Tales, Tips and Love from Women Caregivers

Women have always been caregivers. Whether looking after small children, elders, other family members or friends in small communities, tending to others in urban settings with limited support systems, or acting as professional caregivers in institutional settings, we have been the primary providers of physical care and emotional support in a variety of settings and circumstances throughout the ages.

Today that remains true, and being the main caregiver may be more vital than ever. As women have children later and elders live longer, we are challenged by competing demands and shrinking resources. Many of us have elderly parents living in a time of growing dementia or increasing frailty; others have parents who need supervision in nursing homes. At the same time, we are parenting children who often have their own physical or emotional challenges. We may also have spouses in failing health who need our attention. And who among us would not be there for an ill friend or family member?

TakeCareWhether we are younger women focused on child care, older women charged with being there for a sick spouse or parent, or women in the Sandwich Generation who are called upon to take care of children and parents simultaneously, many of us find ourselves in the caregiver role well before we expected to be there and often feeling less prepared than we wish.  We are all caregivers at some stage of our lives, and we all have stories to tell about what that has meant for us.

It’s important to emphasize women as caregivers because while men and women are both likely to fulfill caregiving roles, female caregivers spend many more hours providing care. They spend an average of 680 hours per year providing care, 160 more hours on average than male caregivers. Female caregivers may spend as much as 50% more time providing care than male caregivers.

That’s partly because men tend to manage care rather than administer it. A man is more likely to hire someone to help with tasks such as bathing or dressing or other daily activities because they are not as comfortable as women providing personal care.

According to the Family Care Giving Alliance, 80% of long-term care in the US is provided by unpaid or informal caregivers. Of these, 61% are women, most have reached middle age, and 59% have jobs.  The average caregiver is a 49-year old woman, caring for a mother who doesn’t live with her. She is married and employed.

An estimated 15.5 million caregivers provided 17.7 billion hours of unpaid care for an aging family member with dementia alone in 2013. Most of these caregivers for aging loved ones were daughters and daughters-in-law. The value of all the informal care that women provide ranges from $148 billion to $188 billion annually. Women, who provide the majority of informal care, play many roles while caregiving, from hands-on health provider & care manager to surrogate decision-maker and advocate.

Caregivers who leave the workforce to care for a family member lose on average over $304,000 in wages and benefits over their lifetime. Women caregivers are less likely than others to attend to their own health and self-care needs. They often suffer from stress, isolation, fatigue, and depression. Thirty-five percent of them report finding it difficult to make time for themselves, and 29% report difficulty balancing work and family issues.

Because of these issues, I compiled a collection of prose and poetry by women caregivers that give testimony to what caretaking has meant for contemporary women, whose lives are complex enough to begin with.  The anthology is called TAKE CARE: Tales, Tips and Love from Women Caregivers and it will be published this spring. Here is an excerpt by Kate Gray called “All the Longing Left in the Body.”

“It could be you stopping me. It could be you quite a few years from now, half of your face a little lower than the other, your hair turned gray and your clothes neatly tucked. You would probably do the same thing she did in the women’s restroom, if you were in her shoes.

“It could be any of us, waiting outside a bathroom stall, overcoming the body’s instinct to grimace at the acrid smells, taking a diaper much bigger than the one used for an infant, carrying it carefully, disposing of it. It could be any of us, bending down to hug our spouse or partner, wrap our arms under their arms, straighten our legs to lift the two of us to standing. It could be you loving someone so much that you take him into the women’s room with you, that you find a way to make a dance out of changing a diaper, that you don’t mind doing what you have to do, as long as you are two together.”

Loneliness: A Silent Epidemic

Robin Strongin

Loneliness.  It is an epidemic that has silently gripped the nation. And it is not going away.  I wrote about the issue back in February: http://www.disruptivewomen.net/2017/02/23/loneliness-and-its-impact-on-health-share-your-story/.  In that post, we announced that we were looking for ways to help.  And we found one!

art and healingDr. Jeremy Nobel, Founding CEO at the Foundation for Art and Healing, is spearheading The Creatively Connected Film Festival, which involves a film contest, digital platform, public health outreach, and evening of celebration in New York City on May 9, 2017.  Sharing information about the Foundation for Art & Healing’s UnLoneliness Project, and the Creatively Connected Online Film Festival. http://artandhealing.org/join-our-festival-launch-celebration/

Why Feeling Connected Is More Important than Ever. Isolation and loneliness, a burden born by so many and in so many circumstances, is rapidly increasing and a threat to health. According to a recent study by the AARP, over one-third of American adults are lonely. Emerging research indicates that in addition to depression, substance abuse and suicide, isolation and loneliness is associated with increased risk of early death from heart disease and cancer of 30%: a risk on par with smoking 15 cigarettes a day.

Introducing The Creatively Connected Online Film Festival. The Creatively Connected Online Film Festival is an online exploration of loneliness and isolation, drawing on the time-tested power of creative arts expression to powerfully share the stories that “connect us.” • The Festival, an initiative of The Foundation for Art & Healing’s UnLoneliness Project, embraces the healing power of sharing stories with a cinematically rich and diverse collection of short narrative and documentary films. • Intended as a widely accessible experience through our online showcase and network of strategic partners, the Festival aims to give over one million viewers the chance to explore isolation and loneliness, revealing ways we can help ourselves meet those challenges. • The range of selected works highlight specifically affected groups, including older adults, those with major illness, caregivers, military veterans, youth and young adults, and minority populations including LGBTQ and immigrants. • Festival films are juried with winners selected by guest juror Mike Paseornek, President of Production at Lionsgate Motion Picture Group, a major global producer and distributor of independent feature films.

The Festival will be launched with two events in New York City on May 9, 2017, both held at the New York University Law School in the West Village in Manhattan: • Public Conference. Free and open to everyone (advanced registration required), this afternoon event will include film excerpts and expert panel discussions on loneliness and isolation in various contexts. • Festival Launch Celebration. This festive invitational and ticketed evening event will be co-hosted by Steven Safyer, MD the CEO of Montefiore Health System and Lionsgate’s President, Mike Paseornek. Arts, medicine, and public policy luminaries will join guests for screenings of winning films, awards presentations, light refreshment and conversation. Our Goal Through the Festival and the UnLoneliness Project, we aim to increase awareness and understanding of loneliness and isolation. We’re taking steps to support, build upon, and expand efforts to address the root causes of loneliness by encouraging community outreach and collaboration. The Foundation for Art & Healing is a 501c3 non-profit organization founded in 2004.

 

Disruptive Women Mourns the Loss of 2017 Woman to Watch Trish Vradenburg

Robin Strongin

2017 Disruptive Woman to Watch Trish Vradenburg, who was the Co-Founder and Vice-Chair of UsAgainstAlzheimer’s, died on Monday. Disruptive Women offers its sincerest condolences to the Vradenburg family and the UsAgainstAlzheimer’s community. The following is a statement issued today by UsAgainstAlzheimer’s.

 

 

 

UsAgainstAlzheimer’s Mourns Passing Of Adored And Inspirational Co-Founder And Vice-Chair Trish Vradenburg

Trish’s Deep-Rooted and Unflinching Passion to Fight Alzheimer’s Creates Admirable and Aspirational Legacy

WASHINGTON, DC, April 18, 2017 – UsAgainstAlzheimer’s Co-Founder and Vice Chair Trish Vradenburg’s unflinching spirit – her creativity and imagination, quick-witted humor, empathy, generosity and her exceptional tenacity to stop the suffering of others – was captured in her every action. It is with immense sadness that UsAgainstAlzheimer’s announces her passing, and it is with the utmost gratitude that the organization cherishes her legacy and forges ahead in her memory.Trish Vradenburg photo

Trish’s life was an inspiring portrait of creativity and versatility, employing her gifts of writing and storytelling throughout a successful professional career. She began her career as a speechwriter in the U.S. Senate. She wrote for various television shows, including Designing Women, Family Ties and Kate and Allie. Trish’s novel, Liberated Lady, was chosen as Literary Guild and Doubleday Book Club selections and has been translated into three foreign languages.

As a journalist, she wrote extensively for The New York Daily News, The Boston Globe, The Washington Post, Ladies’ Home Journal and Women’s Day. Surviving Grace, Trish’s quasi-autobiographical play about a sitcom writer and her mom battling Alzheimer’s disease together, was produced at The Kennedy Center in Washington, D.C., and Off Broadway at the Union Square Theater. It is now being performed at various community theaters throughout the country, as well as in Brazil.

Founded with her husband George Vradenburg, UsAgainstAlzheimer’s was born out of their passion to fight back against Alzheimer’s disease, which Trish’s mother Bea Lerner, the wife of her father Joseph H. Lerner, succumbed to in 1992. Trish’s unique whimsical style, the perfect complement to George’s more serious side, was instrumental in leading the organization on a path to make meaningful progress against a disease that caused their family so much pain.

Trish was a gifted and relentless advocate. She helped achieve increased funding for Alzheimer’s research and build a growing public-private consensus that a cure for the disease must be reached by the year 2025. Recently, she spearheaded the launch of the Alzheimer’s Party, imploring members of Congress to join a bipartisan movement to end Alzheimer’s disease.

Trish also served on the Council of Theater J and on the boards of DC Vote and the Vradenburg Foundation.

She is survived by her adoring husband George; daughter Alissa Vradenburg and son-in-law Michael Sheresky of Los Angeles, CA; son Tyler Vradenburg and daughter-in-law Jeannine Cacioppe Vradenburg of Chicago IL; grandchildren Harrison Sheresky, Skyler Sheresky, May Vradenburg and Gavin Vradenburg; and her brother Rabbi Michael Lerner and sister-in-law Cat Zavis of Berkeley, CA. She was preceded in death by her father, Judge Joseph H. Lerner, and mother, Bea Lerner.

Private family funeral services will take place later this week in Los Angeles, followed by a public memorial service in Washington, D.C., on May 9 at a venue to be determined. Family and friends will be honoring Trish’s legacy; details will be shared as they become available.

 

Taking on Women’s Heart Health the Old-Fashioned Way

Bernadette Melnyk, PhD, RN, CPNP/PMHNP, FNAP, FAAN

This editorial was originally published by Morning Consult on 4/14.

Heart disease claims the lives of more women than any other illness — more than all types of cancer combined — so let’s set straight the myth that heart disease is a man’s disease. While an estimated 80 percent of heart disease is preventable, cardiovascular disease among women remains an invisible disease in the national conversation. It’s time we focus more attention on the unacceptable number of mothers, daughters and sisters we have lost, and spread awareness of this silent killer of women.

Every 80 seconds a woman dies of heart disease; that’s 400,000 women each year. Tragically, my own mother was one of them. One week after learning she had high blood pressure, my mom had a stroke in front of me when I was 15. Her death, like those of so many other women, was preventable. At the time of her death, her prescription for blood pressure medication was still in her purse.

Heart disease affects women differently than men, and it’s imperative that clinicians — nurses, physicians assistants and doctors — be equipped with the knowledge that can help guide more effective treatment and prevention options. As conversations in government focus on health, we must work with federal and state leaders to make sure education about women’s heart health is a national priority.

Until these actions occur, we need to make progress the old-fashioned way, reaching one woman — and the men who care about them — at a time. Across the country, working with communities and campuses, we should be conducting biometric screenings, starting with young women. In February, at Ohio State University, we hosted biometric screenings for faculty, staff and 500 students; and since 2013, we have reached out to more than 150 health sciences colleges and professional as well as community organizations to conduct screenings on more than 54,000 Americans nationwide.

In addition, in partnership with the Women’s Heart Alliance, we shared our model for heart checks with colleges and schools of nursing and hospitals in Nashville, Tenn., so they in turn can screen their young women and caregivers. The model consists of large-scale screenings and education sessions using nursing faculty and students as the primary screeners. Screenings include a blood pressure measurement; a height, weight, heart rate, and body mass index calculation; and a stress screen and lipid panel in select individuals with certain cardiovascular risk factors. The goals are to identify early cardiovascular disease and refer those individuals for treatment.

We also must continue to encourage students and young people to adopt healthy lifestyles: Be active, eat healthy, avoid tobacco and manage stress. Eighty percent of heart disease is preventable with these four healthy lifestyle behaviors. This model needs to be replicated so we can reach greater numbers of women.

It is impossible to overstate the importance of learning more about this illness and passing that information along to family members, friends and colleagues. A little knowledge can go a long way. For example, women often don’t realize they’re having a heart attack because their symptoms, often taking the form of nausea or back pain, are different from those that men experience. That may be why women wait an average of 54 hours — more than three times as long as men — from the time they start experiencing symptoms to the moment they seek treatment. That time lag translates into far too many avoidable deaths.

I urge everyone, especially health care providers, to be proactive in teaching their patients how heart disease affects women and men differently, and counseling everyone to prevent it with healthy lifestyle behaviors.

The Children of Medicaid

This article was originally published on Complex Child. 

Compiled by Susan Agrawal

I’ve been continually surprised by how many people think Medicaid is just for poor families on welfare. Those of us who parent children with complex medical needs know that Medicaid is so much more than that. After all, 72% of Medicaid enrollees are children, people with disabilities, and the elderly, and these groups account for 84% of spending.

Medicaid provides vital services for children, including home nursing care and therapies, that are not otherwise covered. In this article, we will share just a few of the children with medical conditions who have received life-changing benefits, thanks to Medicaid.

Carter

Diagnosed with spastic quadriplegic cerebral palsy and associated conditions, Carter requires a tracheostomy and ventilator to help him breathe. He is covered by both private insurance and Medicaid through the state of Wisconsin. Initially, he participated in an optional Medicaid program for children with extraordinary needs called a Katie Beckett waiver, but he now receives services through a Medicaid waiver for children with physical disabilities. Carter has significant physical disabilities and medical needs that make him fully dependent on his caregivers, but is cognitively intact.

Medicaid has paid for part or all of Carter’s surgeries, medications, durable medical equipment, formula, and occupational and physical therapies. Even more importantly, it provides coverage for home nursing, allowing Carter to maintain the same two independent nurses for the past 12 years.

Medicaid allows Carter’s mother, Kathy, to work part time and take care of her other children. As Kathy says, “Without these programs, despite both of us working, my husband and I would be financially bankrupt and our son would have to go without many of the surgeries, medications, and supplies that improve his quality of life.”

Johnny

Johnny is an adorable little boy who is the only person in the United States diagnosed with Maple Syrup Urine Disease (a metabolic disorder) and Cystic Fibrosis. Like many children with complex medical conditions, Johnny has both private insurance and secondary Medicaid, through a state-based loophole in Pennsylvania that ensures children with extraordinary medical needs have access to Medicaid.

While private insurance pays the bulk of his expenses, Medicaid covers special medications related to his rare condition and other special therapies. It also covers his substantial out-of-pocket insurance expenses, such as copays and deductibles. His medications and therapies are life-saving for him, and without Medicaid, he would not have access to them.

Simply put, Medicaid keeps him alive.

Ikaika

Ikaika is diagnosed with CHARGE association, a genetic condition that comes with a wide range of congenital medical conditions. He also was born with a hole between his esophagus and trachea, has a feeding tube for nutrition, and had a tracheostomy tube to help him breathe for the first eight years of his life. Currently, Ikaika has private insurance plus a secondary Medicaid waiver, due to his extensive medical needs.

During the time Ikaika had his trach, Medicaid paid for home nursing care, allowing his mother to return to work full time. Medicaid also covers his school-based nursing services, his therapies, his feeding therapy, his     feeding tube formula, and his feeding tube supplies, all of which are not covered by his private insurance. In addition, Medicaid pays the bulk of the cost for his specialized bone conduction hearing aids. If he didn’t have Medicaid, he would be denied the fundamental right to hear. His family would literally be drowning in debt from his uncovered medical expenses.

Ikaika will likely outgrow many of his medical needs as he gets older, and will grow up to attend college, have a family, and pay taxes. As his mother Amanda says, “Ikaika is thriving and growing into a caring, responsible, co ntributing citizen of our country and the world.”

Medicaid allows Ikaika to hear, attend school, and thrive!

Jojo

Born with complex congenital heart defects and heterotaxy syndrome, Jojo was previously covered by private insurance. But the severity of his medical needs forced his mother Elizabeth to leave her job, which left h im uninsured. Thankfully, he was able to receive Medicaid plus additional services through California Children’s Services (CCS), a special program for children with qualifying medical diagnoses.

Currently, Medicaid pays for his primary care, specialty care, surgeries, hospitals stays, feeding tube, formula, physical therapy, and developmental therapy. Jojo is able to have all his need s me t between Medicaid and CCS.

As his mother says, “Medicaid has allowed Jojo to not only survive, but thrive, because it means we don’t have to worry about how to afford quality care. Caring for a medically complex child is stressful enough as it is, but the Medicaid program has given us some peace of mind.”

Mason

Mason was a charming young man adopted from foster care, who passed away in 2015. He was diagnosed with cerebral palsy, and was nonverbal, used a wheelchair, and had a feeding tube. Like many foster kids with complex medical conditions, Mason had been hard to place, and did not find a permanent home until age six. His adoption was only possible because it came with a guarantee of Medicaid coverage, which covered most all of his medical expenses.

He participated in a special Medicaid program called Consumer Directed Community Supports that allowed his family to purchase necessary medical equipment, helped to make his home wheelchair accessible, and paid for his feeding supplies, medical formula, diapers, and medications. In addition, this program paid for personal care aide hours, allowing his mother to continue working part time. Medicaid also helped the family with travel expenses, which w ere especially important when Mason was hospitalized for months four hours away from home in the last months of his life.

Medicaid allowed Mason to have an adoptive family for the last two years of his life.

Miracle

Miracle is exactly what her name describes—a miracle child. Diagnosed with VACTERL Syndrome, a collection of congenital defects that affect almost every body system, Miracle has many medical needs that cannot be met by insurance. She is covered by both private insurance and Medicaid. For example, she requires a feeding tube, as well as ongoing feeding tube supplies and formula, but her private insurance does not cover these expenses. Medicaid also cove rs her home-based therapies, such as physical and speech therapy.

As her mother Destiny says, “Medicaid gives us less stress knowing we won’t be in dire financial situations with household and medical bills.” Miracle’s needs require around-the-clock attention, but Medicaid makes it possible for their entire family to live healthy, productive lives, with lots of love and attention.

Medicaid helps Miracle’s family to avoid financial ruin.

Emma and Lily

Identical twins Emma and Lily were born with a mosaic form of Down syndrome that affects them very differently. While both girls have fantastic private insurance, they would still have hundreds to thousands of dollars of medical and therapy bills per month without Medicaid.

Initially, both girls had Medicaid, but now only one requires it due to her ongoing medical needs. It pays for her occupational therapy, speech therapy, and physical therapy. It has also helped cover the costs of specialty care, including visits to an endocrinologist, ophthalmologist, audiologist, and feeding specialist. Finally, Medicaid has paid for important home medical equipment, such as a nebulizer, that keeps one twin with ongoing lung infection issues at home instead of in the ER or hospitalized.

Medicaid means that Emma and Lily’s mother Lauren is financially able to stay at home to care for them, taking them to medical visits and being available for weekly therapies. As Lauren says, “It helps us to thrive as a family and get wonderful medical care and therapy for our daughters!”

Aiden

Aiden has an excellent private insurance plan, but it still does not meet his needs. Diagnosed with cerebral palsy, alpha thalassemia x-linked mental retardation, and many associated medical conditions, he requires multiple therapies and personal care services that his insurance does not cover. Fortunately, his medical condition qualifies him for a Texas Medicaid waiver program, allowing him to have access to Medicaid coverage for therapies, personal care services, and other benefits.

Aiden has recently seen cuts to his Medicaid services, since Texas received a waiver of a federal law that now allows Aiden to be placed in a managed care program. His state has already cut his therapies by two hours per week. It has already become challenging to cut through the red tape in order to receive the services he needs.

Aiden’s story shows the importance of a strong Medicaid program with appropriate federal regulations that make sure he receives all his medically necessary care.



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