In Her Own Words

30 Years Later

BY ROSE CRUMB

PART 1

The first issue of the HOSPICE INTEREST newsletter in February 1978 featured this article: --The first meeting of the Hospice Interest group was held Tuesday, February 7, 1978 at 7:00 p.m. at the Port Angeles Senior Citizen Center. Those present were: Nan McGoff, Claudia Fox, Jean Hordyk, Rose Crumb, Marge Koch, Laurel Oppelt and Frank Feeley, Jr.

So it began--this wonderful organization that did not have a name or money....just 7 enthusiastic volunteers and a vision of care for the terminally ill and their loved ones. This concept of care was new in the entire country and especially on the West Coast. The first hospice started in New Haven, Connecticut in 1974 and from there spread in all directions, reaching Washington 3 years later.

Now, back to the first newsletter: --Several topics were discussed. What kind of Hospice program do we want to start in this area? How do we make the community aware of the Hospice concept? How do we get better newspaper and radio coverage? What will we call it? It was suggested we learn of other Hospice organizations in order to help our own. Marge will check into Seattle and Everett groups while Rose will contact Spokane and Victoria. Frank volunteered to look into funding possibilities and Rose will look into legalization procedures for making our organization a --nonprofit‖ one. We were to bring all ideas and information to the next meeting on Feb 21st. There were 19 people on that first mailing list.

From that time on it was a whirlwind of activities: Speaking to church and civic groups and anyone else who would listen, soliciting and training volunteers, educating ourselves and the community, establishing committees, agreeing on a name for the organization, creating a brochure, mailing a monthly newsletter which was more like minutes of our meetings, creating a Mission Statement, writing by-laws, applying for nonprofit status, Articles of Incorporation, selecting a Board of Directors, electing officers, etc. Our first official meeting with officers and a board in place was in May and our newsletter mailing list had tripled in numbers. John Rutz, attorney, offered his services for by-laws and Articles of Incorporation and he continues to be our legal guardian angel. Thank you, John. Mary Ann Frazer created the logo, HOCC, which has survived these 30 years with an additional --V (Volunteer) added two years ago to satisfy for profit hospice organizations.

In July of that first year we assisted one patient in Port Angeles and one patient in Sequim while we were waiting for all the legalities to be finalized. It was a testing ground and the two patients had agreed to be our so-called hospice guinea pigs. Both lived alone and had no caregiver. That experience taught us that there had to be a caregiver in the home because it was impossible to provide 24-hr. care with our volunteers. By November, we were ready to be an official non-profit organization and admitted our first family. Their local physician refused to have anything to do with hospice so their oncologist in Seattle gave the orders and was very cooperative and helpful. This attitude of the local physician was very typical of other doctors at that time--some even called us --The Death Squad.

Hospice Interest Newsletter--Spring 1979--a quote --We are an incorporated, non-profit organization and rely solely on the support and assistance of volunteers in every capacity--from physician to part-time typist--to make this concept a reality. Volunteer help is always encouraged and needed, as without it, we would be just another good idea. As The Hospice Volunteer Handbook from the Elizabeth Kubler-Ross Hospice in Clearwater, Florida states: --The volunteer is the most important person in the hospice organization. The Board of Directors, nurses and staff may be its arms, eyes and ears--the volunteer, however, is the heart and soul. Without the services of the volunteers, the Hospice has no reason for existence.

Education and organization were the main objectives that first year but, as we moved forward, MONEY became the hot issue and we had very little. Our total expenses had been $328. OFFICE SPACE –the lack of it--was another major concern. We finally located in one room in our rental house next door and then worked a deal with the American Cancer Society to move their telephone from the Senior Center to our office and we would provide information and services to their clients. I had an extension line installed in my home so I could provide 24-hour answering service. It was not ideal but it was cheap. More on our growth and survival skills in the next issue.

PART 2

Our last newsletter covered the birth of this fledgling organization in the 70s and now we move on with its survival and growth in the 80s. During those first few years, it was a matter of educating and proving ourselves because this --hospice concept was entirely new to everyone--including us. We all learned as we went along and --word of mouth, from satisfied families, was our only way of advertising. Soon, the word on the street was, --this new hospice is wonderful. Staying afloat financially was on our priority list and rummage--tons of rummage--saved us. All of us were involved with that activity and I claimed the title of --Second Hand Rose with pride. It almost seemed that we were more famous for our rummage sales than we were for providing hospice services so it proved to be a good combo. United Way accepted our agency in 1981 allocating $2,000 and there was rejoicing over our wealthy status. Another blessing came to us by the name of The Mary-Dolciani Halloran Foundation, which funded a respite service and medication/supplies. Denise Halloran and her father Jim became special friends of our hospice for many years and we will always be grateful for their support. They hold a very important spot in our history and they are remembered with much appreciation and affection.

ORGANIZATIONS: In the beginning years--the 1970s-- there were very few hospice organizations in Washington and even fewer in some of the other western states so we joined together under the umbrella of the North Pacific Hospice Coalition which included Oregon, Idaho, Montana, British Columbia, Alaska & Washington. We met once a year to share our stories. Our hospice was the only rural one---the others were from larger cities in their respective states. Some were affiliated with home health agencies. All were pioneers and we were eager to learn from one another. It was an exciting time. Nationwide, there was pressure on Congress to provide Medicare coverage for hospice and this came to pass in 1983. At the same time, the individual states formed state hospice organizations. I served on the nominating committee the first two years. Their goal was to become politically active and pursue legislation for Medicaid and private insurance coverage. The first licensure law was passed in 1988 and our lawmakers had the foresight to exempt volunteer hospices that did not bill for services from all licensure requirements. This --exemption did not please the membership of the Washington State Hospice Organization but it made all of the volunteer hospice people very happy. Our goal was to mold our individual programs to meet the needs of our individual communities and to work hand in hand with the local Home Health, hospitals, nursing homes, assisted living and adult family homes. It was our experience that we could operate on a much smaller budget and we could be more flexible in providing services. Our philosophy has not changed.

GROWTH: The 80s were a busy time. We had units in Port Angeles, Sequim and Forks. After a year and a half, Forks became independent and separated itself from Hospice of Clallam County. They named their new hospice West End Hospice and provided services to that area for several years. The bond between us remained strong and we were available for workshops, equipment needs etc. The Forks people will always have a special place in our memories and our hearts.

Sequim has always been the center of growth and enthusiasm. Claudia Fox and Peg Redding were the key nurses during this period. Both were volunteers. Claudia was a Board Member and one of the original founders of our hospice. She continues to be a Home Health nurse in the Sequim area.

Port Angeles served as the --hub of activities because that was where the office was located at 5th and Peabody. Our new Grief Recovery program started with Vince Murray as the facilitator. We started a loan closet of durable medical equipment that had been donated. During this time, we moved from the small house next door back to the --Big House---where it all started back in the 70s.

In the next issue of Hospice Interest, we will reflect back on the 90s.

PART 3

In the last two newsletters, you read about the beginning and development of this new concept of care for those individuals and their families who were dealing with a life threatening illness. We are now into the 90s where there were many changes and much growth.

Location: In 1992 we purchased our first building thanks to the foresight of Rosemary Cockrill who, with her husband, started a building fund which kept growing and growing until we were able to move out of my old house at 5th & Peabody and to the present location on 8th Street. Leonard Beil and his Rotary Club painted all the rooms and Ruth Wight became interior decorator. We soon out grew all of the new space and we made additions twice to accommodate the many pieces of donated equipment. Providing medical equipment to those non-hospice people became another one of our services and it requires many volunteer hours to clean, disinfect and repair the various items. It also has saved those in need many thousands of dollars.

Legislation: 1992 was also the year that the Hospice Licensure Law came up for renewal and the Washington State Hospice Organization put forth every effort to eliminate the exemption clause for Volunteer Hospices. Once again, the Legislature chose to retain the exemption and we chose to withdraw our membership from WSHO. It was a bittersweet ending to a relationship.

Funding: The sky opened and angels came forth bearing many gifts: The Albert Haller Foundation, The Olympic Lion's Foundation, The Clallam County Physicians Community Benefit Fund, Soroptimist International Of Port Angeles, The Ladies of the Elks in Sequim, The Swain's Family Foundation, The Eagles Club with Gail and Denny Secord, Esprit, Sunbonnet Sue Quilt Club--the list goes on. Dr. Crim organized the first Sequim Bay Yacht Club Race, Al Langley, the Agnew Bingo Barker, donated his earnings, Marcia Wesesky did a one woman Bike-a-Thon in memory of her mother, David Gebhardt does a golf tournament in memory of his mother, Shirley Weatherbee and Angie Waller were key players for The Wine & Cheese Tasting, a social event of the year.... and we quit selling rummage.

Honors: Notoriety followed the Angels. Some of our volunteers were becoming famous. Mary Hicks, Grief Facilitator won --Making A Difference For Women from Soroptimist International of Port Angeles. Art Judd won a Community Service Award sponsored by Peninsula Daily News. Nancy Coyle was chosen by Soroptimist Jet Set for --Making a Difference For Women and Yours Truly even got in on the act. First, the American Cancer Society honored me and 18 others at their annual meeting in Atlanta, Georgia with the Lane Adams Award. .....Awesome. Then the Seattle PI honored five of us in the state with The Jefferson Award....Unreal. On to Washington, D.C. where five of us in the nation received The Jacqueline Kennedy Onassis Award ...Overwhelming. My personal opinion is that all of our volunteers and contributors are Award Winners.

Grief Recovery: This program was started in the 80s for the benefit of our hospice families but we soon realized that there were many grieving people in the community who were in need of this program so the only solution was to invite them in. Now, there are 5-week sessions in Sequim and Port Angeles with monthly follow-up meetings. A phone call to register is all that is required.

Technology: We finally entered the space age with a computer, a fax machine, an answering service and a cell phone--quite a change from the 4x8 card file that I started out with in 1978. There are days when I long for that simplistic way of doing things.

Yes, many things have changed in 30 years but the dedication, hard work, compassion and loving care of our volunteers remains the same and that is what is the most important. Each and everyone--too many to mention-- has played an important role in the growth and reputation of our Hospice organization. In the next issue, we will reflect on 2000-2008.

PART 4: 2000-2008

The new century came bringing new experiences, new surprises, new challenges and much joy. A student in social work at the University of Washington who was working on her master's degree did an internship under the supervision of Beth Garifalos, MSW (volunteer and board member.) This was the first social work internee to join us; however we did have nurse students working on Bachelor of Science degrees from the University of Washington and Gonzaga University. Peninsula College nursing program also honored us with students who were interested in hospice work. We love to share information and expertise with those who are eager to learn end of life issues.

A highlight of the New Year was the return of Kelly Steward who had been away for three years. All of those involved with our hospice knows the vital role that Kelly plays. I refer to her as my Administrative Assistant but she is much more than that and I can't imagine this organization running without her hand on the computer. Another important happening was the PBS Special, On Our Terms: Moyers on Dying. The 4-part series revealed the stories of the dying, their families, and their caregivers and illustrated the growing struggle to balance medical intervention with comfort and humanity.

A new program called Hospice Hands was started under the supervision of Mary Vie. The purpose was to provide support to caregivers that were caring for a loved one suffering from a long term chronic illness. Similar programs have been started by other agencies.

On the national scene, we continue our membership in the Volunteer Hospice Network under the auspices of the Hospice Association of America and its parent organization, The National Association for Home Care. This is the only national level forum devoted exclusively to volunteer hospices and their special needs. The meetings are once a year and it gives us a chance to learn the latest developments from experts practicing in the field. It is also a time to celebrate and acknowledge the wonderful work done by volunteer hospice programs. The meeting this year was held in Florida--too far away for us to attend. The September 11th terrorist attack on our country showed us how vulnerable we are and how a nation grieves the deaths of thousands of our fellow citizens. The POLST form was introduced in Washington to state a person's wishes regarding end of life care. The Washington State Medical Association promoted this. It is physician driven and patient focused.

Pam Gates organized the 25th Birthday Celebration at the Sunland Golf Club in Sequim. It was a fun event featuring friends, dignitaries, volunteers and supporters. Some of the original founders were also present--Marge Koch, Jean Hordyk and Claudia Fox.

The GUEST HOUSE captured our fantasy when Ruth McCord donated an acre of land in Sequim to build a facility where we could care for the patient who had no caregiver. This idea did not sit well with the Washington State Hospice Organization so the project was abandoned. It was a wise decision. Our time is too precious to waste it defending ourselves and that was becoming an ongoing process. We returned the property to Mrs. McCord and refocused on caring for our families in their homes---home being wherever the patient lived.

Now the 30th year is coming to an end and we are looking forward to many more years of service and birthday celebrations. The buildings are freshly painted, several new volunteers have completed orientation, Sequim has a beautiful new storage unit for equipment and supplies, Sequim Bay Yacht Club completed another very successful --Reach for Hospice Race‖ to provide respite care in 2009, another nurse has joined our staff.

God continues to bless us. We could not ask for more.