Month: March 2021

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On life, death and dying

Theresa Hamilton plays tic tac toe on a window with a senior in Mt. Cartier Court as the pandemic limited in-person visitors into senior care homes.

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Theresa Hamilton wants to help people die better.

“I find that I am a magnet to it and I really care and I want to talk to people about sad, happy, absolutely everything,” she said. “When you keep death natural you get to see the beauty in it.”

Hamilton works as the executive director for the Revelstoke Hospice Society and as a death care practitioner, also known as a death doula. She hosts monthly death cafes where people can ask questions and talk freely about dying.

“I want to teach as many people as I possibly can what they have within themselves, and I have seen how, when you do a lot of the work around creating quality of life for people before the end of life, or creating rituals or ceremonies or being able to create a legacy project with somebody before they have died, that always ends up helping the grieving process,” she said.

Hamilton and her partner bought a home in Revelstoke in 2016, but had spent the previous five winters in the city, going back and fourth between here and Grand Bend, Ont.

For five years she worked at the La Baguette at RMR.

“I was immersed in everyone riding and loving the ski hill. I think just being a happy face in people’s daily lives just really kind of launched me (in the community),” she said.

But eventually she felt she had to put her education to use.

Hamilton originally went to university intending to be a social worker. There she discovered thanatology, the scientific study of death and losses.

She also completed Indigenous Studies, which changed her views on dying and made her realize how much she had to unlearn.

“It is a more holistic method than we are used to,” she said.

Hamilton has been volunteering for hospice societies in every town she’s lived in.

“I really admired how small and mighty they were,” she said.

Revelstoke was no different, and with the previous director stepping out, Hamilton was tapped to take over. Though she is now paid by the society, she said she probably volunteers more now than she did before.

Hamilton also helps with Community Connection’s Food Recovery program, the Revelstoke Snowboard club and the Revelstoke Performing Arts Centre, when they are operating in-person.

“I just think that volunteering is your daily vote for democracy,” she said. “I am creating the world that I want to live in.”

Hamilton is also an activist and she supports everyone’s projects.

“Social justice anything is always on my radar because I think we have safety in numbers,” she said.

With all these causes under her belt, she often gets labelled a “Mother Theresa” type, which is something she brushes off.

“I don’t see it as being amazing the way my friends tell me it is amazing, it’s just like, ‘Yeah, but, that’s life,’” she said.

However, the namesake she is happy to claim is her grandmother Theresa, who she never met, but who also did death care work through the Catholic church.

“It’s really nice to know that I am fulfilling my ancestors roll,” Hamilton said.

Complete Article ↪HERE↩!

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Breathing new life into dying

— our moral imperative to reckon with the concept of death

A 16th-century drawing by Hand Baldung Grien depicts a German mercenary speaking with Death. As pandemics swept Europe, stories of hungry and vengeful undead grew in German-speaking lands and may be reflected in burial practices.

By Madeline Hsu

Death is ever-present these days; now, one in three Americans personally knows someone who has died of COVID-19. Before the pandemic, we heard about incidences of mass deaths due to illness in the context of far corners of the globe, safely out of reach. We were insulated from death and could afford to ignore it, sweeping it into a corner of our uneasy minds. Now, death is close to home, and the time is right for dealing with the cultural discomfort it engenders. 

There are multiple problems with the way we view death as a culture, and the pandemic poses an opportunity to evolve in how we think about death and practice death-related rituals. This unique moment is also an apt time to examine our history and try to understand how exactly we came to be this way.

One pressing concern about our death practices is the deleterious effect on the environment that they have.

“You might be surprised at how much environmental damage a person can do after they’re dead,” Erin Blakemore writes for the Smithsonian Magazine.

The prevalent use of embalming chemicals is of chief concern, as pumping these toxic and carcinogenic chemicals into the environment runs the risk of polluting groundwater and harming the living. While certain groups within the U.S. do not embalm, such as those from Orthodox Jewish communities, a disturbing majority of American burials do.

Many of us are relieved about the promise of a reversal in climate policy after watching with horror for four years as the Trump Administration systematically unraveled hard-won environmental protections and regulations. The administration of President Biden has made a commitment to taking ambitious measures to mitigate climate change. With our new commitment to sustainability as a nation, the time is right to consider the environmental impact of the dead and find new, greener solutions.

There are several ways to do this. Of the sustainable burial practices that have emerged in recent years, several stand out as particularly good alternatives to the status quo. One example is the burial pod developed by Capsula Mundi, which uses a corpse’s process of decay to feed a growing tree. This example presents the comforting and poetic idea of creating natural growth, a concept which could perhaps offset the shock of the transition from the casket-and-embalm procedure.

Composting bodies is a concept that has gained momentum recently.

“Within months, your loved one can become soil for your garden,” Molly Glick writes for the Sierra Club. Once placed in a special cylinder that periodically rotates, a corpse is combined with “a blend of fungi, protozoa, and bacteria to accelerate the breakdown of remains.”

The environmental concern brought up by death goes hand-in-hand with a more ideological and existential concern. We go to great lengths and do harm to the environment to embalm and beautify corpses, giving them luxurious boxes that are sealed and prevent degradation of the body. In this way, we deny death. We refuse death and fight it, but what better time is there than in the midst of COVID-19 to reassess our relationship with death? Perhaps this is an opportunity to deal with its environmental repercussions as well as challenge our deep-seated discomfort and rejection of the fact of death in our lives. 

Perhaps a cross-cultural comparison would yield some insights. Many of the inhabitants of our neighbor, Mexico, have historically observed Dia de los Muertos (Day of the Dead), which involves a celebratory rather than funereal attitude and embraces acceptance of death as an undeniable part of the life cycle. Pre-COVID-19, I was fortunate enough to attend a Day of the Dead celebration hosted by the San Francisco Symphony. Marveling at the revelry, I was struck by the positive emotional effect of combining music with costume, color and a sense of joyful spirituality to tackle this taboo topic. Whereas Mexican culture welcomes “spirits” who reunite once a year with the living, our culture fears and abhors the idea of the dead.

The only time we seem to set aside to deal with death as a culture is mainly in jest, at Halloween. We trivialize death and have no meaningful or unifying cultural practice to deal with this most basic and profound of human events, a universal event that touches all lives.

It isn’t completely our fault that we’re so ill equipped to deal with death. We have inherited a discomfort with the topic. It might be worth noting that certain religious views surrounding death help to explain why we’re so steeped in denial. The “life after death” concept crosses cultural and religious boundaries. Like the Egyptian pharaohs, we endeavor to take our worldly possessions with us, including clothing and makeup-enhanced features, as we voyage into the proverbial afterlife in comfy, cushy coffins. This attempt to simulate life-like conditions reflects our pervasive discomfort with the idea of death.

The bottom line is, we have a moral imperative to deal more responsibly with death. It is long overdue and COVID-19 has highlighted this reality. By gaining some comfort with the fact of death and confronting our resistance to dealing with it, perhaps we can gain some confidence about being able to handle the entirety of the life cycle and have some measure of acceptance where before there was only denial.

Complete Article ↪HERE↩!

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Facing Terminal Cancer

Support helps families come to terms with looming loss

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Last April, Rogers Park resident Aisha Luster got the biggest shock of her life when she learned that her father was diagnosed with stage 4 esophageal cancer. “He didn’t tell me or my older sister,” says Luster, 37. “We were crushed. We felt left in the dark. It was devastating.”

Within two months of sharing the gut-wrenching news, Luster’s father died. “He spent the last week of his life in a hospital alone due to Covid,” Luster recalls. “That was one of the worst days of my life. I never knew I would lose him. I have definitely been affected mentally, physically, and emotionally. It still feels like a bad dream I can’t get out of.”

Luster’s father was one of an estimated 606,520 Americans who died of cancer in 2020. Grief, depression, panic, and anxiety — for both the individual and their family — are common when dealing with terminal cancer.

Facing imminent loss is not easy. Yet, end-of-life support from palliative care services, such as hospice care, can help patients and their loved ones cope with these emotions and prepare them for what to expect.

End-of-life discussions

Talking to family members about their wishes can help make choices easier for caregivers.

“Families are under an enormous amount of stress, especially if the medical problem came suddenly and they didn’t have any opportunity to talk to the patient or to anticipate the problems,” says sociologist Susan P. Shapiro, a research professor at the American Bar Foundation in Chicago and author of Speaking for the Dying: Life-and-Death Decisions in Intensive Care.

To watch their body breaking down before your very eyes definitely had a huge impact on me.”

End-of-life discussions establish transparency and prevent misinterpretations of the individual’s final wishes, she says. “When patients never spoke to family members in advance about what they wanted, family members were very, very torn about what they should do.”

For those living with terminal cancer, coming face-to-face with their looming mortality can be painful.

Between 15% and 50% of cancer patients experience depressive symptoms, according to a review article in the journal Dialogues in Clinical Neuroscience. Depression in cancer patients contributes to physical and psychological problems, it says. And depression may be associated with higher death rates.

Christine Schwartz-Peterson, MD, is a hospice medical director at JourneyCare, a hospice and palliative care agency that’s headquartered in Glenview and serves 13 counties in Illinois. Part of her role involves caring for terminally ill patients who experience depression or anxiety.

“Our patients and their loved ones are going through tremendous loss while on service with us,” Schwartz-Peterson says. “Our skilled hospice teams, which include social workers and chaplains, are trained to recognize this pain and help support them throughout this difficult time.”

Social workers provide resources such as emotional support, counseling for patients and caregivers, and funeral planning that reflects the patient’s final wishes. Chaplains, tasked with easing spiritual healing through physical and emotional pain, aid patients and families with some comfort in spite of illness.

Relying on such services helped Lombard resident Melissa Schmitz.

In 2016, when she was 44, her father was diagnosed with stage 4 pancreatic cancer.

“There’s really no way to prepare for that. To watch the person you love, who has always taken care of you your whole life, to watch their body breaking down before your very eyes definitely had a huge impact on me,” Schmitz says. “But there was nothing I could do to actually fix it or help it, and that was devastating for me.”

Ultimately, palliative care, which supports patients and their families, enabled her to reach peace with the end-of-life process. As her father’s cancer progressed in the last weeks of his life, the Schmitz family decided to move him to hospice care. 

With the help of hospice physicians and social workers, Schmitz was able to provide her father with individualized end-of-life care. “I was pleasantly surprised. I didn’t want him to be in a hospital room, and he didn’t want to be in a hospital room,” she says. They all achieved a measure of peace. “JourneyCare allowed me to basically move in for the last couple of weeks. I never had to miss a minute with him. And that was wonderful.”

Supporting the overlooked

It’s important to support the mental health of family caregivers as well as patients, says Dana Delach, MD, a JourneyCare physician specializing in hospice and palliative medicine. Caregivers, who are often physically and mentally exhausted, can be overlooked when someone is dying.

Friends and family can step in to listen, care, and offer support. “If you know someone who is a caregiver, it is important to ask how you can help,” Delach says. “Sometimes the best gift you can give a caregiver is the gift of being present. Truly present. Sit with them while they provide care. Be a person to listen as they express their myriad emotions.”

Like Luster and Schmitz, Lincoln Park resident Simone Malcolm understands the signifi-cance of addressing family mental health during this difficult time.

In 2010, Malcolm’s mother revealed to her that she had breast cancer. At the time Malcolm was 20 years old. “When my mother first told me of her diagnosis, I was devastated because I thought I was going to lose my mom. I was scared, and because of that, I wasn’t there for her as I should have been,” Malcolm says. “I put a lot of my focus on school, my friendships, and hanging out. I acted as if everything was normal and I didn’t have a sick parent.”

Complicating matters for Malcolm’s mother was that she was initially misdiagnosed. By the time she was properly diagnosed, the cancer had reached stage 3. “My mother was hopeful that she would beat the disease,” Malcolm recalls. “Because of this, we did not speak about what would happen if she was to become incapacitated.” Her mother passed away later that year.

Drawing from her experience, Malcolm offers recommendations for those facing the same situation she did a decade ago. It’s important to be present for loved ones and involved in their care, she says.

“The advice I would give is to make sure the family stays on top of doctor’s visits and make sure they ask a bunch of questions so they are informed,” she says. “Also, be there for your loved one. They need all the support and love.”

Complete Article ↪HERE↩!

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How can we grieve our loved ones without our traditions?

By Niamh Delmar

In Ireland, wakes, removals and funerals have been an integral part of our culture. Giving the deceased a ‘good send off ‘ has been a final tribute to those who have passed. Offering our condolences, food and practical help is an inherent part of our culture.

In the past, churches have heaved with mourners and locals gathering to pay their respects. Celebrations of life, humanist services and scattering of ashes have facilitated a communal mourning. Over the years, soup and sandwiches in the pub after, morphed into meals in a hotel.

The rituals of a burial or cremation are an important part of our humanity and the grieving process. As well as handshakes, hugs and pats on the back, mourners meet people who knew the deceased at different times in their lives. Life stories are elaborated on.

The rituals of a burial or cremation are an important part of the grieving process.

The Irish wake has been passed on through generations. It facilitates the dead and the alive to come together. Traditionally a room in the person’s house is prepared, beside a window to let the spirit leave to its eternal journey. Candles are lit at the foot of the person and the corpse is dressed in their best clothes with rosary beads in their hands.

Prayers, tears, laughter, song and drinking all feature in the presence of close family or the whole neighbourhood and friends. Historically, the deceased was kept in the room for three nights with someone always attending it. There was a lead keener who would cry over the body then others would join in and wail. A wake is a mix of sorrow and celebration, but sadly has been curtailed by this pandemic.

COVID-19 has hijacked our customs around death. Rituals, such as kissing the deceased, open caskets, condolence books and even transport to the funeral have all been impacted. Churches that once heaved have now just a few pews filled with masked mourners while everyone else is watching or crying at a screen, lining a road or standing outside. The solace of connection has been taken.

Mary Cunniffe, branch manager with Massey Brothers funeral directors talked with me about the adapting they have experienced over the past year. Supporting employees at this ‘other’ frontline has been a focus as they have been exposed to suffering, while also trying to keep themselves safe from infection. Some have vulnerable people at home living with them.

Mary commented that grief has been compounded by not having had a chance to have said their goodbyes or words that were left unspoken. People have not been able to give the large repose to honour their dead. Another fall-out from restrictions is that people are unable to visit the bereaved, help hold their grief, or help with practicalities.

All of this is part of the grieving process and eases the suffering. Crying on a shoulder, sharing a cup of tea or a drink, recounting stories about the deceased carries those mourning. Landmarks such as death anniversaries, the deceased birthdays and significant dates have passed unmarked. Suffering and loss has traumatised our nation.

Dying during the pandemic with social distancing and other measures goes against our core nature. Grief has been intensified among those who are left to handle the idea of their loved ones dying alone. Holding the hand of a dying person is comforting to both.

It exacerbates grief when those close to the person can’t attend to their needs, get to know the doctors and nurses or advocate for them the same way. The role of human contact in dying and grieving is powerful. Health care workers have borne the additional brunt of this pandemic by witnessing patients dying without the usual presence of loved ones.

End of life
It is time for dying, funerals and grieving to be looked at in different ways and for us to be prepared for the aftershocks of COVID and non-COVID related deaths during this pandemic and its restrictions. Conversations can be initiated to ensure choices are made and wishes observed.

More palliative care at home is of enormous benefit to overstretched hospitals and provides comfort to the dying and their loved ones. Sharon Foley CEO of the Irish Hospice foundation has said that surveys reveal 75% of people would like to die at home but only 25% do. 

More personnel, such as Chaplains and end of life carers, are needed in Hospitals and play a significant role at the end of life and also play a supportive role to the medical team.

Hospices provide holistic care and dignity to the patient, and look after the needs of loved ones. More of this type of intervention is needed. Ten million euro was awarded to the voluntary hospice sector recently which helps bolster the loss of fundraising monies.

Studies have shown that simple acts such as sitting, rather than standing, at a patient’s bedside can have a positive impact. Open communication between healthcare workers and families is essential. Gathering information about the patient’s life story, likes and interests can facilitate connection with those who are treating and caring for them.

End of life can be personalised with photos of the person nearby, their favourite music being played and the use of technology for loved ones to be in regular contact. The medical team can have their photos and names on their uniforms to ease the distress of being treated by people in full PPE gear. Hospice professionals assert that hearing is the last thing to go so talking, music and other aural activities can be soothing interventions.

Grieving
While public health is a priority, limited visitation policies and funeral restrictions need be constantly reviewed to provide dignity to those who are nearing the end of life and solace to those grieving. Restrictions compound the process of grieving, increasing the risk of various psychiatric conditions, such as PTSD, depression, anxiety and suicidal ideation.

It also increases the risk of complicated grief or prolonged grief disorder, as not being able to say goodbye to a loved one is a risk factor. It helps if the funeral can be personalised with input from those who can’t attend and a virtual platform can be arranged where people can leave messages, memories, poetry, song and photos in honour of the deceased.

Outlets for children to express emotions can be encouraged. Regular scheduled virtual meet-ups to remember the person’s birthday, anniversary and other landmarks maintains connection. It is never too late to have a memorial, and some people I have spoken with are planning these at a later, safer stage to celebrate the person’s life.

Professionals involved with the bereaved can benefit from training in grief counselling and assessing complicated grief. We all need to be mindful of how we use the word ‘loss’. It has been thrown out there carelessly. While there have been so many losses experienced throughout this pandemic, the loss of a holiday is not at the same level as not being able to be at their loved ones bedside at the end.

Health care workers and the frontline
Counselling is also essential for those who have been at the frontline and exposed to trauma. Compassion fatigue is intensified, without the support of families being present, while a patient is ill or dying. Comforting patients with the barrier of PPE, having difficult conversations and substituting loved ones is a huge emotional responsibility. And moral injury is a systemic problem when frontline workers become frustrated as they are unable to provide care, at the level they were trained, due to constraints.

Significant distress arises when a person has to go against their value system. Psychological PPE is fundamental to protecting the mental health of the frontline. It involves assessment, identification, intervention and monitoring of staff. Debriefings, peer support, support groups, self-care practices have all been found to be beneficial.

Professor Neil Greenberg, Consultant Occupational Psychologist, trauma specialist and Forensic Psychiatrist at King’s College London has called for better identification of vulnerable workers and access to evidence- based treatment. Many others are involved in end of life care such as the funeral sector, clergy, carers and social workers.

There is, and will be collateral damage, but the systems in place within each setting can alleviate adverse symptomatology.

Communities, individuals, society, organisations and policies can interconnect to provide end of life dignity, ways to facilitate after life rituals and identify and support the bereaved. Ar dheis Dé go raibh a n-anamacha.

Complete Article ↪HERE↩!

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Embracing the Role of the Death Doula for Your Hospice Patients

Meeting people at the end

by Daniel Morris

Many people know about the role midwives and doulas play in managing pregnancy and childbirth, but few are familiar with the concept of the death midwife, also known as a death doula. This person helps patients and their loved ones cope during the end-of-life phase. Life and death are both natural processes, but many people struggle to come to terms with the emotional difficulties of dying. Your homecare agency can enhance emotional support during this time by hiring a death doula to accompany your services.

Let’s go over the role of death doulas and answer some questions about how they operate and how they can deepen your homecare agency’s services during the end-of-life process.

What is a death doula?

A death doula helps manage the transition between life and death. During this time, a doula may act as a companion to the dying patient or as an advocate for the family’s needs. By nature, this role is holistic and highly personal. It depends a great deal
on what extra support the patient and family may require.

Death doulas are becoming more popular because they are filling a need created by the way families and communities are currently structured. In the past, communities were closer-knit and family members were nearby; today, that may not be the case. Death doulas can play a key role in bridging the gaps that can arise in companionship and end-of-life care, especially when a patient chooses to die at home.

What services does a death doula provide the dying patient?

A death doula will work to comfort the dying patient and coordinate legacy activities. Some common activities may include:

  • Listening actively, leading light conversation, answering a patient’s questions, helping them find peace
  • Providing comfort through reading and companionship
  • Using anxiety-reducing techniques such as guided visualization, meditation and massage
  • Refreshing their room with pillows, candles or beloved objects
  • Suggesting and supporting legacy projects, gifts and/or letters
  • Discussing end-of-life wishes

What services does a death doula provide the family?

A death doula works closely with family members to meet their needs during this difficult time. Many family members describe a death doula as a calming, supportive presence in the process. A death doula can provide a variety of support options, including:

  • Identifying the needs/preferences of the family
  • Providing respite care
  • Discussing end-of-life planning, such as advanced care directives, vigils, after-death body care, funeral planning and memorial services
  • Planning last hours of life, including goodbyes and favorite activities
  • Suggesting and supporting legacy projects, gifts and/or letters
  • Facilitating difficult conversations and advocating for the family’s rights
  • Coordinating domestic care, such as housekeeping, lawn care or pet care
  • “Just being there” to provide companionship and support

In addition to the acts of care listed above, a death doula can be beneficial to the patient and family in other ways. Often a professional caregiver isn’t there 24/7, so there are long breaks when a patient may be alone. Death doulas can cover some of these hours, providing comfort in those final weeks of life.

Death doulas may also provide emotional and spiritual support that is missing from the traditional hospice care experience. With their mere presence, a death doula can provide a shoulder for a family to lean on.

Why should home hospice providers partner with a death doula?

Your home health and hospice agency may need extra support during the end-of-life phase, as the act of dying can be a time for all hands on deck to ensure patient and family comfort. In this case, you should reach out to a death doula. They will listen to both your agency’s needs and the patient’s needs to create an end-of-life care plan that works for you and the patient. It’s important to find a doula that you and the family feel a certain chemistry with, as this person will be involved while care services are performed.

Home hospice providers who have experience working with death doulas find that it’s great for enhancing the end-of-life experience. A death doula will coordinate with your agency’s hospice nurses and workers to fill care gaps and provide more emotionally oriented activities for the family and patient. They should work closely with family and professional caregivers, taking the time to understand the caregivers involved and coordinate with them to provide end-of-life care. It’s also common for doulas to get a clear sense of caregiver gaps, such as respite care. You should work together in order to make sure that their services complement those your agency already provides. The overarching goal is for each patient to receive an enriching end-of-life experience.

Are death doulas certified?

It’s important to note that a death doula is not a medical professional and doesn’t have a medical role in a patient’s care. For example, they can’t prescribe pain medication or take vitals. Instead, a death doula provides emotional and spiritual support.

There’s currently no credentialing body for death doulas. However, all death doulas should have appropriate training. Training courses are offered by accredited organizations such as the International End of Life Doula Association (INELDA), the Lifespan Doula Association and the University of Vermont. When you search for a doula, make sure they have the required training.

Also note that death doulas aren’t typically affiliated with any particular religion. In fact, doula services are often designed to be universal. Whether your patient adheres to a specific religious tradition or not, a death doula can still be appropriate.

How do you find a death doula?

You can start your search for a death doula on the INELDA website, which lists trained death doulas by locale. I also recommend talking to friends and family about their experiences with death doulas. Ask your patients and their families if this is a service they would benefit from.

While being a death doula is a service to the dying patient, it is not typically a volunteer position; however, you may also be able to work with an organization that provides volunteer death doulas to work at some care facilities. Some death doulas will charge rates by the day or by the hour, or they may charge an overall fixed price. If you are bringing a death doula onto your staff, you should discuss pricing to understand how the service will affect the patient’s final bill.

Death doulas play a comforting role during the dying process. Consider hiring a death doula for your homecare agency to get the emotional support your patients need during their transition from life to death.

Complete Article ↪HERE↩!

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‘I will hold their hands’

— Chaplains give terminal COVID patients a chance to say goodbye

By Will Peebles

Two days after a parade-less St. Patrick’s Day in Savannah last year, Mayor Van Johnson declared a local state of emergency because of COVID-19. The next day, March 20, the Georgia Department of Public Health reported the first two cases of COVID-19 in Chatham County. In the year since, Chatham County has lost more than 350 people to the virus. This article is one in a series that examines how individuals have dealt with a year-long crisis and have helped pull the community through the pandemic.

Rachel Greiner remembers when the reality of COVID-19 truly hit home for her.

In June, Greiner, the director of Memorial Health University Medical Center’s Pastoral Care team, found herself making arrangements for a mother and daughter, both sick in the hospital with COVID.

The daughter, the more serious case, was on the hospital’s COVID intensive care unitfloor.

She was dying.

Her mother was on the floor above her, reserved for patients sick enough to be in the hospital, but not yet sick enough to require ICU care.

Greiner and her staff of chaplains worked to get the mother into her daughter’s room. They were together until her final breath, a powerful, truly human moment — a final goodbye.

“And it was, of course, a sacred time, very beautiful that the hospital worked in order to get this woman down to be with her daughter,” Greiner said. “And while that was happening, my phone was ringing, and it must have rang six times.”

While Greiner was making sure a mother could be there with her dying daughter, her own children’s daycare was calling. She stepped out, in full personal protective equipment, to return the missed calls.

The daycare told her one of the teachers contracted COVID, and was calling to tell Greiner her children had been exposed.

“Now, that’s so commonplace I would roll my eyes if they called me and told me that today, but at that juncture, literally standing at the deathbed of someone with COVID-19, hearing that my children had been exposed to it — that was probably the moment that I was like okay, this is really real now,” Greiner said.

As a chaplain, Greiner deals with heart-wrenching situations on a daily basis. And for the last year, there has been no shortage of difficult work.

It’s a misunderstood profession, Greiner said. She and her team provide spiritual care to patients in the hospital, but it isn’t a single religion — in fact, it’s not inherently religious at all.

“We call it a ministry of presence. Sure, a lot of the things that we do are religious in nature. People want to pray. And they ask, and of course, we say yes,” Greiner said. “But we don’t come in the room demanding that you bow your heads and pray with us.”

If a person is in the ICU at Memorial Health, they’re going to see a chaplain at least once during their stay. But COVID, as it so often does, complicates things.

Early on in the pandemic, Memorial turned an entire medical ICU into an ICU specifically for COVID patients. Nurses were sending their children to live with grandparents to avoid possible spread.

Chaplains are in charge of facilitating patient visits. Sometimes those visits are virtual — they hold an iPad with family members on video chat. Not long ago, Greiner did a call with 48 people as they said goodbye to a family matriarch.

But it’s not the same.

“There’s no substituting what it would be for these patients to hold the hands of their spouses or their children. But in their stead, I will hold their hands and hold the iPad over them so that their loved ones can say goodbye,” Greiner said. “And my hope is that as they are transitioning from this place to the next, that that’s what they’re hearing: the love pouring out of their family’s voices coming through the iPad to them.”

For in-person visits in the COVID ICU, adults get one visitor. For kids, it’s two.

But when they’re moved to end-of-life care, that number is expanded to five.

That’s a tough restriction for some families. Only two people can go to be with their dying loved one for 30 minutes at a time.

“Let’s say it’s a spouse, they’ve been married 50 years, they have six kids. Well, they only have four more spots left, so they have to pick their four favorite children. And then of those four, only one of them can stay with dad while mom dies,” Greiner said. “I understand the reasoning behind it. But it is no less difficult to explain over and over again, and to empathize and say how sorry you are that you can’t get everybody in.”

It can be exhausting, but Greiner’s job doesn’t stop there. Her pastoral team members aren’t the only ones putting in emotional work day after day: the nurses, doctors and staff at Memorial are in the thick of the pandemic, as well.

Greiner said while her job is patient-oriented by nature, a lot of her work involves caring for her coworkers, as well. She coordinates with Memorial’s Nurse Manager Amber Schieber to host Muffins, Moments and More, a get-together at the hospital where the staff leans on each other for support, talking through situations that affected them, Schieber said.

In the breakroom is a prayer, written by Greiner, framed by Schieber.

“Rachel has really been a rock for us during this pandemic. She’s so wonderful. She’s been there for our patients and the families and the staff,” Schieber said. ”If COVID has taught us anything, it’s to really lean on your family and your support system. And Rachel has absolutely been that for us.”

“I tell everyone, it is so important to establish a counselor of some sort, especially when you work in health care,” Greiner said. “You can’t care for other people if you’re not caring for yourself.”

For Greiner, self-care is paramount. It can take the form of a monthly check-in with a therapist or a pep talk from her family. Sometimes, it’s as simple as getting out of the house to go to her happy place: the beach.

“I have a family that supports me, my husband knows if I say it’s time to go to the beach, then it’s time to go to the beach,” Greiner said.

The emotional toll of her job is enormous, and it has been especially so for the last year. But day-in and day-out, she facilitates these sacred end-of-life rituals — these final goodbyes — for those most touched by the tragedy of COVID.

“It is difficult, but it’s also very humbling. I think that the ground we stand on at that point is very sacred, and it’s an honor to stand on it with these people and to help bridge the gap from wherever their families are to that room where they can’t be,” Greiner said. “To hold their hands and stroke their faces and tell them it’s going to be okay as they leave, it is an honor.”

Complete Article ↪HERE↩!

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“He Thought The Idea Was Hilarious”

— Director Kirsten Johnson On “Killing” Her Father Repeatedly In ‘Dick Johnson Is Dead’

Kirsten Johnson directs a scene with her dad for the new documentary, “Dick Johnson Is Dead.”

By Matthew Carey

The Oscar documentary shortlist abounds with memorable love stories—between a woman and her incarcerated husband in Time, between a man and a mollusk in My Octopus Teacher, and in Dick Johnson Is Dead, between a daughter and her aging father.

Of those three films, Dick Johnson Is Dead qualifies as the most unusual stylistically. Director Kirsten Johnson, faced with her beloved father’s cognitive decline, conceived various outlandish scenarios in which her dad might die, and then filmed them.

“The premise of the movie is that we were going to kill my father over and over again with the help of stunt people until he really died for real. Why? Because we wanted to keep bringing him back to life,” Johnson tells Deadline. “I think we desperately needed to laugh because dementia will rip your heart out and you could just cry for decades if you didn’t find a way to laugh at it.”

In one scene, an air conditioner falls from high above on top over her father, crushing him. In another he takes an awful tumble down a flight of stairs, ending up in a twisted heap. Dick Johnson, a man with a genial disposition, takes part in this filmic experiment with endearing enthusiasm.

“I think cinema is play. And my father is ‘game,’ he’s game to participate in this,” Johnson comments. “He thought the idea was hilarious and it was like, ‘Okay, we’re doing this.’”

Before encroaching dementia prompted his retirement, Dick Johnson worked for decades as a psychiatrist. Perhaps appropriately, the subconscious mind informed the documentary from the start.

“I had this crazy dream where there was this casket and a man sat up—it wasn’t my dad—he said, ‘I’m Dick Johnson and I’m not dead yet,’” the director recalls. “I probably did unconsciously understand that the dementia had begun. I wasn’t consciously aware of it at that moment, but I think in the way that dreams and brains try to tell you things, now when I think about it, it was an unrecognizable man who was my father, which is sort of what the dementia would do. I think in some ways that dream was like, ‘Wake up! Your dad is changing.’”

Johnson had previously gone through the agonizing experience of losing her mother to Alzheimer’s.

“Honestly, I was like so mad to have had my mom already have it. I was like, ‘Are you kidding me?’ I was sort of enraged at the idea of having to face it again,” she confesses. “It just felt like, ‘Let me come up with another plan, another idea, another way,’ this Holy Grail of, ‘Could this be a funny movie? Please?’ We had some fun doing it and we had some tears doing it.”

The Netflix film, a strong contender for an Oscar nomination, premiered last January at the Sundance Film Festival, where it won a special jury award for Innovation in Nonfiction Storytelling. It’s gone on to win multiple honors, including Best Documentary at the Critics’ Choice Documentary Awards, as well as best writing for Johnson and Nels Bangerter and best editing for Bangerter at the IDA Documentary Awards. Dick Johnson Is Dead was named one of the top five documentaries of the year by the National Board of Review and has earned a Producers Guild Award nomination.

On paper, the concept of the film might strike some as morbid. But audiences have responded emotionally to the film’s whimsical and yet somehow frank way of confronting the prospect of a loved one’s demise.

“From my point of view, facing pain—when you can do it with people you love and with the capacity to attempt to build something new out of it, whether it’s a new relationship or whether it is transformed into some form of art—I think that that is the only hope we have,” Johnson observes. “That, in some ways, is how we have survived as people—we sort of offer back out to each other these forms or witness.”

Dick Johnson Is Dead resonates forcefully in a time when Covid-19 has claimed so many lives.

“The pandemic in some ways has opened every human up to the experience of anticipatory grief. We don’t know how much we’re going to lose and we’re afraid of how much we’re going to lose,” Johnson says. “If you love a person with a degenerative disease [like dementia] you have a great deal of experience with anticipatory grief. You’re grieving about what you’ve lost already, what you might lose, what you’re not sure when you’re going to lose.”

That’s particularly difficult to contemplate in Johnson’s case, having a father who’s meant everything to her.

“He has treasured me for the person that I am and allowed me to be sort of as big as I wanted to be…He saw me. I think so many of us struggle with not being seen or not being allowed,” Johnson tells Deadline. “That’s who he is and who he was. Even in the advanced dementia now he’ll call me and say, ‘I just want to make sure you know I love you.’”

Complete Article ↪HERE↩!