Vote for our Caregiving Visionary Award
Vote for our Caregiving Visionary Award
Voting has opened for our Caregiving Visionary Award, honoring individuals who act as a beacon of hope for family caregivers or former family caregivers. This year, we're proud to showcase 16 nominees, which you can meet below.
Please vote for the individual you believe best meets the following criteria:
1. The nominee must currently care or previously cared for a family member.
2. The nominee developed and implemented an innovative way to support family caregivers or former family caregivers.
3. The nominee provides support for family caregivers or former family caregivers in a way that makes the caregiving experience better and easier.
4. The nominee inspires others to make a difference.
Voting ends at midnight on February 15. The 10 nominees who receive the most votes will advance to our finals. From those 10 semi-finalists, Denise M. brown, founder of Caregiving.com, will choose five award recipients and announce the five winners on March 1.
The five winners will be featured on Caregiving.com and on Your Caregiving Journey podcast as well as receive a free registration to our Third Annual National Caregiving Conference which happens November 9 and 10, 2018, at the Chicago Marriott O’Hare. We’ll honor the recipients at a reception on the evening of Thursday, November 8. (Winners will pay for their hotel stay and travel to Chicago.)
Meet our nominees, below, and then cast your vote for your favorite.
Our Third Annual National Caregiving Conference will happen on November 9 and 10 at the Chicago Marriott O”Hare, 8535 W. Higgins in Chicago. We hope you will join us in Chicago or virtually. We will live broadcast both days.
Our one-of-a-kind conference features presentations and panel discussions from family caregivers and former family caregivers. At our conference, just like in our day, we’re the experts. Join us to connect to others who understand and to receive insights, inspirations and information. This year’s conference theme, Our Best Selves, encourages us to look at how we do our best during an experience that feels like the worst.
“I’ve been to a lot of conferences but this one is really unique," said an attendee to last year's conference.
"I didn't want to leave," said another conference attendee.Learn more.
Karen’s parents were displaced from their Brooklyn home by Hurricane Sandy in October, 2012. Karen, her husband Robert, and other family members took them into their homes for four months until they found a suitable assisted living facility. Karen kept in touch with her mother every day by phone (her father lost the ability to communicate verbally after a stroke), and visited with them as often as she possibly could. When both parents became ill, Karen placed them in a nursing home. She was in constant contact with the staff and with doctors. Both parents died within a month of each other a little over a year ago.
As a result of her experiences in the aftermath of Hurricane Sandy, Karen founded Help You Thru, an organization designed to help other caregivers in need of support.Tell us about the support the nominee provides. What makes it innovative? How has the support made caregiving easier or better?
Help You Thru offers individuals a means of coping with the daily demands and the accumulated stress of caring for a loved one. There is no charge for this support, and people are free to write about their individual problems. Karen and others respond, so caregivers feel they are not alone. The Help You Thru website and Facebook page also provide information on the warning signs of various illnesses that might develop, and gives advice on how caregivers can keep healthy themselves. How does the nominee inspire others?
Karen inspires others by her honesty. There are times to cry, she says, and that is O.K. Her experience with caring for her parents, and sometimes making mistakes along the way, is a guiding light for others. Please provide testimonials of family caregivers or former family caregivers who benefit from this support.
In the past two years I have shared the burden of caring for Venice Quinones, a dear friend who was dying of kidney disease and heart failure, with members of my extended family. Her children and siblings handled the major portion of her care in hospitals and in her daughter’s apartment. The advice on stress reduction from Help You Thru has helped Venice’s family cope.
She went on to create the first ever and the largest online support network for people with lung cancer and their caregivers. She has cared for and advocated for lung cancer patients for over 15 years and she herself is a cancer survivor and current state 4 liver patient. She recently started a cancer ministry at her church to support people in her local community and she recently wrote the book Co-Surviving Cancer- the first ever guide for new cancer caregivers. What makes it innovative? How has the support made caregiving easier or better?
She went on to create the first ever and the largest online support network for people with lung cancer and their caregivers. She has cared for and advocated for lung cancer patients for over 15 years and she herself is a cancer survivor and current state 4 liver patient. She recently started a cancer ministry at her church to support people in her local community and she recently wrote the book Co-Surviving Cancer- the first ever guide for new cancer caregivers. How does the nominee inspire others?
She is constantly helping people navigate their cancer experience and provides help 24 hours a day to improve the survivorship of people living with cancer. Please provide testimonials of family caregivers or former family caregivers who benefit from this support.
Katie Brown among so many other members have helped me beyond words during my 9 month journey. I can never thank them enough. Michelle Maria
I can testify to the fact that there are no more horrifying words to hear than, "You have lung cancer", and it becomes a part of who you are for as long as you may survive. I have found no better place to interact with other lung cancer survivors and caregivers than Lung Cancer Support Community. Katie has done an amazing job as founder and director of it. Bud Baker
I first became aware of Lungevity through LCSC. Thanks to Katie and all the other folks that are part of the online community I found support during my mother's short battle with lung cancer and have continued to receive the love and support from these folks in the years since. I couldn't have made it through without them. Since then, I founded my own charitable organization (with Katie's help) and have raised funds for Lung Cancer research. Lungevity has been the single largest recipient of those funds because I am confident that they are good stewards of the resources we provide and their mission is a riteous one. This is a great organization. Nick Cappiello
I don't know where I'd be without the LUNGevity foundation and especially the LCSC. Two days after my Mom was diagnosed, after reading awful, hopeless statistics, I logged onto LCSC for the first time. Their I found hope, support, and friendship. I clung to the message board as a lifeline throughout my mother's illness, her decline, and even after her death. It was the only place that I found where people 'got it' about Lung Cancer. Katie Brown who began the support board and whose role with LUNGevity has expanded recently is an amazing voice of compassion and support. She workds tirelessly to support and advocate for those dealing with this disease. LUNGevity not only gave me support through the support boards, but provided an avenue to raise funds and awareness myself. I enjoyed walking as a satellite walker in one of the walks a few years back and I try to support others walks and endeavors as well. I love it's focused support for the deadliest cancer out there. Valerie Rosberry
Bev is an educator and musician. She’s also a wife and mother. But it was her role as daughter that put her on the path to enhance caregiving. Bev shared a love of music with her Dad, and as he battled cancer, music helped them connect, express love, and find closure. As her Dad lay dying in Room 217 of the local hospital, the family sang familiar hymns. She saw how music helped him, and the family, transition in death.
After her Dad’s passing, Bev became committed to sharing comfort music with others. She not only researched, produced and recorded CDs designed for use in end-of-life care, but she developed an idea for Room 217, which would create resources and training for caregivers who wanted to enhance their caregiving with music. She fiercely believes that every person is capable of using music to provide person-centred care.Tell us about the support the nominee provides. What makes it innovative? How has the support made caregiving easier or better?
Bev has developed the Music Care approach, which is changing the care experience for thousands of people. Music Care is a relational approach that empowers care partners to use sound and music as a holistic solution for care. Music Care improves quality of life and the care experience. The music of Room 217 has been available for care partners since 2005. In 2008 the Room 217 Foundation was established as a not-for-profit corporation, and in April 2009 it became a registered Canadian charity. Over the years, the research-informed and evidence-based resources have expanded to include 12 CDs (specially produced at 60 beats per minute (resting heart rate to encourage steady respiration)) designed for palliative care; a DVD series designed for reminiscence; a complete singing program designed for memory care (engages people in active music making to reduce isolation, improve mood and engagement); and a resource guide that introduces caregivers to the importance of sound and music in caregiving space.
In addition to resources, Bev and Room 217 are leaders in training and education to integrate music into caregiving. Room 217 hosts monthly webinars on a wide range of topics that incorporate health and music; runs a national one-day conference that inspires and educates an array of care providers on music and wellness; has created a three-level Music Care Training course that develops caregivers into music care advocates (1,000 people have taken this course in Canada and the U.K., and American caregivers have come north for training); and participates in research projects on topics of music and health.
The caregivers who use Room 217 resources and training are front-line health care providers, family caregivers, spiritual care providers and volunteers.How does the nominee inspire others?
Bev has impacted thousands of caregivers, which in turn means she’s impacted thousands more care receivers. She has created the music that has filled dying spaces. She has educated professional caregivers as a plenary speaker and workshop presenter at hospice palliative care conferences, at recreation and leisure provider conferences, at spiritual care conferences, and been hired by corporate organizations who are keen to learn more about music’s role in health and wellbeing. She has built a team (both of staff, and board members) who also believe that music is something every caregiver can use. Please provide testimonials of family caregivers or former family caregivers who benefit from this support.
She was breathing so peacefully I barely noticed she passed away. She had been straining to breathe all day, almost gasping for air and rattling. The even and consistent distribution of medication along with the Room 217 music made a visible difference to ease her breathing. The nurse commented to me that it must have been the music that allowed her to pass away. Patty, Bowmanville, ON
Today as we literally played the Room 217 CD all day (and started it playing again as we just left), a beautiful calm filled not only daddy's room, but our hearts. I always thought your music was lovely, but until you come to a place for which your CDs were inspired and designed, it's then you benefit from the soothing to our weary souls. J.S., Oshawa, ON
Mom passed away last night peacefully with me by her side. I want you to know that the Room 217 CD's were a huge comfort to her and they were all she wanted to listen to. Thank you for your kindness and your gift of peaceful music. Anne Marie, Port Perry, ON
It was in February 2006 that my husband and I were told the news. The team at Sick Children’s Hospital in Toronto could no longer provide a cure for our 7½ year old son David, who had cancer. As parents how would we go home and explain death to David and his 9 year old brother? Naturally, we wanted to protect our children from pain and anguish, but we could not avoid what was happening – we had to enter into it as a family. We hung on to each other; talking, praying and crying together. Peace arrived in the form of music when a friend dropped off your first three Room 217 CDs. This music filled our home and filled our hearts with such beauty and grace that it was a therapy of healing in itself – a healing of our broken souls. That’s just about the only way I can describe it. Instead of dread, grief and sorrow, our home was filled with beauty, hope and healing. I am extremely grateful to you and your team Bev for the absolutely beautiful job you have done in using your combined talents to make these CDs available. They ministered to our souls in a way that nothing else did during this tumultuous time and continue to do so. Thank you once again – it is a precious gift through your voice and hands. Linda Wielinga, Port Perry, ON
I would like to take this opportunity to send my heartfelt thanks to all those involved with Recollections 1,2,3. My husband is in late stage Alzheimer's dementia. He enjoys the pictures and music and occasionally makes accompanying sounds. I have noticed when I play Recollections at meal times (when I am feeding him) it is easier for him to eat. I think it's because he has lost control of his tongue. When he eats his tongue gets in the way and frustrates him. The music and pictures take his mind off his anxiety and he is better able to eat and enjoy his meals. Thanks again. Sandra Smith, Cobourg, ON
Your training & music here has had a domino effect. My son, who’s 12, suddenly developed a neurological disorder 3 weeks ago out of the blue. We’ve been in shock. He has a large assortment of disruptive tics and spasms. We’ve been using the Room 217 music with him at school to reduce and/or eliminate his symptoms because it lulls him to sleep and he wakes up almost symptom free. At the very least it creates a super calm environment that him and his teachers have come to rely on. The school is now well versed in Room 217, how you’ve remastered the music and the influence on special needs. Melody Irwin, ON
Thank you for making this kind of knowledge available so conveniently and economically. I'm looking forward to your conference in Toronto. Janet Gadeski, Burlington, ON
Cast your vote.
Vote for your favorite Caregiving Visionary Nominee.Click to Vote.
Lillie has been an active member of Caregiving.com for the past four years. She is a graduate of the very first Certified Caregiving Consultant course from January 2016. She is now a Skills Consultant for students in the CCC course, helping students hone their listening skills.
Lillie began moderating chats on Caregiving.com in 2015 and currently moderates the After Caregiving Ends chat on Saturday at 7 p.m. ET. Lillie volunteered in Caregiving.com's 36-hour Christmas chats in 2015, 2016 and 2017, manning the late-night shift. Lille is a two-time steering committee member (2017 and 2018) for Caregiving.com's National Caregiving Conference. Lillie has completed several courses offered on Caregiving.com and hosts and participates in our weekly #carechat on Twitter.How does the nominee inspire others?
Lille left her career to take care of her mom full time. Just two weeks after her mom's death, Lillie began another career -- providing transportation for carees and their family members. Lillie often transports individuals to receive treatment for critical illness. Her kindness and compassion comforts her passengers during a ride which can be stressful and anxious. Four months after starting her job, Lillie now trains the new drivers. Lillie continues to help those who have lost a caree by moderating Caregiving.com's weekly After Caregiving Ends chat. Please provide testimonials of family caregivers or former family caregivers who benefit from this support.
Lillie is the hardest working individual at this conference. ~ an attendee at the Second Annual National Caregiving Conference
Lillie has a quiet strength which can move mountains. She has made herself available to me when I need to talk out a decision or work through a worry. She is a dear friend to any and all family caregivers. ~ A Caregiving.com member
Amy's parents had a storybook love story. He was a soldier, she the young girl waiting for her beloved to return from war. They married and had 6 children. One passed away suddenly as an adult, and it left the parents reeling. Amy's mother began to decline and Amy left her job, her hobbies, everything, to stay at home and be her sole caretaker. She learned to administer medications through a port, she learned many things in order to keep her mother at home and not send her to a nursing home. She stayed by her side, not going out for weeks except for doctors appointments. When the time came, it was Amy who was holding her mothers hand as she slipped peacefully into eternity. Three years later, once again Amy found herself in the same situation, leaving her job, her financial security, moving back home to the house where she grew up, to take care of her dying father in the same manner. A life of loneliness and solitude for several years as she faithfully served her father, loved him, cared for him, bathed him, handled all of the aspects of his financial affairs, administrative details, medications, emotions, struggles, etc. She also held his hand as he passed into eternity. Afterwards, she was in charge of cleaning out his house, packing, storing, distributing his belongings to family members, selling the family home, etc. She carried the weight of all of that, as the other siblings looked to her to be the strong one, the one to handle it all. She bore the burden of it, the lonliness of it, the brunt of the emotion of it all. Once the process was over, she began to look outward to see how she could be a light and a help to others that were experiencing the same situations that she had just come through.Tell us about the support the nominee provides. What makes it innovative? How has the support made caregiving easier or better?
Amy has become an advocate for caregivers in so many ways. She has written a book called Memories Of My Parents, describing her journey. She has also opened up a professional Facebook page encouraging caregivers to write in with their stories and struggles. Families gravitate to her, and she has sat with countless families and listened to them, visited their loved ones in the hospital, held their hands as their parent, or child, or other loved one slips away. She has wiped their tears, held their hearts in her hands, listened, and provided support. She has also written to, and address Congress, to advocate for Caregiver Rights, to help provided a stipend and financial support for caregivers as they leave their jobs, mortgage their homes, wipe out their 401K's and savings accounts to be able to stay at home and provide the care that their loved one needs. She has been invited to appear on the Ellen Show, she is awaiting an audience with former Vice President Joe Biden, she has received recognition from President Obama, she has worked closely with AARP to raise awareness and provide support in any way that she sees possible. She has a vision to start Caregiver support groups, "Caregiver Cafes", to help provide respite, financial support, etc. How does the nominee inspire others?
Amy inspires others in many ways. She is a visionary, and no matter what obstacles come her way, she goes forward with her vision and doesn't let anything keep her down or stop her. For the last year she has been fighting a terrible health battle, and has not been feeling good, but she keeps going forward for the good of others. She does not think of herself, but always how she can affect change for good in this dark world. It's not only for the caregiver that she advocates, but for the underdog and the unloved as well. She has written two children's books adressing the unpleasant and all too common topic of bullying and has been the spearhead for "LBN Clubs" (Let's Be Nice clubs) in many schools across the nation. She inspires through her photography, always highlighting the beauty of a new day, a new sunrise, encouraging others to not get stuck in the disappointments of yesterday, but to look forward with hope and expecation. Please provide testimonials of family caregivers or former family caregivers who benefit from this support.
This is,all to familiar. I wish cargiving was like it was in the 70s 80s..i was there underpaid but loved what I did. Worked hard and gave my best. But there were times later on I saw cargiving at its,worst. It was (just a job)attitude. I was so frustrated. Today 2017 I only wish I could teach these your worker caregivers how to be compassionate and treat the aging or young patient with dignity. I've seen it all wrong and I'm sure it still goes on. More qualification as a,CNA more education higher wage and screen the ones that are just there for the (job). Amy,
You are a warrior for caregivers.
When I see someone fighting for us, it gives me hope
When I was 10 and losing my mom it hurt but I did not know at that time how much it hurt until I got to my college years and then it hurt- I was not there at age 10 to say good bye at her bedside - that was really hard. Losing my brother at age 26 was like a hard brick hitting me and I fought to be strong but the insides ate me up. Years later I had a dream that I was able to say bye to him because in real life I did not answer that phone the night before when he actually called me - that ate me up for years, but I finally had a dream years later where in that dream I was actually able to say good bye where he died in my arms. When my dad died , I was there and I was able to say good bye . That made life so much easier knowing I was able to say goodbye .
How weird I tell you, a sister’s friend but how easy to tell you with how you tell the story of your parents, your brother and the love you share of your stories nationwide. You opened my heart a little more tonight of the heart and love you share to all and the guidance you share. Xoxoxo
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At the age of 31 I was diagnosed with a rare and debilitating disease called Dermatomyositis. My husband, Bruce, immediately became a caregiver. At the time, we had a two year old and a one month old. He was taking care of me and our children while holding down a full time job. Thirteen years later he is still helping me and helping raise our children. My disease causes muscle weakness so Bruce often has to assist me with things that I can't physically do. My disease is incurable so Bruce will be my caregiver for the rest of my life. We are now 45 years old and he is dedicated to keeping me as healthy as we can for as long as we can. He is my partner in every aspect of my health. Bruce takes such good care of me as well as our children. He is supportive, compassionate and a true helpmate!Tell us about the support the nominee provides. What makes it innovative? How has the support made caregiving easier or better?
A few years after my diagnosis Bruce went to work for a non-profit organization running a caregiving program. He now serves as the Executive Director of the Parkinson's Foundation of Oklahoma. Daily he helps Parkinson's patients live the best life possible with their disease. He leads support groups, talks with caregivers and finds programs that help these patients continue to live well with a Parkinson's. A few years after I was diagnosed, Bruce began to use his talent as a writer to inspire caregivers and patients. He has several books that are for all patients & caregivers. How does the nominee inspire others?
Bruce writes and speaks to caregivers and patients as often as he can. Every book and talk always have practical suggestions as well as things that encourage caregivers to take care of themselves and their care recipients. He tells our story with hope and uses humor and touching stories to help others through their caregiving situations. He inspires all caregivers that he meets because of our experience. Please provide testimonials of family caregivers or former family caregivers who benefit from this support.
Every Parkinson's patient and caregiver that comes through Bruce's office door are feel Bruce's support and encouragement. He speaks at caregiver conferences, support groups and churches giving helpful tips and spreading hope. He has helped hundreds and hundreds of caregivers find hope to keep going each day. Bruce has taken our hard and life changing experience and found a way to help other people. He is truly my hero!
Shavonn was caregiver to her grandfather who lost his battle to prostate cancer in 2014 after battling stage 4 prostate cancer for 12 years. She and her mother, Valerie Crawford-Schiele went on to co-found a nonprofit organization, Blue Flowers Org to empower women and the men in their lives against prostate cancer.Tell us about the support the nominee provides. What makes it innovative? How has the support made caregiving easier or better?
She through Blue Flowers Org provides workshops giving caregivers the resources needed to be effective caregivers, support groups and events for caregivers and care recipients alike can take "a day off" from caregiving. How does the nominee inspire others?
She inspires caregivers and volunteers everyday through her fundraising and outreach in the community that every person can play a role in improving the life of a loved one. Please provide testimonials of family caregivers or former family caregivers who benefit from this support.
"This organization supported us when we needed it most. Blue Flowers Org helped cover some of our medical bills when we couldn't afford it."
-Steve, Arlington, VA "I learned so much as a caregiver by attending the Prostate Cancer Care 360 Summit."
-Sandra, Atlanta, GA
Marty has been a caregiver for his wife Elaine for about 13 years. For most of that time, he cared for her at home while he also ran a business. Like many caregivers, he thought he could handle it alone. Eventually, the physical and emotional stresses of caregiving took their toll, landing him in the hospital. With the help of counseling and other support from his local Alzheimer’s Association chapter, he learned how to let go of his “first Elaine” and love his “second Elaine.” She moved to memory care assisted living 2½ years ago.Tell us about the support the nominee provides. What makes it innovative? How has the support made caregiving easier or better?
Marty Schreiber, a former governor of Wisconsin, has used his political connections and name recognition to help Alzheimer’s caregivers in substantial ways. In 2015 when he still cared for Elaine at home, Marty helped the Alzheimer’s Association launch “Operation: Stronger Together.” The multi-year awareness program has helped the Southeastern Wisconsin Chapter connect record numbers of families to Alzheimer's education and resources. Also in 2015, he collaborated with Wisconsin state government and various business groups to help create the online Dementia-Friendly Employers Toolkit, which is now used by human resources departments and employee assistance programs. How does the nominee inspire others?
Marty continues to turn his story of struggle into something positive. In late 2016, he released a book “My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver.” He has spoken at caregivers conferences, hospitals, to healthcare providers and business people to encourage, educate and provide hope and humor to people he calls heroes. In 2017, more than 8,000 people attended his 130+ presentations in four states (seven states are already booked for 2018). He drove more than 10,000 miles in Wisconsin alone, mostly at his own expense, for these presentations. He never charges a speaker’s fee, and he donates net proceeds from book sales to the Alzheimer’s Association. The media attention he receives also helps the general public learn more about the disease and how they can acknowledge and support caregivers. Please provide testimonials of family caregivers or former family caregivers who benefit from this support.
“Thank you for writing a much-needed book. I was the 24/7 caregiver for my father for over 18 months, and I can verify it is extremely hard on the caregiver. … I am just so glad someone has brought the plight of caregivers to the attention of medical personnel and particularly employers. I had to stop working in order to stay home with my dad, and that was a very difficult choice. I do not regret making it, but feel very sorry for those who have to endure working and caregiving.”
— Sue Beckers, Green Bay, Wis.
“We need to know more about the disease, and the family and everyone need to know what the caregiver goes through. I’m a 24/7 caregiver, and it’s true that people don’t understand how it can take a toll on the caregiver. Gov. Schreiber has some great ideas – that we need to look at the patient and go into their world, and yes, that there are two patients. Gov. Schreiber is a hero in my eyes.”— Carolyn Kroger, Charleston, West Virginia
“Thank you for this book. I will recommend it quickly. It rang true, given my experience with my blessed mother who died in 2005.”— Bill Karpenko, Rosemount, Minn.
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Vote for your favorite Caregiving Visionary Nominee.Click to Vote.
Tunza is currently in development with the National Brain Tumor Society, the ALS Association, Team FrateTrain (the most successful viral marketing campaign of all time with the Ice Bucket Challenge), The Commonwealth of Massachusetts Offichttps://images.caregiving.com/unsafe/pr:full/plain/posts/3d0e0170-3132-40fa-b2f2-f8f0c72854aa/amanda_headshot-e1518270063945.jpg/h2>
Amanda became a caregiver suddenly, at the age of 30. Her whole world was turned upside down the day her mother (Carolyn, but we called her Cookie) underwent emergency surgery to remove brain tumors. Within weeks, Cookie lost the ability to walk, talk, eat, or perform any activities of daily living. She required twenty-four hour care, which Amanda lovingly and devotedly provided. Amanda committed her life to Cookie's care until the day Cookie passed away the following year. In that time, Amanda sacrificed her own health, career, time, and life outside of caregiving. It uprooted our entire lives and was heartbreaking to see Amanda struggle to get Cookie the best medical care, therapies, and services. Eight months into taking care of Cookie, and upon losing her beloved job as a trial lawyer, Amanda resolved to become the attorney she wished existed to help her. Someone to guide a family caregiver to plan for the immediate needs of their loved one, but also to plan for months and years down the road. Someone who could help a caregiver find the resources to help with the illness or condition their family is facing. To work with the caregiver to keep their own life and finances stable throughout the caregiving experience. And ultimately, someone who makes sure that the caregiver doesn't slip through the cracks or feel alone in their caregiving responsibilities. And, I am proud to say, Amanda became all of that and more. Despite seemingly all odds (we have experienced multiple losses and setbacks since the time Cookie passed), Amanda opened a Caregiver Advocacy law firm in 2016, and it is thriving. To vote for Amanda, scroll to the bottom of our past for our poll. Priya served as a caregiver for her father for 12 years. Beginning in her 20s, Priya unexpectedly began to take on caregiving duties for her father as his health mysteriously began to decline. His frightening symptoms included the loss of motor control and the inability to speak. Despite undergoing numerous tests, her father’s illness remained a mystery. His care needs, however, increased rapidly as his health rapidly deteriorated. As the eldest daughter, Priya stepped in as the main caregiver in her family. It was critically important to Priya that she be present for her father when he needed her. Growing up in an Indian family, the messages of love and care for one’s elders were strong cultural traditions and those traditions were passed down to Priya. It was important to Priya that she honor her father by taking care of him, and indeed, she speaks with deep reverence of the time spent by intimately caring for him. However, as a young adult caregiver, Priya often felt isolated and alone in her acts of service to her father. True for many young adults with caregiving responsibilities, she was disconnected from other young people with her experience. After her father died in 2015, Priya dedicated time and space to engage in deep reflection regarding her feelings of love, devotion, grief, and loss. During this time of conscious reflection, she intentionally sought out other adult caregivers to share stories and practice empathy. It is through that time that Priya’s gift for active listening, empathetic communication, and healing presented itself as influential in the lives of others. Testimonial 2: Testimonial 3: Priya helped me gain clarity and grounding during a time when I felt alone dealing with a personal family issue. My 63 year old father suddenly needed help when he lost his career due to a bipolar disorder outburst, and I didn't know where to begin. I felt dis-empowered, lost, confused, angry, and completely overwhelmed like I needed to fix it all but didn't know where to start (and was it even my responsibility?). After meeting Priya, however, and gaining her help through a one-on-one session, I was able to release my pent up anxiety and emotions in the safe space she provided; I was able to gain an objective and loving check back into reality and focus in on what I really needed; and then she allowed me to move forward with my own boundaries, power, and stamina intact. Vote for your favorite Caregiving Visionary Nominee.
Amanda's business is innovative as the first (and only) caregiver-centered law practice that we are aware of. Her firm, Singleton Legal, connects with others under the name The Caregiver Lawyer. The firm serves a statewide clientele, with plans to expand in the future. She works in a very hands-on manner with her clients, handling everything from intake to follow up. Clients receive her cell phone number and instructions to call her as-needed. She's been known to take a frantic call on a Friday night from a client driving to the emergency room or to walk a client through the guardianship process for a self-neglecting sister on Thanksgiving night. Amanda's firm devotes a portion of the practice to pro bono services for those who cannot afford to pay. To make a difference beyond a one-on-one client relationships, she is expanding the practice. The firm is championing for policy change both in the private sector and publicly through law changes. From a grassroots effort seeking to have our hometown become a caregiver-friendly city to intentions to achieve national workplace legal protections for caregivers, she is as devoted to making a difference as she was devoted to caring for Cookie. Also, the firm is striving to make caregiving easier for working caregivers by offering her services to companies and HR organizations. Singleton Legal offers training, legal consultation, and mediation to ensure that caregivers who are employed are able to keep their jobs (and frequently, necessary income) while taking care of a loved one. It is the ultimate (admirable, lofty, and large) goal of Amanda's to change how our culture treats its caregivers. How does the nominee inspire others?
Amanda now frequently speaks at Caregivers' Conferences and other events. She speaks passionately and with eloquence about caregivers' needs and the importance of caregivers' rights, and I have witnessed her turn the lightbulb on for people who previously didn't understand the struggle most caregivers endure. She gave her time and talent to a local nonprofit as its Women's Economic Empowerment consultant in a push to develop hallmark programming for women and minority caregivers. Amanda helps others realize that they one day will care, or be cared for, and she gives them the tools they'll need to manage when the time comes. It is a goal of Amanda's firm that she not only advocate for caregivers, but that they learn to advocate for themselves. She is not shy about sharing her long-term goal -- to change the way professionals like doctors and lawyers serve caregivers, so that they identify their caregiver clients and meet their needs through a holistic approach. Please provide testimonials of family caregivers or former family caregivers who benefit from this support.
As the one who gets to hear how Amanda spent her day, I am proud of the appreciation and accolades she receives from her clients and community contacts. She has helped caregivers get insurance denials overturned for life-saving surgeries, she has intervened for families of isolated seniors who were slipping through the cracks of the system, and she has a genuine caring and concern for all who walk through the door of her office. She does not just do this professionally, but personally. Since Amanda's caregiving experience with Cookie, if a person in our life is ill or at the end-of-life, Amanda is the first to lend a hand and step into the role of caregiver again, if needed. She understands the importance of showing up and giving it her all. I truly believe that the world will benefit from what Amanda seeks to do, because for her, caregiving became a way of life and caregiver advocacy has become her calling.
Out of Priya’s own family caregiving experience, she started The Caregiving Effect LLC, a project dedicated to supporting adults who have cared or are currently providing care for their parents. What makes Priya’s work revolutionary is her approach to her clients. More than the usual “support group”, she views adult caregivers as holistic beings who are embarking on the journey of life—the act of caregiving serves as a catalyst for lasting, impactful change. Priya believes that every caregiver has a story to tell, and her work allows caregivers the space to deeply reflect upon their journey, past, present, and future. The overarching belief of The Caregiving Effect LLC is that caregiving does not always have to turn a caregiver’s life into a story of tragedy, even if one’s experience encompasses great loss and trauma. Rather, Priya promulgates a positive view that the act of caregiving can illuminate one’s life path, providing one with wisdom and learned experiences that can benefit other facets of life. Furthermore, the experience of caring for one’s parents can position an individual to mentor other adults who find themselves on a similar journey. The “effect” of caregiving does not necessarily equate negativity, but rather, the effects of caregiving leave an indelible mark of discovered life purpose and value. How does the nominee inspire others?
In the years that I’ve had the honor of knowing Priya, she has stood out as an advocate who truly cares about the well-being of other caregivers. She is committed to fostering the inner growth and development of those with caring responsibilities. Priya helps caregivers pinpoint their unique lessons from caregiving so that they may be able to serve as change-agents in the lives of other caregivers. Her work is deeply impactful, as every caregiver who comes into contact with Priya speaks of her ability to understand, comfort, validate, and heal. Indeed, her spiritual, holistic approach to the caregiving experience liberates caregivers to a place of transformation and hope for the future. Please provide testimonials of family caregivers or former family caregivers who benefit from this support.
I have had the gift of exploring my experience of living and caring for a dying parent with Priya. Her insight and curiosity guided me deeper into my own story, illuminating the poetry and sacredness of deeply painful memories. I am grateful to have crossed paths with Priya. Her capacity for compassionate inquiry is vast and each time I have the pleasure of talking with her, I feel more transformed. The way in which Priya has encouraged me to tell my story has been deeply soothing. It is not common to be able to speak freely with people about the dying of a parent, but Priya is so intentional and present that even brief moments in conversation with her have lifted years of grief. I am excited for the unfolding of this movement as it is certain to lighten hearts, create connection and most certainly, offer healing.
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Amanda became a caregiver suddenly, at the age of 30. Her whole world was turned upside down the day her mother (Carolyn, but we called her Cookie) underwent emergency surgery to remove brain tumors. Within weeks, Cookie lost the ability to walk, talk, eat, or perform any activities of daily living. She required twenty-four hour care, which Amanda lovingly and devotedly provided. Amanda committed her life to Cookie's care until the day Cookie passed away the following year. In that time, Amanda sacrificed her own health, career, time, and life outside of caregiving. It uprooted our entire lives and was heartbreaking to see Amanda struggle to get Cookie the best medical care, therapies, and services. Eight months into taking care of Cookie, and upon losing her beloved job as a trial lawyer, Amanda resolved to become the attorney she wished existed to help her. Someone to guide a family caregiver to plan for the immediate needs of their loved one, but also to plan for months and years down the road. Someone who could help a caregiver find the resources to help with the illness or condition their family is facing. To work with the caregiver to keep their own life and finances stable throughout the caregiving experience. And ultimately, someone who makes sure that the caregiver doesn't slip through the cracks or feel alone in their caregiving responsibilities. And, I am proud to say, Amanda became all of that and more. Despite seemingly all odds (we have experienced multiple losses and setbacks since the time Cookie passed), Amanda opened a Caregiver Advocacy law firm in 2016, and it is thriving.Tell us about the support the nominee provides. What makes it innovative? How has the support made caregiving easier or better?
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Priya served as a caregiver for her father for 12 years. Beginning in her 20s, Priya unexpectedly began to take on caregiving duties for her father as his health mysteriously began to decline. His frightening symptoms included the loss of motor control and the inability to speak. Despite undergoing numerous tests, her father’s illness remained a mystery. His care needs, however, increased rapidly as his health rapidly deteriorated. As the eldest daughter, Priya stepped in as the main caregiver in her family. It was critically important to Priya that she be present for her father when he needed her. Growing up in an Indian family, the messages of love and care for one’s elders were strong cultural traditions and those traditions were passed down to Priya. It was important to Priya that she honor her father by taking care of him, and indeed, she speaks with deep reverence of the time spent by intimately caring for him. However, as a young adult caregiver, Priya often felt isolated and alone in her acts of service to her father. True for many young adults with caregiving responsibilities, she was disconnected from other young people with her experience. After her father died in 2015, Priya dedicated time and space to engage in deep reflection regarding her feelings of love, devotion, grief, and loss. During this time of conscious reflection, she intentionally sought out other adult caregivers to share stories and practice empathy. It is through that time that Priya’s gift for active listening, empathetic communication, and healing presented itself as influential in the lives of others.Tell us about the support the nominee provides. What makes it innovative? How has the support made caregiving easier or better?
Testimonial 2:If you asked me which words I would use to describe Priya and my time working with her, I'd say: kindness, compassion, deep understanding, and healing. Priya has a natural gift of holding sacred space for those she works with. I always felt heard, seen, and supported. Her desire to help me continue reaching landmarks in my journey was felt through the unique gift Priya has of helping us gain peace and clarity from our life stories. I whole-heartedly recommend her.
Priya helped me gain clarity and grounding during a time when I felt alone dealing with a personal family issue.
My 63 year old father suddenly needed help when he lost his career due to a bipolar disorder outburst, and I didn't know where to begin. I felt dis-empowered, lost, confused, angry, and completely overwhelmed like I needed to fix it all but didn't know where to start (and was it even my responsibility?).
After meeting Priya, however, and gaining her help through a one-on-one session, I was able to release my pent up anxiety and emotions in the safe space she provided; I was able to gain an objective and loving check back into reality and focus in on what I really needed; and then she allowed me to move forward with my own boundaries, power, and stamina intact.I hope any adult child of a parent who needs help find their way to Priya so that she can offer the same loving, grounded, strong, and practical support she provides.
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Beth cared for her elderly father through five years of hospitalizations, dementia, and complications from diabetes — including multiple amputations. The family took a medical journey through three types of hospitals in three states — a Florida community hospital, a New Jersey regional trauma center, and a New York City academic medical center.
It took Beth a long time to realize she had any power at all. Then she discovered that she had a great deal of power to help her dad get the best care, make informed decisions, and prevent readmission. She and her sister, Clare, learned so much during their dad's healthcare odyssey that they were able to keep him out of the hospital through his squamous cell cancers and the entire last year of his life, through his squamous cell cancer diagnosis and a painless, peaceful death at home, just as he had always wanted.
Beth tells the story this way: The most important job you will ever have falls on you with a deafening thud that shocks you to the core. The job title is family caregiver, and the compensation package is unusual: No salary, and the bonus is continuously increasing responsibility for a person who has historically been responsible for you.Here’s how I got this job:
My father’s “lady friend” called to report that my 82-year-old dad was in an ambulance on his way to the hospital. My dad lived alone and had never been hospitalized. He had type 2 diabetes that he controlled well, and until he developed a diabetic foot ulcer a few months before, he played golf three times a week and was “healthy as a horse,” as he liked to say.
So my sister, Clare, and I hopped on a plane from New York to Florida to understand first-hand why Dad had fallen out of bed and couldn’t get up, and how badly he’d injured a finger in the fall.
When we arrived at the hospital Dad seemed basically fine, so we were still completely unprepared for the discussion that followed. His doctor pulled us into the hallway to tell us without preamble that Dad had diabetes, neuropathy, and dementia. Jab. Hook. Sucker punch to the belly. That’s how it felt. I physically staggered backward at each word, as if I’d actually been hit.
Welcome to the new job.
The first task at every new job is to understand the current status. Yep, we knew about the diabetes. But what the heck is neuropathy? And dementia?! My father’s mother had suffered from dementia in a nursing home for 10 years. We knew the heartbreak that meant. We were picturing my dad looking like mean old Grandma in a wheelchair, barely able to speak. My sister burst into tears. I was in shock.
Then I thought, wait a minute. We both visited Dad regularly and I had called him every day at 5 p.m. since our mother passed away four years earlier. I knew he didn’t have the Grandma-like dementia my sister was picturing, and I needed to understand how the doctor had reached that diagnosis.
The doctor explained that he had ordered a CAT scan to try to understand why my dad had fallen out of bed and why he couldn’t get up. The test results showed significant brain shrinkage consistent with dementia. And because my dad’s blood sugar had spiked, he wasn’t his usual completely coherent, I-run-the-company/we-do-things-my-way self. So, a dementia diagnosis. After further discussion with my dad, his doctor had to concede that my dad’s cognitive functioning was much better than the doctor had expected given the test results.Ok, status check and next steps:
• Dementia is in play and can be expected to worsen over time. Not critical at this time. Next.
• Neuropathy in Dad’s case meant a little numbness in the feet, but nothing that hindered his activities of daily living much less his golf game (he regularly shot his age). The diabetic foot ulcer was not healing quickly, but it wasn’t bothering my dad. Next.
• The immediate problems were the sprained finger and the unknown cause of the blood sugar spike.
Ok, this could all be much worse, we thought. And because we were new at the job, we didn’t understand all of the ramifications of the dementia or the neuropathy.
But the finger injury triggered a torrent of activities that included innumerable emergency department visits and hospital stays in three hospitals and eight rehabs in three states over four years. Sound exhausting? It was. Sound like another full-time job? Sometimes it was. My job grew from cheerful dutiful daughter at the hospital bedside to becoming the parent in the relationship as my father slowly regressed to become the rough equivalent of a large, willful eight-year-old boy.
I grew with the job. I continually took on new responsibilities, and eventually managed a budget (dad’s finances), hired, monitored, managed, and paid employees (dad’s aides), handled regulatory issues (dad’s legal and insurance matters). I even bathed and dressed Dad on many occasions — which was a huge stretch assignment and way out of my comfort zone. I excelled at all of the parts I could control. But there was one significant part I couldn’t control — the hospital stays. That was the part where I needed the most help and where I, a person who loved him and knew him well, most needed to help.
I needed help because the family caregiver job was assigned to me randomly and I had no background, experience, or qualifications. The job specs were impossible to pin down, project milestones never met projections or timelines, and there was no training provided. Because no training existed.Dad needed the help because he was the most vulnerable. He had trouble understanding accents, had bone and urinary tract infections that rendered him practically mindless, and suffered from sundowning. I learned that term (and many others) and what it meant only because a nurse mentioned it casually and somewhat dismissively as she was leaving the hospital room one day. It’s so common in the hospital world that no one thought to bring it up and explain it to us. And often the hospital staff was unaware that he was sundowning, because they didn’t know he was behaving or processing information unusually.
Only those who knew him well could cue the hospital care team about changes in mental status, which directly affected his care. He regularly gave untruthful responses without meaning to or knowing that the information was inaccurate. Sometimes an infection made him completely disoriented (“It’s good to be back in Boston,” he once said as he looked at his native New York City skyline from the hospital window). And he never wanted to bother hospital staff with requests or complaints.
But being a family caregiver for my dad was the best job I’ve ever had. Despite the emotional rollercoaster and juggling to manage a life filled with competing priorities, nothing has been more rewarding than taking care of the person who took care of me and had my back for my whole life.Tell us about the support the nominee provides. What makes it innovative? How has the support made caregiving easier or better?
Beth volunteers at a caregivers center in a NJ hospital to help patient families manage the hospital stay and make critical decisions when life won't be returning to normal after discharge. She provides warm emotional support and practical advice to help family members manage a rollercoaster of emotions and balance their needs with the needs of their loved one. Beth created an easy-to-read guide called How to help your loved one in the hospital: You can make a difference. It provides an overview of the information she wishes she'd received when her father first arrived at the hospital. She provides the guide free of charge to help family caregivers learn:
- What to expect in the hospital
- How to help a loved one get the best care
- How to plan for care at home after the hospital stay
Surprisingly, this information is not available anywhere else, so Beth decided to create it. The guide is now in a number of hospitals, doctor offices, and nursing homes. To help spread the information, Beth will be speaking on this topic to hospital administrators and physicians at the Institute for Healthcare Improvement Annual Summit this spring.
Having an understanding of the role of a family caregiver and knowing what to expect in the hospital gives family members a sense of control in a situation in which they typically feel powerless. Having written guidance to refer to makes caregiving more manageable because it helps caregivers move past their anxiety and fear to help coordinate care, get their loved one better faster, and help prevent complications at home after discharge.How does the nominee inspire others?
Many people in the hospital caregivers center where Beth volunteers tell her that she inspires them to consider volunteering at the center once their caregiving days are over, to pay forward the kindness and support they receive there. Please provide testimonials of family caregivers or former family caregivers who benefit from this support.
From a thank you note a family caregiver sent Beth: I couldn't have made it through 2017 without all you did for me and my family. I can't even begin to thank you. You helped us through a crisis and brought a breath of fresh air into our home along with delicious, comforting meals and beautiful flowers. You were a lifeline for me to my workplace and you have no idea how much that simplified my life. I appreciate that you factored my needs into your day so often with a quick text to offer help or a good word. And you addressed my emotional well-being, not just my physical well-being. Your support gave me such peace of mind and a feeling of security.
Donna began her career as an actor, director and teacher. But in 1988, when her son Nicholas was born with severe disabilities, Donna embarked on her second career as a caregiver activist, author, teacher and blogger. Nicholas has severe cerebral palsy, epilepsy, chronic pain, crohn's disease and life threatening sleep apnea. Despite his many challenges, Donna and her family have supported Nicholas to have a rich life and rewarding life.
Donna and her husband Jim cared for their son Nicholas in a home hospital setting for 23 years. In 2011, Nicholas moved into a nearby care home where he receives round the clock one to one nursing support. Donna and her family continue to coordinate Nick's medical care and support his social and emotional needs on a daily basis. Donna's mother is 96 and frail. Although she lives in a city about two hours away, Donna works together with her sister to support their mother's growing needs within an assisted living home. These days, enabling purpose and meaning in her Mom's life is a preoccupying challenge for Donna.Tell us about the support the nominee provides. What makes it innovative? How has the support made caregiving easier or better?
Donna provides innovative support to her own family members and to the caregiving community at large by gathering and sharing information within a circle of care for her son and mother and within peer to peer support caregiving groups.
Within the circle of care for both her son and mother, Donna uses Tyze Personal Networks, an online care coordination tool that includes both family members and medical professionals including care staff and physicians.
For peer to peer information gathering and sharing, Donna uses Huddol, an innovative new tool that enables her to research and chat about both her mother's challenges as well as her son's. Each 'Huddol' is a group of like minded caregivers with common challenges and so Donna uses both her location and the diagnoses of her family members to find caregivers who can help each other.
Within the greater care community, Donna knows that evidence based care has its roots in research. In 2015, Donna began participating as a family partner in research, influencing both what is researched and how it is researched in health conditions that relate to her family. Donna's expertise has grown in this area and currently, she is co-writing the curriculum for a graduate course in family partnered health research for both patients/family members and research trainees at McMaster University in Hamilton, Canada.How does the nominee inspire others?
Donna is the author of The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving (McArthur and Co. in 2010 and The House of Anansi Press, Toronto, 2014), a biography in which Donna examines how families can be supported to have a good life despite significant challenges of health and caregiving in families. Donna's blog, The Caregivers' Living Room (average 15-20K page views per month) was named one of the 50 Top Caregiving blogs and one of the 60 Top Aging Blogs in 2017 by Feedburner. Her Facebook group (also titled The Caregivers' Living Room) and her twitter feed (@thomsod) have a combined following of over 4,300. For Huddol, Donna has presented podcasts on best practice in advocacy for caregivers as well as on how to manage emotions in very challenging times of transition. Currently, Donna is co-writing a new book for caregivers with Dr. Zachary White, author of the blog The Unprepared Caregiver. Please provide testimonials of family caregivers or former family caregivers who benefit from this support.
"A clear-eyed look at the value of a life...What if a life was judged not by its monetary worth or possible economic benefit to society, but as a series of complex and rewarding relationships?"
Globe and Mail "I am so impressed and so moved to get a copy of The Four Walls of My Freedom...It is a wonderful book which is inspiring, informative, and deeply encouraging. And of course I am also very grateful personally to you for your very kind words. It has been a wonderful pleasure for me to meet you and to learn about and be inspired by your ideas on this subject. Your particular insights and engagements make the general commitment we try to advance so much easier to understand, appreciate, and use as guidance."
Amartya Sen "I am deeply moved by this book. It is about being human, finding wisdom and learning to live in the face of pain. It is about seeing under the suffering and needs of people with disabilities, their value and beauty, their uniqueness and dignity. This book should be read by all who seek to understand what it means to be human."
Jean Vanier, founder of L'Arche "The Four Walls of My Freedom deals with a very hard situation with realism, grit, and optimism. It will resonate with many."
Margaret Atwood, Twitter: August 4, 2011 "What does it mean to live 'a good life,' and how can we help the most vulnerable people around us to live life to the full? Donna Thomson provides some answers from personal experience in this engaging, challenging, life-enhancing book."
Ian Rankin " tremendous piece of work. Elegant, honest and inspirational...Caring makes the world go round - it is critical to our individual, family and societal well being."
Vicki Cammack and Al Etmanski, co-founders of PLAN "Donna Thomson's world changed utterly when she gave birth to a severely disabled son - with a wicked sense of humour...she makes a powerful case for caring to be accorded respect, and demands that we all think about what really matters."
The Times (UK) "A LIFELONG JOURNEY - What does it mean to be a good mother? How do you know if you are providing your child iwth the best possible quality of life? The Four Walls of My Freedom by Donna Thomson is an honest, intelligent account of raising a son born with cerebral palsy, describing a journey through motherhood where regular road maps don't apply. Loaded with info and insight, this book will resonate with those in a similar situation."
Erin Poetschke, Canadian Living Magazine, April 2011 "In The Four Walls of My Freedom, Donna Thomson traces her family's experience with her son Nicholas' cerebral palsy from diagnosis to his recent 21st birthday. This is the story of the fine balance between caring for Nicholas's physical requirements while nurturing his spirit and tending the needs of the whole family. The personal is political in this book, which is clearly aimed at provoking thought about the rights of persons with disabilities to be valued in society and to live a meaningful life."
Abilities Magazine, Issue 84, Winter 2010/2011
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For several decades she has lent the full breadth of her heart and talents to those in need and especially their caregivers. She knows from personal experience that caregiving touches everyone at some point in life and more likely several times. It wasn’t a role she aspired to, but was rather destined to fulfill.
Her deep and personal understanding of the challenges facing caregivers began in the mid-1980’s when her own life was swallowed up by caregiving responsibilities to help her widowed mother through a four-year period of worsening chronic conditions. Sheila quit her job–as is the case with many caregivers–so she could care for her mother who lived in another state. In the process she became socially isolated. Her brother and his family were living in Japan. Her friends didn’t understand what she was going through or how to be helpful, and she grew exhausted and increasingly depressed as she came to terms with a painful reality: that even with her full-time assistance and the help of aides, her mother could no long live at home. A nursing home was the only option–one that was ultimately successful, but emotionally harrowing. Sheila continued to be her mother’s solitary advocate and “mother” during the seven years she lived in the nursing home.
Simultaneously Sheila was dealing with another caregiving experience that ultimately turned out to be more extraordinary. It began in 1988 with a desperate phone call from her best friend, Susan, a single working mother with two young teen-aged daughters, who had been diagnosed with a rare cancer. Susan’s other friends were aware of her first surgery and radiation treatment but were in the dark that the cancer returned several times and she was at her breaking point. At the suggestion of her therapist, Susan called friends to a meeting the very next evening at Dr. Sukie Miller’s office. Sheila and 11 other women–most of whom had never met–participated in this first get-together, and for the next three and-a-half years did everything to support their gravely ill friend and her daughters navigate the rocky road ahead.
Sheila and this newly formed coalition, later dubbed “Susan’s Funny Family,” created a system in which they rotated the caregiving responsibilities and sharing the workload so that no one was ever overwhelmed. In the days before cell phones and the Internet, they figured how to track Susan’s myriad of doctor and radiation appointments as her condition turned into bone cancer and she continued to deteriorate. Lovingly, in the last months of Susan’s life they saw to every detail Susan wanted to make her youngest daughter’s wedding a day to remember. Susan died in late 1991.
Susan’s death gave birth to a landmark movement when a woman, in similar circumstances, who knew about “Susan’s Funny Family” called asking for help. Sheila and other “Family” members got to work planning a meeting to explain this woman and 20 of her friends (including men this time) how they could follow their systems and use their forms. Importantly, they shared what each had individually learned or gained from their experience together.
During this meeting Sheila was struck with how this woman’s friends changed from “fearful to calm” and “uncertain to empowered” once they were given a specific plan to follow. She recalled how her own solitary caregiving experience had negatively impacted her career, financial stability and threatened her own health. She reflected that in the late 80’s and early 90’s there was no help or support to guide caregivers. It was a time when caregivers, even during the huge AIDS crisis, were not recognized for their caring efforts and sacrifices.
The next morning Sheila called fellow “Family” member and friend, Cappy Capossela, to say “we need to document our work so that others can follow in our footsteps.” Share The Care, How To Organize A Group To Care For Someone Who Is Seriously Ill, by Sheila Warnock and the late Cappy Capossela was published in 1995 by Simon & Schuster Fireside Books.
Before they knew it, their grassroots option to an all-too-common challenge had caught fire, taking shape as a concrete strategy to help people (of all ages) with a health, medical or aging crisis find support and keep it going over long periods of time. A Share The Care™ group’s support extends to the care recipient’s whole family as well. The book was spreading via word of mouth and media attention.
Sheila and Cappy poured any money they had made from the book into publicity. They started receiving letters, cards and telephone calls from grateful people who had followed the step-by-step guide to hold a (scripted) meeting and form their own Share The Care group.
Seven years later, in early 2002, the unthinkable happened. Both Cappy and her father were diagnosed with brain cancer within two weeks of one another. Within days, Sheila organized 32 of Cappy’s friends into “Cappy’s Brain Trust” and did everything for her. The experience was exceptionally strenuous for everyone involved (including health professionals) as Cappy lost her speech, ability to write, or even walk. She was totally helpless. Both she and her father died within 12 hours of one another 10 months later.
Cappy’s death was the turning point for Sheila. Recognizing that such collaborative form of caregiving needed round-the-clock attention if it were to reach its full potential, Sheila left her successful advertising career and launched a non-profit organization devoted to bringing the model to the attention of a wider audience.
It is astounding what Sheila has accomplished in just 15 years since founding ShareTheCaregiving, Inc. (aka Share The Care™ or STC) with only the assistance of volunteers and her Steering Committee and Board.Tell us about the support the nominee provides. What makes it innovative? How has the support made caregiving easier or better?
When Sheila started out in 2003, all she had was the first edition of Share The Care and a vision of it becoming so much more. Rather than work locally she knew Share The Care needed to reach a global audience. Today, groups have been documented in 48 states, 2 U.S. territories, and 13 countries.
A few examples of how and where Sheila has evolved the model to reach more people and make caregiving better.
1. She revised and updated Share The Care for a second edition in 2004 and added 50 pages of new information that came from the work Cappy’s Brain Trust devised to better take care of someone with a rapid, and difficult terminal illness. Sheila also did some informal research to gather suggestions and ideas from groups around the country using the Share The Care model. As a result the book was cited by The Library Journal as “One of the Best Consumer Health Books of 2004.”
2. The Share The Care Website was first built in 2004, and totally overhauled in 2015. It won a “Caregiver Friendly Award” for Best Media. Sheila totally re-wrote and reorganized all the information into sections so that diverse audiences could quickly locate what they needed: Caregivers and Concerned Friends, Health Professionals, Faith Communities and Corporations. She also publishes a newsletter. See: http://www.sharethecare.org
3. Sheila is an empathetic and visionary speaker/teacher/storyteller and early in her non-profit work she realized that caregivers are too busy to come to presentations and rarely seek help or even identify as a caregiver. Determined to reach them, she forged a sound way through the health professionals and faith community leaders they see on a regular basis. She developed a curriculum for a full-day accredited (by the Northeast Multistate Division RN Continuing Education Unit) training to root the model into communities across the U.S. and Canada. It is called “Seeding Share The Care™ in Your Community Program.” To date, she has personally trained approximately 1,600 health professionals in 11 states and Canada.4. The “Seeding Share The Care In Your Community” inspired several very large programs including:
SW Ontario STC Campaign: The South West Local Health Integration Network (LHIN) funded a two-year knowledge transfer campaign in Ontario, Canada from 2009 to 2011. Sheila led four trainings to kick things off with a local Coordinator. A summative evaluation of the campaign revealed that 4,100 people attended information sessions and almost 7,000 information packages were distributed at presentations, health fairs, and conferences.
Wisconsin State Share The Care Stations Program: In 2011 a Share The Care Stations Pilot Program was launched in Wisconsin to meet a growing need for more caregiver information and support. Sheila led a training for a network of aging specialists to introduce the model and to establish Stations. A Special Projects Coordinator was hired by Greater Wisconsin Agency on Aging Resources to manage coordinators in various counties. This effort resulted in 15 Wisconsin Stations.
The Island of Kauai STC Program: This presented a special challenge because locals have very small networks as family may live thousands of miles away on the mainland. In 2012 Sheila trained 54 professionals and volunteers and offered strategies to employ in this situation. They operated, under Kauai Hospice, like “one big family,” helping people (not just hospice patients) around the island. For caregivers without sufficient networks, regional STC volunteers filled in to form “hanai”–extended families. They helped over 300 individuals/families and were widely recognized by the mayor, the media and residents.
Wisconsin STC and Alzheimer’s/dementia Program: In 2015, Share The Care was incorporated into a 3-year state effort targeting people with early stage Alzheimer’s disease or dementia living alone as well as those with family caregivers. Sheila led two professional trainings that included specific strategies for groups to use when working with patients with Alzheimer’s disease, to launch the program that was led by a WI Coordinator with extensive Alzheimer’s experience. The program progressed well with adjustments to the model to accommodate the person with dementia and their care partner and team and demonstrates how the framework of Share The Care allows for flexibility in this and other programs.
5. Share The Care Stations were developed for communities to establish following a “Seeding Share The Care in Your Community Program” training. A Station consists of a trained professional or volunteer, who can provide information and coaching, if needed, in a local community. An actual Station place can be anywhere (hospital, hospice, community center) where there is a desk, computer, and telephone. ShareTheCaregiving created and offers advertising to make the community aware of the model. Ads feature a local number so people can contact the Station Manager. A Station Manager makes presentations around the community to inform people about the model and how they can provide support to someone in need. (Stations: Wisconsin, S.W. Ontario, and upstate New York for the Saint Regis Mohawk Tribe.)6. A Share The Care study entitled “The Role of Unpaid Volunteers in a Group Caregiving Approach: Validation of the Share The Care Program” by Amy Hegener, PhD was published in the 2016 Journal of Gerontological Social Work. The study included 134 people–care recipients, family caregivers and individual group members from the U.S., Canada, Australia, The UK, and Hong Kong. The findings provide a foundation of supportive evidence that confirms that Share The Care:
1. supports a care receiver’s ability to stay at home with necessary informal systems in place;
2. increases the caregiving preparedness of group members, enabling them to be more effective teammates;
and future caregivers;
3. is replicable and its functionality can be applied across a variety of settings and circumstances;
4. ensures longevity and a successful caregiving experience through its structured system of care;
5. helps reduce the burden of the caregiver;
6. has a positive impact on the well-being of the caregiver, care receiver, and group members.
(A copy of the article is available upon request.)
7. A Proven Option for the Caregiving Crisis: Share The Care is now an evidence- informed group caregiving model with a 22-year track record and can play an important role in the coming “caregiving crisis.” Not only will there be fewer health care professionals to care for all the aging Boomers over 65 by the year 2030, but there will not be enough younger people who might take on that role. Sheila also recognizes the increasing numbers of people who live alone (31 million) far from family or who have no family. She penned an article “Who Cares For The Person Who Lives Alone?” and suggests everyone start giving two hours a week to help each other now, so that by 2030, providing support would become routine rather than a burden.
8. The model provides not only information on how to establish a group but also how to MAINTAIN their efforts. Besides a scripted meeting, 23 forms, 7 Principles and systems to share responsibilities, groups are made aware of unique occurrences that signal when their team needs to re-group to evaluate what needs to be changed in terms of their work–do they need to do more, do less or do differently? This situation usually occurs when there has been a dramatic change in the care recipient and is critical advice for any group.
9. Share The Care is cost-effective caregiving. The book cost $17.00. All forms in the book (and more) can be downloaded and printed from the website. Additional materials also available: create an Emergency Plan, suggestions for the first weeks that a group is in action. Sheila makes herself available for email and telephone support.
10. Share The Care groups have also been effective with transitioning people to assisted living, a nursing home or hospice when they can no longer provide safe or needed care at home. They continue their visits and advocacy for their friend or loved one in the new location. This continuing support makes a difference in “quality of life.”How does the nominee inspire others?
All of these testimonials are from people who have been caregivers themselves: “Sheila Warnock is a dynamic, spirited woman who is alive with purpose. When she walks into the room, her presence is felt, and the moment she speaks her mission to ‘share the care’ is advanced. I first met Sheila at a fundraiser for my own non-profit that provides a unique form of coaching and strategic planning for community-serving organizations. Sheila showed up and listened with curiosity, the rapidly approached me to say, ‘I need your help.’ Sheila is vision-driven. She is a continuous learner and a leader who is not afraid to be vulnerable. These are powerful indicators to me that she can realize her dream. Sheila walked away from a promising career to follow this deep calling that is full of financial insecurity and complex new challenges. Sheila Warnock works tirelessly. My sense is that she will not stop until Share The Care becomes a household name, and her simple-to-follow community-caregiving model is the new norm for how we care for our loved ones and ourselves.”
Melinda Lackey, SEEDimpact.org (Stretch…Enliven…Ennoble…Discover) “Sheila Warnock is a woman ahead of her time and that time is hopefully catching up with her. Share The Care, which she created, is innovative, creative, giving, kind, loving, practical, and most of all, IT WORKS! Like so many trailblazers, she’s done this work out of a personal commitment. That is to the cause of helping people who are ill and very often alone, overwhelmed and dying. Sheila saw a need and designed a way that it could be met, involved many others, and sacrificed her own needs, so it could happen. In the process, she creative a model that benefited the caregivers as much as the care receivers, and demonstrated what real community can look like.”
Cynthia Burke, Outreach Director, Friends in Deed “In February 2011, I attended a Share The Care workshop for healthcare professionals, social workers and clergy of Monterey County, California. The seven-hour event was conducted by Sheila Warnock. Here intelligently organized presentation was delivered with grace and humor. Sheila is an excellent speaker. She is committed to her subject and having walked the walk, talks the talk so easily that I, and as others also observed, never experienced a single down moment in those seven hours. Unheard of, in my experience, having conducted many trainings as the senior information officer for the Bay Area air pollution control district. What did I walk away with, besides a profound admiration for the warm and smart person that Sheila Warnock is? I am convinced Share The Care is perhaps THE most viable model for individuals facing daunting scenarios of caring for disabled loved ones, the dying, those returning to health, and for all our children. We live in new times when government at all levels is either unwilling or unable to offer the kinds of assistance we once took for granted and now seem to need more than ever before. SHARE is the operative concept here. Through this model caregivers are not forced to go it alone and those who are willing to pull an oar for a friend or a total stranger can do so without becoming overburdened by the effort.
Will Taylor (retired governmental information officer and spokesperson)
“I’m writing to describe a unique and wonderful woman who is responsible for one of the most profoundly revolutionary concepts I’ve ever encountered. Our organization has worked with researchers, innovators, scholars, and business people from some of the world’s largest institutions, from IBM and Bell Labs to Yale, Cornell, the Smithsonian and the National Science Foundation. But Sheila Warnock, in her quiet and sincere way, has created something equally powerful, with tremendous potential for our society.Sheila has lived the experience personally and very emotionally; she transformed it into a powerful, catalytic program. Share The Care is a rigorous and detailed framework for organizing voluntary social groups (friends, neighbors, co-workers) to help with care on a daily basis. A Share The Care group might have 10 to 40 members, all volunteering to do what’s comfortable and feels good for each of them. With the STC program, the group structures and mobilizes itself; tasks are divided and shared. And yet it’s much more than casual neighborliness: it’s ‘industrial strength’ caregiving, capable of sustaining the patient and family, through months and years if necessary, through the worst and most difficult scenarios. Share The Care transforms the act of caregiving from a crushing burden on a few individuals to a joyful and enriching experience shared by a community of friends. I believe that we’ll all be participants in multiple Share The Care groups, as we move through life and our family and friends go through transitions.”
John Reaves, Learning Worlds, COMMUNICATING IDEA
Please provide testimonials of family caregivers or former family caregivers who benefit from this support.
Share The Care has touched so many caregivers and care recipients over the last 22 years; it is difficult to just pick a few examples:
“I cannot say enough and am very thankful for the love, generosity, and assistance that our STC group provided to both of us. STC became a symbol to me of friendship and everlasting goodness that has stayed with me all the past eight years and will be with me always…An outcome of the STC was what Charlie’s VFW colleagues said to me, ‘You now have 100 brothers to help you in whatever you need or want. Just ask!’” Nancy McClintock, Maryland“The encouragement and the practical suggestions in Share The Care are making the difference between wife Betsy spending her last years in a nursing home and spending her last years in our home, surrounded by p people (Team Betsy) who love her.”
Richard Baer, RN, M.Ed., Denver, CO
“We were all novices in the area of caring for someone who was terminally ill and we gathered for the prescribed first meeting of Kate’s friends with a certain amount of trepidation. As well as Kate, some of her family were visiting from England and there was an all-sorts section of friends: academics from work, former students of hers, neighbours, colleagues from other work places and members of the two book groups Kate belonged to. We went on to care for Kate for eighteen months and yes, apart from respite and assessment visits to palliative care, she remained at home to the end. It was a life-changing experience for us all. It was confronting, it was hard, it was challenging but it was fun, rewarding and very precious.” Margaret Eldridge, Tasmania, Australia
“I was sitting here this morning re-reading some of the Brain Trust emails chronologically from last year. We were all excellent communicators, and I found reading them really took me back into the experience in a very vivid way. Who each of us is came through in our individual notes. Our fears, our uncertainties, opinions, hopes, beliefs, concerns—it’s all there. I just felt like writing you a note to mention that in reading the emails I think everyone in Cappy’s life was absolutely HEROIC in their efforts. Over the last few months, I’d forgotten all the emergencies and setbacks and the way the group responded to everything we were dealt. There is no question in my mind that she got the best possible support and help any human being could ask for.” Steve Lance, Cappy’s Brain Trust
Joy is a compassionate caring person that has helped so many people in her life. She has taking care of a large community of LGTBQ and has cared for her family and her husband with a terminal illness. I feel blessed to have crossed paths with this human being. I pray she wins this competition because I cant think of anyone else that deserves this award.Tell us about the support the nominee provides. What makes it innovative? How has the support made caregiving easier or better?
She supports care givers by trying to make their lives easier. She has invented three really innovative products that help make bathing and making sure your loved ones don't get bed sores. How does the nominee inspire others?
She inspires others through her giving and caring for the well-being of others. She has invented three things that would make home-health easier especially during an emergency like a hurricane storm. I hope her inventions get the backing they need. Please provide testimonials of family caregivers or former family caregivers who benefit from this support.
I have seen testimonials of people that Joy has helped with her invention on her website. joyzmedicalconcepts.com.
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