has disrupted the health care system as providers faced lack of protective resources, staffing issues and revenue losses. Hospices have been pummeled by the disease’s spread, taking hits to operations and finances and facing difficulty accessing facility- and community-based patients.

Some of the roadblocks to quality end-of-life and serious illness care often stem from social determinants of health, lack of awareness around hospice care, and racial divides in accessible care. While these issues are gradually coming to the forefront of discussions in the end-of-life space among clinical, business and policy leaders, stakeholders are renewing calls to accelerate a reorientation of the health care system towards patient-centered, goal-concordant care.

“We all deserve a system that we’re not just tolerating,” said Mark Ganz, president and CEO of Cambia Health Solutions at the End Well Take 10 event. “Let’s resolve as we accelerate out of this curve called 2020 that we take some of the difficult things we’ve seen and talked about and we turn it into a thing of light. We have the opportunity to invent the systems that allow us to truly see the patients and their loved ones in a new way. We need to act and act now.”

Complete Article ↪HERE↩!

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What you need to know if you or a loved one requires end-of-life care

By Ben Poston, Kim Christensen

Conceived as an end-of-life option for terminally ill patients, hospices provide palliative care, medications, nursing services and counseling for those diagnosed with six months or less to live.

The number of U.S. hospices has roughly doubled in the last 20 years, as more for-profit providers vie for a share of $19.2 billion a year in Medicare spending that covers hospice care. More than 1.5 million Medicare beneficiaries now receive care from some 5,000 hospices, nearly a quarter of them in California.

While hospice has been a godsend for millions of dying Americans and their families, a Times investigation found that intense competition for new patients has spurred billing fraud and other illegal practices, including falsified diagnoses and kickbacks to unscrupulous doctors and recruiters who target prospective patients at retirement homes and other venues.

The Times also found hundreds of instances in which California hospice patients were harmed, neglected or put at serious risk, their mistreatment sometimes exacerbated by serious gaps in government oversight.

What are the benefits of hospice care?

Hospice is intended to provide comforting, compassionate care and a range of support services for terminally ill patients and their families. In addition to nursing and medical care that includes pain management, prescription drugs and supplies, patients receive spiritual and emotional support, help with personal hygiene and respite care for family caregivers.

Most hospice patients receive care in their homes, including assisted-living settings and nursing facilities.

How do I choose a hospice?

There’s no set formula for choosing a hospice, although experts suggest discussing options with your personal physician and seeking recommendations from friends and relatives whose loved ones have had good experiences.

You should also interview any prospective hospice, asking questions about its licensing, which is required by the California Department of Public Health; whether it is certified by Medicare; when it was last inspected and whether violations were found; the range of available services; the makeup of the hospice care team and the roles of its doctors, nurses and others; and the role the hospice expects family members to play in a patient’s care plan.

Several industry and advocacy groups offer online guidance, including the National Hospice and Palliative Care Organization, which provides a worksheet and a list of questions.

How do I know if a hospice is reliable?

There is no one place where consumers can go to make a comprehensive comparison of local hospices — a gap that patient rights advocates have long criticized.

A variety of online sources provide information about hospice care, but each has limitations. Medicare’s hospice comparison site allows consumers to search for providers by ZIP Code or name, but has scant information about quality-of-care issues and inspections.

The California Department of Public Health has a searchable tool called Cal Health Find Database, which provides users with inspection reports when serious violations are uncovered back to 2017. It also allows consumers to compare quality metrics of up to three hospices at a time, but it doesn’t provide a rating system for providers. The results of inspections by accrediting agencies are not included on the site — a significant problem for consumers in California, where more than 80% of hospices contract with accrediting agencies rather than the state to conduct certification inspections once every three years.

Another resource that is more difficult to navigate is an interactive site maintained by the Centers for Medicare and Medicaid Services. The site includes copies of complaint investigations and a look-up function that allows users to compare the number of serious violations at hospices in California and other states.

What red flags should I look for?

Be on the lookout for any hospices that have been cited in recent years with serious violations. In the language used by Medicare, these include “condition-level” deficiencies or “immediate jeopardy” situations, which are considered the most severe. Also, hospices can be cited for failing to certify that patients are terminally ill, which is an indication of possible fraud.

If you have the name of a hospice administrator, which can be found on the state public health department’s website, you can find out if that person has been excluded from receiving federal healthcare payments on a site run by the U.S. Department of Health and Human Services’ Office of Inspector General.

If I’m not happy about my hospice, where do I complain?

If you can’t resolve your issues with the hospice, the California Department of Public Health investigates complaints, which can be filed online — but not necessarily with satisfying results.

You may also file a complaint about Medicare providers directly with the federal agency or with the California Senior Medicare Patrol, a federally funded statewide hotline to help Medicare beneficiaries prevent, detect and report fraud.

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End-of-life coach

— The art of dying well

For most of us, the word “doula” is firmly associated with a coach helping a mother through childbirth. A modern-day version of a traditional midwife, a doula, is not a healthcare professional, but rather a guide, whose goal is to comfort and support women in labour both physically and emotionally.

Derived from the Greek word δούλα (“servant-woman”), doula stands for a woman who lends her knowledge, experience and presence of mind during the arduous process of childbirth. In the Western world, the popularity of birth doulas started to gain traction in the early days of the reproductive justice movement back in the ’70s.

Striving for more natural and less medical experiences women turned to doulas, who’d often act as advocates for women and babies in hospitals which weren’t always friendly and accommodating.

Recent years have seen the rise to a different kind of doulas, quite the opposite of those attending to childbirth. These are “death doulas” who support people in their end-of-life journeys. Also referred to as “death midwives”, their vocation is a relatively recent phenomenon emerging as part of the mindset recognising death as a natural, accepted, and honoured part of life.

Death doulas are by no means there to assist in ending one’s life (at least in the countries where euthanasia is illegal), but rather to ease the transition both for the passing person and his or her loved ones, who stay behind/Sharon McCutcheon via Unsplash

There are remarkable parallels between being born and dying, and in both life scenarios, doula’s aim to reduce anxiety and confusion, manage the pain, and, if possible, make the experience more peaceful. Just as birth doulas are coaching mothers on birthing a baby, death doulas are coaching people on dying. They provide non-medical aid which is a mix of emotional and practical counselling that can make all the difference.

Christy Moe-Marek, an end-of-life doula from Minnesota, says that doulas emerged from the Baby Boomers, behind the natural birthing movement. They decided to take things into their own hands as far as dying goes: “They’re saying, no, I don’t want the death my parents had. We are rich in possibility, why can’t I make this whatever I want it to be?”

Death doulas – just like midwives – have been around since the beginning of humanity. Traditionally their roles were played by the wise women from the community or extended family.

However, with the disintegration of traditional societies and the extended family per se, we have lost touch with our roots as we often find ourselves helpless in the face of the imminent. Death customs and practices within families have all but vanished as palliative care was delegated to hospitals and the funeral industry was commercialised. But these days people are yearning for a better life – and death! – and this is when doula’s role becomes so crucial.

According to The New England Journal of Medicine, the number of Americans wishing to die at home rather than in a hospital environment is the highest it’s been since the early 1900s/Dominik Lange via Unsplash

They want to pass away surrounded by their family and friends, who could be overwhelmed by witnessing the final days of their loved ones while feeling helpless and powerless. The trade of a modern death doula has emerged as a response to the people’s fear of facing death and even contemplating it. Death doulas have started a conversation about dying and have, in some way, given voice to those making the transition. After all, these days many more people get a chance to linger on a bit longer despite terminal illnesses thanks to the advances in modern healthcare. In many cases, they do need someone to discuss their transition with and make it more meaningful.

Unlike death midwives of the past, our contemporaries are women (and sometimes men) old and young, coming from different paths of life. They help people on the threshold of passing to write letters to their unborn grandchildren, to arrange farewells with relatives; they may perform traditional or religious rituals for their charges or offer assurances.

Doulas bridge the gap between the dying and their families, facilitating conversations about death, explaining things and advising when it’s finally time to let go. Some say that working with a death doula opens people up to a more spiritual side of death with less anxiety and trepidation/Manikandan Annamalai via Unsplash

As death doulas are gaining more mainstream attention, there’s been an ongoing debate, whether they should provide free services rooted in the community. For instance, in communities of indigenous people or African people death doulas have continued to be a steadfast part of the culture. On the other hand, most of today’s end-of-life professionals aren’t being supported by specific communities and, thus, cannot afford to render their services for free. In big cities, where tightly-knit communities ceased to exist a long time ago, death doulas are usually hired by the family of the person nearing the end of life. Still, their responsibility remains with the dying, whether they are being attended to at home, or in a hospice.

In traditional cultures, the art of attending to the dying is passed down from generation to generation. But a skillset of a death doula isn’t “god-given”.

It is something that can be learned. These days one can learn the ways of a death doula by attending training courses or seminars. Neither in the US or Europe are there national regulatory agencies that would provide licensing and oversight. Most likely, their creation is just a matter of time. The decision to become a death doula is often made after attending a dying family member. Others translate years of experience as nurses and palliative care specialists into a new dimension, and some feel the need to make traditional passing-related rituals available to members of their communities. Groups that train death doulas are usually led by nurses and social workers who want to change the impersonal nature of the dying experience most people faces. In the US organisations like The Doula Program to Accompany and Comfort, in New York, The International End of Life Doula Association (INELDA), or Lifespan Doulas and other groups train people to become death doulas.

In Russia, death doulas are virtually non-existent, because palliative care is still in its infancy, and people are culturally opposed to an open conversation about death and dying/Bret Cavanaugh via Unsplash.

However, the need to make dying less clinical and remove the fear and stigma surrounding death has become tangible. Society seems to have gradually realised that dying people, in whose shoes we’ll all end up one day, deserve greater compassion and companionship in their final days. Shelby Kirillin, an end-of-life doula, based in Richmond, Virginia, reasonably wonders “Can you imagine if a woman was going through labour and no one around her was talking about it or preparing for it? There’d be an uproar if we treated birth like we treat death”.

When it comes to dying, traditions and modernity don’t necessarily have to clash. Indigenous cultures have long regarded death as an essential part of life, and even though thanks to modern healthcare options the process of dying these days can be virtually painless, a “good death” is more than just a painless one. That being said, the emergence of death doulas is, perhaps, the best thing that’s happened to humanity in a long time.

Complete Article ↪HERE↩!

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Living With Ghosts

By Mary O’Connor

“What’s your name?”
“Mary.”
“Mary what?
“O’Connor.”
“From where?”
“From here.”
“No, you’re not.”
“I’m your daughter.”
“No, you’re not. What’s your name? . . .”
“We should get him a tape recorder.”
“He’s human. He needs a human voice.”
“But his is almost gone.”
“That doesn’t matter.”

Staring into the face of an undead ghost in a green tweed jacket and flat-cap over toast and cornflakes is unnerving at the best of times; and traumatic at the worst. Especially when that ghost is your father. And the cornflakes have gone soggy.

But unlike gothic novels or films where ghosts happily offer themselves up as symbols of repressed memories, traces of crimes against innocents, and (usually) murderous pasts, this ghost has never crossed over into the realm of the metaphorical. Inconveniently, it decides to remain very, very human. Actually, that depends on your definition of human.

Even more inconvenient is the fact that this ghost refuses to follow the script and disintegrate with the morning light. Instead, it prefers to haunt the modern comforts of an electric armchair; swapping dreary castles for daytime television and crumbling dungeons for motorised beds.

And that’s just the start of my day living with a living ghost. Or Alzheimer’s as it’s otherwise known. Or, more correctly, my father’s Alzheimer’s.

Living with Alzheimer’s, both as a carer and sufferer, is a growing phenomenon in the UK. Often confused with dementia, Alzheimer’s refers to a physical disease which affects the brain while dementia is simply a term for a number of symptoms associated with the progressive decline of brain function. These symptoms can include memory loss, difficulty with thinking and problem solving, and challenges with language and perception. There are over 400 types of dementia—with Alzheimer’s and vascular dementia as the most common forms. According to the Alzheimer’s Society of the UK, dementia is now the leading cause of death in the UK with someone developing it every three minutes. Alzheimer’s is classified as a “life-limiting” illness according to the NHS, but sufferers can live for many years after the initial diagnosis, depending on the progression of the disease. Divided into three stages, early, middle, and late, the symptoms of Alzheimer’s gradually become more severe as the disease progresses and more parts of the brain are affected.

In the early stages, having Alzheimer’s as a companion wasn’t too unpleasant; the emptiness hadn’t fully taken over and I had more human than spectre to talk to. I could still pretend to have a normal(ish) life with only the minor inconvenience of a (mostly) present parent, despite the occasional wandering through doors unexpectedly and lunatic outbursts. The human part kept his smiling eyes, watching the world orbit around the sweat-stained tea-pot and apple tart. But the Alzheimer’s relentless erasure of my father left a morbid spectre sitting in his chair at the kitchen table.

In the middle stages, my father’s personality and identity dropped away like discarded clothes. His manner of speech was the first to surrender to the disease. Forgetting words rapidly metamorphosised into hours of repetitive questioning, as if seeking to ground himself in concrete knowledge of the now while his fingers grabbed vainly at a slipping sense of reality. The final stages of the disease witnessed his childish cries for help without knowing what or who he wanted.

“Gone childish” is an archaic term that was once used to describe dementia and Alzheimer’s sufferers before these diseases were better understood. Capturing the vulnerability these diseases inflict on their sufferers, the phrase sums up the centrality of memory to the human experience. If our identities are formed by our experiences, and these experiences are stored in our memories, shaping who we are and how we make decisions, what can we do when we have no memory? Without a roadmap of precedence, how can you plan for the future or know yourself without knowing how you got to where you are now? Like children, Alzheimer’s sufferers lose a sense of the past and futurity. They become transfixed in the present like ghosts trapped in limbo.

The last stages of my father’s disease cemented his role in the family home as the new phantasm. Like a well-behaved, conventional ghost he punctuated our nights with night-walking, ghoulish shrieks, hallucinations, and knocking on doors at all hours while the day-time witnessed empty eyes peering out from behind the safety of a purple blanket. Innocent of blame, our ghost blocked our escape from the house. For fear of hurting himself, we couldn’t leave him alone but grew resentful for being held hostage by a madman with no memory or awareness of his own actions.

After being stripped of memory and identity, my father’s Alzheimer’s left a shell of body; a ghastly reminder of the person that had once inhabited it. Bereft of the markers of humanity, this animated mannequin asked, “What makes up a human? Is it the mind? Or the body? And what happens when you take one from the other?”

Researchers have identified the cause of Alzheimer’s as the build-up of abnormal structures in the brain called ‘plaques’ or ‘tangles’. These structures cause damage to brain cells and can block neuro-transmitters, preventing cells from communicating with each other. Over time, parts of the brain begin to shrink with the memory areas most commonly affected first. Why these build-ups occur or what triggers them is not yet understood, but researchers now know that it begins many years before symptoms appear.

Ancient Roman and Greek philosophers associated the symptoms dementia with the ageing process. However, it was not until 1901 when the German psychiatrist, Alois Alzheimer, identified the first case of the disease. Medical researchers during the twentieth century began to realise that the symptoms of dementia and Alzheimer’s were not a normal part of ageing and quickly adopted the name of Alzheimer’s disease to describe the pattern of symptoms relating to this type of neurological degeneration.

No physical markers like the puckered lines of surgery scars or the uneven hobble of a game leg signposted my father’s declining health. But the slow creep of this living death brought on grief long before his body was expected to fail. Without the essence of the person, all of their quirks and curiosities, which once animated a familiar body, how do you grieve for someone’s loss before they have died? And how do you cope with the guilt?

This type of grief is usually referred to as anticipatory grief. It is a type of grief that is experienced prior to death or a significant loss. Typically, it occurs when a loved one is diagnosed with a terminal or life-threatening illness, but it can also happen in the face of a personal diagnosis. However, it can often trigger feelings of guilt because people feel ashamed for grieving their loved one’s death before they are dead.

With my father’s memory gone, my connection with him was broken. During the later stages of the disease he forgot my name and my existence. Fading from my life, his body remained as a perverse mockery of the person that had once inhabited it. Now all that haunts me are the memories of peering over barley stalks before the autumn harvests at a grizzled old farmer in a flat cap and tweed jacket, a hand reaching out to help guide the walk home.

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‘I don’t want to compete with this disease’

— What physician-assisted death is like for a family

Margaret Handley wrote the essay so her children understood their grandmother’s experience and to help others learn about physician-assisted dying.

By Meghan Holohan

It started with weakness and pain when walking. Then Jacqueline Shapiro had a deep lesion on her leg before she broke it, oddly, and doctors struggled to set it. The pain medications caused her to have bad reactions and her energy waned. Eventually doctors learned that the 85-year-old had lymphoma. She underwent three grueling months of surgery, radiation and chemotherapy, but it only left her exhausted and feeling worse.

“It can cause delusions and a sort of psychosis. And it just was horrible, just horrible. And it was really hard for her to get her pain stabilized,” Margaret Handley, her daughter who is an epidemiologist living in the San Fransisco Bay area, told TODAY. “If you looked at those episodes medically, they were going well, but it was just part of an escalating discomfort for her. She increasingly felt like ‘I don’t think this is a good place for me to be.’”

Shapiro worried about spending the rest of her life undergoing painful treatments that might not even cure her cancer.

“She didn’t want to be lying there dwindling while people take care of her,” Handley said.

When a palliative care doctor visited Shapiro to discuss her pain, they started talking about California’s End of Life Act. People with terminal illnesses, who meet a certain criteria, can request drugs to aid dying, according to the California Department of Public Health. Similar legislation exists in eight other states. Compassion & Choices, a nonprofit working to improve patient rights and individual choice at the end of life, recently reported that Brittany Maynard’s advocacy of “death with dignity” inspired the passage of medical aid dying laws in Washington, D.C, Colorado, Hawaii, New Jersey and Maine.

Shapiro met those requirements. Hearing about the option of medically assisted death seemed to lessen her burden.

Handley shared more about her mother’s death in an article in the Annals of Family Medicine.

“She told me right away after the doctor left, ‘That’s what I’m going to do — physician-assisted dying. I don’t want to compete with this disease — that’s not what I want to do with the rest of my life,’” she wrote. “I sat with her and my sadness and then, over the next few days, we set upon the logistics to put her right-to-choose into motion.”

While her oncologist thought there was a possibility that the cancer could go into remission, Shapiro wasn’t sure if she could endure more treatment. Then she spoke with a doctor from the physician-assisted dying group, who described how the process works. He noted that many people request the drugs but don’t ultimately go through with it. Handley felt impressed by how all three doctors acted when advising her mother.

“I don’t think that (the doctors’ input) affected her decision,” Handley said. “But it was also much better that she heard them and witnessed them doing their work and felt like she was part of the narrative, not outside of it.”

Shapiro loved nature and the forest. As a young woman, she spent her summers at Yosemite and lived in the Sierra Nevada mountains until age made a remote living situation a little tougher. She had a garden with plants from the forest and an ornery cat name, Darcy, named after Mr. Darcy from “Pride and Prejudice.” While she was sick, she worried about his well-being. Making the decision for physician-assisted death put her mind at ease about what would happen to her pet, her plants and her life. This allowed Shapiro to say goodbye to her family the way she wanted, watching nature shows and cat videos, enjoying one another’s company.

“We were lucky to know it was coming and to be able to say let’s have these moments together,” Handley said.

Handley and her brother sat with their mother, with Darcy on her lap. As Handley read the poem, “Evening” by Rainer Maria Rilke, her mom passed away.

“It was a really powerful experience to be able to sit with someone who is making this choice,” Handley said. “That was a good experience for us to share.”

Handley said she wrote the essay because she felt there were so few personal stories about what physician-assisted death is really like. She also hoped that by sharing the experience her three children would also better understand her mom’s choice and experience.

“I wanted to write down what happened with my mom’s decision-making so that they would understand,” she said. “I thought this was just adding a little more real personal experience of what (physician-assisted death) looks like in one given situation.”

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