National Family Caregivers Association

Friday May 9, 2008

CCAN Volunteer Stories

Below is a collection of stories from CCAN Volunteers. They explain how they initially got involved in caregiving and how they assist the organization

ARIZONA - Lois Von Halle
CALIFORNIA - Nancy Miller, Ph.D., MSW
CONNECTICUT - Susan Bria
MA/CENTRAL NEW ENGLAND - John Paul Marosy
MISSOURI - Wilma Schmitz
NEBRASKA - Eboni Green
NEW JERSEY - Lauren Agoratus

To find out if there is a CCAN volunteer in your state, click here.

ARIZONA
Lois Von Halle
Lvh314@aol.com

Getting involved with NFCA has been one of the most rewarding experiences of my life. I had been caring for my husband who has MS for about nine or ten years when I heard about NFCA. I juggle a 40-hour workweek with major caregiving demands (he has lost his mobility), so I was really glad to learn about the organization. I read the "Take Care" newsletter religiously.

I became a CCAN representative almost by accident. I responded to a note in the newsletter thinking I was seeking information and ended up being the one providing it.

Helping other family caregivers wasn't new for me I had been running a support group for other MS caregivers for some time. Today that little group is a much bigger one and part of the Well Spouse network.

By being part of NFCA I have been able to learn what is available in other parts of the US. This inspired me to seek out similar services here in Arizona. I have been lucky that another Arizona-based CCAN representative has come on board. Bonnie Danowski is very well versed in the Phoenix grassroots community and political arena. She is an eager beaver and we work wonderfully together. We have become experts on what is available in Phoenix and Tucson.

One of the most rewarding things for me in being a CCANer is being able to help other caregivers understand what tools they have available to them and how to become a better problem solver. I love when other family caregivers call me and tell me their stories. I can hear the relief in their voices when the phone call has given them the feeling that there is hope, because there are people who care.

CALIFORNIA
Nancy Miller, Ph.D., MSW
Nmiller@ucla.edu

I grew up with caregiving as a natural part of life. My frail grandmother lived with us until I was in fourth grade, my father had Parkinson's, and my mother cared for him until he needed a nursing home. We are now long-distance supporters for my mother-in-law, who has Alzheimer's.

I have been in the UCLA Department of Psychiatry for 30 years in various programs, working with and writing about families who have children with special needs and training future professionals.

I lead a monthly support group for parents of young, newly diagnosed children, and teach a four-session parenting class focusing on family adaptation, building a support system, holidays and other special occasions, and "going out in public." I lead another monthly caregiver support group through the UCLA HealthCare Plus outreach program, which is free and open to all caregivers in the community. I also have a private psychotherapy practice where I often work with people having caregiving crises. A year ago I organized a monthly caregiver support group at our church. We're interested now in contacting other denominations in the local area to encourage them to begin groups, too, then eventually having an annual meeting all together. I would love to hear if anyone else has done this!

I've been involved in NFCA since 1997, when I participated in a roundtable on caregiving and met Suzanne Mintz. When I learned what she and others were building, I was immediately hooked on their vision, their philosophy, and their grassroots activities. I was delighted to become part of it. I love that membership is free for family caregivers, that we send them all personal greeting cards twice a year, and that we are here to help connect caregivers to their community. I'm proud to represent NFCA in my small way in this huge, diverse state. Sometimes I feel like my activities are a drop in the proverbial bucket, but I know we're all part of a growing, essential network with the same mission being carried out in unique ways.

CONNECTICUT
Susan Bria
SSBria@aol.com

After my mother died in 1998 at the age of 98, I was exhausted but still consumed with the events that had shaped our lives for eight and a half years. I began writing about our experiences, the frustrations and the blessings, the practical suggestions and the insights, the philosophical issues and the spiritual lessons, the grieving and the transition. I knew our experiences were similar to what other families were going through.

In 1999, while browsing a hospice Web site, I found a link to the National Family Caregivers Association Web site. I was no longer a family caregiver, but I was still vitally interested in the concerns of caregivers. I had never joined a caregivers' support group. I didn't even know they existed. For me, moral support came in the form of inspirational reading. I sent for the newsletter Take Care! and found it informative and supportive.

I wanted to give something to others. I believed my experiences were gifts, opportunities given so I could learn from them. I wanted to share what I had learned with others. I took a course to become a volunteer advocate for elderly patients in nursing homes, but I found that was too difficult for me so soon after my mother's death. Maybe there was another way for me to give. So when I read in Take Care! that NFCA was looking for volunteer representatives, I immediately volunteered. I felt I could give by encouraging other family caregivers to be advocates for their own family members. I have been involved with NFCA for four years now, and the most rewarding part for me is speaking to caregiver support groups. I feel that by informing family caregivers about the resources available, while encouraging them to balance their lives and take care of themselves, I can help both the caregiver and, indirectly, the person for whom he/she is caring.

MA/CENTRAL NEW ENGLAND
John Paul Marosy
jpmarosy@charter.net

When my father became ill with prostate cancer in 1988, I had worked as a home health care administrator for 15 years. My caregiving experience, culminating in arranging hospice care for my dad during the last year of his life, raised my awareness of the role of family members in home care to a new level.

I became involved with NFCA in 1998 when I interviewed Suzanne Mintz for my first book, A Manager's Guide to Elder Care and Work. Suzanne's vision of a better life for family caregivers triggered my imagination. If I, a seasoned home healthcare executive, found it difficult and emotionally draining to arrange care for my father, imagine how tough it must be for someone without such experience. Trying to hold down a job while taking care of a loved one with a serious illness or disability is no easy task.

In 2000, during my tenure as a member of the NFCA board of directors, I proposed establishing the Caregiver Community Action Network (CCAN). Today, I serve as a volunteer CCAN representative for central New England.

Last fall, I worked with family caregivers and professionals in New England to organize a Town Hall Meeting in Boston. We used the event to educate business, government, and healthcare leaders about caregiver needs and concerns. The town hall meeting gave birth to a new Family Caregiving Coalition of New England that is remarkable for its lifespan diversity and ability to bring together organizations that normally wouldn't have opportunities to meet each other. The Town Hall Meeting and the coalition that is spawned are great examples of how much CCAN members can accomplish.

When not volunteering for CCAN I run my own consulting and training firm, Bringing Elder Care Home LLC. Through it I assist businesses and community organizations to deal effectively with elder care/work balance issues. I also serve as consultant/director of NFCA's Communicating Effectively with Healthcare Professionals program, which is the organization's signature educational program. Through it I see the real difference than NFCA can make and it spurs me on to do even more as a CCAN volunteer.

MISSOURI
Wilma Schmitz
wilma@agingconcerns-stl.com

I am a geriatric care manager and started my consulting company in 1997. I found NFCA while searching the web for resources for my clients. I sent NFCA a request for information and asked for a local contact person and the rest is history. I am a member of a coalition of 60 organizations in the St. Louis area that work with older adults and their families and many have become members of NFCA.

On the personal side, I am the primary caregiver for my husband who has post-polio syndrome. We have been married for 23 years and it has been hard for him to cope with his on-going progressive weakness. I am also a support caregiver for my youngest sister Karen, now 42 years old who has diabetes insipidus and is blind from a brain tumor.

NFCA has helped me personally and professionally. In the spring of 2000, the local NBC affiliate did a story on eldercare; I called the station and spoke to the reporter about additional resources for his story. He invited me to come on and talk about local resources and he was interested in NFCA. Since then I have been a bi-weekly contributor to the "Today in St. Louis" news program in St. Louis, MO. I have the opportunity to give information about caregiving to an audience of over one million households. I share information from NFCA on a regular basis. When I conduct programs in the community or to organizations, I am a banner waver for NFCA. Because I think it has so much to offer family caregivers.

I am encouraged by the inclusion of family caregivers when a team is developed for an ill person. I enjoy talking about the impact family caregivers are making in being considered part of the healthcare team and how others are learning that family caregivers are the backbone of the caregiving process.

Learn more about Wilma's professional expertise by visit the Aging Concerns website at www.agingconcerns-stl.com

NEBRASKA
Eboni Green
caregiversupport@aol.com

Over the years I heard about NFCA and understood NFCA's uniqueness as a national organization that is not disease or age specific. I became a member and, as a result, received the Take Care! newsletter and new membership packages. I later heard about the opportunity to become a CCAN representative and quickly applied to represent Nebraska. What interested me most about becoming a CCAN member was the ability to spread the word throughout the state about upcoming legislation, events, and support available to assist families who are caring for a loved one Ð no matter what the disease or disability.

The most important aspect of being a CCAN representative is the diversity of the role. As a CCAN representative, a day may involve talking personally with a caregiver about his/her struggles, working with community health professionals interested in supporting and assisting caregivers, and contacting governmental agencies or legislators on behalf of family caregivers.

There are so many exciting programs in which I am currently involved. One is the third annual caregiver retreat, which allows caregivers to take a two-day break from caregiving at the wonderful state park here in Nebraska. This year the retreat will involve caregivers across the entire state. We have invited senators and state workers to hear the trials and triumphs of caregivers. The second is the course we offer to caregivers that is a collaborative effort with the Respite Resource Center here in Nebraska. Caregivers are able to take the 76-hour nursing assistant course free of charge. They learn how to provide care and network with others who may need respite or general support.

Caregivers are part of a secret club. Being a CCAN member for NFCA gives us a voice so that perhaps, some day, the club won't be such a secret. There is never a dull day as a CCAN representative. I wouldn't have it any other way.

You can learn more about Eboni's company at: www.caregiversupportservices.org

NEW JERSEY
Lauren Agoratus
agoratus@cs.com

My daughter, Stephanie, was born in 1992 with a rare form of kidney disease. The first three years of her life we were in "survivor mode." One of the first conferences I made it to (when Stephanie was 3) was hosted by the National Organization for Rare Disorders (NORD). That's where I met Suzanne Mintz. I had a "light bulb" moment while listening to her when I suddenly realized that I was a family caregiver. I was still changing diapers on Stephanie, she was still eating baby food, not talking, etc., and I knew I'd be doing those things much longer than other parents. I also realized that while I had been gathering information on her condition, none of it was on how to help me do what I needed to do.

I thought NFCA was a great idea. I loved the newsletter and I volunteered to spread the word even in the days before CCAN. I became NFCA's unofficial New Jersey representative and publicist, helping to spread the NFCA name and message to other organizations. It was a great thrill for me when the CCAN program actually got under way. I felt as if I'd been its pioneer.

I believe it is important to be involved and help other family caregivers get the information they need. That's why I became involved with other state and national advocacy and support groups, such as Statewide Parent Advocacy Network and Family Voices, a national advocacy group for children with special health needs. I soon found myself in leadership positions in these organizations. I am very proud of the fact that the governor appointed me to the State Interagency Coordinating Council. I've since become co-chair of its Family Support Committee. In addition, I write for a variety of newsletters and magazines, and currently serve on the editorial advisory board of Exceptional Parent magazine. It's my continuing goal to work to get information out to other family caregivers. I've seen firsthand that information is empowering. There is the possibility that my daughter will continue to need care throughout her lifetime. I realize I do a lot, but I want to help other families in the same situation we are in.

To find out if there is a CCAN volunteer in your state, click here.
To become a CCAN Volunteer, call 800 896 3650