When it comes to family members who choose to provide care for loved ones afflicted with challenging conditions such as Alzheimer’s, other dementias, nerve disorders, brain failure, and the like, one of the big questions that arises is: Who will care for the caregivers? It’s a question that AgeWise Colorado (AWC) itself has been created to help provide an answer for by offering relevant guidance and steering caregivers to pertinent resources.
AWC is not alone in this mission. Others have risen to the task as well. One of those others is the Caregiver Support Foundation (CSF), which offers caregivers help in finding support groups and giving advice in securing in-home assistance such as housekeepers and other aides. CSF also works closely with medical professionals to improve awareness of family caregiver needs.
Before outlining CSF’s services, its origin story is worth knowing. Because CSF was born of personal experience with caregiving.
The personal journeys of Laird Landon and Glen Hinshaw
Laird Landon and Glen Hinshaw of Montrose, Colorado founded the nonprofit CSF following their experience of being long-term caregivers to wives who were both victims of brain failure. As they tell it, their experiences left them inspired to make sure that other caregivers had the support and knowledge that would allow them to survive “the loneliest, hardest job in the world,” that of family caregiver.
According to their biographies, Hinshaw and Landon came from wholly different backgrounds. Hinshaw’s career was spent largely as a wildlife officer in the most rural parts of southwest Colorado. Landon came from the academic world and big business, after growing up in La Jolla, California. They both eventually ended up in Montrose, Colorado, “bearing the same burden” of caring for wives who were terminally ill. Their tenure as caregivers, they say, “was measured, not in weeks or months, but in years.”
Two years researching the caregiving world
Both men say they initially felt lost on their exhausting caregiver journey. They began talking and sharing experiences. Long coffee shop conversations, emails, and telephone calls led them to realize that they were “but two members of a much larger band of brothers and sisters—tens of thousands of caregivers to spouses, family members, and friends who cared for people suffering with dementia, Parkinson’s, or other terminal brain diseases.”
“I had written a couple of books and had the idea to write another one with my friend Laird,” Hinshaw recalled. (Read more about the resulting book below.) He said he and Laird, an author, retired professor, consultant, and public speaker, “hatched a plan to offer help to the lost souls in the caregiver army. We thought it would be valuable if caregivers could share their experiences with others. Caregiving is isolating, and most friends don’t understand how to help.”
The pair equipped themselves with notepads and tape recorders and began to collect the stories of caregivers with whom they had come in contact during their caregiver support group meetings. They spent two years “researching the caregiving world and talking to real caregivers.”
Why support groups are key to family caregivers in Colorado
Connecting caregivers to support groups is now one of the key functions of the Caregiver Support Foundation. One thing Hinshaw and Laird strive to do is help caregivers understand that it is normal to feel overwhelmed and that they are not alone.
As the CSF website explains, support groups allow non-judgmental sharing of challenges and storytelling. Research shows that “participation in support groups increases feelings of well-being among caregivers, increases the social supports available and used by caregivers, and improves the relationship between caregiver and care receiver.” Groups also reduce the isolation by being with other caregivers who “get it.”
Groups provide insight into the length of the journey and tips on how to cope. They help caregivers
understand why they are challenged and what lies ahead. This helps caregivers respond to new situations with wisdom others have shared. Groups help caregivers find the resilience necessary to endure. They help reduce the chance of burnout.
CSF says joining a group may be the most important outreach that many caregivers rely on. With in-person groups, members can communicate more fully. Bonding can lead to friendships that can be called on outside the group. On-line groups have the benefit of allowing caregivers to be at hand when loved ones need help. They minimize travel time and accommodate caregivers who have physical limitations. In small communities there may not be an in-person support group available, and an on-line alternative can fill that gap.
Accessing family caregiver support in Colorado
While the Caregiver Support Foundation, along with others, directly conducts in-person groups in selected areas, the Area Agency on Aging (AAA) in other areas may have a list of available groups to connect with. CSF says if there is no group near you, they may be able to start an on-line group for you if you have two or more other caregivers who want to attend.
A listing of support groups can be found on the CSF website at www.family-caregiver.org. Colorado AAAs can be found on this AgeWise website under the Provider Directory tab, submenu item Aging Advocacy & Resources (https://agewisecolorado.org/community-resources/).
CSF now calls itself a “go-to nonprofit haven for family caregivers [who] help loved ones with terminal diseases of the central nervous system including dementia of all kinds, Parkinson’s, and brain cancer.” CSF provides caregiver support in the form of information and emotional reassurance through writing, support groups, videos, and speaking. “We help caregivers persevere and find courage to endure,” CSF says.
Caregiving, Journey to a New Horizon – About the book
As Hinshaw and Landon began their collaborative work, it became obvious to them that there was plenty of material for a book. After nearly two years of collecting, condensing, writing, and editing, the book became a reality in 2020, titled Caregiving, Journey to a New Horizon. One noted professional in the family support field said of the book: “Here is a great resource with real stories and relevant help that is very encouraging.” A caregiver reviewed it by saying: “This book is a treasure to have when you feel up against the wall with all those difficult decisions.”
As the book began to circulate, Landon and Hinshaw said they began to help individual caregivers who were facing frustrations and burnout from tasks that drained more and more of their energy, time, and money. The duo’s work caught the eye of the Region 10 AAA in southwest Colorado. The agency helped bring them their first support group and awarded them a grant to add more videos to their YouTube channel: “Real Care for Caregivers.”
“I am, of course, excited that we came together to create something new — something to help caregivers,” Landon said. “We are so fulfilled and rewarded that we have been able to help others.”
Hinshaw’s dementia was an added incentive to Family Caregiving Support in Colorado
In what might be seen as an almost poignant irony—but which Landon said served as a catalyst for their efforts—Hinshaw himself along the way was diagnosed with dementia, limiting his capacity for assisting CSF. With Landon being in his 70s, the desire to ensure their work could continue into the future led them to form the actual Foundation and have it be guided by a board of directors and advisors from many disciplines. Despite his limitations, Hinshaw became a founding member of the board of directors. Appropriately, other board members include long-time caregivers who, like founders Hinshaw and Landon, have firsthand experience with the challenges caregivers face.
“Caring for someone with dementia is a roller coaster journey with no instructions on how to hang on or get off,” one board member observed. “I was fortunate on my journey to find the people in the support group I meet with now, during a time when I needed them the most. Without them I would have probably continued to attempt to provide the care my wife needed, while at the same time grinding myself down physically, emotionally, and mentally. I want to continue providing what assistance I can as long as I can.”
The Foundation now will focus on teaching others how to organize support groups. The book Caregiving, A Journey to a New Horizon and the growing number of caregiver videos on the YouTube channel will continue to be resources for caregivers. The CaregiverSupportFoundation.org website is reportedly under construction (not to be confused with The Caregiver Foundation, a similar entity located elsewhere). Currently CSF can be reached at www.Family-Caregiver.org. CSF is expected to continue operating out of Montrose. CSF videos are available online by searching for “Real Care for Caregivers” in the YouTube search window.
Help at no cost from Colorado’s Caregiver Support Foundation
There is no charge for CSF’s help. Presently, the Foundation is operated wholly by volunteers. Donations are welcome to help in covering expenses such as transportation costs, video production expenses, Internet and phone, and others. CSF has Internal Revenue Service status as a 501(c)3 nonprofit organization, meaning donations are tax-deductible. As of this writing, the book Caregiving, A Journey to a New Horizon is also available at no cost. Check the CSF website for how to order it.