Month: October 2020

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Don’t Grieve Alone. Reach Out.

Finding emotional support during a crisis often means turning to long-established networks already built for distance.

By Nicole Chung

In April, when my adoptive mother began to decline after months of battling cancer, I tried to show my love and let her know I was thinking of her through phone and Skype calls, gifts and handwritten letters. I was managing her finances and helping to coordinate her care, and often felt like I was having one long, sustained panic attack.

But friends kept vigil with me, lighting up my phone with support and listening when I called to vent or cry. Sometimes the distance made this easier — if I was awake and spiraling at midnight, I knew I could reach out to someone three time zones behind without waking them.

My mom died in May. Suddenly, I couldn’t bring myself to answer when people called to check on me. I didn’t understand why. Perhaps I would have felt hesitant to beg for support, given that everyone I knew was exhausted and overwhelmed by the ongoing pandemic, but these people were reaching out to me — why was I abandoning the communication that had been my lifeline for weeks?

A few days after my mother’s death, another friend called, and as I stared at the screen I realized that I felt nauseated; my heart was racing. I had developed a sense of deep anxiety about the phone because, for weeks, it had been my conduit for receiving and passing on gutting updates. Because I did not want to say the unthinkable words — “My mom is gone” — to even the most sympathetic listener. Because no matter how often the phone rang, it would never again be her.

One of the cruelest realities of this pandemic is that it has deprived so many of us the opportunity to grieve in the most familiar, instinctive ways. We can share stories, cry and laugh together over Zoom, but we can’t simply sit in quiet companionship or hold each other when words fail us. After my loss, I ran out of words to share; I couldn’t imagine calling anyone. How was I going to feel connected to others, find comfort and strength in my friends?

People near and far began to send sympathy cards, flowers, snacks, gourmet ice cream. My biological sister couldn’t be at my side as she was when my adoptive father died, but she checked in often and sent me soup and socks. One person gave me handmade jewelry in my favorite colors; another mailed a magnolia tree I could plant in my mother’s memory.

My friends Jasmine and Reese organized a group to record video condolences — a virtual shower of compassion and care — and, with tears rolling down my face, I played and replayed the messages, feeling held in the love of my friends and recognizing a clear invitation to reach out for more support when I was ready.

As it turned out, socially distanced grieving didn’t mean grieving alone — so many people found ways to offer support, as if they knew what I needed even when I didn’t. It occurred to me that most of them hadn’t needed to dig deep in order to understand what I was going through.

“After a trauma, one of the lingering shocks can be the feeling of aloneness that follows,” Juli Fraga, a psychologist, told me. “In this pandemic, that sense of aloneness might be softened because of our collective suffering — everybody needs support right now.”

For many of us, finding emotional support often means turning to long-established networks already built for distance. We may be weary or fearful now, freshly cut off from familiar routines and many forms of in-person support, but there’s still reassurance and solace to be found in distanced fellowship.

“At moments of peak fear and distress, we all think of connection and reaching out to people we love,” said Joy Lieberthal Rho, a social worker and therapist. “It’s part of that mass moment of reckoning in a crisis.”

As the pandemic drags on and our emotional reserves dwindle, we’re still doing our best to care for loved ones we can’t visit, sharing burdens, mourning losses, and celebrating tiny victories in long-distance communion.

Sometimes that means a call, just listening to and spending time with one another. Sometimes it means sharing resources or sending gifts, if we’re lucky enough to be able to do so — as my friend Jess put it, “Buying gifts for people who are going through hard times has been the only good thing this year.”

If you’re like me and have a hard time asking for help or naming what you need — especially now, when everyone you know is struggling — Ms. Rho suggests starting with “just one person who has been consistently good about reaching out” to you. “This gives that person positive feedback” for being such a good friend to you, she says, and perhaps they’ll be motivated to continue, or to let others know you could use extra support. Dr. Fraga says that asking for help can also give others permission to voice their own needs.

When it’s your turn to offer comfort or aid, Martha Crawford, a psychotherapist and licensed social worker, recommends asking yourself what is in your power to do and letting a loved one know that you have the emotional capacity to do it.

“With grief on this massive scale, we move through periods of time when we can function and periods when we can’t,” she said. “Try to honestly recognize where you are — when you have support to lend and when you have support to give — and then let people know where you’re at, and ask where they’re at.” She says this form of emotional resource sharing is in “the spirit of mutual aid.”

“It’s a little harder to make somebody feel they’re held in your care through electronic intermediaries,” Ms. Crawford added. “Maybe there is some pressure to try to offer more active support, suggestions or advice.” But the helping professionals I spoke with also pointed to the intimacy that can take root when we have a bit of physical distance, and at the same time get these powerful glimpses into each other’s homes and daily experiences.

“It can be hard not to meet face-to-face,” said Dr. Fraga, “but virtual meetings give me a new window into people’s lives, letting me actually see some of the things they’ve been talking about.”

At least once a day, you probably hear someone mention pandemic fatigue. The days seem endless, even as weeks fly by, and still there is no return to normalcy. Whatever it was that gave you strength or courage in the early days of the pandemic might be wavering now. Maybe you can’t bounce back so quickly. Maybe you shouldn’t — sometimes you need to stay down, take that extra breath, ask for help before you can figure out how to go on.

Whenever I rise and get back to it — to help my family, to do my job, to support my friends the way they’ve generously supported me — I often think of my mother, the person most responsible for showing me that love can defy distance and be an endless source of strength and resilience.

For decades, I watched her work hard to support us, care for her mother and my father, fight for her own survival and that of others. She believed in me so fiercely that I still feel her love and faith in the active, present tense, even though she is far beyond my reach. It’s that kind of support I want to extend to others now, sharing what strength and nourishment I can, even if I don’t know when we’ll share physical space again.

Complete Article ↪HERE↩!

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It should be easy for people to receive end-of-life care at home.

Why is it so hard?

By Charlotte Grinberg

“I want to go home with the time I have left. I want to be with my children.”

Susan was sitting in the sunroom of the medical oncology floor. A hospital blanket, the ones that are never warm enough, was draped over her shoulders and the shoulders of her older sister. You could immediately tell they were sisters, but also best friends. They looked healthy and strong, both in the sixth decade of life. But Susan had a tumor in her brain and would likely soon die from it.

This was a family meeting. Susan’s two daughters were also in the sunroom. Victoria, the older daughter, sat to the side, while Rachel sat next to her mother, holding her hand. They probably never imagined being in this situation in their 20s. I wondered if they were as close as sisters as their mother and aunt are.

I was there as a resident physician in a palliative care rotation. I quietly observed the other doctors, the case manager, and the nurse. Compared to other patients I had met on this rotation with cancer diagnoses, Susan was clear and comfortable with her decision to transition to comfort-focused care in her home. The point of this family meeting, however, was to explain to Susan and her family that this was not realistically possible.

“What do you mean I can’t go home?” she asked. “I want to be with my children.”

Susan’s tumor had damaged her ability to form short-term memories. She could walk, talk, and think, she just couldn’t remember things. She forgot to turn off the stove, and was often found wandering her neighborhood. She needed constant supervision to be safe.

Her daughters were caring for her, but also working full-time jobs. Rachel began to cry as she described weeks of waking up several times every night when mom came into her room asking questions. Victoria didn’t say a word. Maybe she felt guilty for living with her boyfriend instead of being with her mom and younger sister. Rachel cried even more when she described feeling detached from the world, scared, and overwhelmed by caring for her mother. It was that sense of being overwhelmed that led her to dial 911 because her mother still kept wandering outside. That’s how Susan ended up in the hospital.

With the rise of an aging population and the number of people with serious illnesses, the field of palliative and hospice care is growing. One of the many roles of palliative and hospice care providers is to learn the communication skills necessary to help patients navigate their wishes for end-of-life care. Also growing is the preference of patients, caregivers, and clinicians for patients to live their final days in the warmth of a home, away from the incessant interventions of hospitals.

At least for now, though, our medical system does not financially support caring for dying people at home the same way it supports caring for them in a hospital, rehabilitation facility, or long-term care facility. Patients who choose to leave the hospital for home hospice receive only limited services from their medical insurance through the hospice benefit. Families must provide or privately pay for all personal care services: bathing, dressing, eating, toileting, administering medications, and moving around, all of which are physically and emotionally exhausting for a caregiver and occur throughout the day.

When patients and families realize they must provide this care, some elect for ongoing hospital interventions or discharge to a rehabilitation center or long-term care facility. These options are paid for and so seem like the next logical step, even though their preference, and the patient’s, is to be at home.

It took a week to figure out a safe discharge plan for Susan. Her family members needed to visit the long term-care facilities covered by her insurance. Then they had to choose one, and the insurance company had to authorize her stay there. Given a mean hospitalization cost of $2,543 per day, this one-week delay may have cost the insurance company on the order of $18,000.

What Susan’s family really needed was assistance at home for 10 hours a day while they worked. Round-the-clock care costs an average of $480 per day, meaning that seven days in the hospital could have covered a home health aide’s salary for a month.

Unlike Susan, many patients aren’t discharged after one week. They stay in the hospital for weeks, even months, until they die because there is no safe discharge plan in place.

I’ve seen this situation again and again, and I’ve only been doing this for a few years: the patient is too weak or medically unstable to go to a rehab facility and no one is available to safely care for them at home. And now, in the era of coronavirus, which has called into question the nursing home industry, it is even more important to look into alternative insurance funding models for hospice at home as a potential win-win for insurers and patients.

Susan’s daughters and sister took leaves from their jobs to make possible Susan’s wish of being home with her family. It was too painful for them not to honor her end-of-life preferences. Yet they became overwhelmed, exhausted, and financially stressed, and eventually returned Susan to the hospital for placement into long-term care, which resulted in a second prolonged hospitalization.

If our health system provided what they needed — supportive, tailored home care — they could have focused on what mattered most: spending quality time with Susan during her last days.

Complete Article ↪HERE↩!

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Indigenous death doula mentorship program aims to teach youth to help others through grief

‘I just want to be able to support my family and my community [when] people die’

Kayleigh Lagimodiere and her mother Dana Connolly. Lagimodiere is one of 12 Indigenous youth who have been accepted into the Indigenous death doula mentorship program.

By Lenard Monkman

A new death doula mentorship program is being offered to Indigenous youth to equip them with skills to help others deal with grief and loss in their communities.

“It’s important for me to learn about this work because prior to colonization, I think we shared a different relationship with death. One that wasn’t so scary and fear-driven,” said Kayleigh Lagimodiere.

Lagimodiere, who is Cree, is 17 and one of 12 young people chosen to take part in the Indigenous Death Doula Program being offered by Blackbird Medicines in partnership with Canadian Roots Exchange.

A death doula is someone who supports people who are experiencing grief and or going through the process of death.

In January, Lagimodiere’s aunt Tracey Stevenson died and she got some experience doing death doula work.

“An elder from Swan Lake [First Nation] came and taught me how to prepare the body,” said Lagimodiere.

“That was like the first time that I had actually seen a dead body. Prior to that, at funerals, I wouldn’t go up.”

Lagimodiere said there have been a few recent losses in the family and they were having a hard time navigating through the grief.

“I just want to be able to support my family and my community [when] people die,” said Lagimodiere.

“I want to be able to help restore our practices that were there and to help people.”

The experience inspired her to apply for the Indigenous Death Doula Program, which was accepting applications from youth aged 12-29.

Lagimodiere said there were a number of different interest options that were available to applicants. She chose palliative care, harm reduction, cultural death practices, legacy planning and culturally grounded death and dying resources.

Indigenous grief

The program was started by Blackbird Medicines and its Indigenous death doula collective, which includes Connor Sarazin, Tasheena Sarazin, Colleen Cardinal and Elaine Kicknosway.

Founder Chrystal Toop, Omàmiwininì (Algonquin) from Pikwakanagan First Nation, started doing death doula work in 2018.

Chrystal Toop is the founder of Blackbird Medicines. The organization is offering an online death doula mentorship program for Indigenous youth ages 12-29.

“I come from the background of a full spectrum or a life spectrum doula worker,” said Toop.

“So I started out working with babies, pregnancy, things like that. But there’s just a huge demand on the other end, on that death spectrum.”

According to the website, Blackbird Medicines offer a range of services including virtual consultations, slideshows and videos for funerals, virtual funerals and aftercare to support people who have lost loved ones.

“For a lot of us, we came to this work because we were doing social services, front line work,” said Toop.

“Some of us have stories around missing and murdered men, women, girls, two spirit. And we have these personal experiences, so we recognize that Indigenous death doula work includes harm reduction from death.”

For the doula program, they are hoping to get more young people involved.

“The program itself is a gentle introduction to people, to support them,” said Toop.

It features two individual one on one sessions, as well as two group sessions with the whole collective, all of which will be done online.

Kicknosway said doing death doula work comes naturally to her. She has helped friends and family who have lost loved ones to cancer, but has also helped families go through things like suicide or other tragedies.

“What does Indigenous grief look like?” said Kicknosway.

“We need to make it a natural place to talk safely and to have spaces for this work.”

Complete Article ↪HERE↩!

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If a loved one dies, beware the ‘renter’s death penalty’

Landlord can legally ask for remaining rent on lease

By: John Matarese

If someone you love who lived in an apartment dies, you might assume the landlord will just tear up the lease.

But many grieving families find that is often not the case.

Carrie Davis is mourning the loss of her beloved mother and battling her mom’s apartment complex at the same time.

Despite her mother’s passing, Davis said Northwest Woods in Springfield Township, Ohio, still wants the equivalent of six months rent.

“They said we needed to sign a buyout agreement,” Davis said. “That could leave us paying a total of six months rent in order to get out of that one-year lease.”

She can’t believe the family has to keep paying for an empty apartment.

“The grandkids are not going to get the gifts bequested to them this Christmas in my mom’s will because we have to pay an apartment complex,” she said.

Law is on landlord’s side in most states

Although this might seem unfair, most states have laws to protect the landlord, not the deceased person’s family, when this happens.

Although the survivors are not billed directly, the dying person’s estate is, and sometimes their estate must pay 10 or 11 months rent on an apartment that will not be used.

Family law attorney Pavan Parikh said this is often called the “renter’s death penalty” — a penalty for dying.

“The law is pretty clear on this that when someone passes away, the decedent’s estate is still responsible for the full term of the lease,” he explained.

A handful of states such as Pennsylvania and Colorado have recently outlawed this, but Ohio, Indiana and Kentucky have not.

Parikh said he believes more states should look at changing the law out of compassion for grieving families.

“It is a scenario where the law needs to do a better job of contemplating,” he said.

We contacted the complex owner, Nexus Property Management, but were told “we have no comment” by the woman who answered. She would not put us in touch with the complex’s attorney.

Although Northwest Woods and Nexus Property Management has done nothing wrong in this case and legally have every right to ask for the remaining rent, Carrie Davis would like to see tougher laws to protect the survivors of those who pass away.

“We should protect our residents, our elderly, our disabled, and even our COVID victims, from incurring thousands of dollars in debt just for dying,” she said.

Attorney Parikh, meantime, says taking an apartment complex to court could cost more than the rent.

He suggests negotiating with the landlord, so you don’t waste your money.

Complete Article ↪HERE↩!

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Couples Care for Stillborn Babies for Weeks While Grieving, & We Need to Be OK With That

By Sabrina Rojas Weiss

When Chrissy Teigen lost her baby Jack last week, some disapproved of the fact that both she and her mother shared images of themselves holding him. Those people may be surprised to learn that some parents go even further when grieving a stillborn baby, choosing to visit and hold them for days or weeks. As October is Pregnancy and Infant Loss Awareness month, we want to help spread the word that this is one of many ways to grieve and memorialize a miscarriage or stillborn child.

“She was a fully grown baby and I kept thinking that she would wake up at any minute,” British mother Jess Mayall told the Sun of her stillborn daughter Ava. Her hospital in the U.K. allowed her to keep Ava in a refrigerated device call a CuddleCot for two weeks. That meant that she and her partner could hold her, take pictures with her, and even take her on walks in a stroller to say goodbye.

“The hospice was a life saver for us,” Mayall said. “The support they offered us really changed our experience and we are so glad that we were able to make two weeks’ worth of memories with her before laying her to rest.”

This is a practice some hospitals and pregnancy-loss organizations have recommended for bereaved parents, even sometimes suggesting they bring the baby home for a short time. While in the U.K., most hospitals have CuddleCots, there are parents and others hoping to bring more of them to the U.S., where often parents don’t even get to see or hold their infants after losing them.

The prospect of holding and caring for a deceased infant is not for everyone, though. We hope to help normalize many ways to cope with this tragedy. Here are some other ways to grieve and memorialize pregnancy and infant loss:

Seek the help of a doula. BirthWaves.org has doulas in five states who provide free help for parents during delivery of a stillborn child as well as with all the difficult things that come after they return home, from lactation support to funeral arrangement.

Hire a photographer who is comfortable with bereavement photos, or take pictures yourself.

Frame an ultrasound picture or create art with their footprint.

Buy a customized Molly Bear that is the weight of your baby.

Fill out a special memorial baby book.

Create a customized book for you and your other children to read together.

Make a memory box.

Reach out to a local or online support group.

Share your feelings with friends and family. No one needs to go through this alone. You may also be surprised to learn that someone close to you suffered from miscarriage or stillbirth without telling anyone until you did.

Read about other beautiful ideas from Still Standing magazine.

Complete Article ↪HERE↩!

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Resources for end-of-life planning, from wills to emergency health plans

By Sarina Trangle

The pandemic has prompted people of all ages to consider wills and emergency health plans.

At a minimum, lawyers recommend New Yorkers complete a health care proxy and consider a power of attorney, which, respectively, allow others to steer their treatment and finances, if necessary.

Here are definitions and resources to help with end-of-life planning:

Definitions and documents

When and why

Consider and codify your preferences when you’re healthy because documents cannot be finalized if there are questions about your ability to understand what you’re signing, said Maria Hunter, director of the public benefits unit at New York Legal Assistance Group, which provides free financial planning and legal assistance to low-income New Yorkers.

Be aware that if your wishes do not match the state’s framework, you will want to draft your own plans. Working with an attorney becomes more important when your preferences are “jumping the line,” according to Erika Verrill, attorney for the adult home unit at Nassau Suffolk Law Services, a nonprofit.

Health care-focused documents

Advanced directives guide care for people when doctors determine they cannot make their own decisions. Without advanced directives, state law lays out who may act as a surrogate and make decisions on your behalf in institutionalized settings. A court-appointed guardian would be the first person to assume that role. If that’s not feasible, the surrogate power shifts to a spouse, then an adult child, a parent, an adult sibling, and finally, a close friend.

A health care proxy empowers an agent to act on your behalf, when necessary, and may include specific preferences. A health care proxy can often be completed independently of a lawyer. The state Department of Health has forms available online at on.ny.gov/3je85hS, which must be signed by two witnesses.

Another option is a living will, which focuses on specific personal choices and may be used to advise an agent, caregivers or medical professionals.

Financial and administrative concerns

Estate planning refers to tools for managing financial, legal and administrative affairs.

A power of attorney document appoints an agent who can execute transactions and handle administrative affairs on your behalf. For instance, an agent could pay your bills if you were hospitalized.

A trust can be set up to ensure you meet financial eligibility requirements for certain government care programs and to protect loved ones, such as children, attorneys said.

Wills specify what will be done with your possessions after your death. Wills may be able to ensure that certain expenses are covered before your assets are used to pay debt, Hunter said. Absent a will, state law includes a formula for divvying up possessions after death. Default rules are outlined at HERE. For example, if you die with no spouse and no children, your parents inherit everything.

Complete Article ↪HERE↩!

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Dying in a Leadership Vacuum

Covid-19 has created a crisis throughout the world. This crisis has produced a test of leadership. With no good options to combat a novel pathogen, countries were forced to make hard choices about how to respond. Here in the United States, our leaders have failed that test. They have taken a crisis and turned it into a tragedy.

The magnitude of this failure is astonishing. According to the Johns Hopkins Center for Systems Science and Engineering,1 the United States leads the world in Covid-19 cases and in deaths due to the disease, far exceeding the numbers in much larger countries, such as China. The death rate in this country is more than double that of Canada, exceeds that of Japan, a country with a vulnerable and elderly population, by a factor of almost 50, and even dwarfs the rates in lower-middle-income countries, such as Vietnam, by a factor of almost 2000. Covid-19 is an overwhelming challenge, and many factors contribute to its severity. But the one we can control is how we behave. And in the United States we have consistently behaved poorly.

We know that we could have done better. China, faced with the first outbreak, chose strict quarantine and isolation after an initial delay. These measures were severe but effective, essentially eliminating transmission at the point where the outbreak began and reducing the death rate to a reported 3 per million, as compared with more than 500 per million in the United States. Countries that had far more exchange with China, such as Singapore and South Korea, began intensive testing early, along with aggressive contact tracing and appropriate isolation, and have had relatively small outbreaks. And New Zealand has used these same measures, together with its geographic advantages, to come close to eliminating the disease, something that has allowed that country to limit the time of closure and to largely reopen society to a prepandemic level. In general, not only have many democracies done better than the United States, but they have also outperformed us by orders of magnitude.

Why has the United States handled this pandemic so badly? We have failed at almost every step. We had ample warning, but when the disease first arrived, we were incapable of testing effectively and couldn’t provide even the most basic personal protective equipment to health care workers and the general public. And we continue to be way behind the curve in testing. While the absolute numbers of tests have increased substantially, the more useful metric is the number of tests performed per infected person, a rate that puts us far down the international list, below such places as Kazakhstan, Zimbabwe, and Ethiopia, countries that cannot boast the biomedical infrastructure or the manufacturing capacity that we have.2 Moreover, a lack of emphasis on developing capacity has meant that U.S. test results are often long delayed, rendering the results useless for disease control.

Although we tend to focus on technology, most of the interventions that have large effects are not complicated. The United States instituted quarantine and isolation measures late and inconsistently, often without any effort to enforce them, after the disease had spread substantially in many communities. Our rules on social distancing have in many places been lackadaisical at best, with loosening of restrictions long before adequate disease control had been achieved. And in much of the country, people simply don’t wear masks, largely because our leaders have stated outright that masks are political tools rather than effective infection control measures. The government has appropriately invested heavily in vaccine development, but its rhetoric has politicized the development process and led to growing public distrust.

The United States came into this crisis with enormous advantages. Along with tremendous manufacturing capacity, we have a biomedical research system that is the envy of the world. We have enormous expertise in public health, health policy, and basic biology and have consistently been able to turn that expertise into new therapies and preventive measures. And much of that national expertise resides in government institutions. Yet our leaders have largely chosen to ignore and even denigrate experts.

The response of our nation’s leaders has been consistently inadequate. The federal government has largely abandoned disease control to the states. Governors have varied in their responses, not so much by party as by competence. But whatever their competence, governors do not have the tools that Washington controls. Instead of using those tools, the federal government has undermined them. The Centers for Disease Control and Prevention, which was the world’s leading disease response organization, has been eviscerated and has suffered dramatic testing and policy failures. The National Institutes of Health have played a key role in vaccine development but have been excluded from much crucial government decision making. And the Food and Drug Administration has been shamefully politicized,3 appearing to respond to pressure from the administration rather than scientific evidence. Our current leaders have undercut trust in science and in government,4 causing damage that will certainly outlast them. Instead of relying on expertise, the administration has turned to uninformed “opinion leaders” and charlatans who obscure the truth and facilitate the promulgation of outright lies.

Let’s be clear about the cost of not taking even simple measures. An outbreak that has disproportionately affected communities of color has exacerbated the tensions associated with inequality. Many of our children are missing school at critical times in their social and intellectual development. The hard work of health care professionals, who have put their lives on the line, has not been used wisely. Our current leadership takes pride in the economy, but while most of the world has opened up to some extent, the United States still suffers from disease rates that have prevented many businesses from reopening, with a resultant loss of hundreds of billions of dollars and millions of jobs. And more than 200,000 Americans have died. Some deaths from Covid-19 were unavoidable. But, although it is impossible to project the precise number of additional American lives lost because of weak and inappropriate government policies, it is at least in the tens of thousands in a pandemic that has already killed more Americans than any conflict since World War II.

Anyone else who recklessly squandered lives and money in this way would be suffering legal consequences. Our leaders have largely claimed immunity for their actions. But this election gives us the power to render judgment. Reasonable people will certainly disagree about the many political positions taken by candidates. But truth is neither liberal nor conservative. When it comes to the response to the largest public health crisis of our time, our current political leaders have demonstrated that they are dangerously incompetent. We should not abet them and enable the deaths of thousands more Americans by allowing them to keep their jobs.

Complete Article ↪HERE↩!