After a Dementia Diagnosis

— Preparing for the Future

A diagnosis of dementia, a category of diseases affecting memory and thinking that includes Alzheimer’s disease, can feel overwhelming and upsetting. You might worry that you will lose control over your life and ability to make your own decisions. Fortunately, receiving a diagnosis of dementia or Alzheimer’s does not mean that you cannot execute legal documents or make decisions about plans for your future finances and health care.

People with dementia can execute legal documents to plan for their futures when they have the mental state — or capacity — to do so. Capacity refers to your ability to understand the contents of a legal document, such as a will, and know the consequences of executing it. If you know who your family is, understand your assets, and comprehend your will, you can execute a valid will and plan for the distribution of your estate after your death, provided you understand what you are signing and its effect on your life.

The following can help you in planning where you wish to live, what kind of care you receive, and what happens to your assets if you get severely ill or pass away.

Health Care Power of Attorney

Consider appointing a health care agent to make medical decisions if you become incapacitated. You can name a health care agent using a health care power of attorney, sometimes called a medical power of attorney or a durable power of attorney for health care. Your health care agent can make medical choices if you can no longer do so.

Picking someone you trust, such as a responsible child or spouse, or another family member, can give you peace of mind that they will have your best interests and desires in mind when they make decisions. For instance, dementia patients who prefer receiving in-home care can express this wish to their agent.

In the power of attorney document, you can also state your intentions regarding health care and limit your agent’s capabilities if you wish.

Living Will

For an added layer of protection, you can also draft an advance directive or living will that states your desires regarding medical treatment if you are unable to communicate with your physician. Your living will can express whether you want treatment to prolong your life.

Financial Power of Attorney

Using a financial power of attorney, known as a power of attorney for property, you can select a trusted individual to handle your financial affairs if your disease progresses such that you can no longer make financial decisions. Your financial agent can manage your money and pay bills on your behalf, but they cannot use your money for themselves.

In the power of attorney for property document, you can restrict your agent’s powers. For instance, a person might specify that the agent can manage personal accounts, but not sell the family home.

Long-Term Care Planning

After a dementia diagnosis, consider whether you would like to receive long-term care at home or in a facility, and whether you intend to apply for Medicaid or long-term care insurance. If you want to apply for Medicaid, you might need to prepare your finances to become eligible.

Last Will and Testament

Making a last will and testament, also known as a will, can help ensure your assets go to your family and friends when you pass away. You can determine how much of your money each beneficiary will receive and make bequests to individuals. For example, if you have items of sentimental value, you can leave them to specific people. Without a will, your assets will transfer to your heirs according to the law in your state.

Consider meeting with an elder law attorney in your area to discuss your plans for your future.

For additional support and to learn more about Alzheimer’s disease and related disorders, reach out to your local Alzheimer’s Association chapter.

Complete Article HERE!

Dementia in Prison Is Turning into an Epidemic

— The U.S. Penal System Is Badly Unprepared

Older prisoners will make up a third of the prison population in a decade, and many of them will develop dementia

By Sara Novak

Terrell Carter remembers one prisoner in particular. They had both been seeking commutations of their life sentence so they could eventually apply for parole. But Carter says that in the midst of the process, his fellow inmate became so debilitated with dementia that the man could no longer function well enough to complete the paperwork.

Within a few months, Carter says, this prisoner was incapacitated, lying in bed with arms outstretched over his head, calling for help. Carter, an inmate who volunteered in the hospice ward of State Correctional Institution Phoenix in Collegeville, Penn., says that his fellow prisoner languished and eventually perished in prison because he was too mentally impaired to file for forgiveness. “By the end, he didn’t know the crime he was charged with committing,” Carter says

In the October 2021 issue of Northwestern University Law Review, Carter, along with Drexel University associate professor of law Rachel López, argue that the current sentencing structure all too often locks people up and throws away the key. A former commissioner on Pennsylvania’s sentencing board, López is especially concerned with the number of elderly people who are incarcerated. “It’s all part of the legacy of the ‘tough on crime’ era,” she says.

A survey by the Pew Charitable Trusts found that the number of inmates age 55 or older increased by 280 percent from 1999 to 2016. Three-strikes laws and mandatory life sentences without the possibility of parole expanded during the 1980s and 1990s, and many of these laws are still on the books today. As the number of aging prisoners balloons, so, too, do instances of dementia. An article López authored in the June 2020 issue of Federal Sentencing Reporter projected that between 70,341 and 211,020 of the estimated 400,000 incarcerated elderly in 2030 will develop dementia. Alzheimer’s disease is the most common diagnosis, but dementias that involve Lewy bodies, the vascular system and Parkinson’s disease are also on the list.

Prison may also accelerate aging and the possibility of developing the disease, according to a January 2022 article published in the journal Health & Justice. Study author Bryce Stoliker, a researcher at the University of Saskatchewan, says that the high risk is because of challenges faced in prison life—and inmates’ experiences before incarceration. Prisoners are often marginalized members of society with less access to health care, poorer diet, issues with alcohol or drug misuse, mental health problems and potential traumatic brain injuries—all factors that increase the likelihood of developing the condition. “Once behind bars, a lack of stimulation and an overall poor quality of life magnifies the problem,” Stoliker says.

Prisoners with dementia are also vulnerable to abuse. Their erratic behavior and inability to follow directions is aggravating to other prisoners and to the staff in an already tense and sometimes violent environment, says Tina Maschi, co-author of the book Aging Behind Prison Walls: Studies in Trauma and Resilience.

A 2012 study she authored in the Gerontologist found that those with dementia are increasingly vulnerable to “victimization.” If they become aggressive toward staff or can’t stay in line, they’re more likely to be reprimanded. “They’re no longer in touch with the prison rules, and as a result, it appears to staff, who often aren’t trained in dealing with dementia patients, that they’re acting out,” Maschi says. Additionally, according to the study, they can become victims of sexual assault by other prisoners because they can’t defend themselves.

With strict sentencing practices still in place, the problem could get worse. The American Civil Liberties Union projects that in a decade, prisoners age 55 and older will make up one third of the U.S. incarcerated population. And prisons, López says, don’t have the resources to tend to this highly vulnerable population. Still, there may be some relatively available short-term solutions. Older prisoners are often housed together, but senior structured living programs that include daily stimulation such as puzzles, knitting and cognitive exercises may help to reduce the risk of elderly prisoners who get dementia later on.

True Grit, a program at Northern Nevada Correctional Center, is described in a review published in the December 2019 issue of Health & Justice. It teaches inmates older than age 55 skills such as latch rug making, crocheting, painting, jigsaw puzzle making and beading, as well as emphasizing the importance of physical exercise. The program has been shown to increase inmate quality of life, reduce medication use and behavioral problems, and enhance overall health and well-being.

Compassionate release is another tool that is largely underutilized, according to experts. Also called “geriatric parole,” it’s currently used once patients get to the end of their life. But for the program to reduce the elderly burden on the prison system, it would have to be used before inmates are so ill that they can no longer be integrated back into society. Once prisoners are too far gone, says Ronald Aday, author of the book Aging Prisoners: Crisis in American Corrections, it’s much harder for them to find “a place to land” outside of prison, and nursing homes are unlikely to admit a felon. Still, a 2018 report from Families Against Mandatory Minimums (FAMM) found that the program is rarely used and that, in many states, it presents aging inmates with a troubling “number of barriers” to getting out.

When inmates do develop dementia, prison workers, at a minimum, need to be provided with basic training to deal with the disease. “Correctional staff and those in direct daily contact with older prisoners need to understand both their vulnerability to other inmates and their inability to understand orders,” Aday says.

Looking ahead, dementia wards in prison may be needed to house prisoners with cognitive problems. One such memory ward opened in 2019 at Federal Medical Center Devens in Massachusetts. The facility staff is specially trained to take care of those with dementia.

But building dementia wards in prisons shines a spotlight on a larger issue: prisons are not properly equipped to house these patients because this was never their purpose in the first place. “The original intent of prison was to rehabilitate,” Aday says. “Correctional institutes were meant to ‘correct people’ so they could go back out and work.” Somewhere along the way, he adds, we’ve lost our purpose, and as a result, 10-year sentences have tripled, and life in prison without the possibility of parole is all too common. If we don’t get ahold of our out-of-balance sentencing structure, Aday says, we’ll never be able to really address the issue.

Carter, now age 53, feels lucky that he made it out “by the skin of his teeth.” After graduating from Villanova University and spending years taking care of elderly inmates, he was able to commute his sentence to life with parole for a robbery that he says went terribly wrong when he was 22 years old. Last July he was released after spending three decades in maximum-security prison.

Still, Carter is haunted by those he left behind, especially in the hospice ward. He says by the end of their life, most of them don’t even realize where they are, let alone what got them there. “You gotta wonder what kind of punishment it is if you don’t even know you’re in prison,” Carter says.

Complete Article HERE!

We all deserve a good death

– especially people living with dementia

On International Nurses Day (May 12), I commend the contribution made by all nurses involved in the care of people living with dementia in residential, home and community care, in hospitals and through clinics and health centres.

By Maree McCabe

Dementia is a terminal illness and appropriate palliative care is an essential element of quality care and end of life care for people with dementia, and for their families and carers.

People living with dementia, their families and carers deserve specialist dementia support to plan for and manage their end of life with dementia.

While people living with dementia will unlikely to be able to communicate clearly at their end of life and we may never know how much they can hear, see, feel and comprehend at that time, we need to support them and include them in decisions about their care through the continuum of the disease right through to end of life.

People with dementia share with us they need to have confidence in the system and the people involved in their care because they know they may not have capacity at the end of life to express their wishes. They rely on their families, support networks and healthcare professionals to ensure they receive quality dementia care and experience a good death.

Caring for someone with dementia can be rewarding and emotionally, physically and financially challenging. Families and carers frequently report feeling stressed and confused as to how and where to access end of life care and services, and can feel pressured to make immediate decisions for their loved ones.

Dementia Australia is calling on all sides of politics to commit to a national dementia palliative care program modelled on an evidence-based, nurse-led model of palliative care already successful in South Australia.

The Nightingale Program is the leading specialist dementia palliative care program in Australia and with the support of a federal funding commitment could be expanded across the country.

I acknowledge the support of existing funders, The Rosemary Foundation for Memory Support and Country SA Primary Health Network Ageing Well in Place initiative.

The Nightingale Program clients have access to specialist nurses who provide palliative care strategies and advice to support those living with dementia and their families and care providers. There is a focus on promoting choice and well-being.

The specialist dementia nurses are trained to deliver a person-centred approach to enable people living with dementia to:

  • Stay at home longer and maximise their independence
  • Promote quality of life and positive relationships
  • Have a voice in their future care options and decision making
  • Avoid unnecessary presentations to acute hospital settings
  • Access clinical advice, including co-morbidity management, pain management, delirium and palliation.

The many benefits of the Nightingale Program include:

  • Specialist nursing advice
  • Comprehensive and holistic nursing assessment, which will identify current issues and anticipate changing needs
  • Referral to other service providers as needed
  • Continuity of care, offering a single point of contact for guidance
  • Advice provided in home, residential aged care, community and hospital settings
  • Consultation in the development of advance care directives for future health care needs
  • Education and emotional support to support family and carers
  • Interdisciplinary teamwork throughout the health and care networks.

I call on all sides of politics to commit to expanding this program nationally to ensure all Australians living with dementia are supported by staff trained and qualified to provide dementia-specific palliative care.

Improving palliative care for people with dementia, no matter where they live, must be a policy priority Australia-wide to provide peace of mind for the almost half a million Australians living with dementia and the 1.6 million people involved in their care.

Complete Article HERE!

1 in 2 older adults now die with a dementia diagnosis

by Kim Callinan

Nearly half of all older adults now die with a dementia diagnosis, up more than one-third (36%) in just the past two decades, according to a new study published in the Journal of the American Medical Association.

While these findings are disheartening, they also serve to underscore the importance of advance care planning for the care we want – and don’t want – should we get dementia. Thinking through these difficult decisions and having conversations with our loved ones and healthcare providers now, while we are still capable of making our healthcare decisions, will be a gift to our loved ones and to ourselves.

A good time to discuss your end-of-life care wishes with your family is when you are together, like Memorial Day weekend in May.

It’s important to keep in mind that dementia, as a public health crisis, came as a result of significant advancements in medicine.

As we have discovered cures or treatments for many diseases over the last century that used to be life-threatening, life expectancy has increased, and more people are dying with and from dementia. In short, medicine can prolong how long the body lasts, but not the mind.

However, the default mode within our medical system is to extend the patient’s life, regardless of the quality of life, even for people with advanced dementia. We even subject advanced dementia patients to aggressive end-of-life interventions that inflict needless suffering with little thought.

Dementia patients take comfort from their surroundings; transferring them to a hospital causes agitation, upset and in the most extreme situations, trauma. Yet, nearly six out of 10 nursing home residents with advanced dementia (57%) go to the emergency room at least once in the last month of life.

Furthermore, emergency room physicians are trained to extend life. This reality means you could be subjecting a patient with advanced dementia to cracked ribs as a result of cardiopulmonary resuscitation (CPR), an uncomfortable urinary catheter, or a breathing tube.

A small percentage of people may want these aggressive interventions. However, more than nine out of 10 Americans (92%) agree that a person should “have the legal right to put in writing in advance that they want their caregiver and medical team to stop medical treatments when they are at a specific stage of dementia,” according to a 2018 survey by NORC and the University of Chicago commissioned by my organization.

The way to solve this crisis is to balance our advances in medicine with empathy and respect for the voice and wishes of the individual; to be seen and heard as an individual and not just as a patient.

While every person does have a legal right to forgo treatments, operationalizing this desire is not clear-cut. Dementia is a progressive disease: it’s not always obvious to loved ones the point at which their loved one would want to forgo treatments. Is it when they no longer recognize you, even if they seem otherwise happy? Is it only if they get violent? Or perhaps it takes multiple factors (e.g., can no longer eat, speak, dress themselves or carry on a conversation)?

I encourage all of us to give our loved ones the gift of clarity by filling out the free-of-charge Compassion & Choices dementia values and priorities online tool (values-tool.compassionandchoices.org); this tool helps you create a personalized care plan, based on your selected preferences, that your health care proxy can use to care for you should you get dementia.

While unfortunately there is no cure for dementia, we can take proactive steps to die naturally, potentially with less suffering, through advance care planning.

Complete Article HERE!

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

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

By Emily Harris

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

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

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

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

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

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

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

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

Jean’s experience isn’t an outlier.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jean Bishop’s family agrees with that.

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

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

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

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

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

Complete Article HERE!

A terminally ill Hopkins woman shares her plans to die with dignity

Voluntarily stopping eating and drinking (VSED) will allow a woman with Alzheimer’s to die on her own terms.

Cheryl Harms Hauser with her husband, David McNally, at their home in Hopkins.

By Kevyn Burger

Warm and lively, Cheryl Harms Hauser relished her hostess duties when a visitor arrived at her Hopkins home, telling the back stories of the art hanging on the walls, selecting the perfect color of mug for coffee.

Despite her outgoing personality and fashionable appearance, Hauser, 75, did not dress herself. She can’t dial a phone, set a table or follow the plot line in a television series.

Two years ago she was diagnosed as having Alzheimer’s disease. Now this wife, mother and grandmother is planning a way to die before dementia claims her.

Hauser has decided that at an as yet unnamed date, she will hasten her death through a process called VSED: she will voluntarily stop eating and drinking.

“When the day comes when nothing matters anymore, I’ll begin,” she said. “My brother died of this disease and it was torture. I don’t want that for me and my family.”

In the past few years, VSED has emerged as a possible course of action for people diagnosed with terminal illnesses or progressive diseases. In the face of great suffering or a long, irreversible deterioration, the people who choose VSED refuse to swallow food or sip liquids. It typically takes 10 days to two weeks for them to die.

“Some people want to go out fighting to the end, but that’s not for everyone,” said Dr. Timothy Quill, a Rochester, N.Y., palliative care physician who has provided medical support to VSED patients. Quill also co-authored “Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death,” which was published earlier this year.

“Of what I call the ‘last resort’ options, VSED is the most available and least well described,” he said. “It appeals to people on the sicker end of the spectrum. They’re prepared for the end of their life and want to speed things up. It’s not dissimilar to someone who chooses to end life-sustaining treatments.”

Humans have informally chosen VSED for centuries. But carrying it out today is no simple act. People opting for this method need a doctor’s supervision that includes medication, symptom management and hospice care, Quill said.

They also need family support.

“They need a partner with some sophistication who is willing to go through this process with them,” Quill said. “They need to share the same values and have many conversations to make sure everyone is on the same page.”

For Hauser, that partner is her husband, David McNally.

Friends introduced the pair in 2007. A mother of three, Hauser was thrice divorced and McNally was a widower whose first wife and the mother of his five children had died of ovarian cancer.

“We crawled into love,” Hauser said, smiling at her husband. “With my track record, I resisted for a long time before I succumbed.”

Four years into their relationship, Hauser was by McNally’s side as he faced a debilitating form of throat cancer. His radiation treatments left him thin, weakened and dependent on a feeding tube for a time.

“We didn’t need to get married, but when we bought this house together [in 2016], I turned a corner. Something bubbled up,” McNally said. “I told Cheryl, ‘I wouldn’t mind being married. Actually, I would love it.'”

But within a few years of exchanging their vows, they both noticed changes in Hauser’s behavior and memory. That led to her being diagnosed with the fatal disease.

“Cheryl’s level of self-awareness is high. She observes things and can talk about them because she is not in denial or frightened. This side of her brain is dying,” said McNally, touching his wife’s styled hair. “We have seen the MRIs.”

A leadership consultant, speaker and author of five bestselling business books, McNally has put his career on hold while he assumes duties as his wife’s full-time caregiver.

Because Hauser is no longer comfortable being alone, her daughter Wendy Longacre Brown creates a weekly Google calendar and shares it with her sister and a few of Hauser’s friends so they can sign up to be on duty when McNally needs a break.

“My mom prides herself on being dignified,” Brown said. “She’s the person who always showed up with lipstick, sent the handwritten cards. She’s losing the values she’s held closely, the ones that identify who she is. She’s begun mourning that person and I mourn with her.”

Brown is a trained and certified death doula whose work focuses on providing emotional and spiritual support, rather than medical care, for the dying and their families. She’s now using her knowledge to help her mother with end-of-life decisions.

“Mom has tremendous courage and clarity. She’s decided she doesn’t want her life to end in a nursing home, unable to recognize her loved ones or herself in the mirror,” said Brown. “I’m so proud of her. She gets up every day to live the best life she can.”

A good death

Brown became familiar with VSED through the influential book “Choosing to Die” by Phyllis Shacter, which she shared with her mother.

“That got the conversation started,” Brown said. “We talked and talked and Mom said right away, ‘I think this is for me.'”

Part memoir, part how-to manual, it tells how Shacter helped Alan, her husband of 26 years, carry out his wish to use VSED to hasten his death.

“That was in 2011. We had no guidance at the time on how to do this,” she said. “We were the guinea pigs, the forerunners. When we heard about it, it sounded horrible. After we investigated, it didn’t.”

Like Hauser, Alan was diagnosed with Alzheimer’s. When he was in the early stages of the disease, he signed a health care directive and authorized his wife to carry out his wishes.

“We understood what lay ahead,” she said. “Alan had to stop eating and drinking while he was still mentally competent. One day he told me, ‘I’m ready. It’s time.'”

To start the process, Alan consumed only 500 calories a day for five days. He said his goodbyes to his daughter and friends, then he settled into his bed and soon was mostly sleeping.

“We played music, I massaged him. He wasn’t hungry, but he was thirsty and I sprayed mist into his mouth,” she said. “On the last day he was comatose, but when I said, ‘Blink your eyes if you are comfortable,’ he did. He had taken care of his business and I knew he was all right.”

Shacter relied on medical supervision. In the nine days that it took Alan to die, he received ongoing care and medication from hospice caregivers and a physician.

“These are not suicides, but rather elective deaths,” she said. “We made a conscious decision to go outside the natural order to bring death on.”

A little known option

Quill explained that hunger quickly diminishes in VSED patients, but they remain thirsty, which is treated with oral swabs, mists or swishing and spitting. Once they become dehydrated, their blood pressure drops, resulting in organ failure. That’s when medical and hospice providers begin administering stronger painkillers. Most patients experience agitation, delirium and/or hallucinations in the 24 hours before death and are sedated with anti-anxiety drugs and tranquilizers.

By the time death nears, patients have fallen into unconsciousness. Then they stop breathing and their heart stops.

“There’s no suffering in the last hours. They appear to be sleeping,” said Quill. “If you view death as part of the life cycle, which is how I see it, it’s a quiet process.”

Thaddeus Pope, a professor at Mitchell Hamline School of Law who has spent 20 years writing and teaching about end-of-life precedents,contributed the legal perspectives of VSED as co-editor of Quill’s book. He said the topic often remains taboo among both medical practitioners and individuals at the end of life.

“This is a legitimate option for those in late stage disease, but it’s not on the menu,” Pope said.”It’s almost invisible, underground. You have to know to ask for it. People don’t know how to talk to their doctor about VSED.”

Leading the ship

Hauser has signed an advance care directive, which has an attachment that spells out her desire to use VSED to hasten her death. It asks for the process to begin when, among other things, “I lose my ability to have logical conversations,” and “When I get lost in familiar locations.”

The document also asks that she receive her care at home with no life-prolonging procedures so that she can die with “dignity and grace.”

In March of 2020, Brown shot a video of her mother stating her wishes. Brown plans to record another video when the time to execute the VSED plan begins “so if there is an authority who questions whose idea this was, the source will be in front of them,” Brown said.

Brown talks to her mother and stepfather every day and visits frequently to track the small cues that mark the progression of the disease in her mother.

“My job is to support my mom and her wishes and to know when she is still able to make the decision on her own so we can fulfill that wish,” she said.

Harms said she wants to spend her final days in the den of the home she shares with McNally. She’s also specified the songs she wants playing and the people she hopes will stop by. But she understands that there’s always an out.

“If, three days in, she says, ‘This is too scary. I want a meal,’ we will remind her of her words and show her the video. But if she decides she’s not willing to do it anymore, we will honor that, no question,” Brown said. “It will be a big surprise to me if she says stop. No one is leading this ship but my mom.”

Finding joy

For now, Hauser and McNally remain socially active. Hauser regularly attends her grandchildren’s sporting events (although she sometimes needs to be reminded about which team to root for).

In the past year, she has taken up a new pastime — and earned a nickname.She dances to music while painting, dabbing and dashing acrylic paint onto canvases to create one-of-a-kind colorful abstracts. McNally calls her Picassorina.

She’s asked that her paintings be offered for sale at the reception that will follow her memorial service, and that the proceeds go to an as yet unnamed end-of-life nonprofit.

“I’ve always loved art and creating like this is very therapeutic. It makes me feel good,” Hauser said. “My mantra is, I will not do anything that doesn’t bring me joy.”

Hauser and McNally have been transparent with their family and friends about their decisions and consider sharing their part of Hauser’s final mission — and her legacy.

“We talk openly about VSED and we want to encourage people to have these conversations about death and how they want to die,” she said. “I have had time to get to acceptance and I want to share my journey. This is what I have to give.”

Complete Article HERE!

Study highlights challenges providing end-of-life dementia care

by Sandy Cheu

Providing end-of-life dementia care is rewarding but full of challenges including having to help family members accept that their loved one is dying, a study of aged care managers has found.

The study, published in BMC Geriatrics, explored the experiences and perspectives of 20 residential or  care managers at 11 aged care homes in New South Wales and Victoria of dementia specialists HammondCare.

It found that continuous skill development of frontline staff, iterative family discussions, and partnership building between aged care staff and general practitioners are required for optimal end-of-life dementia care in aged care homes.

Senior researcher on the study Professor Josephine Clayton said the study found that aged care managers found delivering end-of-life dementia care relentless but rewarding.

“Staff are really passionate and committed about providing good end-of-life care for the residents but they did however experience a number of challenges in delivering that,” Professor Clayton told Australian Ageing Agenda.

Other themes identified in the research include the need to lay the groundwork to establish what families understand about dementia, play peacemaker in the face of unrealistic family demands and expectations such as for medical intervention and chip away at denial and cultivate a path towards acceptance of death.

“Families and even some staff didn’t necessarily think of about dementia as a life limiting or terminal condition, so there was a need for a constant education around that, which can be confronting for families,” said Professor Clayton director of HammondCare’s Centre for Learning and Research in Palliative Care.

“And because the residents at our facilities usually have lost the capacity to make decisions for themselves, it’s very much around the staff communicating regularly with the family members about what the person would have wanted,” Professor Clayton said.

The need to support and strengthen staff and befriend GPs comfortable with providing palliative care were the other themes identified in the study.

“Sometimes it might be junior staff who might not have experienced this death in their own life and it can be confronting for them to have to deal with death and dying. And so there was a need for constant education and support for the frontline staff,” she said.

“Some GPs were very uncomfortable with prescribing medications that might be needed to ensure a person can be in comfort at the end of life, or they might have an attitude of ‘oh something changed, go to hospital’, which was not what the family or the person would have wanted,” Professor Clayton said.

While addressing the barriers is “not just a simple fix,” it is positive that the aged care royal commission has highlighted some of these challenges, Professor Clayton said.

“There needs to be an investment in funds and education to support our frontline staff and to enable them to have those regular communications to support families,” she said.

Aged care staff and GPs also need to be rewarded and paid appropriately to attract the right people into the sector, Professor Clayton said.

“There’s a number of wonderful, dedicated GPs out there who do visit nursing homes, but for some of them is just not practical for their business to be able to come to nursing homes because it’s a lot of travel back and forth for that visit and they may not be appropriately remunerated, she said.

Access “A good death but there was all this tension around”- perspectives of residential managers on the experience of delivering end of life care for people living with dementia.

Complete Article HERE!