Experts, caregivers point to potential solutions at inaugural forum

First event in Southeast Michigan from local journalism collaborative

A program at Detroit’s Hannan Center that provides day care for adults with dementia, offering a needed break for their caregivers, was one of the projects discussed by panelists at a public forum held Thursday on issues facing caregivers and possible solutions for them. Courtesy of Detroit Public Television

By Lindsay M. McCoy

Paula Duren, a Detroit-based psychologist, is one of an increasing number of caregivers of elderly adults who felt overwhelmed by the task of caring for aging parents, both of whom suffered from dementia.

“There were moments that felt like you didn’t even know what to do,” Duren said. “It brings about a helplessness.”

Duren was a panelist at a recent virtual forum hosted by the New York & Michigan Solutions Journalism Collaborative, a group of news, community and academic organizations that cover chronic problems with a solutions-focused lens, and Strides for Seniors, an annual month-long event series focused on Detroit’s senior centers.

The event, presented by collaborative members Detroit Public Television and Urban Aging News, featured journalists, caregiving experts, and community members who have served as caregivers for their loved ones.

The number of unpaid family caregivers has been rising in the United States, up from 43.5 million in 2015 to 53 million in 2020, according to a recent study by the AARP Public Policy Institute. The causes are numerous—from the aging of the Baby Boomer generation to a shortage of paid family caregivers. But despite formidable challenges, panelists discussed potential solutions being attempted across the United States.

After her experience, Duren founded Universal Dementia Caregivers. The non-profit organization offers support and education to those affected by dementia-related issues through services such as family mediation, legal guidance and workshops on caretaking skills and self-management.

“One of the things we do is invite attorneys in so people can ask their questions,” Duren said. Family caregivers “never think about the fact that (they) might need a power of attorney or a will might need to be established.”

Paid caregiver, funding shortage

The strain of caregiving isn’t unique to family caregivers; professional caregivers are also struggling.

“It’s a job that many spoke … about feeling very underappreciated,” said Sarah Rahal, a reporter for The Detroit News, during the event.

Paid caregivers’ turn over at a rate of 82 percent, and the workforce is currently in need of 34,000 more professional care workers, she said. This is a situation that is “expected to get much worse. There are thousands in Michigan who are in desperate need,” Rahal said.

One solution is dedicating more money toward paying caregivers—raises for paid caregivers as well as funding for the millions of unpaid caregivers.

The recent Biden administration infrastructure proposal originally included funding for increased caregiver pay, but that provision was left out of the deal struck this summer between the White House and a bipartisan group of senators.

Billions of dollars were proposed to go to expanding access to long-term care services in the home rather than receiving care at institutions, and the second priority would be to make caregiving jobs worth having, said Michael Kilian, editor of the Rochester Democrat and Chronicle.

Professional caregiving jobs “don’t pay well and… are very difficult,” Kilian said.

But Biden’s proposal did not include similar funding for unpaid family caregivers. The AARP has found that unpaid caregivers pay on average more than $7,000 a year out of pocket caring for loved ones.

According to Madeleine O’Neill, a reporter with the USA Today Network, there is currently a proposal in Washington that would provide unpaid family caregivers a tax credit up to $5,000 and allow Medicaid to cover more home-based services.

This proposal, if passed, “would be transformational for family caregivers in a sense that family caregivers might actually be able to access professional care for their loved ones and return to the workforce,” O’Neill said.

Needing a break

In addition to financial stress, caregivers also cope with physical and emotional strain.

For instance, Rahal pointed to the difficulty of the work itself, stating that caregivers are injured at a higher rate than even truck drivers in the United States.

Duren, the Detroit psychologist, says caregivers will neglect self-care when they put their loved ones first.

The Hannan Center, a senior center in Detroit, offers respite care in the community through a program called Daybreak. This respite care service allows caregivers a break at affordable rates, sometimes as low as $5 per hour.

“Sometimes it’s just a few hours, sometimes it could be five days a week,” said Vincent Tilford, the center’s executive director. “It helps to improve that relationship between the care partner and the person that they are caring for.”

.

Care to Learn More?

The full public forum can be viewed on DPTV’s website. The interstate collaborative plans to continue engaging the community on solutions for caregivers through events and reporting.

Follow the collaborative’s reporting at nymisojo.com and email story ideas to Project Director Karen Magnuson at [email protected].

Members of the news collaborative in New York include the Democrat and Chronicle, Minority Reporter, La Voz, WXXI and News10NBC in Rochester, and WGRZ, The Buffalo News, the Niagara Gazette and the Lockport Union-Sun & Journal and WBFO in the Buffalo area. Community partners include Rochester Institute of Technology’s MAGIC Center.

Members of the news collaborative in Michigan include Bridge Michigan, Detroit Free Press, Detroit Public Television, Detour Detroit, Hometown Life, Michigan Radio, The Detroit News, Livingston Daily, Macomb Daily, The Oakland Press, Tostada Magazine and Urban Aging News. Four news organizations represented by New Michigan Media are also involved: The Arab American News, Latino Press, Michigan Korean Weekly and The Detroit Jewish News. Community partners include Front Edge Publishing, Michigan State University, Just Ask Talk Show, and Wayne State University.

.

And a special thanks to Lindsay McCoy, an MSU journalism graduate student who covered the forum for the collaborative.

Parenting: Pushing back on the pressures from youth sports

Click this image from the Christian Science Monitor to read Martin Davis’s entire story.

In our We Are Caregiving section, we publish a wide array of stories that are helpful to America’s millions of caregivers, including parents.

This week we are recommending a story for parents by journalist Martin Davis, who specializes in covering the deeper personal dynamics of sports. One of Davis’s stories appears in the current issue of the Christian Science Monitor (CSM), headlined: All play, no fun: Pushing back on the pressures of youth sports.

The CSM editor’s note explains Why We Wrote This: “Amid increasing pressure to treat youth sports like a career, some families and educators are pushing back–demanding playtime be fun again, and offering solutions to make it equitable and affordable.”

Davis reports on “a growing movement to push back on a system that expects children and their parents to treat game time like a career with adult demands and expectations.”

.

.

Care to read more?

ARE YOU INTRIGUED by this column from journalist Martin Davis? Right now, Martin and our editors are completing a book filled with uplifting stories about high school coaches and players nationwide—men and women, black and white, famous and unsung heroes alike.

His book will appear soon in our series of 30 Days With under the title: 30 Days With America’s High School Coaches.

You can follow Martin’s work through his personal website, MartinDavisAuthor.com, which describes his work as an author and editor, as well as his background as a veteran journalist for national publications.

Look around that website and sign up to receive free updates from Martin about new columns and podcasts. You’ll be glad you did!

,

,

Pour a cup of your favorite beverage and enjoy this conversation on Aging Today with Mark Turnbull and David Crumm

Let’s talk about ways to help our caregivers

This podcast may inspire your community

All of us are aging. Right now, more than 50 million Americans are serving everyday as unpaid caregivers for their loved ones.

Click on the cover to visit the book’s Amazon page.

Recently, Front Edge Publishing Editor David Crumm talked with podcaster Mark Turnbull about the many ways we can help our family and friends with these challenges. Here’s how Mark starts the podcast:

As we always do, we want to thank caregivers scattered all over the nation. The theme of our show is about aging with all the many options that are placed before us—on your terms. That’s the key—on your terms. We started this podcast four years ago because we felt there was a huge void about the aging process—and it doesn’t matter about your chronological age. This podcast is all about bringing you experts who can help us to navigate the process of aging.

We agree heartily with Mark’s theme here at Front Edge Publishing, which also produces this ReadTheSpirit.com online magazine each week. That’s why our writers focused on strength-based solutions in our new book, Now What? There are chapters of the books that help families solve common problems—as well as chapters that celebrate the new potential and possibilities that we can discover in our later years.

As we age, we encounter challenges—and, if we are looking, we also can discover many gifts.

A TIP FOR LISTENERS: We hope you will hear something in this podcast that will make you smile and nod along with us. You may find a section or two of this podcast that you would like to replay for friends in a class or small group in your community or congregation. The podcast interface can easily be set to start playing at any point in the conversation.

 

‘I am not Alone,’ connecting Latino households with caregiving services

Front Edge Publishing is part of what has now become a nationwide network of journalists who are committed to publishing stories about caregiving solutions that could help communities nationwide.

Recently, the staff at the Democrat and Chronicle in Rochester, New York, reported on a new program in Southern California that connects caregivers from Latino households with services like respite care, training and support groups in Spanish.

The report says, in part:

The growing need to provide help is shown in a 2020 National Alliance for Caregiving and AARP report. It revealed Hispanic caregivers feel their role gives them a sense of purpose, but they have the fewest caregiving resources and information in comparison to other racial and ethnic groups.

The report also found Hispanic family caregivers are more likely to be in higher intensity situations—meaning they often provide more care—while struggling with lower incomes and often having poor or no health insurance.

The report also explains issues involved in trying to bring such a program to other communities.

 

Native American caregiving for COVID ranges widely from tragedies to model public health responses

The 2021 Cherokee National Holiday, which will be celebrated from Sept. 2-5 this year, will follow public health guidelines. The multi-day festival always is aimed at celebrating Cherokee resiliency. Click on this logo to visit the official website for the Cherokee National Holiday.

.

By DAVID CRUMM
Editor of ReadTheSpirit magazine

Indian leaders often refer to the original scale of their North American communities as “500 Nations”—and in the summer of 2021 they recognize that COVID responses have been as diverse as those cultural communities spread across this continent. Some tribes have experienced the tragic loss of Elders and little—or late—help from government agencies throughout 2020 and early 2021.

Other tribes have become models of public health response.

At their best, Native American leaders have demonstrated the strengths of truly caring communities. Here are some news stories about those efforts that you may have missed—reminders of the potential of Native wisdom and culture in the midst of a public health crisis.

Care to Read More?

Since our publishing house’s founding in 2007, we have worked with Native American writers and journalists to encourage their voices to be shared. Please, read this column in our Front Edge Publishing website that explains the two most important books we have published with Native American writers.

Spiritual director and chaplain Tom Stella’s new book points us toward being ‘In Sync with the Sacred’

EDITOR’s NOTE: Regular readers of our online magazine know Tom Stella’s work from our coverage of his earlier books CPR for the Soul (here’s our 2018 column about that book) and Finding God Beyond Religion (here’s our 2013 column). After many years serving as a Catholic priest, Stella refocused his vocation as a spiritual counselor and chaplain to individuals and groups. As the years have passed, his concept of the Divine has grown beyond traditional religious boundary lines—even as his spiritual advice to us has become ever-more practical. Now in his 70s, Tom’s new book is 11 chapters packed with hard-earned wisdom with chapter-titles that include: Life Is Not a One-Piece Puzzle and We Are More Than Our Limp. With Tom’s permission we are sharing here an abridged version of one of the book’s richest chapters: Pain Is Inevitable—Suffering Is an Option. We urge you to order a copy of Tom’s book, please, and share it with friends.

Pain Is Inevitable, Suffering Is an Option

By TOM STELLA
An abridged version of Chapter 5
from In Sync with the Sacred, Out of Step with the World

Click the cover to visit the book’s Amazon page.

“Life is difficult” is the first sentence of psychiatrist M. Scott Peck’s book The Road Less Traveled. This statement is both undeniably true and universally experienced. Along with being wonderful, exciting, fulfilling and gratifying, life is also difficult. Life can be challenging and exasperating. More often than not, life tries our patience and tests our faith. Whether we’re talking about physical, mental, emotional or spiritual matters, life can be unfair, maddening and heartbreaking. Life is difficult, and pain is inevitable.

The generally accepted understanding of suffering is that it is pain on steroids. When we say someone suffers from migraines, cancer, Alzheimer’s or depression, we usually mean their pain is intense, prolonged and possibly chronic. However, when I use the word suffer here, I’m not referring to pain writ large, but to its meaning in the Latin sufferre, which means to “bear up” or “to endure.” Suffering in this sense refers to how we carry our pain. We can resist the reality of our pain and resent its causes and consequences, or we can embrace it.

Pain may be inevitable, but we can choose how we deal with it; we can do so grudgingly or gracefully, though I know the latter is a bit of a stretch. As a hospital and hospice chaplain, I have witnessed both kinds of suffering in patients who experience physical pain. Some carry their pain with dignity, not denying or minimizing it, and not allowing it to sour their attitude or the manner in which they relate to medical staff, or to their family and friends. Others, some of whom are actually in less acute pain, both resist and resent their condition thus becoming a pain to themselves and to others.

As a priest, counsellor and spiritual director, I have also observed the different ways people deal with non-somatic pain. The distress of loss and loneliness is no picnic. A heartache is every bit as real as a headache. The spiritual pain known as the “dark night of the soul” is a dis-ease as palpable as any other.

In all of these situations, it can be a good thing to express one’s anger and frustration at no longer feeling whole and healthy, but some turn this phase of the grieving process into a lifestyle. People can become identified with their pain; they become their anger and, as a result, they end up being bitter. Others, those who carry their pain well, allow it to teach them about life and about their need to rely on other people, and maybe also on a Higher/Inner Power.

ATTITUDE AND FAITH

Tom Stella

What makes it possible to accept our pain rather than rail against it? What gives us the courage to maintain a positive attitude in the face of physical, emotional or spiritual pain? For a great many people, faith can be a difference maker. For some people, it is the traditional religious belief that those who experience pain and sorrow now will be rewarded in the life to come. Whether this is true or even good theology is debatable, but this belief can give meaning to a life of pain which, in turn, can help make it bearable. Those who hold to this conviction often point to the Beatitudes for biblical confirmation: “Blessed are those who mourn, for they shall be comforted.” (Matthew 5:4)

But there is another expression of faith that can result in the same ability to suffer well the pain tha comes our way. This faith has nothing to do with an afterlife, but everything to do with the rewards of living with integrity here and now. This kind of faith is not about believing in a ‘just’ God, or in some sort of quid pro quo exchange of present pain for future bliss. Rather, I am speaking of faith as a conviction that our deepest pain has the potential, the power, to bring new life.

The acceptance of pain I am describing is not masochism; it does not mean we would rather know pain than pleasure, or sorrow than joy. Facing pain means we are open to experiencing everything that being wedded to the world entails, the good times and the bad, the easy times and the difficult times.

Novelist and social critic James Baldwin says, “Not everything that is faced can be changed, but nothing can be changed until it is faced.” Whether or not painful circumstances can be changed, our best option is to move toward our pain. Try to relax into the bodily ache. Confront the discomfort of a strained relationship. Sit still in the abyss of loneliness. Allow the doubt and the darkness that blankets the soul from time to time to have its day. It is amazing how pain, though still present, becomes more tolerable when we suffer it well.

A friend once told me that, in his experience, although pain that is embraced doesn’t go away, “something shifts.” He couldn’t describe the “something,” and he couldn’t pinpoint exactly what he meant by the word “shifts,” but he was clear that when he stopped resisting the pain it became less painful and easier to bear.

SUFFERING THE PAIN OF OTHERS

How we choose to suffer our own pain makes it more or less difficult to bear. But we also have an option when it comes to dealing with the pain of others. We can attempt to cure them, or we can attempt to care for them; that is, we can accompany them in their suffering. Of course, this may not be an either/or matter—but we can be caring at the same time that we administer healing balms, physical or otherwise.

When a cure is not possible, however, when there is no hope for recovery in sight, when everything that can be done has been done to alleviate pain and to facilitate health, there is still another option that can be helpful—this is the way of compassion.

From the Latin cum pati, compassion means “to suffer with.” When we are truly present to those who are in pain, when we don’t try to minimize or spiritualize what they are feeling but instead acknowledge the fear and anger that often arise in the face of hopelessness, helplessness and distress, our understanding and willingness to share their pain can be transformative. It has been said that shared joy is increased, and shared pain is lessened Sharing the pain of others can lighten their load and enable them to suffer it more gracefully, for they then have the consoling and sustaining realization that they are not alone.

It is nothing less than courageous to accompany a person in the midst of pain that cannot be cured. Caregivers who attend to the needs of the seriously or terminally ill often do so at the cost of their own health. They also do so at the cost of their convenience. I witnessed this first-hand as my mother cared for my father in the last years of his life, and as my sister cared for our dying mother. Caring for another is a grueling experience physically and emotionally, but the rewards are worth the cost, for we usually receive more than we give—a truth that is often realized only in retrospect.

“Shit happens” is a not-so-delicate way of saying life is difficult. But in the midst of life’s travails there is a way to navigate that makes pain bearable; we can choose to suffer it. We respond to the sacred whenever we choose this path; and, whenever we embrace life’s difficult times with faith, we discover that they are often the font from which comes new life.

.

Care to Read More?

GET THE BOOKWe urge you to order a copy of Tom’s book, please, and share it with friends.

REQUEST TOM’S OCCASIONAL COLUMNS, which he writes as part of his ongoing chaplaincy work. Tom is comfortable providing a direct email address: [email protected] Email him and request these columns. He will add you to the list. You’ll be glad you did! (Don’t worry. This is an emailed series of columns that Tom writes and personally distributes about twice a month. You can cancel anytime.)

.

.

 

 

Zohaib Begg: ‘A lot of people could learn from that 8 year old in finding solutions.’

WASHINGTON DC—Describing Zohaib Begg’s service to needy neighbors in Washington D.C. as “compassion from an unexpected source,” CBS News broadcast this 90-second story that inspired families nationwide.

At another point in the report, we hear, “A lot of people could learn from that 8 year old in finding solutions.”

We are streaming this video in our We Are Caregivers section to remind everyone that caregiving has no age limit.

As the CBS correspondent reports: “In the shadow of a symbol of American accomplishment sits a park lined with tents that most in the nation’s capitol ignore—but not 8-year-old Zohaib Begg. The Virginia third grader is handing out donated meals and care packages of socks, masks and toiletries.”

And this is not the first time the nation has heard of Zohaib’s selfless work on community caregiving.

Zhoaib is the grandson of our author Victor Begg. You can learn much more about Zohaib’s family by reading Victor’s book, Our Muslim Neighbors.

Here is the CBS News video about Zohaib Begg

.
To learn even more about this CBS story, visit the CBS News website, which has both the video and a full-text story about it.

.