Category: Preparing for Death

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Depression, fear and deterioration

— Why some Asian families avoid speaking about death

When Mishelle Tongco’s grandfather was given 30 days to live, her family decided not to tell him.

By Mishelle Tongco

My Filipino-Chinese grandfather taught me many things as I was growing up — from how to make spring rolls to the importance of family.

One of the most important lessons he passed on, was that no good ever comes from lying, no matter the circumstances.

“We must obey the word of the Lord,” he would tell us.

But for the last month of his life, my whole family and I withheld the truth from my grandpa.

In April last year, after more than two years on dialysis, he was given a month to live — and we decided not to tell him.

Lady sitting in front of a grave
Many Asian families believe that hiding information will protect their relatives from emotional harm.

Being born and raised in Australia, I did not understand what was happening — I thought this was something that only happened in my family.

But families withholding information about a life-threatening diagnosis is actually common practice in Asian cultures.

It is believed that speaking openly about death can do more harm than good, bringing bad luck, fear and emotional pain.

Yongxian Luo, a professor of Chinese studies at the University of Melbourne, said Asian families regularly chose to hide the truth about a terminal illness from their loved ones to protect them.

Professor Luo calls them “non-disclosure topics”.

“Certain topics, which are common for people to talk about in Anglo-American culture, are taboos or at least not preferred in discourse,” he said.

“For non-disclosure topics, the major difference is that Asian cultures do not want to talk about negative things.”

A headshot of Dr Nicola Atkin.
Dr Nicola Atkin says some cultures put more emphasis on familial responsibility and less on individual autonomy.

Dr Nicola Atkin, from the Peter MacCallum Cancer Centre in Melbourne, said that in her experience caring for patients and families from Asian cultures, they often put a greater emphasis on the patient as part of a family and community than on individualism.

“Some cultures have far less emphasis on the individual and individual autonomy but more on relational autonomy and a view of the patient in the context of their family, community and culture,” she said.

“This focus from family members on non-disclosure often goes hand in hand with a very strong sense of responsibility and duty to protect and care for their loved ones.”

Professor Luo said this emphasis on family shaped how people in Asian cultures engaged in most social and interpersonal relationships.

“Mutual trust is a top priority,” he said.

“In Hong Kong, a number of successful family businesses don’t hire outsiders because family members are more trustworthy.

“This is something Asian people would bear in mind when they think about social relationships.”

Sometimes these conflicts between Eastern and Western values can happen within families, particularly those in the diaspora.

A still from the film The Farewell showing a family standing and looking at the camera.
The Farewell is about a Chinese family who decides not to tell their grandmother that she is dying of cancer.

Based on her own experience dealing with her grandmother’s cancer diagnosis, US filmmaker Lulu Wang wrote and directed The Farewell, a 2019 drama/comedy that explores the cultural differences in approaches to death.

In the film, the mother of the central character, Billi Wang, relates a saying in China: “When people get cancer, they die. It’s not the cancer that kills them, it’s the fear.”

So when Chinese-born American Billi’s “nai nai” (grandmother) is given a few weeks to live, her family decides not to tell her.

The family struggles with this decision, especially Billi who believes her grandmother has the right to know.

“Isn’t that wrong to lie?” Billi asks her grandmother’s doctor.

“It’s a good lie,” he responds.

In Asia, doctors will generally comply with a family’s wishes when disclosing a diagnosis, using less specific and threatening terms such as “fever” or “sickness”.

Dr Atkin said both the family and patients usually shared the same attitudes when it came to this practice.

“Families have stated that they believe the patient will become depressed, lose all hope or deteriorate more quickly if they know the details of their disease or their prognosis,” Dr Atkin said.

“Usually the patient has been happy to delegate to family members or has wanted limited information and the family have been relatively accepting of this.”

A woman with her arm around a child near a grave.
Sarah Jones feared that her children would get depressed if they found out about her prognosis.

However, Dr Atkin said the practice of “non-disclosure” in Western countries could present conflicts between ethical principles which needed to be “weighed against each other”.

“Modern Western cultures tend to have a strong focus on the importance of the individual patient’s autonomy, and the individual making decisions about their own healthcare based on the full information provided by medical teams,” she said.

“Withholding information and making treatment decisions without the patient’s involvement can result in a form of paternalism, affect the patient-physician relationship and the patient’s trust in the doctor.”

Meanwhile, Elizabeth Utting, a senior associate in medical negligence at Law Partners, said as well as the ethical implications there were also legal ones in Australia.

“A medical negligence case could arise where withholding such a diagnosis meant that the patient could not receive medical treatment they required to improve their illness or prognosis,” she said.

“A medical negligence case could also arise if a patient’s prognosis was not communicated to the patient, and the patient suffered mental harm as a result of the delay in informing them of the prognosis.

“A doctor’s ethical and legal duty lays with their patient, not their family members.”

An act of love?

It’s not just children who withhold information from elderly parents.

For Filipino-Australian Sarah Jones it was the other way around.

She was 59 years old when she was diagnosed two years ago with terminal uterine cancer and given three months to live.

Her sister, Jessica Cruz, told the ABC Ms Jones decided to keep the prognosis a secret from her children.

“Only my brother-in-law and I knew,” said Ms Cruz, who asked to use pseudonyms for herself and her sister.

“She begged us not to tell her children about it. She continued to tell her kids that it was curable.”

Ms Jones worried about her children’s mental health and was afraid they would get depressed.

“She just wanted them to live a normal life,” Ms Cruz said.

When Ms Jones lost the ability to walk, Ms Cruz told her it was time to tell her children.

“I told her that they had the right to know and that they would understand — but really, I just wanted them to stay with their mum because time was running out,” she said.

Child holding a bouquet of flowers in front of grave
Sarah Jones died four days after turning 60 in hospital.

Her children found out about her condition from their father, and after seeing her son cry Ms Jones was upset.

But the next day she felt better about the situation.

“They were now prepared,” Ms Cruz said.

“There were no more secrets.”

Deputy director of palliative care at Melbourne’s St Vincent’s Hospital Jennifer Weil said there were many cultural, religious, and personal factors that went into decisions about how much information people wanted shared, especially in relation to terminal illness.

“The challenge for us as doctors is to seek to explore and understand, and avoid our own beliefs and values directing how we share information,” she said.

A women smiling at camera
Jennifer Weil says doctors need to make the effort to understand cultural beliefs.

Dr Atkin said if a patient, based on their cultural beliefs, decided not to have their diagnosis or prognosis disclosed to them, it did not necessarily go against the principle of autonomy.

“My approach is to understand the wishes, preferences and concerns of the family and the patient regarding medical information, explore these sensitively and reassure the family that their loved one will not be given information they don’t want to receive,” she said.

A good lie?

During the first few days after we got my grandpa’s prognosis, I did not want to lie to him — but I felt I had to respect my family’s decision.

Then, towards the end, I began to understand where my family was coming from.

We lied to him because we loved him. We wanted my grandpa to live his last remaining days in happiness instead of pain and grief.

And he did.

A close up of an older person's being held by another person.
Mishelle Tongco’s family spent their last moments with her grandpa in peace.

The last time I saw my grandpa was the day before he died at a hospital in Melbourne’s western suburbs.

Surrounding his bed was his wife, children and grandchildren. We all stood quietly.

“Thank you, my wonderful family,” he said as he looked up at the faces of his loved ones.

“I’d like to go home now.”

He closed his eyes.

“You will go home soon,” my sister told him.

“We will be at home waiting for you.”

Complete Article ↪HERE↩!

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Vermont Removes Residency Requirement for Medically Assisted Deaths

— The change, signed into law by the state’s governor, followed a legal challenge brought by a 75-year-old Connecticut resident.

Lynda Bluestein is the first nonresident to be granted medically assisted life-ending care in Vermont.

By Livia Albeck-Ripka

Vermont has become the first state to remove a residency requirement from its law on medically assisted death to allow terminally ill people from out of state access to life-ending care.

The law, which for a decade has permitted doctors to prescribe life-ending medication to terminally ill people 18 or older, was amended Tuesday, when Gov. Phil Scott signed a bill scrapping the residency requirement.

The measure passed Vermont’s Senate and House last month following a legal battle brought against the state by a 75-year-old resident of Bridgeport, Conn., who has late-stage fallopian tube cancer and argued that Vermont’s restriction was unconstitutional. The state waived the residency requirement for the woman, Lynda Bluestein, as part of a settlement in March.

“I was always hoping that the Legislature would change the law and make it open to everyone,” Ms. Bluestein said by phone on Tuesday. “I was really thrilled.”

While Vermont is the first state to formally remove the residency requirement from its medically assisted suicide law, Oregon health authorities agreed in 2022 to stop enforcing its residency provision as part of a settlement in a similar federal lawsuit. A bill seeking to remove the requirement has since passed Oregon’s House. The state was the first to pass a medical aid in dying law, which took effect in 1997.

Several other states and the District of Columbia allow terminally ill residents access to life-ending treatments, but most do not permit nonresidents to access their care.

Advocates for improving end-of-life care said on Tuesday that they hoped other states would follow Vermont in allowing people to cross state lines to end their lives with dignity.

“Support for this is widespread and bipartisan,” said Kimberly Callinan, the chief executive of Compassion & Choices, an advocacy group that supports expanding access to end-of-life medication. “People universally want to be able to make decisions over how they die.”

But critics of assisted-dying laws argue that the practice remains a matter of contention. “There continue to be legitimate and serious concerns,” Mary Hahn Beerworth, a lobbyist with Vermont Right to Life, testified before a legislative committee earlier this year.

“Vermont Right to Life opposed the underlying concept behind assisted suicide and opposes the move to remove the residency requirement as there are still no safeguards that protect vulnerable patients from coercion,” Ms. Hahn Beerworth said. She noted a number of other concerns, including what might happen if the patient decided not to use a lethal dose of drugs, and instead took it back to their home state. She added, “If the drugs are taken and death occurs in Vermont, what happens with the body?”

Jennifer Popik, a spokeswoman for the National Right to Life, said in a statement that the organization was “deeply disappointed that Vermont is now poised to become a tourist destination for assisted suicide.” The laws, she added, posed a danger to “vulnerable groups.”

But Cassandra Johnston, 38, a resident of New York who has stage three breast cancer, said that Vermont’s law change on Tuesday had given her peace of mind, knowing she could go to the state to access care if needed. “This should be the standard of medical care, not the exception,” Ms. Johnston said.

Ms. Bluestein, whose legal battle preceded Vermont’s rule change on Tuesday, said that she still planned to go there when the time came for her to request life-ending medication.

Having such an option, Ms. Bluestein said, meant she could die on her own terms, surrounded by her family. She added, it’s “a tremendous relief.”

Complete Article ↪HERE↩!

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Death Cafes

— You’re Going Where?


By Marilyn Mendoza

The Death Positive Movement

In Victorian England, death was in the forefront of society. People would begin talking and planning for their death when they were young. By the time someone died, there was no doubt about what was wanted and how it was to be carried out. Women would even make their shrouds to be included in their wedding dowry.

Since that time, we have made a complete reversal in how we deal with death, from being the center of one’s life to rarely being discussed. However, continuing to ignore it will not make it go away. Death is coming for all of us.

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In 2011, the Death Positive Movement began. Since then, it has been providing opportunities for people to talk more openly about death and dying. Its goal is to decrease the stigma of death. However, many people are still unaware of the movement and the activities associated with it. Perhaps one of the better-known activities associated with the movement is the Death Cafe.

Quite simply, Death Cafes are places that you can go, for free, to feel comfortable and safe talking about death. Actually, you do not even have to talk if you don’t want to. There is no planned agenda, and anyone can bring up a topic to discuss. It is free. Cake and tea are always served and sometimes other beverages. The Cafes are currently found in at least 80 different countries. Sometimes the group may be run by a mental health professional, though most of the time it is someone who has no training in groups or mental health.

While Death Cafes are not meant to be support or therapy groups, I have generally found that people who attend these meetings are warm and supportive of each other, sharing a common bond in accepting mortality. Other activities associated with the movement are Death with Dinner and Coffin Clubs. Often Death with Dinner consists of smaller groups who might get together at someone’s home for dinner and discussion about death.

Coffin Clubs have been popular in New Zealand, England and Ireland, although I am unaware of Coffin Clubs in the United States. People get together to build, decorate and try out their coffins. Members enjoy being with each other. It is a safe place to talk about their lives and future death. An additional benefit to the Coffin Club is the significant amount of money saved by building their own coffins.

Death Cafes and Therapy

Of the three activities, my clients and I have experienced the Death Cafe. I attended the first Death Cafe held in New Orleans and was amazed by the number of people who came. It was a mixed group, with some being from the medical and mental health fields, while most of the others were from the community. They had heard about the Death Cafe and came to see what it was all about. It was a unique experience.

You don’t usually find people sitting around talking about death. However, it was very encouraging. For over an hour, we introduced ourselves and talked about what had brought us to the meeting. Some came due to curiosity, some due to the loss of a loved one, and some with their own terminal condition. All were interested in discussing and learning more about death. It is good to be able to see that others have the same concerns and fears about dying as we do.

During the meeting, I began to reflect on the people in my practice who might benefit from this experience, and then I thought about Sarah. Sarah was a 74-year-old woman who came into therapy to talk about her declining health. She had been diagnosed with congestive heart failure, which was worsening. She felt that she would not be alive for much longer and wanted to talk about dying.

The problem was that her family did not want to accept her impending death or talk about it — an all-too-common experience. I talked with Sarah about considering attending a Death Cafe meeting. It didn’t take much to convince her.

The following week when she returned, she talked about her experience and how it was like a “breath of fresh air” for her. “People were so welcoming and open,” she said. “It was a relief to be able to talk about dying and not feel guilty. I’m glad I went. I feel like I learned a lot.”

The meeting seemed to empower Sarah. She decided that she wasn’t going to wait around for her family and that she just needed to take charge of all the planning herself so she could have everything just the way she wanted. She began to plan her funeral, the music, and the dress she wanted to be buried in. She picked out her gravesite and even designed her own headstone.

I have also encouraged trainees who were interested in palliative care to have the Death Cafe experience. It has been a great learning tool and helps them to be more comfortable when talking about death with others.

Tulane Medical school has also been in the forefront of utilizing the Death Cafe as a way to address burnout in medical staff who work in high death areas such as the ICU. The meeting I attended included medical staff who worked together on a surgical unit. A child had died in surgery, and the doctor who had performed the surgery was sharing the impact on him as well as the other staff present.

It was very touching to hear him. His pain was almost palpable. Perhaps most striking to me was the atmosphere of the group that allowed him to be open with his feelings of sadness and to cry at the loss of his patient. There are perhaps many different providers who work with the dying that could benefit from debriefing Death Cafes.

Of course, not everyone is enthusiastic about learning more about death. In my practice, I have found that women tend to be more open to the idea than men. There was one situation that has stayed with me for years that demonstrates the power that the fear of death can have: Patricia was brought to therapy by her husband at her doctor’s request. She had been quite ill and recently diagnosed with cancer. Her husband brought her in because the doctor said she was depressed.

It was hard to determine if she was more afraid of her husband, or of dying. One day, she told her husband what we had been talking about. He flew into a rage and would not let her return. It is this fear that speaks to the need for Death Cafes to normalize the process and free people up to talk about what is ahead for all of us.

The Death Cafe has a saying: “talking about babies won’t make you pregnant and talking about death won’t make you die.”

Complete Article ↪HERE↩!

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Dealing with death and dying

— How to protect your psychological health

By Bianca Iovino

Aged care staff face a variety of challenges that come with their work and dealing with death, dying and grief is an unfortunate reality of the job.

When frequently dealing with the death of people you are caring for, particularly if you have a strong relationship with them, intense feelings of grief and loss often arise which can be harmful if not dealt with.

Grief is a common response to death. Everyone expresses grief differently and no one can tell another how they should grieve, but it is important to know where to turn to when you are in a state of bereavement and still need to work in the industry.

The Australian Psychological Society acknowledged that aged care workers should be trained to deal with the challenges of their job properly, particularly in areas where trauma or workplace injury may occur, such as the death of a client. But access to psychological services, particularly through your workplace, can be limited as the country faces a shortage of psychology professionals.

Just yesterday, The Medical Journal of Australia released findings that evidence‐based mental health and wellbeing programs are needed for workers in health and aged care organisations to alleviate the ongoing mental health and wellbeing effects of workplace shortages, considerable physical and psychological demands of the job as well as the COVID‐19 pandemic.

As it is in the nature of a carer to do just that – care for others – it is also important for you to care for yourself when you’re feeling weighed down from bereavement.

So what can be done to protect your psychological health?

Heightened exposure to grief in aged care

Exposure to repeated instances of death and grief has been linked to burnout and overwhelming stress in many aged care workers.

Aged care workers are battling staff shortages, increased responsibilities and are still feeling the impacts of the COVID-19 pandemic, increasing the likelihood of experiencing burnout even more.

Grief can also be complicated or prolonged which can be persistent, debilitating and lead to serious psychological distress.

Aged care staff can experience grief more intensely after a resident’s death if:

  • They were particularly close to the person who passed
  • They have limited confidence in caring for people at the end of life, or in talking about death
  • They are facing other stressors, such as heavy workload demands or conflicts and pressures at home
  • COVID-19 can also add to the grief experienced by aged care staff as they are under increased pressure to provide end of life care when family and volunteer visits are limited

Managing grief and bereavement at work

After experiencing death and loss, you may feel the need to start distancing yourself from clients in the name of self-preservation.

You’re not alone. Since the pandemic, many working in the health and aged care field have said they are experiencing compassion burnout – putting the care of vulnerable older Australians at risk. But this strategy probably won’t help you and learning ways to cope with grief can help you build the emotional resilience needed to be the best carer you can be. You can grieve and still care well.

As a first step, it is important for you to acknowledge your feelings of loss and grief. Think about how you are feeling, why you may be feeling it and identify if you think you need to take more steps to help you mitigate these, often intense, feelings.

If you have decided you need more help and support, you can lean on your workplace and fellow colleagues to talk out your feelings and experiences.

Aged care supervisors and staff can support each other by debriefing after a client dies and listening in a non-judgmental way. You may also decide to organise a memorial or attend the client’s funeral if you wish.

Staff should be given time and a private space to debrief after a resident’s death to honour the loss, sign condolence cards for the family and share information about the end of life caring experience. You can ask to know your organisation’s support policy by talking to your supervisor as this should be outlined in an Employee Assistance Program.

Managing grief and bereavement at home

When something happens at work, it’s not easy to simply leave it at the door.

Developing self-awareness is an important step in mitigating the feelings and experiences associated with bereavement and grief. By identifying your strengths and weaknesses as well as understanding why you react the way you do in certain situations, you can better manage your emotions rather than being overwhelmed by them.

If grief and bereavement are becoming unmanageable and starting to impact your home life, maintaining self-care practices is paramount to getting through.

Taking time to rest and relax is key to avoiding burnout and keeping stress levels under wraps.

Where possible, spend time with friends and family so that you have opportunities to talk about your feelings and experiences and also maintain your sense of community support and social connection.

As always recommended, maintaining a healthy diet and exercising in some capacity helps with feelings such as sadness and loss. But you may find you still need a bit more support to help you through.

Seek help by talking to a General Practitioner (GP), a counsellor, a psychologist or other source of professional support.

There are specific bereavement services to help you with grief and loss which may even be available to you through your employer, given the nature of the job.

Dealing with death and dying is no easy feat. We all experience grief loss in our lives but for aged care staff, this reality is constant.

Knowing what to do, where to turn and what supports are available to you when you lose a resident are important pieces of information that can help you grieve healthily while still caring.

Complete Article ↪HERE↩!

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My death is close at hand.

— But I do not think of myself as dying.

By Paul Woodruff

How often do you think about death? “Every third thought,” said Shakespeare’s avatar Prospero in the last line of the last speech he gives in Shakespeare’s last play, “The Tempest,” aside from the epilogue that follows the play. My friends say they think of death at least as often as Prospero. I do, too. If we think about death so much, we ought to know what to think about it. Philosophy is supposed to have answers, but the answers we hear most often from philosophers are not good for us. “Live every day as if it is your last,” we are told. “Remember that you are on the way to death each day.”

A friend recently wrote an email message with this line in it: “Paul is dying of a lung infection.” He had meant it for someone else, but he had misdirected it. That sentence infuriated me. I do not have a lung infection. My death is close at hand, however, because of a lung condition called bronchiectasis, and I am on oxygen day and night. But I do not think of myself as dying. I am living each day with as much life as I can put into it. For me, that means going to bed each night planning at least one project for the next day — something worth getting out of bed and living for. As I think of dying, I make each day a time for living, for having something to live for.

What kind of project is worth living for? Not a project I could complete today. Worthwhile projects spread out over time. Writing this small essay and finding someone to print it will take at least a week, and today is only the first day. I will make sure that the last day for this essay will be the first day for something else. Thinking of death, I want to live every day as if it were the first for something.

Living as I do, with projects that continue over time, I can be sure that my death will cut me off before I finish something worth doing. I want to be cut off when I die of something I care about doing — not from thoughts of death alone. Unless I am in unbearable pain, I should be able to live right up to the last moments. Here is an inspiring (although slightly gruesome) example: Under bloody Queen Mary, Archbishop Thomas Cranmer, the author of the lovely Anglican prayer book, was burned at the stake for his protestant views despite signing false confessions of faith in Catholic doctrine. Even as the flames licked up around him, and his death was moments away, he was very much living (not dying) when he put his right hand into the heart of the fire to punish it for signing false confessions

I know I will die soon. But must I be miserable about it? Why not find a cause for joy in each day? Some corner of my mind always knows that sad thoughts lurk behind my projects. But my dying will be much harder on my loved ones than it will be on me. Survivors often think they have failed to keep their loved one alive. I want my survivors to know that death is not unwelcome to me, although I want to be living each day. There’s nothing wrong with dying. All the best people in history have done it. Let foolish philosophers see themselves as dying every day. Thinking of death, I choose life.

Complete Article ↪HERE↩!

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How to Support Someone with a Terminal Illness

Terminal illness, sometimes called ‘life-limiting illness,’ is a condition or illness which cannot be cured and is likely to lead to death. Death is, of course, a natural part of life. Everyone dies and many (if not most) of us are afraid of it. Our brains don’t do well with the idea of death, in fact, researchers say that our brains shield us from the existential fear around dying.

Yair Dor-Ziderman, a researcher at Israel’s Bar Ilan University, says this: “The brain does not accept that death is related to us. We have this primal mechanism that means when the brain gets information that links self to death, something tells us it’s not reliable, so we shouldn’t believe it. We cannot rationally deny that we will die, but we think of it more as something that happens to other people.”

So what, then, do we do when someone we are close to is diagnosed with a terminal illness or life-limiting condition? How do we face down that existential fear and help? Or cope? Or help them cope?

Advanced cancer, dementia (like Alzheimer’s and others), lung disease, multiple organ failure, congestive heart failure, chronic obstructive pulmonary disease (COPD), kidney failure, AIDS, Amyotrophic lateral sclerosis and adult failure to thrive are among conditions and illnesses which can become terminal.

What a person with a terminal illness may be experiencing varies from person to person and from moment to moment. These feelings may come one at a time, in groups or they may cycle and include:

  • Denial
  • Fear
  • Shock
  • Sadness
  • Resentment
  • Anger
  • Relief
  • Acceptance

People’s reaction to the news that they have a terminal illness comes in stages. The way we react to the news that a friend or loved one has received a terminal diagnosis is equally varied. There’s no standard reaction, and there’s no such thing as a right or wrong reaction. Some people feel numb at first, as though what they’re being told doesn’t make sense. Some are immediately frightened, others may initially appear very matter-of-fact.

At the consultation or doctor’s visit, after a person hears that his or her illness cannot be cured, they may be unable to process or retain information that comes afterward. The diagnosis is simply too much to take in. Friends and loved ones may experience the same thing. If you find yourself in the difficult emotional space of helping someone you care about deal with the premature end of their life, look for ways to support the person, their caregivers and yourself.

Some tips:

Don’t assume. For example, don’t automatically count someone with a terminal illness out of gatherings, trips or socializing. Someone with a life-limiting illness is first and foremost a person, with interests and an identity outside of their prognosis. If you aren’t sure whether a loved one would like to get together, invite them and let them decide.

Try not to focus on the illness. While you may feel the need to talk or ask about the person’s illness, it’s a better plan to allow them to determine when and how much to talk about their health. People living with terminal illnesses can feel removed from everyday life, or reduced to only their medical condition. Some may feel that the person they were before diagnosis doesn’t exist anymore, and they may miss the autonomy they had before. When an illness progresses, the person living with it loses control of so much – when to eat, caring for themselves, sleep patterns – so any sense of control you can help them maintain is a very good thing. Even if it’s as simple as when or if to talk about their illness.

Avoid describing the person as ‘dying.’ It’s natural. When someone has been given a terminal diagnosis, ‘dying’ is the word that comes to mind. Remember, though, that to them they are very much still alive, even though their time might be limited. Technically, also, a person is only ‘dying’ at the moment of death. Until then, he or she is living with a life-limiting illness. A fine distinction? Perhaps, but fine distinctions are often the most important distinctions.

Remember caregivers. You really can help someone by supporting their primary caregivers. People caring for seriously ill loved ones need relief. Ask if they need an afternoon or evening off. Hug them if they’re huggers. Make a meal, bring them a coffee.
Rephrase! Don’t say “It’s going to be okay” or ask “How are you?” It’s insensitive to say it’s going to be ok to someone whose fate has been sealed by illness, especially if we don’t know where they are in their processing/mourning process. Instead, ask how they are feeling today. Of course it’s natural to open a conversation with ‘how are you,’ but asking how a person is feeling today helps keep the focus on the moment at hand, and is less overwhelming than asking a big, open-ended question.

Jump in and help. If you tell some to let you know if they need anything, that’s vague. It might even feel meaningless, even if you really want to help because it’s non-specific. Just jump in. Visit often, or call. Ask if you can tidy up the kitchen or take care of some laundry. Ask for a grocery list and mark that chore off the list or mow the yard.

Don’t give up. Someone with a life-limiting illness may not feel well enough for visitors all the time, but don’t try once and then throw in the towel. Living with a terminal illness is difficult and unpredictable. Everyone’s emotional bandwidth is limited – people dealing with end-of-life issues may find that their bandwidth is much narrower or fluctuates more than before. Keep checking in.

Make it a no-phone zone. Sometimes we check our phones without even thinking about it, but if there’s a time to put it away, it’s when you’re spending time with someone whose life has been shortened by disease. Be fully present for them.

Say something. Even if you aren’t sure what to say, something is almost always better than nothing. It could be as simple as ‘I’m thinking of you,’ or ‘I love you.’ You don’t have to directly address the illness or condition, in fact it may be a relief for the person to not talk about it. Speak from a place of kindness and it’s hard to go too far wrong.

Feel what you feel. You may find yourself dealing with anticipatory grief, which is similar to the grief we experience after someone dies. There are differences to be aware of. There is often more anger. You may not know how you feel – holding on and letting go at the same time. Anticipatory grief is a deep sadness which is hard for anyone who hasn’t experienced it to understand. Not everyone will feel anticipatory grief, and it’s neither right nor wrong. Don’t go it alone – talk to someone about your pain. Find a friend who doesn’t judge and speak openly and honestly, making it clear that you don’t need them to fix anything but just to listen.

Complete Article ↪HERE↩!

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Rabbi Laura Geller helps people ‘get good at getting older’

By Shannon Levitt

A few years ago, when Rabbi Laura Geller was still the senior rabbi of Temple Emanuel in Beverly Hills, California, she began to notice that many of her older congregants had started to drift away and she wanted to know why. At the time, she was also contemplating what her life after retirement might look like. So, she and her husband, Richard Siegel, decided to take the questions they were already posing to themselves and ask them of other seniors.

So began a listening journey that would result in “Getting Good at Getting Older,” a National Jewish Book Award finalist published in 2019.

Gathering small groups in private homes, Geller and Siegel spoke to about 250 congregants about what keeps them up at night, what gets them up in the morning and, without a job and colleagues, who they turn to for community.

“What we discovered is that people have fears of becoming invisible and becoming isolated. Your friendship network changes as you grow older and people that used to return your calls don’t anymore. People were concerned about purpose — “What will I do all day?” — and about becoming, “God forbid,” dependent,” Geller told Jewish News.

On May 3, Geller will present some of her findings about the importance of continually building relationships, making a difference, getting involved and giving back at an invitation-only Lion of Judah “Cocktails and Conversations” event.

“After hearing Rabbi Geller’s presentation at the International Lion’s Conference in Scottsdale this past December, we thought she would be the perfect speaker for our upcoming event,” said Gail Baer, vice president of philanthropy for the Center for Jewish Philanthropy of Greater Phoenix.

Geller’s book investigates the period between midlife, when people build careers and raise families, and “frail old age” — what gerontologist Barbara Waxman termed “middlescence.” Just as adolescence came to be understood as a distinct stage of life, neither childhood nor adulthood, the longevity patterns of this century have constructed something new at the other end of the age spectrum.

At last December’s conference, Geller attended two “overflowing” seminars on the topic led by Waxman.

“A lot of people want to talk about this and learn how to engage the experience, the talent, the passion, the resources of this age cohort,” Geller said. The day after her own book on the topic was published, it was number one on Amazon’s Jewish life section.

The book was also a kind of bookend to the seminal “Jewish Catalog,” the series of guides to “do-it-yourself” Judaism that Siegel had co-edited decades earlier. It was a best-seller for the Jewish Publication Society and attracted young Jews by popularizing an ethos of pluralism and gender egalitarianism.

Because Siegel and Geller were now themselves part of a cohort of older Jewish Americans facing new issues, “Rich really felt that we needed another Jewish catalog about how to navigate the challenge of growing older,” Geller said.

Sadly, while working on the book, Siegel was diagnosed with cancer and passed away before its publication. He was in the strange position of working on a book about getting older, a privilege he wouldn’t experience for himself. Ironically, the couple researched things for the book, like end-of-life issues and how to plan a funeral, that they used to deal with their personal situation.

“When Richie really did get sick, he had a really good death because there was nothing we hadn’t already talked about. A good death is if you’re lucky enough to be able to die at home, surrounded by people you love and there is nothing left unsaid. I’m very grateful for that,” Geller said.

During their listening campaign, Geller was surprised by how many people hadn’t had some of those tough conversations with their adult children. The book provides a how-to toolkit for people for that and many other topics, including making friends, giving back, getting involved, leaving a legacy and telling one’s story before it’s too late.

After the book’s publication, Geller was invited to speak at synagogues and Jewish community centers across the country. Once COVID-19 restrictions made travel impossible, she started doing virtual presentations.

“It was a wonderful opportunity to visit lots and lots of places because the cost was so much lower, and I spoke to at least 100 places virtually,” she said. Sometimes it was to a group of 20 people and sometimes more than 100. Despite the size, it was clearer with every conversation how much people wanted to talk about their fears and hopes.

During the Q&A period, someone might ask for advice on how best to downsize their households or give things away. Another person might chime in to say what they had done. Though these people might be in the same congregation, they didn’t know each other well enough to ask these questions before Geller’s appearance prompted them.

“Through these conversations, they were able to help each other because, even though we are the curators of our own lives, the truth is we are all figuring out what it means to be in this new life stage and we can really help each other do that,” Geller said.

While promoting the book, Geller kept learning, and if she were writing it again, she would likely spend more time writing about loneliness and isolation, she said.

A majority of people she’s spoken with want to stay in their homes, but that might entail several changes in terms of creating or modifying their community. A focus on building intergenerational connections can assist with that goal.

She also has a message for the Jewish establishment that focuses most of its resources on families with young children, which she calls “a myopic view.”

“I’m also part of the Jewish future with my experience, my wisdom, my resources, my talent, my desire to serve and my need to be in connection with different generations. That’s an asset in the Jewish community and to the extent to which that’s not acknowledged — they’re losing an incredibly important talent pool and that challenges the Jewish future,” she said.

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