I Helped My Mother To Live and Later Die

— After begging her mother to live longer, this author later honors her mother’s wishes for how she wanted to be treated at the end of her life

Kathleen and her mother, less than two years before Mary Elizabeth’s death

By Kathleen M. Rehl

“Please don’t die now, Mom! I can’t handle two funerals back-to-back.”

In a panic, I squeezed my mother’s hand as I sat beside her bed. The hallway’s stark white light streamed through her doorway. Announcements crackled over an intercom as an equipment cart clattered past her room. Mom’s roommate moaned in her sleep before returning to rhythmic snoring.

Then, finally, a sweet-faced nurse’s aide said I could stay beyond regular visiting hours. Staring intently before she spoke, Mom said, “Your father came to me in a dream last night and told me it was time to let go and be with him again.”

Mom Loved Her New Life

Flashback to Dad’s death from colon cancer, a few days after his 80th birthday. After he passed, Mom moved over 1,000 miles from her house on a dusty, isolated road to live near me and my husband, Tom, in Florida.

She blossomed like the red roses she cared for near her apartment.

Leaving sadness and grief behind, she chose a sunny independent living apartment in a continuing care retirement community (CCRC). There she blossomed like the red roses she cared for near her apartment.

Mom made new friends fast, joined afternoon card games, shelved books at the community library, tended a meditation garden, participated in church activities, baked yummy chocolate chip cookies to share, traveled to visit a few relatives across the country, and enjoyed an occasional happy hour glass of sangria with girlfriends.

In addition, Tom and I included Mom in many local activities. “I love my new life here,” she often said. Mom’s newfound happiness lasted almost two years.

Life Changed

A serious fall interrupted Mom’s joyful journey. After spending Thanksgiving with Tom and me, my mother fell in her apartment, shattering her femur. Mom’s next-door neighbor’s frantic phone call brought the ambulance.

At the hospital, we authorized emergency orthopedic surgery. A few days later, she transferred to her CCRC’s skilled nursing care wing, with weeks of physical therapy scheduled. Her spirit was crushed.

I was devastated, of course, but the knockdown punch to the gut hit in early December. That’s when my husband visited his doctor, feeling unusually tired, with jaundiced skin and abdominal pain. He called me at work later, saying he’d been admitted to the hospital for specialized testing.

I bolted from my desk and didn’t return to it for many weeks. Meetings and phone calls with a medical staff filled our coming days. By week’s end, we knew his diagnosis was a callous killer — late-stage inoperable and untreatable liver cancer.

His prognosis was death within a few months. My 72-year-old husband chose home hospice care rather than a war he couldn’t win.

Mom Rallied

“All right! I won’t die now,” Mom said from her nursing home bed when she understood Tom’s death sentence. And that’s just what she did.

Mom mustered her petite body’s life force, willing her health to improve.

She completed prescribed physical therapy, navigated with her fractured leg plus a walker, and moved back into her apartment with daily assistance from an aide and friends.

I boomeranged between caring for my mother and my husband. Then, Tom’s progressive downward spiral gathered speed while Mom’s condition stabilized. He died in my arms on February 12, 2022 with my brother beside us both.

A packed church celebrated my husband’s life. Mom sat near me as I stood in the funeral’s receiving line, both brokenhearted.

Years Before, We Talked About Care Preferences

“I don’t want you kids to have to pull the plug on me someday,” Mom said over a decade before.

Several years before Dad’s death, our family discussed health care preferences if we experienced a severe illness. My mother had once carried the burden of being the one who authorized disconnecting her aunt and mother from life support after each suffered debilitating strokes.

“I didn’t know what they would have wanted because we never talked about topics like that back then.”

“I didn’t know what they would have wanted, because we never talked about topics like that back then,” she said. Mom felt she “killed Aunt Frances and your grandmother.”

Dad, Mom, Tom, and I completed the Five Wishes advance care planning document years before we updated our estate plans. It’s easy to understand, covering one’s personal, spiritual, medical, and legal wishes at the end of life.

In addition, it identifies the person designated to make care decisions when you can’t do it yourself. After my father passed, Mom revised her plans, naming me the primary health care agent.

The Beginning of Mom’s Ending

After my mother told me about her dream of Dad, she didn’t speak of that vision again until Tom died. Then her health plummeted within a month. Complications put her in the hospital again.

Two older adults getting off a bus. Next Avenue, caregiving for mom
Mom and Tom in St. Petersburg

That’s when she repeated that Dad was preparing to welcome her. She wanted to go. Tearfully hugging my mother, I told her it was OK. I understood. I wouldn’t hold her back.

They requested my mother’s advance health care documents when she was admitted to the hospital. I gave them a copy of her Five Wishes form, verifying she didn’t want life support treatment to keep her body alive when she was close to death.

Even though this paperwork was accepted and filed, Mom’s plans were almost upset when she went into immediate cardiac arrest in the middle of the night. Finally, exhausted, I left her hospital room to go home for a shower and a few hours of sleep. But a hospital nurse called after midnight, saying they were taking Mom to the intensive care unit (ICU) for life support.

“No! That’s not what she wants! Read her advance care directives!” I yelled over the phone. “I’ll be there as fast as I can. Please don’t move Mom!”

I pulled on my jeans and raced for the car, driving in the dark over the speed limit. I ran to her room with a copy of Mom’s Five Wishes form. Assistants started rolling her bed into the hall on the way to the elevator and the ICU.

Committed to Her Wishes

The nurse said she needed to get the doctor. He looked over the forms, stepped away for a few minutes, and returned to ask what I wanted. “Plain palliative care, please!” I answered.

I encourage you to avoid heartache and upset as you consider what you want and do not want for your end-of-life care.

Fast forward. That’s precisely what happened, with my mother moved into a private hospice care room. My brother and I were allowed to camp with her in that room for the remaining three days of her life.

We facilitated a few short phone calls with her family, sang to her, read her favorite scriptures, and monitored her morphine. Then, before slipping into her final slumber, she told us of a clear new vision, where she saw relatives waving from across a bridge and preparing for a party.

“They have to wait for me to cross over that bridge before starting the festivities,” she said. Tom and my Dad were in that welcoming crowd, along with her mother and aunt. She finally said, “Awesome!” as she crossed her bright bridge.

Most Don’t Have End-of-Life Conversations

In June 2020, the National Poll on Healthy Aging was conducted for the University of Michigan’s Institute for Healthcare Policy and Innovation. A sample of U.S. adults aged 50–80 was asked about their advanced care planning.

Nearly two in five adults aged 50–80 had not discussed their health care preferences if they experienced a severe illness. More than two in three hadn’t completed an advance directive and durable power of attorney documents.

More than half of the folks who had not talked about their care preferences with others or completed related legal documents said it was because they needed to take the time to do this.

I encourage you to avoid heartache and upset as you consider what you want and do not want for your end-of-life care. I hope my story encourages conversations with you and your loved ones. It’s a precious gift you can give them.

Complete Article HERE!

A new approach to older people’s end of life care

— Living and dying well

Remodelling palliative and end of life care requires different ways of working, different partnerships and a sharing of power

By Caroline Nicholson

Global ageing means that death is now most commonly an event of older age. For most older people, the nature of living and dying in later life will be frailty and multimorbidity (MM – the co-existence of two or more long-term conditions).

Frailty is age-related and describes the gradual loss of inbuilt physiological reserves that leads to sudden, potentially fatal health deteriorations following seemingly small events, such as a minor infection. Frailty and MM increase the risk of dying in older age; those with severe frailty are five times more likely to die within a year than non-frail elders. However, the fluctuating progression of frailty, often over years, can make it hard to proactively identify when an older person is in their last year of life which is often a marker used as a referral to palliative and end of life services. Access to palliative care for all people with life-limiting conditions is recognised as important at the highest policy level. However, the experience of older people nearing the end of their lives is often poor. Many older people risk over-treatment to prolong life, and under-treatment from palliative care; actively addressing quality of life and person-centred needs and care goals, when a cure is not possible, is too often poorly handled.

Providing end of life care for older people – moving beyond prognosis

Prognosis, estimating when someone is likely to die, can help to facilitate future care planning conversations and support patient-centred care goals and conversations with loved ones. However, the assumption that time to death should, and can, trigger end of life care is problematic. Evidence suggests accurate prognosis is difficult: overestimation is common and temporal estimates are mostly inaccurate. Prognostication is particularly difficult in older adults with frailty, where there are no standardised and evaluated models and markers to support end-of-life identification. Time-based approaches for referral to end-of-life/palliative care services are increasingly questionable. Rather, end-of-life care provision for older people should be focussed on a holistic formal assessment of need and tailored care. This is the focus of the University of Surrey’s Living and Dying Well research programme.

“Living And Dying Well” research

Our work is focused on the duality of older people living and dying well over a life long-lived. Currently, older people with frailty too often fall between services either focused on living independently or imminently dying. Our work has evidenced the centrality of any end-of-life care responses to take account of the strengths and capabilities of older people, including their social connections, as well as any potential and actual vulnerability. All too often, care interventions can leave an older person feeling trailer, experiencing a sense of being “done to” rather than “cared about”. We focus on older people living at “home”, the place of preference for most older people. Core Activities include:

Evidencing specific needs and tailored care for older people at end of life

The HEE/NIHR funded PALLUP study evidences the specific end-of-life needs of older people with frailty and current service responses. This evidence will be translated with key stakeholders to develop a service framework and resources to support tailored care. A scoping review of published literature evidencing the perspectives of older people with MM supported a consensus exercise to gain agreement on the core needs of older people with frailty at end of life.

Data from facilitated virtual interviews with older people and their families and a two-round online survey with health, social and voluntary services and family carers was analysed. Needs were grouped under physical, social, practical, spiritual, and physical domains. Most consensus across all stakeholders were predominantly in the social and practical domains. The Top 5 identified needs were, 1) Trust in care providers – to be recognised as a person 2) Not to feel lonely 3) Opportunities to discuss current and future care needs 4) Support with medication – administration and optimisation 5) Services and interventions to support mobility. Key to meeting needs were the role of family carers who were often unsupported and under great strain.

Image: © University of Surrey
Image: © University of Surrey

The PALLUP film trailer can be accessed here and the full film by completing the film registration form here.

Reconfiguring and resourcing care services including “family”

The NIHR Palliative and End of Life Care Research Partnership is working in 3
areas in England to grow a research partnership of care providers across sectors that will improve the coordination of end-of-life care for community-dwelling older people living with advancing frailty. Social, voluntary and health care, and representatives of older people and family carers are involved. Resourcing services includes developing tailored tools to support older people and their family to articulate their needs and for these to drive care provision. The Pro-frail study will develop a PROM/PREM specifically addressing the needs of older people with frailty in the community.

Our work is also developing resources to support the increasingly essential role that family or, perhaps more accurately, unpaid carers, play in the care of older living in the last phase of life. The dual expert study is supporting family decision-making at points of uncertainty.

In conclusion: end of life opportunities and challenges

It is a source for great celebration that most people will live and die in older age. In England, new legislation denotes that end of life care is no longer a sub-speciality, but a universally required service. There is a moral and clinical imperative for palliative care services to contribute to the support of people with frailty and MM as they near the end of their lives. Remodelling of palliative and end of life care services requires different ways of working, different partnerships and a sharing of power to enable a focus more on need rather than diagnosis and prognosis.

Complete Article HERE!

Weighing Risks of a Major Surgery

— 7 Questions Older Americans Should Ask Their Surgeon

BY Judith Graham

Larry McMahon, who turns 80 this month, is weighing whether to undergo a major surgery. Over the past five years, his back pain has intensified. Physical therapy, muscle relaxants, and injections aren’t offering relief.

“It’s a pain that leaves me hardly able to do anything,” he said.

Should McMahon, a retired Virginia state trooper who now lives in Southport, North Carolina, try spinal fusion surgery, a procedure that can take up to six hours? (Eight years ago, he had a lumbar laminectomy, another arduous back surgery.)

“Will I recover in six months — or in a couple of years? Is it safe for a man of my age with various health issues to be put to sleep for a long period of time?” McMahon asked, relaying some of his concerns to me in a phone conversation.

Older adults contemplating major surgery often aren’t sure whether to proceed. In many cases, surgery can be lifesaving or improve a senior’s quality of life. But advanced age puts people at greater risk of unwanted outcomes, including difficulty with daily activities, extended hospitalizations, problems moving around, and the loss of independence.

I wrote in November about a new study that shed light on some risks seniors face when having invasive procedures. But readers wanted to know more. How does one determine if potential benefits from major surgery are worth the risks? And what questions should older adults ask as they try to figure this out? I asked several experts for their recommendations. Here’s some of what they suggested.

What’s the goal of this surgery? Ask your surgeon, “How is this surgery going to make things better for me?” said Margaret “Gretchen” Schwarze, an associate professor of surgery at the University of Wisconsin School of Medicine and Public Health. Will it extend your life by removing a fast-growing tumor? Will your quality of life improve by making it easier to walk? Will it prevent you from becoming disabled, akin to a hip replacement?

If your surgeon says, “We need to remove this growth or clear this blockage,” ask what impact that will have on your daily life. Just because an abnormality such as a hernia has been found doesn’t mean it has to be addressed, especially if you don’t have bothersome symptoms and the procedure comes with complications, said Drs. Robert Becher and Thomas Gill of Yale University, authors of that recent paper on major surgery in older adults.

If things go well, what can I expect? Schwarze, a vascular surgeon, often cares for patients with abdominal aortic aneurysms, an enlargement in a major blood vessel that can be life-threatening if it bursts.

Here’s how she describes a “best case” surgical scenario for that condition: “Surgery will be about four to five hours. When it’s over, you’ll be in the ICU with a breathing tube overnight for a day or two. Then, you’ll be in the hospital for another week or so. Afterwards, you’ll probably have to go to rehab to get your strength back, but I think you can get back home in three to four weeks, and it’ll probably take you two to three months to feel like you did before surgery.”

Among other things people might ask their surgeon, according to a patient brochure Schwarze’s team has created: What will my daily life look like right after surgery? Three months later? One year later? Will I need help, and for how long? Will tubes or drains be inserted?

If things don’t go well, what can I expect? A “worst case” scenario might look like this, according to Schwarze: “You have surgery, and you go to the ICU, and you have serious complications. You have a heart attack. Three weeks after surgery, you’re still in the ICU with a breathing tube, and you’ve lost most of your strength, and there’s no chance of ever getting home again. Or, the surgery didn’t work, and still you’ve gone through all this.”

“People often think I’ll just die on the operating table if things go wrong,” said Dr. Emily Finlayson, director of the UCSF Center for Surgery in Older Adults in San Francisco. “But we’re very good at rescuing people, and we can keep you alive for a long time. The reality is, there can be a lot of pain and suffering and interventions like feeding tubes and ventilators if things don’t go the way we hope.”

Given my health, age, and functional status, what’s the most likely outcome? Once your surgeon has walked you through various scenarios, ask, “Do I really need to have this surgery, in your opinion?” and “What outcomes do you think are most likely for me?” Finlayson advised. Research suggests that older adults who are frail, have cognitive impairment, or other serious conditions such as heart disease have worse experiences with major surgery. Also, seniors in their 80s and 90s are at higher risk of things going wrong.

“It’s important to have family or friends in the room for these conversations with high-risk patients,” Finlayson said. Many seniors have some level of cognitive difficulties and may need assistance working through complex decisions.

What are the alternatives? Make sure your physician tells you what the nonsurgical options are, Finlayson said. Older men with prostate cancer, for instance, might want to consider “watchful waiting,” ongoing monitoring of their symptoms, rather than risk invasive surgery. Women in their 80s who develop a small breast cancer may opt to leave it alone if removing it poses a risk, given other health factors.

Because of Larry McMahon’s age and underlying medical issues (a 2021 knee replacement that hasn’t healed, arthritis, high blood pressure), his neurosurgeon suggested he explore other interventions, including more injections and physical therapy, before surgery. “He told me, ‘I make my money from surgery, but that’s a last resort,” McMahon said.

What can I do to prepare myself? “Preparing for surgery is really vital for older adults: If patients do a few things that doctors recommend — stop smoking, lose weight, walk more, eat better — they can decrease the likelihood of complications and the number of days spent in the hospital,” said Dr. Sandhya Lagoo-Deenadayalan, a leader in Duke University Medical Center’s Perioperative Optimization of Senior Health program.

When older patients are recommended to POSH, they receive a comprehensive evaluation of their medications, nutritional status, mobility, preexisting conditions, ability to perform daily activities, and support at home. They leave with a “to-do” list of recommended actions, usually starting several weeks before surgery.

If your hospital doesn’t have a program of this kind, ask your physician, “How can I get my body and mind ready” before having surgery, Finlayson said. Also ask: “How can I prepare my home in advance to anticipate what I’ll need during recovery?”

What will recovery look like? There are three levels to consider: What will recovery in the hospital entail? Will you be transferred to a facility for rehabilitation? And what will recovery be like at home?

Ask how long you’re likely to stay in the hospital. Will you have pain, or aftereffects from the anesthesia? Preserving cognition is a concern, and you might want to ask your anesthesiologist what you can do to maintain cognitive functioning following surgery. If you go to a rehab center, you’ll want to know what kind of therapy you’ll need and whether you can expect to return to your baseline level of functioning.

During the covid-19 pandemic, “a lot of older adults have opted to go home instead of to rehab, and it’s really important to make sure they have appropriate support,” said Dr. Rachelle Bernacki, director of care transformation and postoperative services at the Center for Geriatric Surgery at Brigham and Women’s Hospital in Boston.

For some older adults, a loss of independence after surgery may be permanent. Be sure to inquire what your options are should that occur.

Complete Article HERE!

Thinking of Becoming a Guardian?

What you should consider before you agree to be responsible for an incapacitated loved one

By Patty Blevins

What you should consider before you agree to be responsible for an incapacitated loved one

If you haven’t had any experience with guardianship for adults with dementia, it’s likely you don’t understand just how complex it is. You are not alone. Many family members of the estimated 6.5 million dementia patients in the U.S. struggle to understand if it is an option for their loved one.

Many more people will face that decision because the number of people with dementia will grow to 14 million by 2060, according to Centers for Disease Control estimates.

An adult son making food for his mother with dementia. Next Avenue
In determining whether to place someone under a guardianship and curb their legal rights, the court may call on a geriatrician or psychiatrist to assess the person’s functional behavior, cognitive function, disabling conditions and ability to meet their essential needs.

The simplest definition of guardianship is the position of being responsible for someone else. State courts appoint a guardian to make decisions for another person if the court finds the person to be incapacitated or unable to make safe, reasonable decisions for themselves, according to National Academy of Elder Law Attorneys (NAELA).

The simplest definition of guardianship is the position of being responsible for someone else.

Guardianship is serious business. People placed under guardianship, who are called wards, may lose their independence in making decisions about their finances, legal issues and health care. According to the U.S. Department of Justice, full guardianship can control whether wards can vote, who they may marry, where they live and if they can make end-of-life decisions for themselves.

An article in the American Journal of Alzheimer’s Disease and Other Dementias explains that the two tasks that are regularly evaluated in determining capacity are an individual’s ability to manage personal finances and take medications as prescribed.

Choosing and Monitoring Guardians

In determining whether to place someone under a guardianship and curb their legal rights, the court may call on a geriatrician or psychiatrist to assess the person’s functional behavior, cognitive function, disabling conditions and ability to meet their essential needs. A geriatrician is a specialty doctor who treats people over 65 with a focus on diseases like dementia that primarily affect this age group.

The National Academy of Elder Law Attorneys says guardianships offer safeguards. Guardians, for example, must periodically update the court on the ward’s finances and health status. Even then, courts have the authority to initiate unscheduled reviews of guardians’ decisions about their wards’ finances, property and health care.

Guardianship, “when properly used,” is a beneficial method to protect an incapacitated person for whom no other means are available to assist with informed decision making, the organization says.

That describes the original intent of guardianship, but it assumes the guardian is honest and accountable. Unfortunately, this is not always the case. Ample examples of abuse are documented by researchers and prosecutors.

An article in the Journal of the American Geriatrics Society first published in April 2022, sought to make a quantitative evaluation of guardianship in the United States but the authors found little consistent standards and data collection regarding the impact on patient care and the quality of life of people subject to guardianship.

Impediments to Oversight

The inconsistencies included fundamental matters, including the following:

  • The scope of the guardian’s duties.
  • Minimum standards for guardians. As of 2020, there were two states that had yet to require a background check.
  • Determination of incapacity. In the past, this decision often defaulted to a physician based solely on a psychiatric or medical diagnosis.
  • Regular independent reviews of the ongoing necessity of guardianship.
  • Educational requirements for guardians. Guardians are often required to serve in many roles that they may have minimal or no training. The National Guardianship Association (NGF) partnered with the Center for Guardianship Certification (CGC) to standardized educational content and offer certification.
  • Other drawbacks of guardianship included:
    • Once guardianship is assigned, there is greater tendency for the person to become lost to follow up. People who have been labeled as incompetent or incapacitated have limited ability to advocate for themselves, contact an attorney or access funds for court proceedings.
    • There is a greater tendency to assign full guardianship instead of less restrictive alternatives.

    Recent Guardianship Law

    In 2017, the Uniform Law Commission, a non-profit association that provides states with model legislation to clarify and standardize laws across jurisdictions , released The Uniform Guardianship Conservatorship and Other Protective Arrangements Act to encourage the “trend toward greater independence for persons under guardianship.”

    “Over 40% of the American population has never discussed their wishes for end-of-life care with loved ones.”

    The act addresses many of the previous inconsistences and proposes solutions going forward. So far, seven states have enacted the model guardianship statute in full and many more have adopted parts of it, according to the National Center on Elder Abuse.

    Alternatives to Guardianship

    There are multiple alternatives to guardianship but Americans need to start talking to each other. “Over 40% of the American population has never discussed their wishes for end-of-life care with loved ones,” according to the article in the Journal of the American Geriatrics Society. These measures should begin at the first sign of memory loss or preferably when getting ready for retirement to delay or prevent guardianship.

    • Tell your family your wishes and write them down in an advanced directive (living will and health care power of attorney).
    • Create a value history. A value history is based on values and beliefs and it provides a person’s future care choices.
    • Evaluate limited (partial) guardianship as an alternative to full guardianship. In this case, guardianship is granted only over the areas for which the person lacks the capacity for rational decision making (finances).
    • Designate a durable power of attorney and list two or three backup candidates for this important position if the first choice is not available. This agent could be responsible for financial, legal and personal matters.
    • Investigate care management services. Care managers are usually nurses or social workers that are trained to identify and provide for a client’s medical, psychosocial and financial needs.
    • Find a payee. Many organizations offer money management services which serve as a payee for vulnerable clients.
    • Enlist the help of your primary care doctor. You may have to teach them about guardianship and the role you would like them to play, but they could become your greatest asset.

    Guardianship as the Only Answer

    Appointing a family member or friend as your guardian often is the ideal solution. But sometimes a court-appointed guardian is the only answer. My own experience is an example.

    I felt a sense of relief at the appointment of a guardian outside the family. It relieved us of the possibility of having to tell him that he had to stay in a nursing home for his own safety.

    My father was diagnosed with multi-infarct dementia in 2016. The disease transfigured him from an intelligent, robust, fun-loving father into, let’s say, something different. My mother already had passed away, and my three siblings and I agreed that his guardian should be the same sibling who was listed as his Health Care Power of Attorney.

    That legal document lets you state your medical wishes and appoint another person to make sure those wishes are followed if you are incompetent or no longer able to make your own health care decisions.

    Release, Then Relief

    We all arrived at the courthouse and my father surprised all of us by saying he didn’t want my sister, who had his Health Care Power of Attorney, to be his guardian. Another court hearing was scheduled, at which he agreed to have the court appoint a lawyer to be his guardian.

    I felt a sense of relief at the appointment of a guardian outside the family. It relieved us of the possibility of having to tell him that he had to stay in a nursing home for his own safety. We would not be the ones sifting through his financial records to explain his debt and explain that his mortgage was being foreclosed on. We could preserve a few remnants of a familial relationship and focus on being supportive.

    The guardianship duties performed by the appointed attorney were far from flawless. But, overall, they served as the best answer for the situation at the time.

Complete Article HERE!

‘I knew she was dying, but didn’t expect her to time it so spectacularly’

— Losing my mother as my baby was born

As I lay in the maternity ward, I learned my mother was gravely ill. What followed was a year full of love, rage, resentment – and a strange cocktail of new life and imminent death


At the top of my fridge is a small ceramic jar of stilton, and every time I open the door I can smell it. Recently, it’s started contaminating other food. This morning I binned some butter after it took on the same scent.

The stilton went off in July 2019 but I can’t bring myself to throw it away. It was a flat-warming gift from my mother, even though my boyfriend, Oscar, hates strong cheese and I was then six months pregnant, so unable to eat it. When she produced it from a calligraphed paper bag, wrapped in green tissue, we didn’t tell her this. Instead, we thanked her and put the cheese in the fridge. When we moved flats two years later, the cheese came with us.

The stilton had been a mistake, one of many she made before she died a year later. They began when she forgot to refrigerate the turkey at Christmas, and ended when she failed to register I was in labour. Both were symptomatic of an illness that was already fogging her mind, but because it’s easier to remember the bad things over the good – it makes the loss less gaping – now, every time I open my fridge and smell that cheese, I thank God she’s not here.

A week before I was due to give birth, I realised my mother was going to die. It was late May and she had rung me at the office, repeating what a doctor had just told her – that there was a “blockage” around her liver. The vindication in her voice was palpable after feeling “not quite right” for a while. I had been doing my pelvic floor exercises at my desk and took her call in the stairwell. Down the line, I could hear her sucking her teeth, which was the sound she made when she was scratching.

I had spoken to my mother every day since I left home aged 18. People were often surprised when I told them this, their raised eyebrows suggesting that a reasonable relationship with their own parents relied on more limited contact. But we were best friends and uncommonly close – the idea of going to bed without an update on her septic tank was unthinkable. On the day I found out I was having a boy, I actually felt disappointed because we wouldn’t be able to replicate the relationship.

But I also rang her to check she was still alive. My mother was young, even when she died, at 69, but she had been party to her fair share of ordinary disappointment. Her father died when she was a child and, by the time she was my age, she was divorced with two young daughters. When she was 50, her second husband died (I was 18). And by 60, she’d had a heart attack, calling me with brisk alacrity right after it happened, still sitting on the kitchen floor, holding a scourer (she had been cleaning the oven). For this reason, I spoke to her little and often.

The last time I had seen her was in late April, the week before Easter, in the West Country house where she, my sister and I had once lived. She looked thin, and I could tell she was secretly pleased about that. She had started to feel nauseous, first at night, then all the time, and would eat raw ginger after every meal. When she was out, she’d carry it foil-wrapped in her handbag and produce it like Canderel.

Then came the itching, which consumed the whole weekend. I spent that Good Friday rubbing aqueous cream over the small lines that spooled across her back at intervals, but by Monday I’d rubbed enough. My enormous belly was itchy too, but, I yelled – and I really did yell – because I was pregnant, I couldn’t use the creams.

Permanently on the lookout for a heart attack, we were blindsided when she woke up one morning in early June the colour of mustard. Her GP suspected a liver issue but, recalling her monthly whisky and soda, we all thought otherwise. Except he was right. Like most pernicious cancers, this one didn’t reveal itself until it was too late, dragging an anthology of nasty symptoms along with it. We actually never called it cancer – because of the tumour’s size and location, it wasn’t diagnosed until after she died – but like someone lost at sea, this always gave her illness an unwelcome lick of ambiguity.

In the days leading up to the birth, I grew rounder and happier, while my mother got thinner and sadder – the same person, just shrunk in the wash. I cooked soups for the freezer and swam in cold ponds, the baby heaving itself around as I entered the water. In bed, I read books about motherhood by Penelope Leach and, for balance, Rachel Cusk, studying their methods like syllabuses. I still rang her every day, but the calls got shorter. The last time we spoke before the birth, I was killing time at the zoo and we had a row, this time about whether my sister would visit me in hospital, or stay with her. She won.

I always knew I’d have a baby, but it wasn’t until I got together with Oscar that I actually wanted one. Then, one night, I cornered him in the shower of our old flat and gave him an ultimatum, even though (as he often reminds me) he felt the same way. To start, we played a sort of roulette, but nothing happened. Two weeks later, not pregnant and on holiday in Exmoor, I stood in a field and told him I was barren, actually using that word. By autumn, I was pregnant.

I went into labour on the first Saturday in June. It was one of those days when London pretends to be another city, windless and warm, and no one knows how to dress, so they simply don’t. I was woken at around 5am by my first contraction and immediately downloaded an app to time them. In between contractions, we ate toast, and Oscar bleached the kitchen. Afternoon became night, and night became morning. By Monday, 5.30am, still contracting every 12 minutes and unslept for 48 hours, I sat on the edge of my bed watching a thin ribbon of light come through our curtains. I deleted the app.

Finally, that evening, we were in a cab to the hospital, thunder clapping across the night, pain dancing across my belly. The baby had become lodged on my pubic bone, so the following day, at 9cm, I started to push him out. This was when I got scared. But just as his head began to emerge, I was told we had to push him back up using a foetal pillow, a recent invention that is supposed to make the whole process less traumatic. There was a slim chance the baby had haemophilia so we couldn’t use forceps. There is nothing poetic about an emergency C-section – he was ejected like a cassette – and I was too wobbly to hold him. The whole thing took 60 hours, and I thought of my mother once, at 8cm, when apparently I called out for her.

My sister was electric on text throughout, but I didn’t hear a peep from my mother. The weekend I went into labour, she began deteriorating at speed. I found out later that my sister (herself seven months pregnant) had driven to her house to scoop her up off the bathroom floor and take her to hospital. I also found out later that on the day I was to be discharged from the maternity ward, she was moved to intensive care. I had been too spooked to ring the hospital, but when I finally did, from the labour ward, the nurse answered her phone. There had been extensive internal bleeding, she said plainly, as if giving me directions. I handed the phone to Oscar and felt myself lurch forward. The baby shifted in its plastic box, turning towards my voice.

Back home, in bed with him, that first day was unique in the way it always is: agony to ecstasy, compounded by a fast, private transformation. It was hot. Outside my window the elms had turned brown, and over the next two days I watched their bark come off in strips like banana peel while the baby foraged among the sheets for my nipples. I found the connection I shared with him so astonishing, I didn’t think it could possibly last. Four days after the birth, my sister rang and told me to catch the next train. I was at that post-op stage where you approach peeing and stairs with similar trepidation, and took her call on the loo.

Morwenna Ferrier standing in a living room holding her son, who is now three
Morwenna Ferrier with her son, who is now three

I knew my mother was dying, but I didn’t expect her to time it quite so spectacularly. The pram was still in its cellophane, so we took our as yet unnamed child to Bristol on the train, Oscar carrying him in a car seat while a steward pushed me in a wheelchair.

We arrived at Bristol Royal Infirmary just after 8pm. It was still light, the hospital was cool and empty. They let us on to the ward where a nurse pulled back my mother’s curtain like a compere.

Lying there, she looked small. The bleeding had stopped, but she had developed sepsis from a procedure to stem the flow of bilirubin and now virtually every organ was failing. Against all odds, she didn’t die that night, and for the next couple of days my sister and I took turns at her bedside, watching the monitor tracing a city skyline behind her. The baby, now one week old, stayed in the waiting room with his father. Every hour or so, Oscar would text that he was crying. I would sanitise my hands and my sister would quickly wheel me out. There, in between free coffee and grieving strangers, I learned to feed him. Sometimes, we changed him there too, fanning out 20-year-old magazines about ocean fishing across tables to make a mat.

I don’t know if the baby was hungry each time he cried, but I went anyway because it bought me time with my son and, quite neatly, time away from my mother. When she woke up, things became more complicated. She was afraid. She wanted us for longer stretches. We did what we could, moisturising her hands where the picc lines were inserted, washing her fringe and dabbing at her mouth with a wet swab while she pouted, looking – my sister, Oscar and I all independently noted – not unlike a baby.

In the waiting room, I usually got one breast emptied but rarely two before going back in, and often found myself in fist-biting horror detaching the baby’s mouth from a nipple using my finger so I could get back to her bedside. Sometimes he cried. Eventually he stopped. At least I think he did. The double doors of the ICU drowned out his cry.

Five more weeks passed. Twice she begged the doctors to let her die, and three times we were taken to a quiet room to listen to a consultant run through varying doomy diagnoses like a pinball machine. There are truths and then there is hearing them.

I wanted to be with my mother. But I wanted to be with my baby far more. Before long, I had begun willing her death on, like I was at the races. One morning, while walking my son around the garden, I rang my therapist to confess. “But of course,” she said. “You can only be mother to one baby at a time.”

My mother grew up in London but left when she was in her early 20s. She wanted fresh air and children, and moved steadily through the countryside west of London’s Olympia, where she was born, from Oxford to Wiltshire and finally to Somerset, where I grew up. My father left early. A single, working mother with dark hair and dark skin – her grandmother was Assamese – she sometimes confounded people. When she met my stepfather and his friends, she remembered someone calling her the “Indian princess”.

She was an art teacher, though really she wanted to be a mother who got to make art. Whenever friends came to stay, she’d sketch them while they watched television. The early departure of my father put paid to that. She returned to teaching. I was two and my sister was three. When my stepfather, Philip, a livestock haulage contractor, died in 2001, she left teaching to take over his business, learning to drive an articulated lorry to abattoirs and raising his sheep. I remember her getting furious when I told her she was a feminist. She only worked because she had to, she told me. She was an excellent teacher and devoted mother, but often pulled in different directions by both.

Over the first few months of what we imagined might be her recovery, life carried on: we managed to see Oscar’s grandmother and uncle before they died. We had moved into her house, but we were also able to return to our home in London for routine check-ups from healthcare workers and to name the baby. The health visitor’s questions were less about him and more about how I was coping. I simply was because I was.

The trips were peaceful, like calendula on a burn. In our creaking flat, friends came over with bread and tomatoes, and things for the freezer. One cooked us pasta, which we ate using a pouffe as a table. Another brought us her mother’s frozen chicken soup, but by the time it had defrosted we had to rush back to Bristol.

One morning, back in the waiting room, we were approached by a well-meaning doctor who suggested we stop bringing the baby into the hospital, to lower the risk of spreading infections. It’s strange to imagine a world in which MRSA was the overriding concern, but from then on, I would express milk in the back of our hire car as we drove into hospital, and Oscar would feed him in parks and cafes around the city.

In late July 2019, my mother was transferred to a local hospital in Chippenham for a further seven weeks. Prolonged hospitalisation is bad: bone density plummets. Oscar, the baby and I would stay for the duration and, come September, swap over with my sister, who was due around that time. Once again, I would hand over the baby and as much breast milk as I could produce in the 25-minute car journey, and sit bedside for four or five hours.

The days dragged. I wheeled my mother from the ward to the common room to the canteen. Rooms were filled with puzzles, crucifixes, rudimentary physio equipment and incredibly kind nurses. They played Vera Lynn during teatime and a woman hollered for God every hour. My mother, not yet grey, was too young to be here, too sane. Finally, the weather picked up, so I got her into the garden where she sat in her wheelchair, picking at biscuits. No one wanted to be here, but I wanted to be with my baby. I wanted to be a new mother, bored out of my mind, drinking coffees in parks, empty hours to fill. When I sensed my mother could tell, I would go and sit on the loo and scream into my sleeve. When I suggested bringing him in – he was eight weeks old now, but she had not yet met him – she didn’t look at me. “Let’s see,” she said.

Mothers die, children are born. These sources of pain and joy are universal. Yet had I known the year would be like this, would I have had him? Probably not. Two years after she died, having my son is the best thing I’ve ever done, and while I’ve heard that the experience of having a second baby can be a corrective to the first, I doubt that’s true, or even possible.

One day, a little after visiting hours were over, I was in the bathroom on the ward, lowering my mother on to the commode. She always strung out my departure with errands (changing her water, refolding her pyjamas) but this was a new favourite. The bathroom window was open and we both heard a car pull up. The engine stopped, and I heard my son crying tinnily through the car window. My mother looked at me and whispered: “Don’t. Leave. Me.” His crying got louder. Then my phone started ringing. It was Oscar. As I stood up, my mother grabbed my hand with more force than she had in months, her eyes also welling up. I could feel my breasts tighten as the milk began to drop. The screaming picked up, and I looked down and watched two palm-sized patches of milk migrate across my T-shirt. Only then did she let go of my hand.

I didn’t realise just how angry I felt, just how jagged my pre-grief had become, until my mother’s burglar alarm went off one warm morning. There was no burglar, and the baby was asleep. Then, of course, he woke up. We punched in codes, but the alarm wouldn’t stop. In fact it seemed to grow louder. We called anyone who might know what to do, but they didn’t know. I turned the house upside down until, inexplicably, I landed on a baseball bat in the umbrella stand. I grabbed it and started swinging wildly at the alarm, beating it and large sections of the wall around it into rubble. The noise persisted, though, because burglar alarms don’t stop if you hit them with a bat. Eventually my screaming brought the neighbours round; I opened the door wearing a bra and boxer shorts. Eventually, we discovered the number for the alarm company on the side of the machine itself and that, after all these years, it worked. I later learned that mice had chewed through the wires, and I had missed the water pipes by two centimetres.

My therapist told me that grief tends to start at the diagnosis, but I’ve now learned that anger, like childbirth, keeps stranger hours. I was angry because I had wanted my mother, angry that this was happening now, but above all angry that the roles had been not just blurred, but reversed. Finally my mother agreed to meet her grandson, in the hospital garden. I’d never seen her hold a baby and I was struck by the ease with which she did it. He was nine weeks old. She held him four times in total. A few weeks later, she was discharged.

At the start, death was not simply on the cards, or on the table. It was all the cards, the whole table. Without a procedure called a Whipple, one of the longest and largest operations you can have since it removes your pancreas and part of your stomach, the already low survival rate of one to five years was virtually zero. They had more elegant ways of relaying this, but death was a fairly precise outcome; it was just a case of when.

Despite this, the operation always felt non-negotiable, and a week before Christmas, my sister and I drove her back into hospital. The roads were icy and empty at 5.30am. All being well, we would get a call at lunchtime, they said. We had coffee and toast and drove back home to wait. She would stay in hospital until January.

That season was uniquely hard, though there are worse places to be than a hospital, with its artificial trees and blitz spirit. But when I remember, that New Year’s Eve, fainting in the bathroom after a viscous liquid the colour of cut grass shot out of a tube connected to her stomach and spilled out on the floor, I’m still thick with shame.

Against the odds, my mother didn’t die this time, either. But once again she couldn’t eat solids, or move independently, so it was perhaps inevitable that once out of hospital, this would change her. Back home, gradually then suddenly, she became clinically depressed.

As my sister and I drew up another routine of care, my mother’s day took on a new routine: watching The Vicar of Dibley, shuffling around the house listening to Mark Knopfler’s theme from Local Hero on a loop for hours on end, and vomiting up her pureed meals. The song came out the year I was born and I tried to picture her heavily pregnant, drumming her fingers across her small Panasonic radio to ease the contractions, instead of a 69-year-old recalcitrant woman in cotton pyjamas.

Morwenna Ferrier sitting on a chair and looking off to the side

We spent the early spring of 2020 trying to imagine her future while I nursed my son. She fantasised about Dignitas, though by this point, with coronavirus emerging, it was becoming clear that no one would be flying anywhere. We had no choice but to keep her alive, so instead, in between work shifts, Oscar and I drove to large green spaces – a monastery garden, an arboretum – and taught my mother how to walk. Circling an orchard, she cried as I timed her laps while the baby napped on a bench.

In desperation, we forced her to see an end-of-life therapist 20 years her senior, and woefully bad at his job. The last time we saw him, he’d let her out five minutes early, in the rain. Concerned she’d die either bankrupt or of boredom, we got home and wrote an email saying as much, and cancelled future sessions. Like that, the onus moved swiftly back to us. I pureed mangoes for my son and more for my mother, and they ate together at either end of the sofa, propped up on their pillows.

At the time, we had no idea what was happening, why she seemed to be getting sicker. The days had a rhythm, but at night things felt darker. I got drunk on my own – Oscar now back in London, not with flu, as we thought at the time, but Covid – scrolling through online support groups and firing off emails to the high-dependency unit nurses asking, then begging, for help. My son was seven months old, and awake every 45 minutes, so I began most days in a brittle state, though who’s to say whether it was tiredness or the hangover.

Weeks passed. No one replied to my emails. As the anxiety around Covid swelled, the gravity of what was happening felt strange and small to us. By late March, we handed over to my sister as part of our usual rotation, but I still called her every day. Then one day, in early June, my mother phoned me. The hospital had rung her with some test results.

In early March, most of her hepatology department had been signed off sick, so no one had received my emails from February. It turned out the surgeon had missed the tumour, and the operation had been unsuccessful. These things happen, of course, but for some reason, they had sent this news to Birmingham (where she had never been), yet neither hospital had contacted us until now. That day, I received three further calls in quick succession, mooting another operation, then chemo, then neither because she was inoperable. She would soon, it turned out, be dead. “I told you I was still ill,” she laughed down the phone. The next day, we celebrated my son’s first birthday with a square cake iced green and covered in small plastic horses. Then we drove back west, illegally, one last time.

It was odd to see the cafes and parks of Bristol, where we had spent so many months, empty. Inside the hospital, a cataclysmic reshuffling was well under way. Spaced seating and plexiglass, all staff and no patients. Like every consultant we’d met, this one danced around the diagnosis, but we pressed him on the details. We had already decided my mother would die at home (we had got this far without any care), but we wanted a picture of those final weeks: in what order would her organs give up, what would she sound like, how would we know. A year ago, when the doctors refused to let her die, the tension split the room. This time, she was getting what she wanted.

During the last few months of her life, there were two things that made my mother happy. One was spreadsheets. She drew up lists of furniture and shuffled behind us with a measuring tape as we walked around the house bickering about mirrors. The other was talking about taking her own life. The illness had transformed her, and I knew there was no point pretending otherwise. She wanted to take control, hurry things along, and became terrified that this would go on for ever. She ran through methods, and I explained the mess and how hard it would be to sell a house with blood on its walls. I listened, hoping this was not the same as advocating. Suicide, it turns out, is very, very hard to pull off successfully. (After she died, we found goodbye notes hidden around the house, which I still have in a drawer.)

Finally, finally, we got some help. Over the next month, palliative care and district nurses came and went. We never saw their faces behind the PPE, but would peek out of the window as they got changed in the car. Solids stopped, juice became water, sipping moved to straws. We used the baby monitor to listen to her breathing upstairs. We sat with her and talked about the heat, the dog, the garden. On more jaundiced days, we told her she looked like one of the Simpsons.

During those final weeks, we felt calm. Waiting for someone to die is bizarre, a little like Christmas (knowing it will come, not knowing how it will pan out). Still, nothing prepares you, even a year of knowing, so we distracted ourselves. Thankfully, WFH allowed our partners to be around, and my sister and I took our sons to the local weir to swim. It was July, lockdown had lifted a little, and the countryside opened up again. The west was blooming. Once, my mother’s room became invaded by wasps. They circled her bed, strangely beautiful, which gave an already dramatic tableau a strangely divine hue. Bound by this strange, anticipatory grief, things felt bittersweet.

Trying to eke out my compassionate leave, I was still working part-time. I remember putting my son down in the room next door and lying on my mother’s bed to write an article about shoes. As I typed with my left hand, I patted her hand with my right. She didn’t react. I stopped and checked her pulse, reflexively, but could see her breath rising weakly under the sheet. Lying down with my back to her, I pulled her body towards me so that we lay there, spooning, like she would do when I was sick. I told her the world was unrecognisable, how she’d hate it. I don’t know if she heard me. Somehow I finished the article and – I don’t exactly know why – took a photo of her. Sometimes, while scrolling through photos on my phone, I land on the shot and it shocks me like a nude.

The last conversation – something informed by what you think you should say – weighed on me. Technically there was time, but, given my mother was heavily sedated, I had to manage my expectations. Then, in early August, about two weeks before the end, I was in her room, when I saw her eyes open. I sat on the bed and asked her why she was leaving me now, when I needed her. “I’m so proud of you, Wenna. You’ll be fine,” she told me. I wanted to thank her, to reciprocate, to say I’m sorry for being so angry with you, but I didn’t. I was sorry, but I was also angry. The woman lying in the bed wasn’t her, just as the sick woman in various wards wasn’t either. We never spoke again. Two weeks later, as my sister and I were folding towels in her room, we heard her breathe in sharply, and grimace. We told her that it was time to go, and that we were OK. Our babies napped in the room next door. Then we watched her die.

After the funeral, held at a crematorium in Bath and attended by 12 masked guests, I returned to London. On the way home, I read about – bear with me – the animist conception of the world, the power and energy that exists in nature and even in human objects, the idea that we project one another on to these things. How objects, however practical, can become shorthand for love, and how easy they are to lose. I forgot about it until one day, while jogging around the park in my mother’s old puffer, I found one of her tortoiseshell hair clips with a few strands of hair in it. Terrified I’d drop it, I ran straight home, put it in a drawer. I suspect I kept the stilton for similar reasons. How is it possible to feel homesick for a person?

I remember one night at my mother’s house when the baby, then seven months old, would not stop crying. Outside in the corridor, I heard a noise, and there was my mother, having pulled herself up the stairs on all fours, now slowly limping across the carpet. It was just midnight. She came into the room and sat on the floor and, for a full 45 minutes, rocked his cot until he fell asleep. Without a word, she limped back down the corridor and back to her room. It only happened once, but it was a glimpse into how things could have been.

Complete Article HERE!

In New Doc ‘Last Flight Home’, a Film-Maker’s Dad Gets His Final Call

— Ondi Timoner’s sweet, sad film about her father shows what a good death can look like


You have to be in a certain mood to watch Ondi Timoner’s new documentary, Last Flight Home, which plots out the final 15 days of her 92-year-old father’s life. Hmm, do you want to zone out to a Parks and Rec marathon tonight, or watch a family come to terms with their patriarch’s decision to instigate an assisted death and end his overwhelming physical exhaustion and pain? It might be a hard sell, but for those who can bear to think a little deeper about the nature of existence – and the end of existence – the rewards are rich.

As the film opens, we join the Timoners in the aftermath of what we can only imagine to have been a long and difficult conversation: whether or not to support Eli – who was paralysed in 1982 and is now suffering from congenital heart disease and having difficulty breathing – in his decision to take advantage of the California End of Life Option Act. (There’s no debate about how Eli feels, as he somewhat starkly puts it: “I just want to be in the ground.”)

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By the time we meet them, Eli’s wife, Lisa, and their three grown-up children, Rachel, David and Ondi – who made her name as a film-maker with the very different but also surprisingly intimate documentary Dig!, about the divergent paths of two 1990s indie bands, the Dandy Warhols and the Brian Jonestown Massacre – have come round to his way of thinking, and are going to give their father the best send-off they can. All Eli has to do is tell the doctor his decision, and a 15-day countdown – which serves as chapter markers for the film – to his legally self-administered fatal dosage begins.

What happens next is quite extraordinary, and raises so much that is valid and instructive about how we live and how we die that it’s hard to know where to begin. In a series of Zoom calls and reunions at the bedside of the couple’s home in Pasadena, California, Eli says goodbye to the people who have meant something to him in his life. His colleagues, his friends, his care-givers, his extended family. He tells them he loves them, they tell him they love him right back. He fine-tunes his obituary, and makes quips about his bunk-bed style burial plot, in which he’ll await his wife’s arrival: “That’s heaven. I love Lisa on top.” What a thing, to look death in the eye and still make terrible dad jokes. Eli must be some guy.

And it turns out he is, or was. Now we get Eli’s back story, the part that Ondi is so keen to relay (something that Robert Downey Jr is also doing for his dad in his forthcoming Netflix documentary, Sr). Having set up an airline, Air Florida, in 1972, Eli became a hugely successful businessman and personality (that picture of a young King Charles looking bashful in a polo shirt? Zoom out and it’s Eli and Lisa flanking him on either side) only to overstretch himself and lose it all. We also find out more about the circumstances of his paralysis (it happened, somewhat shockingly, because of a massage), which caused a huge shift in the dynamics of the family as Lisa and the children rallied around to support him as he had once them.

film maker ondi timoner with her father eli in the days before his death
Film-maker Ondi Timoner with her father, Eli, in the days before his death

What makes the film so bittersweet, is that while Eli’s family is saying goodbye, we as viewers are just getting to know him: getting familiar with the nuances of his relationships with his children, who are inspirationally – and to frigid English sensibilities, a little freakishly – demonstrative of their affection for him; getting a sense of his steady morals and kind heart (OK it’s not the most objective biography, but you’re prepared to let it slide); getting the odd exasperated aside from Lisa, a Bronx native, who raises her eyebrows to the camera as Eli, with just days to live, listens to a droning automated voice read out a list of his bank transactions.

And although the film makes no attempt to discuss the rights or wrongs of assisted suicide – it’s just not what’s being explored here, and that’s fine – you can’t help thinking, as the days tick closer, that Eli’s done something right. He’s got to see his children honouring him in the ways they are best able – David’s written his obituary; Rachel, a rabbi, is preparing his funeral; and Ondi is making this film – and, courtesy of some poison in a plastic glass with a drinking straw, he’s going to be able to show himself to the door. It’s hard, it’s sad, but you can’t help feeling that there are lessons to be taken from the Timoner family’s experience, and that, ultimately, a good death was had by all.

Complete Article HERE!

Queering the Good Death

When it comes to protecting chosen family, LGBTQ couples face unique struggles.

By Sara Harrison

Before he met Charles Koehler—and before he married a woman, got divorced, and came out—Dennis Hostetler was a college student who needed money. In the summer of 1962 he began working in the W.R. Grace mine, cleaning the tools used to drag vermiculite ore out of the ground. The shiny, flaky mineral would be refined at the plant, and when heated, it would balloon into puffs that could insulate buildings. Libby, a town in northwest Montana, was a beautiful place, but Hostetler had bigger ambitions, so he took the $1,443.72 he’d made and got the hell out.

But pieces of Libby stayed with Hostetler, buried deep in the outer lining of his lungs. He unwittingly carried toxic mineral fibers from the mine to college in Missoula, to the Peace Corps in Tunisia, to Paris’ Left Bank, and to St. Louis, where one day, at age 67, he discovered he was dying. After experiencing fatigue, chest pain, and shortness of breath, Hostetler was diagnosed with mesothelioma, a deadly cancer probably caused by inhaling asbestos that tainted the vermiculite he mined. In 2009, a year after Hostetler’s diagnosis, the Environmental Protection Agency declared a public health emergency in Libby and initiated a massive cleanup effort that’s still ongoing. Hostetler had no illusions about what came next—he needed to put his affairs in order.

Death is an inevitable fact of life that most people prefer not to discuss. According to a 2012 survey by the California Health Care Foundation, 60% of Californians said that when they die, it’s very important to them not to burden their families with tough decisions. Despite that, more than half of the respondents hadn’t communicated their end-of-life plans with the people they wanted making decisions for them. Some were too busy with other things to think about it; others said thinking about dying made them uncomfortable. But having those conversations can make the experience better for the person dying. There’s less regret about what might have gone unsaid, and less anxiety and confusion for caregivers because they know their loved one’s wishes. Numerous studies have linked conversations about death to better, more peaceful deaths. 

For members of the LGBTQ community, dying without the legal protections of a living will or power of attorney could mean spending their final days without the support of the people who love them. A 2010 study by the National Gay and Lesbian Task Force Policy Institute found that LGBTQ elders are twice as likely to live alone and four times less likely to have children than their straight counterparts. That means their caregivers are often friends, exes, or chosen family who aren’t always recognized by the medical and legal systems. “There’s no automatic protection in place to make sure that someone can choose the person that’s going to be making their [end-of-life] decisions,” says Kimberly Acquaviva, a professor of nursing at the University of Virginia who specializes in palliative and end-of-life care. “You have to put those things in writing.” Before same-sex marriage was legal, there were horror stories about families swooping in and making medical decisions that didn’t accord with people’s wishes. “Those things still happen,” she says.

Charles Koehler, wearing a blue polo shirt, holds a black-and-white photo of his late husband, Dennis Hostetler, at age 68. He is standing outdoors, with trees and foliage visible in the background.
Charles Koehler holding a photo of Dennis Hostetler at age 68.

A Better Way to Die

Hostetler met his partner, Charles Koehler, in 1984. While the two could never have prepared for how their relationship unfolded over the next two decades, they always had a plan for death. Before Koehler met Hostetler, he’d read the 1969 bestselling book Everything You Always Wanted to Know About Sex* (*But Were Afraid to Ask) and decided it would be better if he wasn’t gay. The book told him gay people led awful lives, an idea affirmed in an abnormal psychology class where he learned that homosexuality was in the Diagnostic and Statistical Manual of Mental Disorders. 

If homosexuality was classified as a mental illness, then Koehler reasoned that it too must be a diagnosable disorder. But then Koehler actually met some gay men and realized their lives were just as varied as anyone else’s. Even then, it took years for Koehler to accept himself; when he did come out at age 27, he thought his life would remain solitary. “I had no idea what was possible,” he says. “I assumed that I would be basically closeted.” Both Koehler and Hostetler were hesitant when they met. Hostetler, who was older by a decade, had two daughters he still wasn’t out to. When Koehler moved in, Hostetler told the girls he was just renting a room. But in time they came out to Hostetler’s daughters and ex-wife. 

When two of their lesbian friends asked them if they’d consider donating sperm so they could have children, both men obliged. At first the men agreed to just be “uncles” to the children, but eventually the moms wanted the boys to know who their fathers were. “We had to do DNA testing to find out who was whose,” says Koehler. “The boys were really excited for about five minutes and then they wanted to go outside and play games.” Koehler began volunteering in a program that provided support buddies to men living with HIV and AIDS. He watched a man die and then watched the man’s partner get thrown out of the home they shared. Though the house was owned by the man who died, there was no will to ensure his partner could keep it. “The family came in, took everything, kicked the kid out on the street,” Koehler says. 

Afterward, Koehler and Hostetler—who were both healthy at the time—drew up documents specifying what should happen to their assets in case of death. Now, there are academics and organizations helping LGBTQ people make clear, concrete plans for death. In doing so, they’re modeling a better way to prepare for, think about, and embrace death. Sherrill Wayland, who directs operations at the National Resource Center on LGBTQ+ Aging, saw many of their older friends struggle to get the care and support they needed at the end of their lives. “It was really personal for me,” they say. “No one should die alone if they want support.” In their role, Wayland has helped create a series of guides to help LGBTQ people plan for serious illness and caregiving. 

Sage USA, an advocacy organization for LGBTQ elders, is also pushing for cultural competency training in long-term care facilities. Compassion & Choices, a group that champions the importance of end-of-life planning, has LGBTQ-focused programs like Pride in a Box, which encourages people to take time during Pride Month to talk about how they want to die. These conversations can seem at once ghoulish and mundane: Do you want to be cremated or buried? Do you desire an open- or closed-casket funeral? What clothes would you like to be buried in? What pronouns should appear in your obituary? “LGBTQ people have realized that if we don’t make a plan, things are probably going to go sideways because other people won’t be looking out for us,” says Acquaviva, who helped develop an LGBTQ-inclusive curriculum for The Conversation Project, an organization that helps people discuss their end-of-life plans. “We have to figure out ways to look out for ourselves.”

Charles Koehler, in a blue polo shirt, stands next to his son Spencer, age 28, wearing a red T-shirt. Both men are smiling, and standing outdoors with trees and foliage visible in the background.
Charles with son Spencer, age 28.

Because Hostetler had an amalgamation of chosen and genetic family members, he wanted to make sure everyone was on the same page. He organized his will and called his daughters, his ex-wife, the sons, and their mothers. Hostetler was adamant that he wanted to die at home, so he arranged for hospice care. Instead of hiding his identity, Hostetler informed his health care providers that he was gay and that Koehler was his life partner and caregiver. Koehler says that without exception, every single person was supportive and respectful of their relationship.

In the final two weeks of Hostetler’s life, a hospice nurse suggested setting up his bed in the living room so he wouldn’t be alone. His eldest daughter and her family moved in and traded shifts with Koehler and a hospice nurse. His nurses provided massage and music therapy to make him more comfortable. Hostetler was sedated, hovering at the edge of their everyday routines. Finally, on New Year’s Eve 2010, his daughters and his life partner surrounded his bed and held hands as he took his last breaths. Koehler checked his pulse and said, “I think he’s gone.” Koehler describes the whole experience as peaceful. Having months to accept that Hostetler would die helped make the process less traumatizing for everyone.

Three framed photographs sit on a wooden shelf. The photos show, from left: Charles, age 45 (left) with Dennis, age 55 (right) holding their sons Connor, age 2 (left) and Spencer, age 4 (right) on Christmas 1997, in front of a decorated Christmas tree. Center: Charles, age 45, with Dennis, age 55; both wearing patterned sweaters and smiling broadly. Right: Jocelyn, Dennis’ daughter from a previous 12-year marriage, smiles while holding her two children; one an infant, and one a toddler with their arms around their sibling.
Left: Charles (left), age 45, with Dennis (right), age 55, holding their sons Connor (left), age 2, and Spencer (right), age 4, on Christmas 1997. Center: Charles, age 45, with Dennis, age 55. Right: Jocelyn, Dennis’ daughter from a previous 12-year marriage, with her children.

“In a strange way it was both sad and yet somehow comforting at the same time knowing that he died being surrounded by us at his home, just as he wished,” Koehler says. But not all LGBTQ patients receive such affirming care: A 2020 survey published in the Journal of Palliative Medicine found that nearly one-quarter of health care providers witnessed discrimination against LGBTQ patients in palliative care settings and nearly 30% of the respondents reported witnessing discrimination against LGBTQ spouses, partners, or people whom the patient had legally designated to make care decisions for them.

Preparing for the Inevitable End

Experts like Acquaviva and Wayland say that health providers need to take time to understand the barriers that create health inequities in the LGBTQ community and undergo cultural competency training to avoid making the same mistakes. Because LGBTQ families are more likely to be families of choice, providers need to be sensitive to those dynamics and spend time learning who is part of a patient’s support system instead of automatically deferring to genetic family members. There are also simple ways to acknowledge the range of human gender and sexual identities, such as including nongendered pronouns on forms, asking for patients’ pronouns and using them correctly, and including LGBTQ-affirming language in nondiscrimination clauses.

Those steps may seem like small gestures, but they’re important signals. If an organization doesn’t commit to doing something as minimal as adding inclusive language to a statement, says Acquaviva, then it’s reasonable to expect that they won’t treat a patient with the dignity they deserve. Acquaviva has both written about and experienced this discrimination: She and her wife talked extensively about their plans when her wife was diagnosed with ovarian cancer in 2019 and ultimately decided to use hospice care to help her die comfortably. But then they discovered that none of the hospice services near their Virginia home included LGBTQ-affirming language in their nondiscrimination statements. Despite the fact that both women were experts in end-of-life care, they faced death without the support of hospice because they felt they wouldn’t receive respectful care. Acquaviva was the one managing her wife’s pain meds, bathing her, and making sure she didn’t get bed sores.

Charles shares drinks with members of his local PrimeTimers social group, of which he was founding president, on the back patio of Just John Night Club in St. Louis, Missouri. He wears a red, white, and blue-checked shirt, glasses, and holds up a pint of beer to toast with a friend who is off-camera.
Charles shares drinks with members of his local PrimeTimers social group, of which he was founding president, on the back patio of Just John Night Club in St. Louis, Missouri.

There’s no single definition of a good death. Not everyone knows when their death is coming and not every death can follow a specific plan, but every death can be expected and discussed ahead of time. “We all want to imagine we’re gonna live a really long time, and it’s human nature to imagine that everything’s gonna be OK, but the reality is 100% of us are going to die,” Acquaviva says. Have the conversation—even if it’s awkward, uncomfortable, and hard. 

Now, more than a decade later, Koehler remains an active retiree. He’s single but he isn’t alone. He’s the vice president of PrimeTimers Worldwide, a large social group for older gay, bisexual, and transgender men. On Sundays he catches up with Hostetler’s daughters and their mom over Zoom, and when the younger daughter needed surgery, he helped with child care. “Having grandkids is something that I never dreamed of as even a remote possibility,” he says. “It never even crossed my mind at all.” His documents are in order and he encourages his peers to make end-of-life plans. But while he’s still here, he’s keeping busy, tending to the life and family he and Hostetler built together.

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