Making peace with life the secret to a good death, says veteran palliative care counsellor

Recently retired counsellor Barry Whelan spent 18 years in ministry before working in palliative care.

Over the past 25 years, Barry Whelan has made more than 20,000 visits to palliative care clients and their families.

The recently retired palliative care counsellor from Poowong, in Victoria’s south-east, has guided people of different faiths and backgrounds through the final stages of their life.

It’s given him insight into what happens when someone is at the end of their life.

“When someone is diagnosed with a terminal illness, they run through a milieu of emotions,” Mr Whelan says.

“Most people get to their 30s or 40s or 50s and think they’ve got 30 years left, then all of a sudden they’re told that they’ve got something that’s going to terminate their life.”

Elsie's Project — Resolution of an ongoing family dispute is an important part of the dying and grieving process.

He says common reactions to a terminal diagnosis include shock, denial, or anger followed by questions such as ‘Why me? Why now?’ and ‘What happens when I die?’

“I often get asked, ‘What’s it like to die?’ and my favourite line is ‘I don’t know, I’ve never done it, but I can teach you how to live before you die’.”

Palliative care primarily involves nursing in co-ordination with services such as occupational therapy, art and music therapy, counselling, and pastoral and spiritual care.

“When I first started back in 1997, it was probably a 95 to 98-per-cent death rate, but now with the advances in modern medicine, people survive a lot longer,” he says.

Despite significant advances in pain management with terminally ill patients, Mr Whelan said the mental anguish around death and dying remained a challenging personal journey for individuals.

A good death

Mr Whelan says initial visits with palliative clients were about determining a client’s goals, priorities and what they wanted to achieve in the time they have left.

“A good death to me is someone who is at peace with themselves, at peace with their family or surroundings and at peace with whatever they believe in,” he says.

As a counsellor, he has helped clients work through their stress, anxiety, guilt and past issues to reach a point of comfort.

“One of the first patients I had, the lady wanted to jump from a parachute. She survived the parachute jump but within a few weeks she had passed away,” he says.

“It was something that she wished to achieve”.

Barry stands between two professional women — Barry Whelan with Palliative Care South East (PCSE) chief executive Kelly Rogers (left) and co-founder Dr Ruth Redpath.

Mr Whelan says the most heartbreaking cases that he witnessed as a chaplain in aged care facilities was when terminal patients who had not had a visitor for months and even years were suddenly set upon by relatives.

“Where there’s a will there’s a relative,” he says.

Likewise, he says that family dispute resolutions were an important part of the dying and grieving process.

“I’ve seen people sit on one side of the chapel with other family on the other side [and] it was all over some trivial thing that happened 40 years before,” he says.

“It’s amazing what drives people apart, and how little it can be to bring them back together.”

The body follows the mind

Mr Whelan says he has observed that terminal patients can linger on for days or weeks if there is something unresolved that they wish to sort out.

“I think the body follows the mind in this, both in living and in dying,” he says.

“A lot of people, once they come to that peace they can accept the dying, but a lot of people hang on.”

He recalls the story of a woman who was sent home to die in October 2007, whom he later visited in February 2008.

He says she was determined to see out her 47th wedding anniversary, then she willed herself to live for her 70th birthday celebrations, and later her son’s wedding in May 2008.

“That lady went right through for the two and half years that I visited her, until finally we made the decision at work that she wasn’t really palliative anymore,” he says.

“She was still having chemotherapy, but she didn’t really need us.

“We all have aims and goals.”

She eventually passed on in 2015, living for seven years beyond her life expectancy.

Young Barry — Barry Whelan estimates he has counselled more than 2,500 terminally ill clients since starting in 1997.

Mr Whelan has witnessed countless occasions where clients have seen through a birthday or milestone celebration, waited until a relative had arrived from overseas, or met a new addition to the family before passing within days of an occasion.

“The other thing that I see is that sometimes people wait until their loved ones have left the room, and then they will simply just close their eyes and they’re gone,” he says.

Mr Whelan believes that self-will plays a key role in a person’s ability to hang on to life. In the same way that people without particular purpose, attachment, direction or will to live, can make a call on when they’ve ‘had enough’.

He says it is not unusual for widowers to pass on not long after losing a lifelong spouse and soul mate.

“If a person doesn’t feel wanted, doesn’t feel needed, I think they lose the will to live,” he says.

“I have seen people who have gone to hospital and not been visited by their loved ones, and they’ve died within a few days. So again, it’s this will to live.”

A man walking into the light at the end of a dark tunnel — Terminally ill patients have a tendency to determine when they’ve ‘had enough’.

In illustrating an example of a sustained will to live, Mr Whelan refers to the stories of concentration camp survivors and prisoners of war who manage to make the best of every day despite horrific circumstances.

“I guess my motive has been to survive as best you can for as long as you can with the best conditions you can manufacture from what you’ve got,” he says of his philosophy on life.

After 25 years witnessing people in their final stages of life, Mr Whelan says that he has learned to value everything he has.

“My advice to people is just, ‘enjoy what you’ve got, while you’ve got it, because you can’t go to a doctor and ask for a prescription for tomorrow’.”

Complete Article ↪HERE↩!

May 13, 2023May 12, 2023

The grief, guilt and joy of being a caregiver for my mom

— As much as I may have resented it, cursed it, allowed myself to become embittered at times, I did what I chose to do. And I would do it all over again.

By Tracy Grant

I was my mother’s primary caregiver in the final three years of her life, as she struggled with dementia and the physical and emotional tortures that visit the afflicted.

If I am to be honest, I did it out of a sense of duty but not always joy or love.

I spent three or four days a week with her, including every weekend, not because anyone told me I needed to, but because I was the woman she had raised: the good Irish Catholic daughter of immigrants who never stopped craving her mother’s approval and affection. But during those three years, there were times when I would have sold my soul to not visit her, struggle with the wheelchair as we went for a drive, cajole her to eat and talk (endlessly) about the weather.

There were times when her eloquence about her condition moved me to tears, including when she told a neurologist that it “felt like my mind is shrinking in my head, doctor.” There were times when she would talk about “praying to God to just make me stronger.” And toward the end, there were times when she would say she just wanted to die.

I have never felt more helpless, searching for answers that would bring her some measure of joy, of comfort, of peace in a dynamic that was endlessly changing but inexorably heading toward a known conclusion.

That conclusion came March 1 when my mom died. I hope it was the blessing for her that I imagine it to be.

The author’s mother, Alice Ramsey, at Brookside Gardens in Maryland in 2022.

On the days when I’m a believer, I can imagine her reunited with my dad, her parents, her siblings and even my own husband. I can see her dancing, laughing and chiding, bringing her unique style to the Pearly Gates: “St. Peter, have you thought about changing out the drapes for window shades?”

On the days when I’m not a believer, I console myself with the knowledge that she is at least free. Free of the anguish that tormented her as her mind was stolen from her; free of the physical pain and infirmity that had marked those last years, months and days.

In those days before her demise — both the believer and nonbeliever days — I had prayed for her death. For her, yes. But, shamefully, for me, too.

The author’s mom Alice Ramsey and son Andrew at her house in Illinois in 2019.

The last good afternoon

Mom fell in her assisted living apartment on a Saturday, just hours after I had taken her to lunch at her favorite restaurant and we had sat by the fire in the common area and chatted with other residents. By the massively diminished standards she lived by, it had been a good afternoon. The last good afternoon.

We would spend hours in an emergency room before getting the dreaded diagnosis: broken hip. We had multiple conversations with doctors about treatment. She needed surgery they said at the same time they warned that survival beyond a few months in someone her age, with her underlying conditions was unlikely. “Why,” I asked, “should I put her through surgery?”

The answers that came back were disparate and betrayed how even well-trained, caring doctors (which all of them were) struggle to deal with end-of-life issues

The cardiologist seemed to indicate that while she could tolerate surgery, he, too, was unsure of the end goal. The hospitalist (a reasonably new specialty that I had not heard called this before) made the most compelling argument that without surgery any movement for however long she lived would be excruciating.

The surgeon, not surprisingly, looked at me as if I were insane. Surgeons operate; they fix things — or they delude themselves into thinking they are fixing things.

In the end, Mom had the surgery, but when she nearly choked to death two days later because she couldn’t remember how to chew, I asked to see the palliative care doctors: Hospice was the only route left.

The author’s mom, Alice Ramsey, and son Andrew and the author’s dad, Frank Ramsey, with her other son, Christopher, in the late 1990s.

The hospice team at the hospital, in the county where Mom lived, and at her assisted living were phenomenal. And my being able to bring Mom back to her beautiful apartment, surrounded by a lifetime of carefully chosen mementos, was a gift to both of us.

A peaceful last hour

She lived for six weeks, eating next to nothing. In her last cogent conversation with me, I told her: “Mom, I just want you to know how much I love you.” And her reply, fully my mom, was: “Will you shut the hell up? I’m tired of hearing you say you love me, when you won’t kill me.”

She was ready. I was ready. And for six weeks, I sat with her, trying to calm her as she clearly hallucinated seeing dead people. Praying for her to die. Begging God to take her. Believing there was no God because how could a loving God allow her last days to play out this way? Thinking “What would be the harm?” in advancing the inevitable. And forcing myself to get up and go for a walk when the voice in my head asking that question became too loud.

In the end, Mom died in my arms, listening to music from the playlist I had made for her early in the pandemic. The last hour was incredibly peaceful, and it allowed me to forgive God some of the previous six weeks — and three years. I said some things that needed to be said and hoped she heard me.

The visceral reality of grief

But now, almost two months after her death, what I feel is not the relief I had anticipated. I go to the grocery store and have to remind myself not to buy bananas for her. Alexa, the voice assistant, still reminds me that I might want to order again the jellied fruit candy that she loved so much.

I feel adrift, untethered, without my mom to care for. As much as I resented the role of caregiver at times, I can’t help but think she would love to feel the warmth of the spring sun on her face; I can’t help but wish that we could go for one more trip to see the tulips at Brookside Gardens.

The author (left) and her sister Paula Antosik (right) with their mom Alice Ramsey at the author’s home in Silver Spring in 2020.

As much as I may have resented it, cursed it, allowed myself to become embittered at times, I did what I chose to do. And I would do it all over again, because sometimes, in the last three years, I made my mom laugh. Sometimes we sang a mean duet to one of those tunes on the playlist. Sometimes she admitted that she needed help and let me be the person who helped her.

And that’s the thing about grief and loss. They pay no heed to logic or reason. The rational statement: “Mom is at peace” can be absolutely true and completely irrelevant when juxtaposed against the visceral reality of grief.

I miss my mom.

Complete Article ↪HERE↩!

May 8, 2023May 8, 2023

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.”

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↩!

May 1, 2023May 1, 2023

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↩!

April 21, 2023April 21, 2023

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.

Complete Article ↪HERE↩!

January 27, 2023January 26, 2023

I Helped My Mother To Live and Later Die

— After begging her mother to live longer, this author later honors her mother’s wishes for how she wanted to be treated at the end of her life

Kathleen and her mother, less than two years before Mary Elizabeth’s death

By Kathleen M. Rehl

“Please don’t die now, Mom! I can’t handle two funerals back-to-back.”

In a panic, I squeezed my mother’s hand as I sat beside her bed. The hallway’s stark white light streamed through her doorway. Announcements crackled over an intercom as an equipment cart clattered past her room. Mom’s roommate moaned in her sleep before returning to rhythmic snoring.

Then, finally, a sweet-faced nurse’s aide said I could stay beyond regular visiting hours. Staring intently before she spoke, Mom said, “Your father came to me in a dream last night and told me it was time to let go and be with him again.”

Mom Loved Her New Life

Flashback to Dad’s death from colon cancer, a few days after his 80th birthday. After he passed, Mom moved over 1,000 miles from her house on a dusty, isolated road to live near me and my husband, Tom, in Florida.

She blossomed like the red roses she cared for near her apartment.

Leaving sadness and grief behind, she chose a sunny independent living apartment in a continuing care retirement community (CCRC). There she blossomed like the red roses she cared for near her apartment.

Mom made new friends fast, joined afternoon card games, shelved books at the community library, tended a meditation garden, participated in church activities, baked yummy chocolate chip cookies to share, traveled to visit a few relatives across the country, and enjoyed an occasional happy hour glass of sangria with girlfriends.

In addition, Tom and I included Mom in many local activities. “I love my new life here,” she often said. Mom’s newfound happiness lasted almost two years.

Life Changed

A serious fall interrupted Mom’s joyful journey. After spending Thanksgiving with Tom and me, my mother fell in her apartment, shattering her femur. Mom’s next-door neighbor’s frantic phone call brought the ambulance.

At the hospital, we authorized emergency orthopedic surgery. A few days later, she transferred to her CCRC’s skilled nursing care wing, with weeks of physical therapy scheduled. Her spirit was crushed.

I was devastated, of course, but the knockdown punch to the gut hit in early December. That’s when my husband visited his doctor, feeling unusually tired, with jaundiced skin and abdominal pain. He called me at work later, saying he’d been admitted to the hospital for specialized testing.

I bolted from my desk and didn’t return to it for many weeks. Meetings and phone calls with a medical staff filled our coming days. By week’s end, we knew his diagnosis was a callous killer — late-stage inoperable and untreatable liver cancer.

His prognosis was death within a few months. My 72-year-old husband chose home hospice care rather than a war he couldn’t win.

Mom Rallied

“All right! I won’t die now,” Mom said from her nursing home bed when she understood Tom’s death sentence. And that’s just what she did.

Mom mustered her petite body’s life force, willing her health to improve.

She completed prescribed physical therapy, navigated with her fractured leg plus a walker, and moved back into her apartment with daily assistance from an aide and friends.

I boomeranged between caring for my mother and my husband. Then, Tom’s progressive downward spiral gathered speed while Mom’s condition stabilized. He died in my arms on February 12, 2022 with my brother beside us both.

A packed church celebrated my husband’s life. Mom sat near me as I stood in the funeral’s receiving line, both brokenhearted.

Years Before, We Talked About Care Preferences

“I don’t want you kids to have to pull the plug on me someday,” Mom said over a decade before.

Several years before Dad’s death, our family discussed health care preferences if we experienced a severe illness. My mother had once carried the burden of being the one who authorized disconnecting her aunt and mother from life support after each suffered debilitating strokes.

“I didn’t know what they would have wanted because we never talked about topics like that back then.”

“I didn’t know what they would have wanted, because we never talked about topics like that back then,” she said. Mom felt she “killed Aunt Frances and your grandmother.”

Dad, Mom, Tom, and I completed the Five Wishes advance care planning document years before we updated our estate plans. It’s easy to understand, covering one’s personal, spiritual, medical, and legal wishes at the end of life.

In addition, it identifies the person designated to make care decisions when you can’t do it yourself. After my father passed, Mom revised her plans, naming me the primary health care agent.

The Beginning of Mom’s Ending

After my mother told me about her dream of Dad, she didn’t speak of that vision again until Tom died. Then her health plummeted within a month. Complications put her in the hospital again.

Two older adults getting off a bus. Next Avenue, caregiving for mom — Mom and Tom in St. Petersburg

That’s when she repeated that Dad was preparing to welcome her. She wanted to go. Tearfully hugging my mother, I told her it was OK. I understood. I wouldn’t hold her back.

They requested my mother’s advance health care documents when she was admitted to the hospital. I gave them a copy of her Five Wishes form, verifying she didn’t want life support treatment to keep her body alive when she was close to death.

Even though this paperwork was accepted and filed, Mom’s plans were almost upset when she went into immediate cardiac arrest in the middle of the night. Finally, exhausted, I left her hospital room to go home for a shower and a few hours of sleep. But a hospital nurse called after midnight, saying they were taking Mom to the intensive care unit (ICU) for life support.

“No! That’s not what she wants! Read her advance care directives!” I yelled over the phone. “I’ll be there as fast as I can. Please don’t move Mom!”

I pulled on my jeans and raced for the car, driving in the dark over the speed limit. I ran to her room with a copy of Mom’s Five Wishes form. Assistants started rolling her bed into the hall on the way to the elevator and the ICU.

Committed to Her Wishes

The nurse said she needed to get the doctor. He looked over the forms, stepped away for a few minutes, and returned to ask what I wanted. “Plain palliative care, please!” I answered.

I encourage you to avoid heartache and upset as you consider what you want and do not want for your end-of-life care.

Fast forward. That’s precisely what happened, with my mother moved into a private hospice care room. My brother and I were allowed to camp with her in that room for the remaining three days of her life.

We facilitated a few short phone calls with her family, sang to her, read her favorite scriptures, and monitored her morphine. Then, before slipping into her final slumber, she told us of a clear new vision, where she saw relatives waving from across a bridge and preparing for a party.

“They have to wait for me to cross over that bridge before starting the festivities,” she said. Tom and my Dad were in that welcoming crowd, along with her mother and aunt. She finally said, “Awesome!” as she crossed her bright bridge.

Most Don’t Have End-of-Life Conversations

In June 2020, the National Poll on Healthy Aging was conducted for the University of Michigan’s Institute for Healthcare Policy and Innovation. A sample of U.S. adults aged 50–80 was asked about their advanced care planning.

Nearly two in five adults aged 50–80 had not discussed their health care preferences if they experienced a severe illness. More than two in three hadn’t completed an advance directive and durable power of attorney documents.

More than half of the folks who had not talked about their care preferences with others or completed related legal documents said it was because they needed to take the time to do this.

I encourage you to avoid heartache and upset as you consider what you want and do not want for your end-of-life care. I hope my story encourages conversations with you and your loved ones. It’s a precious gift you can give them.

Complete Article ↪HERE↩!

January 4, 2023January 4, 2023

A new approach to older people’s end of life care

— Living and dying well

Remodelling palliative and end of life care requires different ways of working, different partnerships and a sharing of power

By Caroline Nicholson

Global ageing means that death is now most commonly an event of older age. For most older people, the nature of living and dying in later life will be frailty and multimorbidity (MM – the co-existence of two or more long-term conditions).

Frailty is age-related and describes the gradual loss of inbuilt physiological reserves that leads to sudden, potentially fatal health deteriorations following seemingly small events, such as a minor infection. Frailty and MM increase the risk of dying in older age; those with severe frailty are five times more likely to die within a year than non-frail elders. However, the fluctuating progression of frailty, often over years, can make it hard to proactively identify when an older person is in their last year of life which is often a marker used as a referral to palliative and end of life services. Access to palliative care for all people with life-limiting conditions is recognised as important at the highest policy level. However, the experience of older people nearing the end of their lives is often poor. Many older people risk over-treatment to prolong life, and under-treatment from palliative care; actively addressing quality of life and person-centred needs and care goals, when a cure is not possible, is too often poorly handled.

Providing end of life care for older people – moving beyond prognosis

Prognosis, estimating when someone is likely to die, can help to facilitate future care planning conversations and support patient-centred care goals and conversations with loved ones. However, the assumption that time to death should, and can, trigger end of life care is problematic. Evidence suggests accurate prognosis is difficult: overestimation is common and temporal estimates are mostly inaccurate. Prognostication is particularly difficult in older adults with frailty, where there are no standardised and evaluated models and markers to support end-of-life identification. Time-based approaches for referral to end-of-life/palliative care services are increasingly questionable. Rather, end-of-life care provision for older people should be focussed on a holistic formal assessment of need and tailored care. This is the focus of the University of Surrey’s Living and Dying Well research programme.

“Living And Dying Well” research

Our work is focused on the duality of older people living and dying well over a life long-lived. Currently, older people with frailty too often fall between services either focused on living independently or imminently dying. Our work has evidenced the centrality of any end-of-life care responses to take account of the strengths and capabilities of older people, including their social connections, as well as any potential and actual vulnerability. All too often, care interventions can leave an older person feeling trailer, experiencing a sense of being “done to” rather than “cared about”. We focus on older people living at “home”, the place of preference for most older people. Core Activities include:

Evidencing specific needs and tailored care for older people at end of life

The HEE/NIHR funded PALLUP study evidences the specific end-of-life needs of older people with frailty and current service responses. This evidence will be translated with key stakeholders to develop a service framework and resources to support tailored care. A scoping review of published literature evidencing the perspectives of older people with MM supported a consensus exercise to gain agreement on the core needs of older people with frailty at end of life.

Data from facilitated virtual interviews with older people and their families and a two-round online survey with health, social and voluntary services and family carers was analysed. Needs were grouped under physical, social, practical, spiritual, and physical domains. Most consensus across all stakeholders were predominantly in the social and practical domains. The Top 5 identified needs were, 1) Trust in care providers – to be recognised as a person 2) Not to feel lonely 3) Opportunities to discuss current and future care needs 4) Support with medication – administration and optimisation 5) Services and interventions to support mobility. Key to meeting needs were the role of family carers who were often unsupported and under great strain.

The PALLUP film trailer can be accessed here and the full film by completing the film registration form here.

Reconfiguring and resourcing care services including “family”

The NIHR Palliative and End of Life Care Research Partnership is working in 3
areas in England to grow a research partnership of care providers across sectors that will improve the coordination of end-of-life care for community-dwelling older people living with advancing frailty. Social, voluntary and health care, and representatives of older people and family carers are involved. Resourcing services includes developing tailored tools to support older people and their family to articulate their needs and for these to drive care provision. The Pro-frail study will develop a PROM/PREM specifically addressing the needs of older people with frailty in the community.

Our work is also developing resources to support the increasingly essential role that family or, perhaps more accurately, unpaid carers, play in the care of older living in the last phase of life. The dual expert study is supporting family decision-making at points of uncertainty.

In conclusion: end of life opportunities and challenges

It is a source for great celebration that most people will live and die in older age. In England, new legislation denotes that end of life care is no longer a sub-speciality, but a universally required service. There is a moral and clinical imperative for palliative care services to contribute to the support of people with frailty and MM as they near the end of their lives. Remodelling of palliative and end of life care services requires different ways of working, different partnerships and a sharing of power to enable a focus more on need rather than diagnosis and prognosis.

Complete Article ↪HERE↩!