Caregiving – Page 39 – The Amateur's Guide To Death & Dying

January 20, 2016January 19, 2016

Rural Aging: Shaken by her husband’s death, Jane Faller vows to stay on their remote land

By Erica Curless

Jane Faller is embraced by her longtime friend Deb Anthes after she changed Faller’s arm bandage on Oct. 1 in Republic, Wash. Injured in a fall, Faller’s arm required daily care from Deb, who would visit her as Jane’s husband, Bob Faller, lay in hospice care.

Bob Faller died after a day of fighting and struggling. Naked and fierce, gripped by death’s delirium, he rolled on the floor tearing paper into tiny shreds. He tried to flush his pants down the toilet.

Jane, his wife of 58 years, was alone in their rural Republic house, terrified. Helpless.

When a new day dawned, she called a hospice nurse, who told Jane to increase her husband’s morphine dose to every two hours. Bob eventually settled, slept, and slowly let his body shut down.

Longtime friend Steve Anthes was with Jane as Bob, 79, took his final breath. It was Oct. 19, nearly 18 months after Bob was diagnosed with throat cancer, 18 months of dying slowly in the forests far away from hospitals, tubes and machines. It was the ending he chose.

Now a new struggle begins for Jane. Can this 77-year-old woman live alone in the winter in remote Ferry County with little money and medical bills arriving daily?

A nondescript box containing the ashes of Bob Faller sits atop a hutch he built by hand in his earlier years. “There’s pieces of furniture he built all over the country,” Jane said.

Relief brings feelings of guilt

“It’s quiet now,” Jane said shortly after her husband’s death. Her voice was strong but soft over the phone, the relief evident.

Yet within an hour, her house filled with people and the chaos of dying’s aftermath. The coroner, friends bearing containers of food, phone calls, decisions.

By 9 p.m., Jane sat in near-darkness on her couch, alone. Murphy the dog slept on the floor near her feet. Bob’s hospital bed was around the corner, empty.

“I feel guilty at feeling so relieved,” she said. “I’m really going to sleep tonight.”

Three months later, Bob’s ashes are in a gray plastic box on a beautiful wooden shelf that he crafted with his own hands years ago. Jane carefully removed the lid, exposing a plastic bag of ash. She put her nose near the bag and took a big sniff. She shrugged. At first she talked to him a lot, lit candles. Not so much now.

Jane’s unsure what she will do with the ashes, other than eventually spread them somewhere in nature. It doesn’t matter right now as snow falls outside the window and each day presents more pressing problems and challenges.

Two weeks ago the weather warmed and snow slid from the roof, burying the deck so she couldn’t open the door. She called for help.

A few weeks before that, the ancient hot water heater leaked at least 25 gallons onto the floor and into the crawl space under the house. She called the local hardware store for the name of a plumber, who inspected the damage and asked for a $400 check to buy a new heater and supplies. The man was gone several hours, long into the evening; Jane panicked. At one point she held her cramping stomach, wrought with stress. But he eventually returned and by 9:30 p.m. had the tank installed and working. She paid another $125 in labor costs and then had to buy a new faucet for the sink. Her hand shook as she wrote the check.

After visiting her daughter in Issaquah, Washington, for Thanksgiving, she returned home and turned on the kitchen light. It crashed from the ceiling.

Jane Faller dons a coat in her mudroom containing canned goods on Wednesday. Everywhere she looks, she sees reminders of her late husband. Jane and Bob canned the goods last summer and they remain stored on a shelf he built for them next to a collection of his favorite hats.

Cumulative stress taking its toll

Jane knew living alone would be challenging, but she wasn’t prepared for the reality of it.

A year of stresses have snowballed: Bob’s illness and mental highs and lows. The nasty fall while walking her dog that turned into a three-hour ambulance ride and a weeklong stay in a Spokane hospital. The missed time with her dying husband because of her hospitalization. The nearby forests that erupted in wildfires this summer, the same week Bob started hospice care, forcing them to prepare to evacuate.

Now there’s snow and ice and long, dreary days. After spending months with her arm immobilized in a brace and then in physical therapy, Jane’s arm and hand still hurt. The scars are purple and angry. Her fingers ache.

Jane is timid about walking, although she used to hike miles a day in all weather. She hasn’t resumed her yoga practice. Her legs and feet are achy.

“She’s keeping a good face on it,” said Cherie Gorton of Rural Resources, who checks on Jane at least weekly and recently sat with Jane as she opened piles of medical bills. “I think it’s to the point where she probably needs to get out more. Accept invitations. But I know that is really hard to do.”

Gorton called Jane’s daughter in Issaquah, Cat Kelley, to see if she could help her mother make sense of the mounting medical bills from the hospital stay and ambulance ride. Jane has Medicare, but that only covers a percentage of the bills. She has a few too many dollars in her savings account to qualify for Medicaid. Jane and Bob took out a reverse mortgage that covers their mortgage payment, and she receives Social Security. Her son in North Carolina recently created a GoFundMe account to ask people for donations.

The financial woes weigh heavy on Jane. She doesn’t like owing people. Her kids want her to wait for all the bills to arrive so she knows how much she owes. Then they will figure out a plan.

“It makes me really upset,” Jane said, after a recent trip to the mailbox, which most always contains a bill. “It’s horrible.”

On Oct. 20, the day following Bob’s death, daughter Cat Kelley holds Jane’s healing arm as the two go for a walk on the Fallers’ Republic, Wash., property.

Once estranged, the kids have visited their mom

Jane and Bob chose an adventurous, nomadic life at the cost of not having more than a few thousand dollars in savings. They never thought about getting old, getting sick or having medical expenses.

Yet Jane doesn’t regret their independent lifestyle and her husband’s dreamy, back-to-the-land mentality.

Kelley, Jane’s daughter, said her mom recently told her that’s she’s trying to remember only the good things about her life with Bob.

“That will be stuck in my mind forever,” Kelley said. “I like it.”

The Fallers’ romance with nature, however, hasn’t been embraced by their four living children.

“That’s how she wants to live,” Kelley said recently. “She has something in her that thrives on that.”

All the children have rebelled against their parents’ hippie lifestyle. In subtle ways, they have all alluded to the fact that having Bob as their father wasn’t easy. He was gruff, demanding.

Today all the Faller children are financially conservative, have stable, traditional jobs and live in large houses in the suburbs. They drive nice cars and buy material things.

Kelley, an attorney who no longer practices, proudly has three bathrooms in a big house. It has a generator so she is never without electricity. She said she will never again live like a squatter, as she believes the family did when they homesteaded in Canada and lived in a shack without running water or a toilet and where her mom cooked over an open fire.

The result was something of an estrangement between the children and Bob, and by association, Jane.

Since Bob’s death, three of the children have reconnected, however, jointly visiting their mom in November to help her prepare for winter and sort through Bob’s possessions. Kelley said it’s relieved a lot of family tension.

Before Bob died, one of his grandsons, Bobby, came for a rare visit, to say goodbye and make peace. Afterward, Bob would talk about the visit until his voice gave out. He reiterated the importance of family, even when people don’t agree and view the world differently. Afterward, Bob felt energized, somehow released from his burdens. Perhaps it was that connection he needed, proof that the Faller tenacity lives on.

With that same tenacity, Jane is reaching deep into her adventurous soul and said she intends to stay put on her beloved land. She looks through seed catalogs by the wood stove. Friends are plenty, checking on her, plowing the driveway, helping in any way she needs. This is home.

“I’m staying as long as I can,” she said with her girlish giggle. “We’ll see what happens.”

Jane Faller eats dinner by herself as snow settles outside her home in Republic, Wash., on Tuesday. Her children worry about her making it through the winter, but her friends Steve and Deb Anthes regularly check in on her, and a neighbor plows her driveway. Still, the solitude can be unrelenting. “It’s an empty home,” she said.

Complete Article HERE!

January 14, 2016January 14, 2016

Experiences, Dreams, and Visions: Easing the Patient With Cancer Toward End of Life

By Bette Weinstein Kaplan

Dreams have been the subjects of songs and psychoanalysis, puberty and poetry. There are sweet dreams and there are nightmares … and then there are the dreams that comfort the dying. Although the dreams of hospice patients have not been subjected to a great deal of research, one recent study demonstrates that they can be meaningful and comforting for the person who is dying.

End-of-life experiences (ELEs) occur frequently in people who are near death and can take different forms.¹ End-of-life dreams and visions (ELDVs) are one type of ELE.²These often manifest as visions that occur during a wakeful state, or dreams that the patient remembers after sleeping.

DREAMS AND VISIONS OF DYING PEOPLE

Christopher W. Kerr, MD, PhD, and colleagues at the Center for Hospice and Palliative Care in Cheektowaga, New York, in partnership with James P. Donnelly, PhD, of Canisius College, Buffalo, New York, undertook a study to document ELE phenomena in patients at the facility. As part of the study design, they examined the content and subjective significance of ELDVs, and related their prevalence, content, and significance over time until the patient’s death.¹

The study included 59 patients ranging in age from 34 to 99 years who were in their last weeks of life. The patients were interviewed daily about their dreams and visions while they were in the hospice inpatient unit. They were asked to report on the content, frequency, and comfort level of their ELDVs. If it was possible to continue the interviews after a patient was discharged, the interview was conducted at the patient’s home or at the facility to which the patient was transferred. The researchers met with the patients each day until they died, were unable to communicate, found communication too stressful, or until the patient became delirious.¹

Of the 59 patients in the study, 52 (88.1%) reported having at least 1 dream or vision. Almost half of the dreams or visions (45.3%) occurred while the patient was sleeping, 15.7% occurred while the patient was awake, and 39.1% occurred during both sleep and wakefulness. The patients reported that nearly all ELDV events (99%) seemed or felt real. Most patients reported a single ELDV each day (81.4%); some reports were of 2 (13.2%), 3 (4.1%), or 4 events (1.4%) on other days.¹

RATING THE DREAMS

The patients rated the degree of comfort or distress they associated with their ELDVs on a scale of 1 to 5, with 1 meaning extremely distressing and 5 meaning extremely comforting. The mean comfort rating for all dreams and visions was 3.59, with patients rating 60.3% of ELDVs as comforting or extremely comforting, 18.8% rated as distressing or extremely distressing, and 20.7% rated their dreams as neither comforting nor distressing.¹

The patients felt that their dreams and visions were realistic, whether they occurred during sleep or while awake. They related dreams and visions of past meaningful experiences and reunions with loved ones who had already died, and who reassured and guided them. Others reported feeling as if they were preparing to go somewhere.¹The researchers noted that often patients’ dreams before dying were so intense that the dream continued from sleep to wakefulness, seeming to be reality. However, those patients who had ELDVs died peacefully and calmly.¹

The most common dreams and visions included friends and relatives, either living or deceased. The patients found that dreams and visions that featured the deceased (friends, relatives, and animals/pets) were significantly more comforting than those of the living, of the living and deceased combined, or of other people and experiences. As participants approached death, comforting dreams and visions of the deceased became more prevalent.¹

NOT DELIRIUM

Clinicians should note that ELDVs are not hallucinations, and they are not the result of medications or confusion. These phenomena play an important role. Their content holds great meaning to the patient who nears the end of life. Patients who experience these phenomena are not delirious; they think clearly and are aware of their surroundings. In contrast to patients who are in a state of delirium, ELDVs typically occur in persons who have clear consciousness, heightened acuity, and awareness of their surroundings.

Although the phenomena bring a sense of impending death, they also evoke acceptance and inner peace. These are crucial distinctions, since if a dying patient with ELDVs is considered delirious and is treated as such, the medication may interfere with the comforting experience that ELDVs can bring to the dying process. Not being able to derive that comfort at the very end of life could lead to isolation and unnecessary suffering for the dying patient.

Oncology nurses and other clinicians can play an important role in the dying process by not assuming that the patient experiencing ELDVs is delirious and needs more medication.

“The results of this study suggest that a person’s fear of death often diminishes as a direct result of ELDVs, and what arises is a new insight into mortality. The emotional impact is so frequently positive, comforting, and paradoxically life affirming,” the hospice team explains.¹ The person is dying physically but emotionally and spiritually, their identity remains present as manifested by dreams/visions.

“In this way, ELDVs do not deny death, but in fact, transcend the dying experience, and present a therapeutic opportunity for clinicians to assist patients and their families in the transition from life to death, thereby providing comfort and closure.”¹

REFERENCE

1. Kerr CW, Donnelly JP, Wright ST, et al. End-of-life dreams and visions: a longitudinal study of hospice patients’ experiences. J Palliat Med. 2014;17(3):296-303.

Complete Article HERE!

January 3, 2016January 3, 2016

How Uganda Came To Earn High Marks For Quality Of Death

By Rae Ellen Bichell

african-palliative-care-association — A elderly patient with chronic debilitating back pain receives a bottle of liquid morphine during a home visit from a representative of Hospice Africa Uganda.

Food coloring, water, a preservative and a pound of morphine powder. These are the ingredients in Dr. Anne Merriman’s recipe for liquid morphine.

“It’s easier than making a cake,” says Merriman, a British palliative care specialist who founded Hospice Africa in Uganda in 1993 and helped design the formula that hospice workers in Uganda have used for 22 years to craft liquid morphine. The lightest dose, dyed green to indicate the strength and to make sure people don’t confuse it with water, costs about $2 per bottle to make. Stronger doses are dyed pink and blue. A 16-ounce bottle is about a week’s supply for most patients.

Those cheap bottles of green, pink and blue liquid morphine have changed the way people die in Uganda — and are a key reason why Uganda has the best quality of death among low-income countries, according to global Quality of Death Index published by the Economist Intelligence Unit.

Back in the 1990s, two of the biggest barriers to good death in Uganda were simple: not enough doctors and not enough morphine. Largely through Merriman’s drive, Hospice Africa Uganda developed professional education in palliative care that would spread the responsibility to nurses, rather than relying on doctors. They helped make it mandatory for medical students in Uganda to study pain management – before Germany did. And Hospice Africa Uganda made liquid morphine.

“I had been one of the doctors who had said to people, ‘Sorry, there is no more we can do. You have to go home,'” says Merriman, of the time she spent working with cancer patients in Singapore starting in the 1960s. There, she says, “I found that patients with cancer were getting every treatment possible with chemotherapy, and then when it didn’t work they were sent home and they were dying in agony.”

So she sat down with a couple pharmacists from the National University Hospital and came up with a formula to make a liquid from pure morphine powder.

An HIV-positive woman, living alone in a one-room house, speaks with a visiting doctor.

Merriman would eventually be invited to Kenya to set up a hospice care program in Nairobi before founding her own organization in 1993, based in Uganda. At that time, palliative care in Africa only existed in Zimbabwe and South Africa, and the services, she says, were “started out by whites for whites.” Medication was prohibitively expensive for most patients. “The strongest they had there was codeine — if you had money. But if you didn’t have money, you only had aspirin and sometimes nothing at all,” says Merriman.

Today, the organization’s three hospice centers serve some 2,100 outpatients. “It’s not always the pain that’s their greatest worry,” she says. “It’s often ‘What’s going to happen to my children when I die?’ It may be spiritual problems, it may be cultural — things they have to carry out before they die. We try to help with all those kinds of things.”

Relieving pain is step one — and it has many benefits. Patients eat better, sleep better and live higher quality lives, even in their last days, says Merriman.

Cost was one obstacle to pain management that Merriman had to address. Another, which persists in many countries, was a deep-rooted fear of opioid painkillers.

Though morphine is considered the gold standard in palliative care for pain management, in many parts of the world fear of opioid addiction and misuse is so rampant it has a name: opiophobia.

Merriman ran up against opiophobia in Singapore and Uganda, where she says, people thought she was providing morphine so that patients could kill themselves. “And morphine can kill,” she says. But with the right regulations in place, and the right explanation to the patient and their relatives, she says, “it’s very safe.”

For over a decade, the Ugandan government has provided morphine free to the patients of prescribers who are members of a special registry, all trained through Hospice Africa Uganda.

“You’ve got to be careful, everything has to be signed for and we have to follow the regulations,” she says. “But for the last three years, we’ve been making morphine for the whole country.”

Merriman says of the 24,000 patients in total that they have prescribed oral morphine to, “we’ve had no addiction, no diversions. And the patients keep the bottle at home.”

In Uganda, she had to work hard to surmount the fear of opioids. For example, Hospice Africa Uganda worked with narcotics police, teaching them what morphine is and that it’s a legal medication.

“They need to understand that patients can take morphine and that they are not addicted, that it is handed to patients after careful assessment, and that it is a safe medication,” says Dr. Eddie Mwebesa, clinical director at Hospice Africa Uganda. Without police cooperation, he says, “there will be a lot of trouble with patients having their morphine in the home” and in transporting the drug between hospices or patient homes.

Clinicians prescribe the morphine and instruct patients to sip a dose from a marked cup. For adults, it’s usually about a teaspoon every 4 hours. Merriman says hospice workers frequently have to warn people about morphine — not because of the risk of addiction but to explain that it will not wipe out their illness. She says they feel so good after it, they often feel normal again. “They think we’ve cured them,” she says.

Even with the innovations in Uganda, there are still challenges. The organization estimates that only 10 percent of Ugandan patients in need of palliative care can access it.

“The biggest challenge we have right now is the sheer number of patients who need palliative care,” says Mwebesa — he puts the number at 250,000 to 300,000. But there is about one doctor for every 20,000 Ugandans, he says.

A palliative care physician visits an HIV-positive patient who lost her family to the AIDS epidemic. She’s resting on a mat outside her home.

Mwebesa says palliative care can cost about $25 each week for one patient. “It doesn’t sound like a lot,” he says, “But actually most people can’t afford it.” Only 2 percent of Ugandans have health insurance, so many families have to pay out-of-pocket to care for sick relatives.

Even though Uganda is far from perfect, it remains in many respects a model country for its neighbors. “We had the minister of Swaziland visit Uganda to see how Uganda reconstitutes oral morphine and then when we went back, they started doing the same,” says Dr. Emmanuel Luyirika, executive director of the African Palliative Care Association. He says the same happened with Rwanda and Malawi.

Merriman is now turning her attention to French-speaking countries in Africa. She says some countries in the region remind her a lot of Uganda back in the ’90s. “They’ve got a fear of morphine. Doctors don’t want to prescribe it because they think if they prescribe it, they’ll be accused of being addicts themselves,” she says. World Bank data shows the region has the world’s highest maternal mortality and lowest national health budgets. And people there largely pay for health care out-of-pocket.

“If you haven’t got money,” says Merriman, “you can’t even get an aspirin.” At age 80, she’s still determined to see that the dying don’t have to face such dilemmas when they seek relief from pain.

Complete Article HERE!

December 19, 2015December 19, 2015

Prison hospice program blesses both the living and dying

BY PATRICIA GANNON

Hospice of Acadiana, whose volunteers include, from left, Martie Beard, Lyle Ann Hernandez, Ann Wallace, Lewis Bernard and Charlene Miller, annually visit state prisons to support inmates administering end-of-life caregiving to fellow prisoners.

According to Luke 23:42, a thief crucified alongside Jesus said to him, “Remember me when you come into your kingdom” to which Jesus replied, “Amen, I say to you today you will be with me in Paradise.”

Hospice of Acadiana takes the verse to heart and annually sends volunteers to support inmates administering end-of-life caregiving to fellow prisoners.

Volunteers bring bags of supplies to their prison hospice counterparts, inmates taking on death watches in addition to other prison duties.

The bags are handmade by a Lafayette woman and contain a blanket, candy, snacks, socks and toiletries, all supplied by the volunteers themselves or by donation. The blanket doubles as a prayer shawl and comes with the blessing, “Know that even in the middle of the darkest night you are not alone.”

“We do continuing education, but we leave with more than we bring,” said Ann Wallace, Hospice of Acadiana volunteer director.

The volunteers mostly talk about hope.

“We try to talk about topics to help them be better volunteers,” she said. “It’s a very special program and they (inmates) have to apply. It’s an esteemed position.”

While Louisiana State Penitentiary at Angola has the first and oldest prison hospice program in the state, the volunteer group also serves Dixon Correctional Institute in Jackson and Elayn Hunt Correctional Center and Louisiana Correctional Institute for Women, both in St. Gabriel.

There also is a hospice program at the B.B. “Sixty” Rayburn Correctional Center in Washington Parish, near Angie.

Started in 1997 by directive of Warden Burl Cain, who recently announced his retirement, Angola trained 40 inmates in issues that affect end of life and how to take care of fellow prisoners.

Hospice of Acadiana mentors from the outside.

“We talk about the four most important things,” said Lewis Bernard, a volunteer for 15 years. “I’m sorry, I love you, thank you, and I forgive you. We start with that.”

Volunteers from Hospice of Acadiana assist inmates in practicing basic care, helping the terminally ill to die comfortably and making sure inmates don’t die alone. They offer advice in all the aspects of social, emotional and physical care, including bereavement, spirituality and reconciliation with family.

Anywhere from 10 to 20 volunteers are mustered for the yearly visit in December.

“We put an email out that we’re going to the prison and ask who wants to come,” said Wallace.

“No one really knows until you experience it,” she said. “My Bible study group didn’t even understand.”

Whether they’re serving 10 to 20 years or life, the reality is terminally ill prisoners are not transferred out to die, and if family doesn’t claim them, they are buried on site in coffins made by prisoners.

“I remember one inmate saying, ‘I know I’m like a broken car, they’re going to fix me and I’ll run better,” said Bernard. “At St. Gabriel and Dixon, there’s hope.”

He said that’s not the case at Angola. “They (prison hospice volunteers) see their work as more of a ministry,” said Bernard, “You can’t be a wimp and do that work. They become the nurses. At the moment they die, nothing’s left but their relationship with God. They’ve been stripped of everything else.”

“It’s the way all hospice should work,” said Jamie Boudreaux, executive director of the Louisiana and Mississippi Palliative Care Association. “They are caring for their fellow inmates in a most remarkable way. For 24 hours they don’t leave their side. It’s one of the most incredible programs in the country. We have correctional officers who come to Angola to see it.”

Prisons in Louisiana have a particularly bloody aspect to their history, said Boudreaux.

“Angola is still a maximum security facility,” he said, “but there is a new level of cooperation between inmates and guards.”

According to Boudreaux, prisoners themselves notice a difference, a newfound dignity.

“It truly is the most transformative story I have seen in my lifetime,” he said.

The Angola hospice program is documented in “Serving Life,” a film narrated and produced by Academy Award-winner Forest Whitaker.

The film takes viewers inside Angola, where the average sentence is more than 90 years. With prison sentences so long, 85 percent of the inmates will never live on the outside again.

Charlene Miller, a 23-year volunteer, explained that before hospice, prisoners died in their cells or the infirmary.

“It’s something to see those big, burly men soothe the dying and pray with them,” she said. “It makes me feel good. I love it. It’s a privilege to be in on the last moments of their lives.”

Complete Article HERE!

December 4, 2015

What working in a nursing home taught me about life, death, and America’s cultural values

by Valery Hazanov

The first thing I noticed when I began working in a nursing home was the smell. It’s everywhere. A mix of detergent and hospital smell and, well, people in nursing homes wear diapers. It’s one of those smells that takes over everything — if you’re not used to it, it’s hard to think about anything else.

Being in the nursing home is tough. People weep and smell and drool. Sometimes you can go on the floor and hear a woman in her 90s scream, “I want Mommy.”

But it’s also ordinary — just people living together: gossiping, daydreaming, reading, watching TV, scratching their back when it itches.

People at the nursing home like to watch TV. It’s always on. How strange, then, that there are no old people on TV.

For the past eight months I have been working as a psychotherapist with dying patients in nursing homes in New York City. It’s an unusual job for a psychotherapist — and the first one I took after graduating with a PhD in clinical psychology. My colleagues were surprised. “Why not a hospital? Or an outpatient clinic? Do the patients even have a psychiatric diagnosis?”

The short answer is that I wanted to see what death looks and feels like — to learn from it. I hope that I can also help someone feel a little less lonely, a little more (is there a measure to it?) reconciled.

I haven’t gotten used to the smell yet. But I have been thinking a lot about the nursing home and the people who live and die there, and wanted to share what I learned.

1) At the end, only the important things remain

“This is all I have left,” a patient recently told me, pointing to a photograph of himself and his wife.

It made me notice the things people bring to the nursing home. The rooms are usually small, so what people bring is important to them. If they have a family, there will be photos of them (most popular are the photos of grandchildren). There might also be a few cherished books, a get-well-soon card, a painting by a grandchild or a nephew, some clothes, maybe flowers. And that’s about it. The world shrinks in the nursing home, and only a few things remain: things that feel important — like they’re worth fighting for, while we still can.

2) Having a routine is key to happiness

‘m a little lazy. My ideal vacation is doing nothing, maybe on a deserted beach somewhere. I look in terror upon very scheduled, very planned people. Yet I have been noticing that doing nothing rarely fills me with joy, while doing something sometimes does. Hence, the conflict: Should I push myself to do things, or should I go with the flow and do things only when I feel like doing them? Being in a nursing home changed my perspective somewhat: I noticed that all the patients who do well follow a routine. Their routines are different but always involve some structure and internal discipline.

I am working with a 94-year-old woman. She wakes up at 6:30 am every day, makes her bed, goes for a stroll with a walker, eats breakfast, exercises in the “rehabilitation room,” reads, eats lunch, naps, goes for another walk, drinks tea with a friend, eats dinner, and goes to bed. She has a well-defined routine. She pushes herself to do things, some of which are very difficult for her, without asking herself why it is important to do them. And, I think, this is what keeps her alive — her movement, her pushing, is her life.

Observing her, I have been coming to the conclusion that it might be true for all of us. And I often think about her when I am debating whether to go for a run or not, whether to write for a couple more hours or not, whether to finally get up from the couch and clean my apartment or not — she would do it, I know, so maybe I should, too.

3) Old people have the same range of emotions as everyone else

“You are so handsome. Are you married?” is something I hear only in extended-family gatherings and in nursing homes. People flirt with me there all the time. This has nothing to do with their age or health — but rather with whether they are shy. When we see someone who is in his 90s and is all bent and wrinkled and sits in a wheelchair, we might think he doesn’t feel anything except physical pain — especially not any sexual urges. That’s not true.

As long as people live, they feel everything. They feel lust and regret and sadness and joy. And denying that, because of our own discomfort, is one of the worst things we can do to old people.

Patients in nursing home gossip (“Did you know that this nurse is married to the social worker?”), flirt, make jokes, cry, feel helpless, complain of boredom. “What does someone in her 80s talk about?” a colleague asked me. “About the same things,” I replied, “only with more urgency.”

Some people don’t get that, and talk to old people as if they were children. “How are we today, Mr. Goldstein?” I heard someone ask in a high-pitched voice of a former history professor in his 80s, and then without waiting for a response added, “Did we poopie this morning?” Yes, we did poopie this morning. But we also remembered a funny story from last night and thought about death and about our grandchildren and about whether we could sleep with you because your neck looks nice.

4) Old people are invisible in American culture

People at the nursing home like to watch TV. It’s always on. How strange, then, that there are no old people on TV.

Here’s a picture I see every day: It’s the middle of the day and there is a cooking show or a talk show on, and the host is in her 50s, let’s say, but obviously looks much younger, and her guest is in his 30s or 50s and also looks younger, and they talk in this hyper-enthusiastic voice about how “great!” their dish or their new movie is, or how “sad!” the story they just heard was. Watching them is a room full of pensive people in their 80s and 90s who are not quite sure what all the fuss is about. They don’t see themselves there. They don’t belong there.

I live in Brooklyn, and I rarely see old people around. I rarely see them in Manhattan, either. When I entered the nursing home for the first time I remember thinking that it feels like a prison or a psychiatric institution: full of people who are outside of society, rarely seen on the street. In other cultures, old people are esteemed and valued, and you see them around. In this manic, death-denying culture we live in, there seems to be little place for a melancholic outlook from someone that doesn’t look “young!” and “great!” but might know something about life that we don’t.

There isn’t one Big Truth about life that the patients in the nursing home told me that I can report back; it’s a certain perspective, a combination of all the small things. Things like this, which a patient in her 80s told me while we were looking outside: “Valery, one day you will be my age, God willing, and you will sit here, where I sit now, and you will look out of the window, as I do now. And you want to do that without regret and envy; you want to just look out at the world outside and be okay with not being a part of it anymore.”

5) The only distraction from pain is spiritual

Some people in the nursing home talk about their physical pain all the time; others don’t. They talk about other things instead, and it’s rarely a sign of whether they are in pain or not.

Here’s my theory: If for most of your life you are concerned with the mundane (which, think about it, always involves personal comfort) then when you get old and feel a lot of pain, that’s going to be the only thing you’re going to think about. It’s like a muscle — you developed the mundane muscle and not the other one.

The saddest people I see in the nursing home are childless

And you can’t start developing the spiritual muscle when you’re old. If you didn’t reallycare about anything outside of yourself (like books, or sports, or your brother, or what is a moral life), you’re not going to start when you’re old and in terrible pain. Your terrible pain will be the only thing on your mind.

But if you have developed the spiritual muscle — not me, not my immediate comfort — you’ll be fine; it will work. I have a couple of patients in their 90s who really care about baseball — they worried whether the Mets were going to make the playoffs this year, so they rarely talked about anything else; or a patient who is concerned about the future of the Jewish diaspora and talks about it most of our sessions; or a patient who was worried that not going to a Thanksgiving dinner because of her anxieties about her “inappropriately old” appearance was actually a selfish act that was not fair to her sister. Concerns like these make physical pain more bearable, maybe because they make it less important.

6) If you don’t have kids, getting old is tough

The decision to have kids is personal, and consists of so many factors: financial, medical, moral, and so on. There are no rights or wrongs here, obviously. But when we are really old and drooling and wearing a diaper, and it’s physically unpleasant to look at our wounds or to smell us, the only people who might be there consistently, when we need them, are going to be either paid to do so (which is okay but not ideal) or our children. A dedicated nephew might come from time to time. An old friend will visit.

But chances are that our siblings will be very old by then, and our parents will be dead, which leaves only children to be there when we need it. Think about it when you are considering whether to have children. The saddest people I see in the nursing home are childless.

7) Think about how you want to die

José Arcadio Buendía in One Hundred Years of Solitude dies under a tree in his own backyard. That’s a pretty great death.

People die in different ways in the nursing home. Some with regrets; others in peace. Some cling to the last drops of life; others give way. Some planned their deaths and prepared for them — making their deaths meaningful, not random. A woman in her 90s recently told me, “Trees die standing tall.” This is how she wants to go: standing, not crawling.

I think of death as a tour guide to my life — “Look here; pay attention to this!” the guide tells me. Maybe not the most cheerful one, slightly overweight and irritated, but certainly one who knows a lot and can point to the important things while avoiding the popular, touristy stuff. He can tell me that if I want to die under a tree in my backyard, for example, it might make sense to live in a house with a backyard and a tree. To you, he will say that if you don’t want any extra procedures done to you at the end, it might make sense to talk about it with the people who will eventually make this decision. That if you want to die while hang-gliding over an ocean, then, who knows, maybe that’s also possible.

I think of death as a tour guide to my life — “Look here; pay attention to this!”

My father, who has spent the past 30 years working in an ICU as a cardiologist and has seen many deaths, once told me that if he had to choose, he would choose dying well over living well — the misery of a terrible, regretful death feels worse to him than a misery of a terrible life, but a peaceful death feels like the ultimate reward. I think I am beginning to see his point.

I am 33. Sometimes it feels like a lot — close to the end; sometimes, it doesn’t. Depends on the day, I guess. And like all of us, including the people in the nursing home, I am figuring things out, trying to do my best with the time I have. To not waste it.

Recently, I had a session with a woman in her 90s who has not been feeling well.

“It’s going in a very clear direction,” she told me. “Toward the end.”

“It’s true for all of us,” I replied.

“No, sweetheart. There is a big difference: You have much more time.”

Complete Article HERE!

December 1, 2015December 1, 2015

How to get what we need at the end of life

By Diane E. Meier

MY PATIENT – I’ll call her Mrs. Stein — had been crystal clear for the 12 years I took care of her. “I never want to end up in a nursing home — make sure you help me stay in my own home. I want to die in my own bed!”

A few years later, she had a stroke and her only option was a nursing home. She didn’t have enough money to pay out of pocket for 24-hour personal care at home, and neither Medicare nor Medicaid would cover it. Angry and depressed, she left for a neighborhood nursing home, where she lived another five years. I knew her wishes, but our society provided no means of honoring them.

In order to know what our patients prize most, we need to ask them, and then we must be able to act on what we learn. This requires three key elements.

First, we have to help clinicians and their patients get off the 10-minute office visit treadmill, by compensating providers for conducting meaningful conversations with patients about their priorities and treatment options. Recent government effort to provide payments to clinicians for having conversations about what matters most to our patients if they can no longer decide or care for themselves (referred to as advance care planning) is an important step in wrestling our health care system back to one that places patient needs and priorities first.

Second, these are not easy conversations to have. Clinicians are not born knowing how to have them, and just like our patients, we avoid discussions about uncomfortable topics. Meanwhile, talking about future medical priorities is not taught in medical schools. Until this kind of training is routine and universal, it does not matter whether or how much we pay for these conversations; clinicians will continue to avoid them. The good news is that a bill in Congress, the Palliative Care and Hospice Education and Training Act, addresses these issues.

But third, it is not enough to know what patients want. We must also be able to act on those wishes by covering the care and support people need in order to remain as independent as possible in their own homes. While the Care Choices Act represents some progress, as it allows people to get hospice care at home focused on comfort and quality of life at the same time as continued disease treatment, it does not cover the personal care and support. But there is hope here, too — the Affordable Care Act creates new incentives for our health systems to help us avoid unnecessary, risky, and costly hospitalization, incentives that will drive greater willingness on the part of both public and private insurers to meet people’s needs in their own homes. That’s a lot cheaper than having people end up in hospitals and nursing homes. It is also what most of us — including Mrs. Stein — would want.

Dr. Diane E. Meier is a palliative medicine physician and director of the Center To Advance Palliative Care at the Icahn School of Medicine at Mount Sinai in New York City.

Complete Article HERE!

November 29, 2015November 29, 2015

Circle of Friends buys a residence for those at the end of life

“People close to dying often speak in metaphor and say they are going ‘home.’ Home is no longer a place, but a passage. Death then, becomes the vehicle in which we make safe passage.” These lines come from a dissertation entitled “Dreaming Out Loud: Initiating Plans for a Community-based Home for the Dying,” written by oncology social worker Elise Lark, who has been working to make this dream a reality in the Mid-Hudson Valley.

Lark is the founder of Circle of Friends for the Dying (CFD), a non-profit group that has purchased a Kingston house they plan to convert into a residence available to people needing compassionate care at the end of life. Instead of spending their final weeks or days in the isolating atmosphere of a hospital, the dying will be able to make their transition in the comfort of a home, attended by family, friends, and volunteer caregivers.

“In order to have a good death,” said CFD board member Gai Galitzine, “you need to be living while you’re dying.”

A century ago, observed Lark, who works at the Oncology Support Program at HealthAlliance in Kingston, death was part of everyday life. “People died in community. It was a social, not a medical event. In the 1950s, people started to die more often in the hospital, which is considered the best setting — a sterile environment, safe, convenient to doctors. But we believe people should die in a non-institutional setting, with a sense of everyday life, where they can enjoy the rituals of having meals together, sitting with a group of people, participating in life.”

The hospice movement has made strides in this direction, often bringing patients home from the hospital and providing support and education that allow the family to ease the dying over the divide. But a home death is not always possible. Often the patient needs round-the-clock care, which family members may not be able to provide if they live out-of-state, have to work, or are raising children. Some patients live alone. If home care isn’t an option, the only alternative in Ulster and Dutchess Counties is a nursing home.

The Home for the Dying in Kingston will be run by volunteers who will provide skilled care and companionship for people nearing death. If family members are available, they can spend time with their dying relative in a warm, relaxed atmosphere — at no charge.

Hospice agencies in some areas have established residences or hospital-based hospice units for the dying, but a study done in the Mid-Hudson Valley concluded that a structure dedicated to hospice was not feasible in our area. When Lark was working on her doctorate at Antioch University, she studied options for community-based care. She visited the closest hospice residence to her Kingston job, an eight-bed unit in Newburgh, but found it didn’t fit her vision for a modest, homely setting. Then she discovered the Home for the Dying model, which started with a Home in Rochester in 1984, organized by lay Carmelites. There are now 25 of these Homes in New York State. It turns out that a facility with more than two beds is considered an institution, subject to rules and regulations. The Home in Kingston will stick to two beds, so they’ll be free to provide the most appropriate care.

Community-based end-of-life care is a boon to volunteers as well as to the dying and their families. “I had deaths in my family where I wasn’t able to be there, and it stayed with me,” said Galitzine. “I had a good experience with my mother where I was able to get to her in time even though she’d had a stroke. The reassurance she felt when I was there was one of the most beautiful things. I could see it in her eyes, although she couldn’t speak. I love the idea of being able to help other people in that situation.”

“Death is not an emergency,” Lark pointed out. “It happens every day. It’s as normal as birth. Some people won’t like this idea, but I see death as a sacred rite of passage. To be present to that is an amazing experience, a gift.”

One study shows that 80 to 90 percent of Americans say they prefer to die at home — but only 25 percent actually get to do it. Hospice is offered when patients are told they have six months left to live, but most people only take advantage of hospice services for the last few days of life, when life support measures are abandoned, and palliative care takes over, doing everything possible to relieve pain and make the patient comfortable. Hospice shifts the focus from preserving life at all costs to enhancing quality of life. But the reluctance of doctors and family members to address the prospect of death is an impediment to getting end-of-life care in a timely manner.

“Medical culture operates on a culture of hope,” said Lark. “You can’t hold hope in one hand and the fact that people are nearing the end of life in the other hand. Doctors are not trained to have end-of-life discussions. People get on hospice late, so they don’t get to reap the benefits of hospice, which provides support to the caregiver. Unless we can have these conversations with our loved ones, we’ll keep prolonging the dying process.”

CFD has joined the international Death Café movement, organizing monthly informal gatherings in which people sit in small groups to talk about the subject most of us tend to avoid — how our lives will end. Death Cafés in the Woodstock area are run by psychotherapist Laurie Schwartz and social worker Barbara Sarah, founder of the Oncology Support Program at HealthAlliance. For people who are fearing death, grieving for relatives, or wondering about the mystery of end-of-life passage, the conversations provide a forum for sharing often unspoken thoughts and worries. The underlying purpose, said Galitzine, “is to create a culture where death is part of everyday life, to bring the act of dying back into people’s lives, so they won’t fear it and will talk about it.”

The Home for the Dying in Kingston will be available to people with three months or less to live. In addition to two bedrooms for patients, equipped with hospital beds for comfort, there will be a wing with quarters for family members who wish to stay overnight. Meals can be prepared in a full eat-in kitchen. A wraparound deck and garden will be accessible by wheelchair from the client bedrooms, which will have sliding doors to the outside.

Presently CFD volunteers are cleaning and refurbishing the house to rent it out for a year while the organization raises money for renovations. A capital campaign will begin in the spring, with plans to have the home in operation in 2017.

“There will be no white uniforms,” said Lark. “No one is confined to their room. They can use the whole house as if it were their own house. A good place to die is also a good place to live.”

Complete Article HERE!