Celebrating a life well-lived — one year later

“The goal is not a good death. The goal is a good life — all the way to the very end.”

— Atul Gawande, M.D., surgeon, writer and public health leader

By rclark

One year ago on this date, July 11, 2019, my wife, Norma, was freed from the prison of Alzheimer’s disease. So exactly one year later it is appropriate to celebrate Norma Houghton’s life and share with my readers personal reflections on my recovery.

You who have been with me all the way from diagnosis in 2010 to last summers’ final breath know the documented story of a lady who gave an extraordinary gift to sacrifice her privacy to help others. The sadness in over 10 years of seeing her drift away was softened by the concern of many readers, as well as numerous caregivers.

My restoration and renewal following our 57 years of marriage has been facilitated in part by periodic messages this past year from her hospice caregivers from Compassus. A healing journey of recurring memories was predicted by their periodic communication.

Norma’s good works have been recognized with the Norma A. Houghton Staff Award in the Birthing Center of Monadnock Community Hospital and an annual scholarship for a graduating student from one of our three local high schools choosing higher education in nursing.

As past co-chair of the Western New Hampshire Walk to End Alzheimer’s, I have been given the satisfying task of using my wife’s story as a monthly “mission moment” to cheer on the current walk committee through the challenges of planning a major event during the pandemic.

So her legacy lives on and, though grief has come to my life, spiritual growth and a new life have also emerged as predicted and aided by Compassus. I can now see that hospice is not about dying but helping caregivers and patients live life to the fullest.

When our time on Earth comes near a close, the choice of hospice provides a better quality of life than if aggressive end-of-life medical care were applied. Dr. Gawande’s classic treatise, “Being Mortal,” about “medicine and what matters in the end,” is on point.

You may remember an early column about full body donation for medical education. I expect next week to travel to Boston University Medical School to bring Norma’s ashes back to Jaffrey. Plans are being laid at the United Church to develop a memorial garden as a final resting place for beloved members of the church.

If you want to find out more about hospice services, visit the hospice and palliative care organization (www.nhpco.org). It is not true that hospice is only for the final days or hours of life. Hospice is about helping patients and their families have the best possible quality of life as they can when life expectancy is limited.

Usually a patient’s doctor and the hospice medical director work together to offer experience with hospice criteria, guidelines and clinical judgements. Hospice Medicare coverage includes nurses, other caregivers, medicines, supplies and equipment, with little or no cost to patients, families or caregivers.

Clearly for me hospice care provided even more than medical, emotional, social and spiritual support. I find myself surrounded with family and friends who share my loving memories of Norma and continue to offer peace and support as I come to this special date.

Compassus gave me positive relief and strength during a time of extended grief, allowing me to create appropriate remembrances and lasting reminders of a life well lived. Since they suggested a celebration on the anniversary of my loved one’s death, isn’t it a joy that my July column is published as a tribute on this very date!

“Enjoy life. Have fun. Be kind. Have worth. Have friends. Be honest.

“Laugh. Die with dignity. Make the most of it. It’s all we’ve got!”

— Ricky Gervais

Complete Article HERE!

With Dementia, More is Needed than a Boilerplate Advance Directive

By Katy Butler

My parents lived good lives and thought they’d prepared for good deaths. They exercised daily, ate plenty of fruits and vegetables, and kept, in their well-organized files, boilerplate advance directives they’d signed at the urging of their elder lawyer. But after my father had a devastating stroke and descended into dementia, the documents offered my mother (his medical decision-maker) little guidance. Even though dementia is the nation’s most feared disease after cancer, the directive didn’t mention it. And even though millions of Americans have tiny internal life-sustaining devices like pacemakers, my mother was at sea when doctors asked her to authorize one for my father.

Our family had seen advance directives in black and white terms, as a means of avoiding a single bad decision that could lead to death in intensive care, “plugged into machines.” But given that most people nowadays decline slowly, a good end of life is rarely the result of one momentous choice. It’s more often the end point of a series of micro-decisions, navigated like the branching forks of a forest trail.

In our family, one of those micro-decisions was allowing the insertion of the pacemaker, which I believe unnecessarily extended the most tragic period of my father’s life, as he descended into dementia, near-blindness, and misery. In the process of researching my new book, The Art of Dying Well, I’ve met many other people who’ve agonized over similar micro-decisions, such as whether or not to allow treatment with antibiotics, or a feeding tube, or a trip to the emergency room, for a relative with dementia.

If there was one silver lining in my father’s difficult, medically-prolonged decline, it is this: It showed me the havoc dementia can wreak not only on the life of the afflicted person, but on family caregivers. And it encouraged me to think more explicitly about my values and the peculiar moral and medical challenges posed by dementia. At the moment, I’m a fully functioning moral human being, capable of empathy, eager to protect those I love from unnecessary burdens and misery. If I develop dementia —which is, after all, a terminal illness —I may lose that awareness and care only about myself.

With that in mind, I believe that “comfort care” is what I want if I develop dementia. I have written the following letter —couched in plain, common-sense language, rather than medicalese or legalese — as an amendment to my advance directive. I’ve sent it to everyone who may act as my guardian, caregiver or medical advocate when I can no longer make my own decisions. I want to free them from the burden of future guilt, and that is more important to me than whether or not my letter is legally binding on health care professionals. I looked at writing it as a sacred and moral act, not as a piece of medical or legal self-defense. I’ve included it in my new book, The Art of Dying Well: A Practical Guide to a Good End of Life. I invite you to adapt it to your wishes and hope it brings you the inspiration and peace it has brought to me.

Dear Medical Advocate;

If you’re reading this because I can’t make my own medical decisions due to dementia, please understand I don’t wish to prolong my living or dying, even if I seem relatively happy and content. As a human being who currently has the moral, legal, and intellectual capacity to make my own decisions, I want you to know that I care about the emotional, financial, and practical burdens that dementia and similar illnesses place on those who love me. Once I am demented, I may become oblivious to such concerns. So please let my wishes as stated below guide you. They are designed to give me “comfort care,” let nature take its course, and allow me a natural death.

  • I wish to remove all barriers to a peaceful and timely death.
  • Please ask my medical team to provide Comfort Care Only.
  • Try to qualify me for hospice.
  • I do not wish any attempt at resuscitation. Ask my doctor to sign a Do Not Resuscitate Order and order me a Do Not Resuscitate bracelet from Medic Alert Foundation.
  • Ask my medical team to allow natural death. Do not authorize any medical procedure that might prolong or delay my death.
  • Do not transport me to a hospital. I prefer to die in the place that has become my home.
  • Do not intubate me or give me intravenous fluids. I do not want treatments that may prolong or increase my suffering.
  • Do not treat my infections with antibiotics—give me painkillers instead.
  • Ask my doctor to deactivate all medical devices, such as defibrillators, that may delay death and cause pain.
  • Ask my doctor to deactivate any medical device that might delay death, even those, such as pacemakers, that may improve my comfort.
  • If I’m eating, let me eat what I want, and don’t put me on “thickened liquids,” even if this increases my risk of pneumonia.
  • Do not force or coax me to eat.
  • Do not authorize a feeding tube for me, even on a trial basis. If one is inserted, please ask for its immediate removal. 
  • Ask to stop, and do not give permission to start, dialysis. 
  • Do not agree to any tests whose results would be meaningless, given my desire to avoid treatments that might be burdensome, agitating, painful, or prolonging of my life or death.
  • Do not give me a flu or other vaccine that might delay my death, unless required to protect others.
  • Do keep me out of physical pain, with opioids if necessary.
  • Ask my doctor to fill out the medical orders known as POLST (Physician Orders for Life Sustaining Treatment) or MOLST (Medical Orders for Life Sustaining Treatment) to confirm the wishes I’ve expressed here.
  • If I must be institutionalized, please do your best to find a place with an art workshop and access to nature, if I can still enjoy them.

Complete Article HERE!

Diagnosed With Dementia, She Documented Her Wishes.

They Said No.

Susan Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. After suffering two brain hemorrhages, Saran signed an advance directive for dementia, a controversial new document that instructs caregivers to withhold hand-feeding and fluids at the end of life. She wears a chain bearing instructions that she not be resuscitated.

By JoNel Aleccia

When she worked on the trading floor of the Chicago Board Options Exchange, long before cellphone calculators, Susan Saran could perform complex math problems in her head. Years later, as one of its top regulators, she was in charge of investigating insider trading deals.

Today, she struggles to remember multiplication tables.

Seven years ago, at age 57, Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. She had started forgetting things, losing focus at the job she’d held for three decades. Then tests revealed the grim diagnosis.

“It was absolutely devastating,” said Saran, 64. “It changed everything. My job ended. I was put out on disability. I was told to establish myself in a community before I was unable to care for myself.”

So Saran uprooted herself. She sold her home in 2015 and found what looked like an ideal place: Kendal at Ithaca, a bucolic retirement community in rural New York whose website promised “comprehensive health care for life.”

And now, she’s fighting with that community over her right to determine how she’ll die ― even though she has made her wishes known in writing. Such a fight could ensnare millions of Americans with dementia in coming years.

In 2018, after two brain hemorrhages, Saran conferred with a lawyer and signed an advance directive for dementia, a controversial new document created by the group End of Life Choices New York that instructs caregivers to withhold hand-feeding and fluids at the end of life to avoid the worst ravages of the disease.

“It’s not something that I am willing to endure,” she said. “I don’t want my life prolonged beyond the point where I’m participating in life.”

But when Saran submitted the document to Kendal at Ithaca, the New York continuing care retirement community where she has spent more than $500,000 to secure her future, officials there said they could not honor her wishes.

In a letter, lawyers told Saran that the center is required by state and federal law to offer regular daily meals, with feeding assistance if necessary.

There’s no provision, the letter said, for “decisions to refuse food and water.”

It’s a cruel quandary for Saran and other Americans who have turned to a crop of dementia directives created in recent years. Even when people document their choices ― while they still have the ability to do so ― there’s no guarantee those instructions will be honored, said Dr. Stanley Terman, a California psychiatrist who advises patients on end-of-life decisions.

“It is, in my opinion, a false sense of security,” Terman said.

That may be especially true for the 2.2 million people who live in long-term care settings in the United States. People with dementia are most likely to die in nursing facilities, according to new research from Duke University and the Veterans Affairs Boston Healthcare System.

“If you’ve got the resources, where you’ve got family and paid caregivers at home, you’re all set,” said Dr. Karl Steinberg, a California geriatrician and hospice physician who has written extensively about dementia directives. If you’re living in a facility, he added, “it’s not going to happen.”

One key question is whether patients with dementia ― or those who fear the disease ― can say in advance that they want oral food and fluids stopped at a certain point, a move that would hasten death through dehydration.

It’s a controversial form of what’s known as VSED ― voluntarily stopping eating and drinking ― a practice among some terminally ill patients who want to end their lives. In those cases, people who still have mental capacity can refuse food and water, resulting in death within about two weeks.

Many states prohibit the withdrawal of assisted feeding, calling it basic “comfort care” that must be offered. Only one state, Nevada, explicitly recognizes an advance directive that calls for stopping eating and drinking. And that’s via a little-known law that took effect in October.

Critics of such documents, however, say they could lead to forced starvation of incapacitated people. The directives may be biased, reflecting a society prejudiced against age, disability and cognitive change, said Dr. James Wright, medical director of three long-term care facilities in Richmond, Va.

He’s the lead author of a recent white paper advising facilities not to honor dementia directives. Based on his years of clinical experience, Wright said many people with dementia become content with their situation, even when they never thought they would be.

“To enforce an advance directive on someone who may have had a complete turnaround on what they think of a life worth living is unethical and immoral,” Wright said.

The dementia directives published in the past few years are aimed at filling what experts say has been a major gap in advance-care planning: the gradual loss of capacity to make decisions about one’s care.

One version, published in 2018 by Dr. Barak Gaster, a professor of medicine at the University of Washington, has been downloaded 130,000 times after it was mentioned in a New York Times story and continues to be retrieved about 500 times per week.

“This is an issue that people have really thought a lot about,” Gaster said. “They worry about it a lot. They’re so eager and excited to have a structured opportunity to make their wishes known.”

Traditional advance directives focus on rare conditions, such as a persistent vegetative state or permanent coma, Gaster said. “And yet the No. 1 reason a person would lose ability is dementia,” he added.

In addition to Gaster’s document, directives drafted in New York and Washington state have drawn hundreds of users. The aid-in-dying advocacy group Compassion & Choices released a dementia directive this month.

As the U.S. population ages, more people ― and their families ― are grappling with dementia. By 2050, nearly 14 million Americans aged 65 and older may be diagnosed with Alzheimer’s disease.

“We are right now experiencing the very first upswing of the giant wave of dementia that’s heading our way,” Gaster said.

Saran is on the crest of that wave. Divorced, with no close family, she turned to Kendal ― with its 236 independent units and 84-bed health center ― as her final home. During her four years there, she has noticed some decline in her mental clarity.

“Even some of the simplest mathematical problems, like even seven times seven, I can’t think of it now,” Saran said.

Still, she is able to manage her affairs. She cooks her own food and cares for her three cats ― Squeaky, Sweetie and Pirate, a one-eyed tabby. A longtime Buddhist, she often drives to a nearby monastery to practice her faith.

In late summer, Saran invited visitors to her small cottage at Kendal, where tapestries hang on the walls and bookshelves are filled with tomes on religion, death and dying.

Frontotemporal dementia affects about 60,000 people in the U.S., and patients often die within seven to 13 years, but Saran’s disease appears to be progressing more slowly than expected.

“I think I have great capacity,” said Saran, who wears her silver hair long and favors jeans, linen shirts and turquoise jewelry.

She chain-smokes, lighting up the Seneca cigarettes she buys for $3 a pack from a nearby Indian reservation. She thought about quitting but decided it wasn’t worth the effort and continues to indulge her habit. “If you had my diagnosis, wouldn’t you?” she said.

When Saran was hospitalized after her strokes, she suddenly understood what losing her abilities might mean.

“I realized, oh, my God, I might get stuck in a situation where I can’t take any independent action,” she recalled. “I better make sure I have all my paperwork in order.”

She was stunned to learn it might not matter, even after her local lawyer, Chuck Guttman, drafted health care proxy documents and a power of attorney.

“I thought this was it,” she said. “I thought I’d move here and everything was taken care of, everything was settled. And now it’s not.”

Laurie Mante, Kendal’s executive director, declined to comment on Saran’s situation, even when Saran authorized her to do so.

“We recognize the great complexity in balancing our residents’ wishes with what is required of us,” Mante wrote in an email. “We have a dedicated team who works to balance those interests, and, when appropriate, work with our residents and their families to seek alternative paths.”

Saran said no one from Kendal has reached out to discuss an “alternative path.”

Not all dementia directives include instructions about assisted feeding. Gaster said he and his colleagues had “heated conversations” before deciding to leave that issue off their popular document.

Instead, he said, his option helps more people by addressing general goals of care for each stage of the disease. The most important thing, he said, is for people to consider their choices and share their desires with their loved ones.

The debate, Gaster said, boils down to whether assisted feeding is “basic support” or “a medical intervention that can be declined in advance.”

“There’s still a very wide perspective of viewpoints on that,” he said.

Backed by statute and practice, facilities say they are bound to offer food to all residents willing to eat, and to assist with hand-feeding and fluids if a person needs help.

The controversy centers on the definition of those terms.

Wright says late-stage dementia patients who show any interest in food ― a flick of the eyes, grunting or gestures, opening the mouth ― should be fed until they refuse it. Steinberg and others contend the default should be “don’t feed unless they ask for it.”

It’s always going to be “somewhat of a guess,” Wright acknowledged, about whether hand-feeding someone is help ― or force.

“I’ve not seen any guidelines that can faithfully give good, unbiased guidance,” he said. “I feel that I personally can determine when food means something to my patients and when it doesn’t.”

The new crop of dementia directives was inspired, in part, by high-profile cases of dementia patients who were spoon-fed against their apparent wishes. In Oregon and  British Columbia, courts ruled that food and water were basic care that could not be withdrawn.

But so far, there’s been no court case that says a clear advance directive for VSED “may or must be honored,” said Thaddeus Mason Pope, a professor at the Mitchell Hamline School of Law who studies end-of-life decisions.

Pope said he has heard of many people who move out ― or their families move them out ― of long-term care facilities to avoid assisted feeding in the last stages of dementia.

Saran has considered that, too.

“I should probably just leave,” she said, although that would mean losing the nonrefundable investment she’s already made. “I think about that every day.”

But then what? Hospice might be a solution, but only if there’s room when she needs it, she said.

Saran said her situation should be viewed as a cautionary tale. She wishes she’d asked more questions, insisted on answers about exactly how she would die once her dementia progressed.

“I didn’t realize I was signing away my right to self-determination,” she said. “I am appalled that my future demented self takes precedence over my competent current self.”

Complete Article HERE!

LGBTQ Elders Are More Likely to Be Socially Isolated, Suffer from Dementia Than Straight Peers

By

A new report by University of California San Francisco is making a big claim: LGBT people are at heightened risk of dementia. Additionally, LGBT elders are more likely to be socially isolated than their straight cisgender counterparts, and this social isolation can lead to more physical and mental health problems in comparison.

The new data was released at the 2019 Alzheimer’s Association International Conference (AAIC) in Los Angeles. Data was collected via mainly phone-based surveys across nine U.S. states. Approximately 44,000 adults aged 45 and older participated wherein roughly 3% of respondents identified themselves as a “sexual or gender minority.”

Another study presented at AAIC 2019 investigated the effectiveness of a first-of-its-kind Alzheimer’s intervention designed specifically to improve physical function and independence for LGBT older individuals with dementia and their caregivers.

The study, conducted by researchers at the University of Washington, showed the importance of tailored interventions and strong community partnerships in designing care for LGBT individuals.

“Much too little is known about Alzheimer’s disease and dementia in the LGBT community. In fact, the first data on the prevalence of dementia among sexual and gender minorities was reported only last year at AAIC 2018,” said Maria C. Carrillo, PhD, Alzheimer’s Association chief science officer.

A new report by University of California San Francisco is making a big claim: LGBT people are at heightened risk of dementia. Additionally, LGBT elders are more likely to be socially isolated than their straight cisgender counterparts, and this social isolation can lead to more physical and mental health problems in comparison.

The new data was released at the 2019 Alzheimer’s Association International Conference (AAIC) in Los Angeles. Data was collected via mainly phone-based surveys across nine U.S. states. Approximately 44,000 adults aged 45 and older participated wherein roughly 3% of respondents identified themselves as a “sexual or gender minority.”

Another study presented at AAIC 2019 investigated the effectiveness of a first-of-its-kind Alzheimer’s intervention designed specifically to improve physical function and independence for LGBT older individuals with dementia and their caregivers.

The study, conducted by researchers at the University of Washington, showed the importance of tailored interventions and strong community partnerships in designing care for LGBT individuals.

“Much too little is known about Alzheimer’s disease and dementia in the LGBT community. In fact, the first data on the prevalence of dementia among sexual and gender minorities was reported only last year at AAIC 2018,” said Maria C. Carrillo, PhD, Alzheimer’s Association chief science officer.

“As expanding research efforts continue to teach us more about the variability of Alzheimer’s and other dementias — for example by sex, race, genetics and exposure to environmental factors — the Alzheimer’s Association will fund, and encourage others to fund, more studies in LGBT and other diverse populations,” Carrillo added.

Increased Risk for Subjective Cognitive Decline Among Sexual and Gender Minorities
Few studies have investigated the symptoms and disease progression of Alzheimer’s and other dementias in the LGBT community.

To examine these associations, Jason Flatt, PhD, MPH, assistant professor at the Institute for Health & Aging at the University of California, San Francisco, and colleagues analyzed data from the 2015 Behavioral Risk Factor Surveillance System (BRFSS), a large phone-based survey led by the Centers for Disease Control and Prevention.

The study analyzed data from 44,403 adults aged 45 and older across nine states in the U.S. (Georgia, Hawaii, Illinois, Minnesota, Nevada, Ohio, Virginia, West Virginia, and Wisconsin) that participated in the 2015 BRFSS optional modules on the Healthy Brain Initiative, which included subjective cognitive decline and Sexual Orientation and Gender Identity.

Roughly three percent of participants (1,253) identified as a sexual or gender minority (SGM). Subjective cognitive decline was defined as self-reported confusion or memory problems that have been getting worse over the past year.

The researchers found that more than 14% of SGM participants reported subjective cognitive decline, significantly higher (p<0.0001) than the 10% rate among cisgender heterosexual participants. Even after adjusting for factors such as income, age and race, SGM participants were 29% more likely to report subjective cognitive decline.

More research is needed to understand why subjective cognitive decline may be higher in SGM individuals.

“Given that 1 in 7 adults who identified as a sexual or gender minority reported subjective cognitive decline, it is critical that more opportunities exist for people in these communities to receive regular evaluation for cognitive impairment and Alzheimer’s disease,” Flatt said. “There is also a need for greater education on Alzheimer’s risk, signs and symptoms, and training of health care providers to ensure inclusive and welcoming care for LGBTQ+ populations.”

“While we do not yet know for certain why sexual or gender minority individuals had higher subjective cognitive decline, we believe it may be due to higher rates of depression, inability to work, high stress, and a lack of regular access to healthcare,” Flatt added.

According to Flatt, less than half of SGM adults with SCD in the study talked to their health care provider about it. SGM adults with SCD were also more likely to report that they had to give up day-to-day activities (39% vs. 29%, p=0.003) and needed help with household tasks (44% vs. 35%, p=0.01) than cisgender heterosexual participants. Both groups were similar in terms of talking to their health care provider about their subjective cognitive decline.

First Study of an LGBT-Specific Alzheimer’s and Dementia Intervention
To advance research into Alzheimer’s in the LGBT community, Karen Fredriksen-Goldsen, PhD, professor and director of Healthy Generations Hartford Center of Excellence at the University of Washington, created the Aging with Pride: Innovations in Dementia Empowerment and Action (IDEA) study.

A multisite study in Seattle, San Francisco, and Los Angeles, Aging with Pride: IDEA is the first federally-funded study dementia intervention specifically designed for LGBT older adults with dementia and their caregivers.

The researchers had previously identified unique risk factors of LGBT older adults living with dementia through the first longitudinal study of this population (Aging with Pride: National Health, Aging, and Sexuality/Gender Study). Using longitudinal data with three time points (2014, 2015 and 2016), modifiable factors predicting physical functioning and quality of life (QOL) among LGBT older adults with dementia (n=646) were identified.

LGBT older adults living with dementia were significantly more likely to live alone (nearly 60%), not be partnered or married (65%), not have children (72%), and not have a caregiver (59%), when compared to older non-LGBT adults living with dementia. Previous experiences of discrimination and victimization (b=-0.19, p<.001) were negatively associated with QOL among LGBT older adults living with dementia. Socializing with friends or family (b=1.11, p<.05) was positively associated with QOL, and physical activity (b = 0.26, p<.001) were associated with better physical functioning.

As reported at AAIC 2019, Aging with Pride: IDEA includes a tailored approach in which trained coaches identify and modify challenging behaviors that are adversely affecting older adults living with dementia and their caregivers, either of whom are LGBT. The coaches delivered an individualized program of exercise, and behavioral and coping strategies designed to improve physical function, independence and QOL.

The exercise intervention is a low-impact physical exercise program including nine one-hour sessions over six weeks designed to improve physical functioning and maintain independence. The behavior and coping strategies include: techniques for working with LGBT-specific trauma, identity management and disclosure of their LGBT identities to providers and others, plus support engagement in the LGBT community and dementia services.

Testing of the intervention is now underway and will be delivered to 225 pairs of LGBT older adults living with dementia and their caregivers.

“Given their lifetime experiences of victimization, discrimination and bias, many LGBT older adults forgo seeking needed medical care,” said Fredriksen Goldsen. “LGBT people living with dementia and their caregivers often have difficulty accessing information and support services, which can be especially challenging when memory loss and dementia enter the equation.”

Complete Article HERE!

As her grandparents’ love was tested by dementia, a photographer focused on their bond

“When the nurses told Else that Poul could die soon, she stayed with him all the time at the nursing home, sleeping on a mattress next to his bed,” said Sofie Mathiassen, the recipient of this year’s Bob and Diane Fund grant.

By Olivier Laurent

Sofie Mathiassen’s grandparents — Poul and Else — always kept a journal, jotting down in a sentence or two — sometimes more — the small joys of each of their days together. Eight years ago, Poul was diagnosed with dementia and Parkinson’s disease, and, for the past four years, their granddaughter has been photographing their daily lives in Denmark, creating a record of Poul’s last moments on earth.

The work has won the Bob and Diane Fund grant, a cash prize dedicated to raising awareness through photography of the medical crisis around Alzheimer’s and dementia.

“I have always been very close with my grandparents and spent a lot of time with them throughout my childhood,” Mathiassen said. “So, when my grandfather began to get sicker I started photographing him. I wanted to keep him as I knew him, and I could see him fading away from me and from my grandmother and the rest of the family.”

Poul, 82, at the dinner table with his wife, Else.
Else, 83, at the dinner table with her husband, Poul.

Mathiassen’s photos show the bond between Poul and Else as one’s dementia becomes overwhelming and the other works to hold onto what’s slowly disappearing.

“Their story is just one example of what many families are going through,” Mathiassen said. “I hope that people see the love before they see the disease.”

“Photographing your family takes a certain risk and vulnerability,” said Getty Images photographer Chip Somodevilla, one of this year’s judges. “And Sofie has shared her world with us in an intimate and beautiful way. Denmark may have a sophisticated welfare system — but dementia still has the same impact.”

Mathiassen will receive $5,000 to publish her images in a photo book in 2020, said Gina Martin, the fund’s founder and executive director, said.

Poul and Else Mathiassen in their house in Skanderborg, Denmark.
Dinnertime at Poul’s nursing home.
A mural at Poul’s nursing home.
One week after Poul died, Else celebrated her 84th birthday. She lives alone in their house and plans to stay there.

Complete Article HERE!

Struggling with care — When is ‘end of life’ too much?

By GARRY OVERBEY

A 94-year-old Venice man allegedly shot and killed his wife, who suffered from dementia. He then tried to turn the gun on himself, authorities said, but the weapon jammed. He told the 911 dispatcher, “I’ve had a death in the family.”

Cheryl Green, 73, lost her husband of 54 years in July after a long struggle with Lewy body dementia.

When Green read about the arrest of Wayne S. Juhlin — currently the oldest inmate at the Sarasota County Jail, charged with first-degree murder — she felt sympathy for him — and guilt, for her husband.

“Unless you’ve walked in his shoes, you don’t know what’s going on,” she said. “He (Juhlin) probably saw something in her condition, that killing her was a mercy.”

The would-be murder/suicide made her think of her husband, and the horror of his final days in a Lake Placid nursing home.

“If I had the means and the courage, I would have ended his misery,” Green said.

She contacted the Sun following Juhlin’s arrest, objecting to the narrative put forth by authorities that help for caregivers is readily available but ignored.

“It sounded as if there were many options open to the man and he just didn’t know they were there. The options are few for individuals who don’t have a lot of money,” she said.

Had her husband been accepted into a long-term care facility, she said, she would have depleted their savings in two months.

A former Washington state employee with a degree in social work, Green said she’s not naive about Medicare and Medicaid and how easily people can slip through the cracks of a bureaucracy. But she was stunned to find herself marginalized in Florida’s elder care system.

“If you’re indigent and you need long-term care, you can get Medicaid,” she said. “But if you’re in the middle — if you’re not wealthy enough to afford $3,000 to $5,000 a month (for nursing care) — you’re stuck.”

Through the looking glass

Cheryl and Drew Green both grew up in upstate New York. High school sweethearts, they met while working in the same grocery store and married while still in their teens.

They moved to Seattle, where she got her master’s degree in special vocational education, he opened his own business as an electrician, and they raised their two children. She worked for the state, running and developing programs for people with developmental disabilities and mental health issues.

Drew was extremely handy and could do almost anything that needed doing around the house.

“He was an excellent craftsman,” Green said. “People liked him because he was so good at what he did.”

Around his mid-50s, things changed.

“He started making mistakes at work,” Green said. “He would say, ‘I don’t know why, but I can’t figure things out anymore.’”

The man who had once built her a backyard gazebo was now forgetting things and had trouble with basic tasks.

Doctors told them he had dementia, but it would be years before one finally diagnosed him with a specific type: Lewy body dementia. LBD is a progressive form of the disease, with visual hallucinations, that affects thinking, behavior, mood and movement. Life expectancy is usually five to seven years.

Drew couldn’t work and his business folded. Green quit her job to care for him. Seattle was too expensive under those circumstances, so she looked for a cheaper place to live. In 2010, they moved to Burnt Store Lakes in Punta Gorda.

They lived off their savings and took early Social Security benefits. As his health declined, they were relieved when he qualified for Medicare.

“He was living in an alternate reality,” she said. “He had delusions and thought he had to act on them.”

For instance, Drew once thought he could go upstairs by walking through a mirror.

His condition steadily worsened over the years.

“He still had a sense of humor. He stayed kind,” she said. “But he became really delusional and started lashing out at people.”

Drew would sometimes stay up and wander the house for three or four days at a time. He would walk into sliding glass doors.

“I was under the delusion that I could take care of him,” she said.

Green, who had been diagnosed with lupus in the last year after struggling with fatigue her whole life, was exhausted and finally reached out for help. Earlier this year, she contacted Charlotte County’s Senior Services. They agreed to send someone to help for four hours twice a week to provide respite care — giving the caregiver a break for a few hours and helping with household chores. But when the worker arrived, Green was shocked to learn she didn’t speak English. Green was handed a cell phone and told to talk to a supervisor, who would translate Green’s instructions. A second worker spoke some English, but she mainly sat and did puzzles while Drew watched.

The county’s Senior Services cannot discuss details of a specific case because of privacy, but there are limitations on help that can be provided.

“Vendors do have difficulties providing services in more remote areas of the county, weekends and evening service, and we have no vendor willing to handle heavier chore tasks,” said Deedra Dowling, manager of Charlotte County Human Services/Senior Division. “We depend on the subcontracted vendors to provide the staff for service provision and we do monitor for contract compliance. … We have had clients who have tried every worker, every agency, and finally left with no service provision as they could not be satisfied. While this scenario is extremely rare, it has happened a few times over the years. Overnight services have always been extremely difficult to staff for a variety of reasons.”

Dowling added she wishes there were “many more resources.”

Green said she needed someone to come three nights a week, and someone on call at night.

She started sleeping on the couch so she could keep an eye on the doors to make sure he didn’t leave the house.

“I didn’t understand what I needed. I thought, I’ll keep him until I can’t keep him home anymore.”

Resources were few. Her children, who live out of state, helped when they could. Neighbors helped, but Drew’s aggression scared them.

“It’s difficult to ask anybody to help restrain someone in the middle of the night.”

Reality check

In May, Drew escaped through a window. Green searched the neighborhood and found him wandering the streets in his boxer shorts. The next night, he got out again. This time, she found him unconscious in the bushes near the alligator-infested lake behind their home.

She brought him to Fawcett Memorial Hospital May 19. He was placed under observation, but Medicare wouldn’t pay until he was actually admitted, which happened once he began having heart issues and his blood pressure shot up.

His decline accelerated. “He started punching people,” Green said. “He was scary aggressive.”

At Fawcett, she credits one doctor with giving her a reality check on what she knew were her husband’s last days: “He said, ‘This isn’t a fairy tale. Grandpa isn’t going to come home and be surrounded by loving grandchildren.’ He said he’ll be ranting and raving and lashing out at people.”

One night in the hospital, to keep him from jumping out of his bed, Green wrapped him in a bed sheet and held it tight.

He was beyond being helped at home. A doctor said he would need three people caring for him around the clock.

“Obviously, he was lots and lots of work wherever he went.”

She tried to get him into Tidewell Hospice, but was turned down. She said she wasn’t given a reason, only that he “didn’t meet the criteria.”

“I knew he was dying,” she said.

A hospital social worker started looking for a nursing home, but no one local would take him, Green said, “because he was aggressive and had Lewy body, and they didn’t have the experience or the staff to deal with him.”

Only two facilities in the state would take him. Online reviews for the one in Clearwater were so bad it was unthinkable, so she went with a facility in Lake Placid.

“I hoped maybe he could have some rehabilitation, maybe learn to feed himself again.”

Fawcett insisted he be transported to Lake Placid by ambulance, a $3,000 trip the hospital agreed to cover.

‘The old person’s friend’

The Lake Placid facility turned out to be worse than she could have imagined.

“The place was dirty, the staff overworked and the administration was less than helpful.”

Drew’s conditioned worsened.

“He could not feed himself or use the bathroom,” Green said. “He cried when he saw me. He was wet, dirty and being fed food he would never eat in his former life. He was frightened and tried to keep the staff away from him. He was usually put in an old wheelchair missing half its parts and was slumped to the side.”

After 20 days, the facility notified her he would be taken off Medicare because he wasn’t making progress. They would let him continue to stay there for $260 a day. Had Green agreed, “I would go through any money I had left very quickly,” to keep him in a place where “I would not keep my dog.”

“I wanted someplace stable where I could visit him, but that was not available to me at all,” she said. “I looked every day for a new place. He was terrified and I was miserable.”

Suffering from infections, pneumonia and near-continuous seizures, Drew was taken to the emergency room. From there, he was finally accepted to a hospice in Clermont, near Orlando. Green noted someone telling her pneumonia was called “the old person’s friend” — “because it takes them away when they have other diseases.”

“It was a wonderful place to be,” she said of hospice.

She was able to be with him that night. The next morning, July 16, a nurse’s aide told her he had died.

A better ending

Three months later, Drew’s last days haunt her.

“What an awful way to die — thinking you’re not safe, that you’re being attacked all the time, no help from anybody, and the nursing home didn’t want him anymore.

“To have him in that place, to see him crying and scared,” she said, shaking her head. “I’ll never get over the guilt.”

She adds: “I shouldn’t have lived in a delusional state that I could take care of him.”

If he could have gotten into a hospice earlier, she said, “his life would have had a better ending.”

Her thoughts roll back to Juhlin and others like him who took action to end a loved one’s suffering.

“I don’t think I could kill anybody, especially someone I loved. But I wish I could have ended his misery.

“It’s horrible when the person you love most, you think they’d be better off dying. My last three dogs got so sick I had to put them down. I loved those dogs. I didn’t murder them.

“I wouldn’t shoot anybody, but I might have given him too many sleeping pills.”

Green said she visits online forums for people with loved ones suffering from Lewy body dementia. But she is reluctant to participate.

“I don’t want to tell my story because I don’t want them to know how bad it’s going to be.”

She wants to be an advocate for raising awareness about the condition, and offers advice for those in similar situations.

“Don’t think that anyone is going to automatically be there to help you.”

She recommends getting an elder care attorney once it becomes clear a loved one is going to require long-term care.

“Sit down and talk about Medicare and Medicaid options, and whether you can keep your house after your loved one passes away.”

Green still owes a little money on their house, and she’s confident she can keep up with home repairs without having to take out a loan.

Nine years of Medicare “doughnut hole” expenses for Drew’s medications, as well as retiring early, ate up their savings.

Still, she’s able to get by on Social Security and her pension from Washington. Plus, she says with a little chuckle, Social Security gives her a widow’s pension — $37.91 a month.

She’s adjusting to life without her husband.

“I had a man who could do everything,” she said. “Now I’m figuring out how to do everything.”

Complete Article HERE!

The impossible case of assisted death for people with dementia

Is it too much to ask people to follow through on previously expressed wishes for assisted death? An expert report suggests it may well be.

Dying with Dignity Canada’s CEO Shanaaz Gokool (centre) sits with Barb Brzezici (right), an assisted dying advocate whose mother died after a long battle with dementia, in Toronto, April 14, 2016.

When Canada legalized medically assisted death in 2016, the legislation excluded a trio of particularly difficult circumstances, committing to studying them in detail over the following two years. Those reports—on advance requests, mature minors and cases where a mental disorder is the sole diagnosis—were authored by three panels of eminent experts from a variety of disciplines, and in spite of the resolutely neutral and delicate language in the documents, they make for deeply compelling reading.

Of the three complex circumstances, it is advance requests—which would allow someone to set out terms for their medically assisted death, to be acted on at a future point when they no longer have decision-making capacity because of dementia, for example—that have drawn the greatest interest and agitation for change.

The working groups behind the reports were not asked for recommendations, but rather to provide detailed information on how other countries have grappled with these issues, what a modified Canadian law would need to take into account and how fields like ethics, philosophy, health care and sociology might help us puzzle through these issues.

And while they explicitly take no position on what the government should do, a close reading of the evidence the expert panel gathered makes it virtually impossible to imagine that advance requests for Canadians could exist and be acted upon.

That is not because the will isn’t there; many people with dementia or other illnesses that will eventually consume their cognitive capacity profoundly desire some sense of deliverance and control of their ending, for reasons that are easy to understand.

It is not because requiring help with every task of daily living, or being unable to communicate one’s thoughts or conjure up the names of loved ones is not a real form of suffering; for many people, that is just as intolerable as the spectre of a physically painful death.

And putting advance requests into practice doesn’t seem prohibitive because people who want them would be unsure about where to draw their line; indeed, that threshold is glaringly obvious for those to whom it matters most, and robust documentation and communication with health care providers and family members could provide much-needed clarity.

Rather, the reason it seems virtually impossible that Canada could have—and, crucially, use—advance requests is because it is simply too heavy a burden for those tasked with deciding when to follow through on the previously expressed wishes of the person before them, once that person can no longer meaningfully speak up for themselves.

“Evidence from international perspectives suggests there may be marked differences between stated opinion on hypothetical scenarios and actual practice,” the report notes. In other words, while people generally understand why others want advance requests and broadly support their availability, almost no one can bring themselves to act on them.

“It’s to be expected that these will be heavy decisions to be made, and I’m not sure that we would want them to be light, either,” says Jennifer Gibson, chair of the working group that examined advance requests for medical assistance in dying (MAID), and director of the University of Toronto Joint Centre for Bioethics.

Gibson’s group and the two other panels that examined MAID for mature minors and for people with a mental illness were chaired by former Supreme Court Justice Marie Deschamps and convened by the Council of Canadian Academies, a non-profit organization that “supports independent, science-based, authoritative expert assessments to inform public policy development.”

What is striking in reading the report on advance requests is how profound and deeply human it is, and how quickly the debate becomes almost dizzyingly existential—much more so even than the issue of assisted death in general. “There’s this human experience that we’re all sharing. We’re all in that together—that we are mortal, that we will die, that we will lose loved ones in our lifetime,” Gibson says. “That unavoidable vulnerability sort of encapsulates a lot of these policy and clinical and legal discussions that are unfolding.”

The report delves into concepts like the meaning of personal autonomy; how we care for those we love by shouldering the responsibility of making decisions when they no longer can; the concept of suffering and who defines it; how we weigh the interests of the patient against what their doctor and family are asked to handle; and which safeguards might help reassure those gathered at the bedside who have to make a decision.

“We can think about it as burden, but it’s not just about burden—it’s also about care….there is no question that burden is part of what comes with uncertainty. These are excruciating decisions that someone has to make on behalf of someone who is no longer decisionally capable,” says Benjamin Berger, a professor at Osgoode Hall Law School at York University and a member of the working group. “But a way of thinking about the burden is also, ‘Am I doing the right thing?’”

And a deeply conceptual sense of the self is central to the report: if in the present, you decide on and record a series of conditions under which you would no longer want to be alive, and you later become incapacitated, are your present and future selves the same person given how profoundly you’ve changed? If, once you are incapacitated, you appear perfectly content or even outright resistant to the MAID procedure you once requested, which version of you and which set of wishes and desires takes precedence, and why?

“Under what conditions might we expect that somebody would so radically lose those core compass points, if they lost capacity to make certain types of decisions, that they would become an entirely new person?” Gibson asks. “It is an existential question.”

And the report puzzles at length over this: can you really know from your present vantage point what your future self will want, how you might suffer or find joy in whatever your life looks like over the next horizon?

Research demonstrates that we are not very good at estimating what our quality of life would be if we fell ill or had some form of disability. This phenomenon, known as “the disability paradox,” is “pervasive,” the report notes. “The underestimation of quality of life by able-bodied or healthy people, rather than its overestimation by those living with a disability or chronic illness, drives the disability paradox,” the expert panel notes.

But again, in the debate over advance requests, this circles back to a deep concept of self: even if you are completely content once you are incapacitated, how much does that matter if your past, competent self loathed the notion of spending years in a long-term care facility needing help with every daily activity?

“Simply pointing to the idea that autonomy is respected and autonomy is important fails to wholly solve the most difficult issues in this field,” says Berger. “The question everybody is trying to ask is, understanding that autonomy is a core issue, what is the right method of ensuring that we respect autonomy?”

But for all of these sprawling legal, philosophical and ethical conundrums, it is when the report explores the experience of other jurisdictions with more experience practicing MAID or more liberal laws than Canada’s that the true difficulty in putting advance requests into practice for people with dementia becomes obvious.

Just four countries—Belgium, Colombia, Luxembourg and the Netherlands—allow advance requests for euthanasia in some form. However, “nearly all” of the information we have about advance requests in practice comes from the Netherlands, the report notes, because of “lack of implementation experience” in Colombia and Luxembourg, and very little detailed data available from Belgium.

The 2002 Dutch law that formally permitted the practice of euthanasia that had been going on for decades allowed for written advance requests for anyone aged 16 and older, in which they must clearly lay out what they consider unbearable suffering and when they would want euthanasia performed. Those would apply when people could no longer express their wishes and would have “the same status as an oral request made by a person with capacity,” the expert panel reports.

But while the annual reports from RTE, the regional review committees that govern euthanasia in the Netherlands, do not report the number of deaths due to advance requests, they do show that between 2002 and 2017, “all or most” of the patients who received euthanasia due to suffering from dementia were in the early stages of the disease and still had capacity to consent.

A study of 434 Dutch physicians between 2007 and 2008 found that while 110 had treated a patient with dementia who had an advance request, only three doctors had performed euthanasia in such a case (one doctor helped three people to die); all five of those patients too were “deemed competent and able to communicate their wishes.” The paper concluded that because doctors could not communicate with the patients otherwise, “Advance directives for euthanasia are never adhered to in the Netherlands in the case of people with advanced dementia, and their role in advance care planning and end-of-life care of people with advanced dementia is limited.”

Indeed, in 2017, a group of more than 460 Dutch geriatricians, psychiatrists and euthanasia specialists co-signed a public statement committing to never “provide a deadly injection to a person with advanced dementia on the basis of an advance request.”

And while family members of people with dementia support the idea of MAID if their loved one had an advance request, when it comes to acting on that, the majority—63 per cent in one study and 73 per cent in another—asked a doctor not to follow the request and actually provide euthanasia, but instead to simply forego life-sustaining treatment. “Some of the reasons given by relatives were that they were not ready for euthanasia, they did not feel the patient was suffering, and they could not ask for euthanasia when their loved one still had enjoyable moments,” the report explains.

Other Dutch studies show distinct contours in opinions on advance requests in cases of advanced dementia; the general public and family members of people with dementia view it more permissively than nurses and doctors, and doctors are most restrictive of all. “The authors of these studies hypothesized that this could be due to the different responsibilities of each group,” the working group wrote. “Physicians actually have to carry out a patient’s request, and when a patient cannot consent, this act comes with a heavy emotional burden.”

Here in Canada, the federal government has said it has no plans to alter the law to permit advance requests, even in the face of intense interest and pressure around the issue in a particular context a few months ago. In November, Audrey Parker, a vivacious Halifax woman with Stage 4 breast cancer, died by MAID two months earlier than she wanted to, because she feared cancer’s incursion into her brain might render her unable to provide final consent for the procedure if she waited. Parker spent her final months as the highly visible and compelling face of people like her, who are approved for MAID but forced to seek it earlier than they want to—or reduce badly needed pain medications—for fear they will lose the lucidity required to consent.

When it comes to concerns about determining when a patient with an advance request is ready for MAID, how clear their conditions are and whether they may have changed their mind if they can no longer communicate, the report suggest that cases like Parker’s would be the simplest and least controversial in which to permit advance requests. “These issues would likely not arise if a person wrote a request after they were already approved for MAID,” the working group notes. “In this case, they would be able to confirm their current desire for MAID themselves, and may even choose a date for the procedure.”

But when it comes to dementia—the condition which seems to inspire the strongest public desire for advance requests, and for which the disease trajectory is longer and more uncertain—the situation is much more difficult.

It is rarely useful to frame a public policy debate in terms of factions of winners and losers. But with the notion of advance requests for people with dementia, it is difficult to avoid the sense that in order for one group to get what it very understandably wants—a sense of control and escape from an existence that is at least as intolerable to some people as physical suffering—another group must shoulder a different sort of crushing burden—namely, the medical practitioners tasked with actually performing MAID and the family members or substitute decision makers who would have some role in sanctioning the procedure based on their loved one’s recorded wishes.

But Gibson argues that the solution to a heavy burden is not to make it light, but rather to ask what supports and measures would be required to bear it if such a thing were available in Canada. “And some members of the panel were really doubtful that anything would be sufficient to bridge those uncertainties, whereas others on the panel said, ‘I think we’ve got some experience with this, I think we could,’” she says. “There’s not going to be some external adjudicator to tell us we got it right.”

And while there is something distinctly fraught in decisions about MAID, she points out that families all over the country contend every day with life-and-death medical treatment decisions behalf of the people they love.

“It’s part of the ways in which we express love and caring for our loved ones, is we care for them even when they’re unable to care for themselves,” Gibson says. “We ought not to be surprised that these decisions are burdensome. And at the same time, they’re burdensome precisely because of these human connections that we have.”

The immense weight of these choices, then, is the price of admission for the bonds we share, and for the meaning we assign to life itself.

Complete Article HERE!