Category Archives: Elders

‘It’s not worth me having a long-life lightbulb’

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Rare insight into attitudes to death among the very old

Elderly_Woman_,_B&W_image_by_Chalmers_Butterfield

UNIVERSITY OF CAMBRIDGE

Death is a part of life for people over 95 years old, who mainly live day-to-day, concludes a rare study of attitudes to death and dying amongst the very old. The research, from the University of Cambridge and published today in the journal PLOS ONE, finds that this group is willing to discuss dying and their end-of-life care, but is seldom asked.

Improvements in our environment and lifestyles, as well as significant medical and healthcare advances, mean that more and more people are living to a very old age. According to a report published last year by the Office of National Statistics, the number of people aged 90 or more at the time of their death has tripled in the past three decades in the UK.

“Despite the dramatic rise in the number of people living into very old age, there is far too little discussion about what the ‘oldest old’ feel about the end of their lives,” says Dr Jane Fleming from the Department of Public Health and Primary Care at the University of Cambridge, who led the study. “We know very little, too, about the difficult decisions concerning their end of life care.”

very senior2In a study part-funded by the National Institute for Health Research, researchers interviewed 33 people over 95 years old from the Cambridge City over-75s Cohort and for 30 of these and for 9 people too frail to be interviewed in person, a ‘proxy’ – a relative or member of care-home staff, for example – about attitudes towards death, dying and end-of-life care. The responses are at times poignant and occasionally humorous, but provide a fascinating perspective on the views of an often overlooked minority.

The age of the older people was so great that most of their contemporaries had died, so death was a regular feature of life and many spoke of living on borrowed time. “As people get older, as their friends die, there’s an element of ticking them off,” said one proxy.

Many of the older people referred to “taking each day as it comes”, expressing thankfulness for where they were in life and content, at this stage, to take life one day at a time, not worrying too much about tomorrow. There was a sense of life ticking along until something drastic happened. “It is only day-from-day when you get to ninety-seven,” said one.

Although one interviewee described only being “three-quarters of the way” through their life, others knew and accepted that they were going to die soon. One son-in-law describes his elderly mother-in-law giving a long-life light bulb to her granddaughter, saying: “Something for you, it’s not worth me having”. Most of the interviewees felt ready to die. “I’m ready to go,” said one woman. “I just say I’m the lady-in-waiting, waiting to go.” Some felt they were a nuisance to others, while others were more desperate in their desire to reach the end, suggesting they had simply lived too long. “Please don’t let me live ’til I’m a hundred,” one woman said to her proxy.

Several proxies discussed conversations that they had had about euthanasia. A son described a vivid memory of accompanying his mother to visit one of her friends who had dementia: “She said ‘Gordon, if I ever get like that, for goodness sake put a…’, it was her words, not mine, ‘put a pillow over my head, will you?'”

Most were not afraid of dying, either reporting that it did not worry them or their proxies saying they had not expressed any worries or fears about it. For some this absence of fear was rooted in positive experiences of others’ dying: One interviewee said of her parents: “They were alive, then they were dead, but it all went off as usual. Nothing really dramatic or anything. Why should it be any different for me?”

Proxies reported that death was rarely talked about: “That generation, they didn’t actually discuss death much, I don’t think,” said one. A few, however, talked openly about death and the future – one proxy described a conversation: “She said, ‘I should think I’ll snuff it soon, don’t you?’ I said, ‘I don’t know, you tell me’ and she just laughs. I mean, she… You can laugh with her about it, you know.”

Discussion of funeral preferences was more common than talking about death, although the extent of discussions varied. Some had made their preferences clear and had made plans themselves and paid for their funerals in advance. Others noted the difficulties of discussing funerals – one proxy described a conversation with her mother: “I said, ‘Do you think you would want to be buried or cremated?’ And she said, ‘Well, cremated, I think.’ I find it very difficult talking to her. I don’t feel that I can. You see, I say to my children ‘Oh, that’s a nice song on the radio. Oh, perhaps I’ll have that at my funeral’. And you couldn’t to my mum.”

The manner of death was of more concern than its imminence. Although some said they had not really thought about dying, many explicitly expressed the wish to die peacefully, pain free and preferably while asleep – to “just slip away quietly.”

“I’d be quite happy if I went suddenly like that,” said one interviewee, snapping their fingers.

very senior

When asked whether, if they had a life-threatening illness, they would want to receive treatment that would save their life or prefer treatment that would just make them comfortable, few people chose life-saving treatment. “Make me comfortable” was a far more typical response and proxy informants tended to echo the older people’s dominant preference for comfort rather than life-saving treatment.

Few people wanted to be admitted to hospital in the event of such an illness, though rarely gave reasons. One care home manager explained about her resident: “If she went to [hospital] quite poorly, I think she would be full of anxiety and I think it would exacerbate any illness she had. I think she would find it alarming actually.”

Family members were often aware of preferences. One niece said of her aunt: “She’s dead against going. She doesn’t like hospitals. She doesn’t want to go.” Her aunt, she said just wanted to go to bed and go to sleep without going into hospital – “I think that’s her ideal, just dying in her own home.”

A handful of interviewees viewed well-intended medical interventions as prolonging life unnecessarily, an issue usually, but not exclusively, raised by proxy informants. One 98-year-old couldn’t “see any point in keeping people alive”. One proxy described being annoyed when the doctor gave her relative a pneumonia injection: “She had no quality of life… was ready to go … [but] there was no consultation with us at all about it.”

“Death is clearly a part of life for people who have lived to such an old age,” says Dr Fleming, “so the older people we interviewed were usually willing to discuss dying, a topic often avoided.” However, most had only had discussions regarding end-of-life preferences with health care professionals, rarely with family members. Nonetheless proxies tended to feel they knew their relative’s preferences, though the study found in a couple of instances relatives’ guesses were wrong. A care home manager commented that it was not necessarily with older people themselves that professionals broached the topic: “Historically what happens in hospitals is they tend to… if it’s not asked beforehand they go straight to the relatives. They won’t broach it with the individual, which is actually […] against the Data Protection Act, and it’s nobody else’s business. But it is how the culture of hospitals works unfortunately.”

However, the same care home manager pointed to the practical difficulties of having conversations about end-of-life care preferences: “I’ve not had long discussions, because of [her] hearing problem. It’s very difficult to write them down on paper. And she’s got to shout the answer back at you and you’ve got to re-clarify it.”

“In our previous research we found the majority of people who die in their 90s or 100s are dependent on others because of very high levels of disability and cognitive impairment by the last year of life,” explains Dr Fleming. “Over recent decades most people dying in very old age have moved into care in their final year or died in hospital. To plan services to best support rising numbers of people dying at increasingly older ages we need to understand their priorities as they near the end of life.”

“Now so many more people have reached a great age before they die, it’s important we know about their views and their concerns, particularly in relation to end-of-life care,” says Dr Morag Farquhar, the study’s other lead author. “These are difficult conversations to have and no one wants to have to face their own death or that of a loved one. But having these conversations before it is too late can help ensure that an individual’s wishes, rather than going unspoken, can be heard.”

Complete Article HERE!

“Hospitals are not a good place to die”

End-of-life doula Anna Lyons on why we need to rethink our attitudes to death

By

holding hands

I’ve been with the dying many times, both in a personal capacity and as a health care professional. As an end-of-life doula my work is centred around supporting people and their families at end of life. My experiences have led me to agree wholeheartedly with the BMA in its recent report: hospitals are not the best place to die.

An overwhelming majority of us want to die at home, yet statistics show the reality is that 54% of us will die in hospital. But in my opinion, hospices are for the dying. Home is for the dying. Hospitals are not. The raison d’etre of end of life care is to help people experience a ‘good death’. We will remember how someone we love dies forever. The impact of a bad death is far-reaching. Candy Chang, creator of the ‘Before I Die‘ wall, a global art project that invites people to reflect on their lives and share their personal aspirations on a public wall, describes the fallout as creating ‘circles of mayhem’ for generations.

What is a good death?

Every person will have a different idea about what would constitute a good death for themselves or their family. Much of the debate over end-of-life care comes down to two questions:

  1. Is a good death one where the medical team did everything to save a life?
  2. Is this still true if there is little chance or no of a happy outcome?

Culturally, we have always seen a good death as one we have ‘fought’ against. It may be time to consider otherwise. Many treatments are aggressive and futile, robbing the last remaining quality of life a patient has.

Perhaps a good death is the accepted one. One where the dying person is in control, can be at home, can have their pain and symptoms managed. End of life care must be entirely individualised and person-centred, only then can we begin to offer the excellent end of life care that everyone deserves.

when-hospitals-go-wrong

The refusal of a medical team to end active treatment to the detriment of the patient was exemplified in the death of a very close friend of mine. They threw everything they had at giving him longer than his twenty-something years. They didn’t give up ‘actively’ treating him until the end. He died clinging to the belief that he was going to live. That last precious year of his life was a tragic mess of chemotherapy, life-prolonging operations and colourless hospital wards. The treatment had destroyed the very essence of who he was, long before his heart played out its final beats.

I believe if we discussed end of life issues regularly, we wouldn’t find them so tricky to broach. Issues about death and dying should be taught in schools as part of the PSHE syllabus from primary and onwards. During Year 13 tutor time when we teach young adults to fill in job application forms, we should also be filling in advance directives with them.

Issues with control at the end

In a study by the Economist Intelligence Unit, the UK was crowned the best in the world for provision of end-of-life care. The author of the report, however, said that there is room for improvement, especially in symptom control and communication. Could this improvement be guided not by government policy or hospital administration, but by changing the way we look at death?

The recent BMA report concluded that some doctors continue to treat the dying when active treatment is no longer of any benefit. One reason it suggested was because of pressure from the patient and their loved ones. This is understandable – it is often too difficult to let go of the ones we love. The report also stated it is because if doctors acknowledge there’s nothing more that can be done, that they’re admitting defeat.

chemotherapy

I knew a woman worked with the dying so when she was dying, although she knew there was nothing that could be done, she didn’t want to die. She wasn’t ready: she had a life to lead, a world to see and children to watch grow and guide. She was looked after by the same medical team she had worked alongside for many years. They couldn’t let her die either. If they let her die, they would have failed one of their own. They had to try, even though they knew it was futile. They couldn’t give up, even though they knew the treatment she would most likely shorten her life, not extend it. Her original prognosis with palliative care had given her up to a year. She died two weeks into aggressive treatment, four weeks after her initial diagnosis.

We should not see the death of a dying patient as a failure. Death is not the loss of a battle. Death is a natural part of life. If we could see it that way, we might be able to approach it differently. Our goal should be helping someone live as good a life as possible right up until the very end. No one will ever experience a “good death” if our focus is active treatment at all costs.

senior woman

The report set out that treatment at end-of-life should be ‘appropriate and proportionate’. Dying with care, deference and dignity, and on our own terms is the very least we should be able to offer. A lady I worked with lived an incredibly full life: alone and happy. She went dancing and played snooker. She cooked everything from scratch everyday. Her breathlessness became untenable and she finally went to the doctor. She had cancer, which was slow to progress even though she chose a palliative care pathway. She accepted her life-limiting prognosis with the wisdom of one who knew herself well and contemplated mortality more often than many. She died in a hospice, surrounded by her family. Hers was a peaceful death. Peaceful and on her own terms.

One aspect of the report that I feel most strongly about is that doctors should be receiving training and CPD on communication and how best to have difficult conversations. One junior doctor who was interviewed for the report said: “I found it very difficult to talk to patients about dying, prior to working in a hospice, because…as a junior doctor we’re not taught very much…”

A shift in thinking

We all have to take responsibility for communication and the decisions we make. It’s terribly difficult when we’re unwell and vulnerable to hear these truths. If we’ve never considered end-of-life until our own life’s end it’s no wonder we find it so hard. If we discussed these issues regularly we wouldn’t find them so hard. We need to break down the ingrained cultural barriers that prevent us from talking about death and dying

Let’s all take on that responsibility. Let’s talk about it: openly and without fear. It’s too much to have that conversation for the first time when we are facing death. It’s much easier to talk about it while we’re living a healthy life.
We need to ask ourselves what is a good death for us.

Why do we value quantity over quality of time? Why do we cling so dearly to the notion that a life well lived is the longest? Sometimes doing nothing is the most courageous path. Sometimes accepting there’s nothing left that can be done is the bravest choice. Some may describe such a decision as “giving up”. Pursuing treatment until the very end, on the other hand, is lauded as “being a fighter”.

doctor and patient

Do these words,”battle” and “fight”, compound medical teams’ feelings of failure when an unavoidable and imminent death is in front of them? Changing our language may help us to change the way we think. Illness and death are a part of life. Loss is not a failure: not ours, and not our doctors’. Perhaps redesigning our expectations and language at end of life could begin with Paul Kalanithi’s beautiful words:“The physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.” If they did, I believe death and dying could be a richer and better experience for everyone involved.

Complete Article HERE!

Thinking about mortality

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Complete Article HERE!

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

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.

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.

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.

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.

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!

Negative feelings about aging can affect hearing and memory in older people

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Older adults who have negative feelings about aging also perform less well in tests of hearing and memory when the negative feelings appear to undermine confidence in their ability to hear and remember things.

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Changing how older adults feel about themselves could improve their ability to hear and remember.

This was the finding of the first study to look at associations among three variables in the same group of older adults: views on aging, self-perceptions about one’s hearing and memory ability, and one’s actual performance in those skills.

The study, led by the University of Toronto in Canada, is published in the journal Psychology and Aging.

First author Alison Chasteen is a professor of psychology whose research interests include stereotyping across the lifespan and cognitive processes such as memory and attention in social contexts.

She explains there is a need to understand more about the factors that influence the daily lives of older people:

“People’s feelings about getting older influence their sensory and cognitive functions. Those feelings are often rooted in stereotypes about getting older and comments made by those around them that their hearing and memory are failing.”

The study involved 301 older participants aged from 56-96 who completed a series of tests on hearing and memory, and who also underwent assessments of their views and potential concerns about getting older.

Tests of hearing, memory and perception of ability

First, the participants completed standard hearing tests and performed a series of recall tasks to test their memory.

In the memory tests, they looked at one list of 15 words on a computer screen and listened to a different list of words on headphones. They were then invited to write down as many words as they could recall.

There was also another test where the participants were asked to listen to and repeat a list of five words straight away, and then recall them again after a wait of 5 minutes. This was a test of both hearing and memory.

To assess participants’ perception about their own hearing and memory abilities, the researchers asked them to respond to a series of questions and statements. For example, whether they agreed or disagreed with statements like: “I am good at remembering names,” or “I can easily have a conversation on the phone.”

To assess participants’ views on getting older, the researchers asked them to imagine 15 scenarios and give a score indicating their age-related concerns. For example, one scenario is about being involved in a car accident where it is not clear which driver is at fault. The participants are asked to rate how worried they would be about being blamed because of their age.

The participants were also asked to rate their level of concern about being able to find contentment, being alone as they aged or about losing their independence, or being more forgetful as they got older.

Link is stronger when negative views affect self-confidence

When they analyzed the results, the team found that participants who had negative views about aging – and who believed they had problems with their hearing and memory – also performed less well on tests of those abilities.

“That’s not to say all older adults who demonstrate poor capacities for hearing and memory have negative views of aging,” Prof. Chasteen says, adding:

“It’s not that negative views on aging cause poor performance in some functions, there is simply a strong correlation between the two when a negative view impacts an individual’s confidence in the ability to function.”

This indicates a need to appreciate these broader and wider factors when assessing older people’s cognitive and sensory health, she explains. The perceptions they have about their abilities and functioning and how they feel about getting older should be considered.

Prof. Chasteen suggests older people could benefit from learning how they can influence their own aging experience. This could be done by giving them practical exercises to improve thinking, memory and physical performance and help them cast off stereotypes about aging. She concludes:

“Knowing that changing how older adults feel about themselves could improve their abilities to hear and remember will enable the development of interventions to improve their quality of life.”

Meanwhile, Medical News Today recently reported a study that found home-delivered meals reduce feelings of loneliness in older people who are homebound. The randomly controlled trial concluded that Meals on Wheels goes beyond ensuring nutritional health; it also has a positive impact on the emotional health of older people in need.

Complete Article HERE!

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

by Valery Hazanov

nursing home

 

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!

Deficiencies In End-Of-Life Care Extend Across Ethnicities

By Barbara Feder Ostrov

What kind of care do you want at the end of your life?

elderlyStanford University researchers put that question to members of three major ethnic groups in the San Francisco Bay area and found little variation in their responses.

“There is a common humanity – people want to live as long as they have good quality of life. When it is their time, they want to be consulted so they die in a way that they are respected, and they don’t want their families burdened,” said the study’s lead author, Dr. V.J. Periyakoil, director of the Stanford Palliative Care Education and Training Program and associate director of palliative care services at the VA Palo Alto Health Care Center.

Regardless of ethnicity, however, the researchers found that access to high-quality end-of-life care is often hampered by lack of financial means, poor communication with health providers, cultural mores and family conflicts. The study, involving more than 300 white, Asian and African-American seniors, was published Nov. 18 in the Journal of Palliative Medicine.

Periyakoil, whose earlier research focused on how doctors discuss end-of-life care with patients from different cultures, said physicians often believe that talking about end-of-life care with patients of certain ethnic groups is taboo and that patients and their families are reluctant to have these sensitive conversations. The new study, though small and limited in geographic scope, suggests otherwise. The participants may have been more affluent and better-educated than their counterparts nationwide, given the region’s demographics, Periyakoil noted.indian elder

The researchers interviewed 315 people over 50 at senior centers in Fremont, Palo Alto, San Francisco, San Jose and Walnut Creek. The group included 38 African-Americans, 160 Asian-Americans and 117 Caucasians. Interviews, conducted in English, Burmese, Hindi, Mandarin, Tagalog and Vietnamese, examined participants’ attitudes toward end-of-life care and whether they had experienced barriers to getting quality end-of-life care for relatives or others in their community.

Researchers are still collecting data on Latino participants and plan to publish a separate study on their views, Periyakoil said.

While all of the participants in the study said they valued high-quality end-of-life care, about 60 percent said they had experienced barriers to getting it, most notably financial difficulties and a lack of adequate health insurance. Medicare typically covers only short-term nursing home care and offers hospice benefits to patients whose doctors certify they have six months or less to live and who are willing forgo treatment intended to cure their terminal illness.

white eldersThere were no statistically significant differences among ethnic groups in reporting barriers to care. But participants with less education were more likely to report that their biggest barrier to care was financial. Patients with more education were more likely to cite doctor behaviors that hampered end-of-life communication. And women were more likely than men to cite barriers to care overall, perhaps because they were more likely to be direct caregivers and have more experience with end-of-life needs.

Regardless of ethnicity, patients felt that “doctors were just too busy to initiate [end-of-life] conversations, reluctant to listen to their concerns and questions about EOL decision making, and often gave vague responses, making it difficult for the patient to comprehend their choices and make informed decisions,” the researchers wrote.

An estimated 2.6 million Americans die every year, but how the American health care system handles their last days is problematic across ethnic groups, according to “Dying in America,” a landmark report released in 2014 by the Institute of Medicine. Too many people end up having aggressive treatment that is ineffective and expensive and doesn’t contribute to the patient’s quality of life, the report found. Other research examiningracial gaps in attitudes toward hospice care and other studies has found differences among ethnic and religious groups in how they approach end-of-life decisions.

But people want to talk about it regardless of background, says Dr. Steven Pantilat, a University of California, San Francisco professor of medicine and director of UCSF’s palliative care program, who was not involved in the study.

“What this study tells us is that all of our patients want us to have these conversations,” Pantilat said. “They’re waiting for their doctors to bring it up, to not be rushed, to communicate sensitively.”Asian Senior

A new federal policy may make those conversations easier – and more routine. Starting in January, Medicare will reimburse physicians for discussing end-of-life care. That policy infamously – and incorrectly – was derided as promoting “death panels” during the debate over the Affordable Care Act and a version of it was dropped from the legislation. The counseling will cover what kind of medical care patients want to receive as they approach their last days.

Periyakoil urges patients of all backgrounds to prepare for these conversations, and new planning tools are available in different languages to help. Among them is the Stanford Letter Project, which helps patients write a letter to their doctors about the end-of-life care they do and don’t want in languages including English, Spanish, Mandarin, Vietnamese, Hindi, Urdu, Tagalog and Russian.

In one redacted letter provided by Periyakoil, a woman named Patricia writes: “I do not want my longevity to be more important than my comfort.”

Pantilat advises the doctors he trains that they don’t need deep knowledge of the beliefs of every religion and culture they might encounter, because every patient, of whatever ethnicity, has different goals.

“If we come in with true curiosity, respect and openness, we can learn a lot about how to take care of someone in a sensitive way,” he said. We need to ask: “What do I need to know about your culture and your family to take good care of you?”

Complete Article HERE!