From Colorado to South Dakota: a super Alzheimer’s volunteer
Benjamin Franklin once astutely observed: “If you want something done, ask a busy person.” As people in the dementia community from Colorado to South Dakota have learned, that person is Wendy Abbott.
Abbott is passionate about Alzheimer’s disease. She needed to do a quick study on the subject after her mother began showing symptoms of dementia a dozen or so years ago. The Fort Collins resident immersed herself in the Alzheimer’s Association’s catalog of educational classes. She joined support groups. She researched. And she commuted monthly to the Rapid City area of South Dakota to help care for her mom and support her dad.
“Dad provided all of the care for mom,” said Abbott. “I could not find resources where my parents lived. There was no support group early on. No nearby Alzheimer’s Association office.”
So, she began bringing her dad back to Northern Colorado to take classes, such as ‘Effective Communication Strategies’ to help him better understand the progression of the disease and the impact it was having on his wife. She also learned a few things about her own life.
“That was the first ‘ah ha’ moment for me,” said Abbott. Given the load of responsibilities that many caregivers have for their own home and family, she realized that she “was concerned about my own future and my daughters. Nobody was giving dad any tools (to cope with the changes created by the disease progression). We tried to hire in-home respite care, but the people were untrained.” So she was helping to fill that gap herself, which demanded significant time and resources.
See a need, fill a need
Finding skilled medical care in rural areas is an ongoing challenge, but that pales compared to the difficulties posed by Alzheimer’s disease. For Abbott’s parents, there were few resources available in the western part of South Dakota to help families coping with dementia.
Several years ago, Abbott decided to take matters into her own hands. She took family medical leave from her marketing job at Colorado State University so she could return to her native South Dakota to help her dad care for her mom, whose dementia was progressing.
Caring for her parents wasn’t Abbott’s only mission. With knowledge gained from taking classes through the Alzheimer’s Association in Northern Colorado, she took it on herself to help recreate those resources in South Dakota.
Building a South Dakota resource
“When we were still building our volunteer base, Wendy was fantastic in stepping up to the plate to help us gain some traction in the Rapid City area,” said Leslie Morrow, executive director of the South Dakota chapter of the Alzheimer’s Association. “Besides her great work as a community educator, Wendy has also spearheaded a dementia coalition on the western side of South Dakota. She has brought together like-minded individuals who are tackling issues like access to care, caregiver support and overall awareness about dementia.”
That group, the Western South Dakota Dementia Coalition, remains Abbott’s personal project. She coordinates meetings and works on targeted initiatives, such as establishing the state’s first memory café. Her current focus is expanding support groups.
The Sandwich Generation
Abbott’s volunteer efforts are not limited to South Dakota. In fact, she has capitalized on another ‘ah ha’ moment to create a specific type of support group in Colorado that has drawn national interest.
While participating in a support group, Abbott recalls thinking: “I’m still trying to raise teenage daughters. These are issues nobody’s talking about,” she said. Among all of the participating family caregivers, she was the only one with children, which creates a very different series of challenges.
After seeking out and receiving training to run her own support group, in the summer of 2019 she created a ‘Sandwich Generation’ support group for people facing similar challenges of caring for an elder while raising younger family members.
Given the busy lives of the dozen or so individuals who attend every month, Abbott realized that the sandwich generation group would require extra flexibility.
“It was always a hybrid group (combining Zoom calls and in-person participation),” she said. “Our members could be going to soccer games or other events. I had one person call in from the parking lot of their daughter’s roller derby meet.”
Abbott’s sandwich generation group has found a niche, drawing attendees from across Colorado as well as Kansas, North Carolina and Connecticut.
“(Sandwich generation caregiving) is messy and there’s a lot to it,” she said. “We sometimes call ourselves ‘sloppy joes.’ One participant is caring for both a spouse with dementia and mother with Alzheimer’s on top of everything else in their life.”
Caregivers’ guilt
One of those “messy” aspects of sandwich generation caregiving is guilt, which can contribute to caregiver burnout.
“(Caregivers) feel like they’re not there for the people in their immediate household,” Abbott said. “There’s a lot more guilt about not being able to spend more time with your kids.”
The situation gets even more complicated when you add a parent with dementia to the household.
“Then there’s a whole new can of worms,” she said. “When you put a spouse and kids and a parent with dementia under the same roof, it can be overwhelming.”
A new line of work
Abbott’s immersion in Alzheimer’s education and identifying resources in her native South Dakota has, not surprisingly, led her to a new career. Not only is she pursuing a graduate program in gerontology, she recently assisted with a National Institute on Aging-funded study on healthy aging. Last spring she accepted a part-time position as a Compassionate Care Training Specialist for the Centennial Area Health Education Center (AHEC), which serves a 12-county area in Northern Colorado, and has a focus on rural health care and community education, which fits with Abbott’s personal priority.
“We provide training on compassionate care to healthcare students before their jobs begin,” she said. “The curriculum focuses on building empathy, understanding of dementia and tools to successfully interact with people with dementia. We also want to ensure that primary care and other healthcare professionals have information to recommend programs, like those offered by the Alzheimer’s Association. That will be very helpful to families. A (dementia) diagnosis doesn’t have to be devastating.”
Time to volunteer
Abbott is quick to note that her new AHEC position is part-time, “so I’m still able to focus on volunteering.”
Since her mother passed away last year, Abbott still makes monthly visits to South Dakota to check in on her father and collaborate with him on a vacation rental business they run together. And, ever the engaged volunteer, she makes time to help train healthcare workers and families in the challenges posed by dementia.
“I’m passionate about helping people coping with Alzheimer’s who live in rural areas,” she said.
Beyond her work in South Dakota and leading her support group, Abbott continues to be an Alzheimer’s Association community educator in Northern Colorado, and she is a member of the Larimer County Walk to End Alzheimer’s planning committee.
"When Wendy's family started the dementia journey, her desire for education about dementia led her to also want to help others who are on this path as well,” said Angel Hoffman, Alzheimer’s Association director of Community Engagement for North and West Colorado. “Her passion and compassion as a support group facilitator, community educator and Walk to End Alzheimer's committee member have positively impacted so many people in our community. She is truly amazing!”
Live well with dementia
Now that Abbott has made the professional transition to training future medical professionals in understanding dementia and how to better respond to their patients living with the disease, she has several thoughts to share with the families facing this diagnosis:
- Find others who ‘get it’ – whether it is a support group or a single individual, find others in a similar situation to reduce your feelings of isolation. They will provide support and you’ll learn from one another. We are not alone in this journey. Don’t forget to care for the caregiver.
- Build your knowledge – learn what you can expect from the disease, effective coping strategies and what is within your control to possibly slow progression, manage symptoms, and how to continue to thrive as a caregiver.
- Focus on the positive – fixating only on the losses and decline is not helpful. Identify the strengths we all have – both us as caregivers as well as the person with dementia – and maximize those. Find enjoyment in the day-to-day and even the new dynamic of the relationship we have with our loved ones. Laugh together. We didn’t choose this path, but there is still a lot of beauty to be found along the way.
Alzheimer's Association
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.