Retired fire chief advocates for Alzheimer’s preparedness
January 2021: We’re sad to report that Bob died from Alzheimer’s on January 16, 2021. We are so thankful for the courage that Bob showed in sharing his experiences and speaking with legislators about the need to fund Alzheimer’s research and support for those living with the disease. Our hearts go out to Ellen and all who knew Bob.
With almost 50 years of fire service experience, Bob Durfee understands the importance of planning and preparedness. After retiring as Chief of the Samoa Peninsula Fire District, west of Eureka, Bob was diagnosed with Alzheimer’s.
In his new role as a volunteer advocate, Bob continues his commitment to planning and preparedness. On February 5, Bob and Ellen, his wife of 54 years, will meet with legislators in Sacramento at the Alzheimer’s Association Advocacy Day.
Getting connected with the Alzheimer’s Association
When he first found out he had Alzheimer’s, Bob was frightened and worried about being a burden to his family. Soon after being diagnosed, he attended the Humboldt County Walk to End Alzheimer’s.
At the Walk, Bob met Ruth Gay, Chief Public Policy Officer of the Alzheimer’s Association, Northern California and Northern Nevada Chapter. Ruth connected Bob and Ellen with Alzheimer’s Association early stage programs and support services.
Bob participates in the Alzheimer’s Association peer-to-peer support program. On a monthly basis, he receives a call from Chris, a volunteer who is also living with Alzheimer’s. They can talk with each other about things that they might not feel comfortable sharing with others.
Coping with Alzheimer’s through family support
Bob faces some challenges as he lives with Alzheimer’s. He can no longer drive, which is difficult in a rural community lacking public transportation. He gets frustrated when he can’t remember where items belong in the kitchen that he built.
Their family has rallied around Bob and Ellen. They have adult grandchildren who are now living with them and helping out, along with other family members who provide support.
“One of the great things is seeing how our grandkids have stepped up to the plate,” Ellen said. We’ve always been very close to our grandchildren. They have come up to help with things that Bob used to do. They also came up to help me. We’re very proud of how our children and grandchildren have turned out.”
Continuing to help others through advocacy
Ellen and Bob appreciated the support that Ruth provided. “Ruth made us want to help others and be their advocate,” shared Ellen, “the way she was to Bob.”
Ellen and Bob signed up to volunteer as public policy advocates. In June, Bob and Ellen had their first chance to advocate. They presented to Congressman Jared Huffman, at an Alzheimer’s Association event in Eureka.
The event was covered by the local media. The next day, their paper delivery person commented that Bob and Ellen were on the front page.
“Advocacy has been of interest to me,” shared Bob. “After helping people in the emergency services field, I want to continue to help others.”
Bob and Ellen appreciate how supportive Congressman Huffman has been of those in their community who are affected by Alzheimer’s disease. He voted for increases in federal Alzheimer’s research funding and for the BOLD Infrastructure for Alzheimer’s Act.
Traveling to Sacramento to make a difference
Next month, Bob and Ellen will be making the long trip to Sacramento to attend the California Advocacy Day. They are excited to have the chance to be at the Capitol with over 250 other advocates.
Ellen and Bob like to help people understand how they can make a difference by contacting their legislators. “You can still be a member of the community who can accomplish things,” said Ellen. “That’s a big deal.”
Sharing his story
Bob speaks about Alzheimer’s disease to community groups. He also shared his story at the 2018 Humboldt County Walk to End Alzheimer’s.
When he finished speaking at the Walk, Bob received a standing ovation and sustained applause. Friends and family in attendance reached out to Ellen and Bob to share how they were impacted by his speech.
Ellen has seen the benefits that Bob gets from telling his story. “Speaking in front of his peers and encouraging them to participate has been really wonderful for him,” she shared.
Bob and Ellen are members of the Walk to End Alzheimer’s planning committee. Being part of a small community, they already knew several of the other committee members.
“It’s a group that I feel very welcome and respected in,” Bob said. “They make you feel like family.”
Tips for potential advocates
Bob has found his advocacy efforts to be rewarding. He hopes that others who are living with Alzheimer’s disease will share their diagnosis publicly. “This could happen to anybody,” notes Bob, “so everyone needs to help to find a cure.”
It is important for legislators and their staff to meet more people who are living with Alzheimer’s disease and their care partners. It helps them understand the disease and see the need to work on Alzheimer’s policy.
Sometimes people are afraid that they may lose their place or forget what they were saying. When that happens to Bob, he just says “Hang on a minute, Alzheimer’s strikes again.” It helps others understand and helps Bob get back on track.
Bob encourages others who are living with Alzheimer’s or another cognitive impairment to “do what you can while you can. I won’t say that I’m happy to have Alzheimer’s, but I want to use the time I have left to help find a cure so others do not have their life plans disrupted.”
Volunteer opportunities with the Alzheimer’s Association
Advocacy Forum in Washington, D.C.
Article about Eureka meeting with Congressman Huffman
Bob, speaking at Humboldt County Walk to End Alzheimer’s