Caregivers often celebrate and remember the spirit and life of their spouses, parents and siblings through walk-a-thons and marathons that raise money for causes such as cancer and Alzheimer's.
One caregiver, Teri Swezey of North Carolina, decided to honor her mom with her own walk across America. Her 3,039-mile journey, to her parents' adopted hometown of Cambria, Calif., is seeking to raise money for programs for senior adults and caregivers.
She sold her house to finance the 12-state journey, which she began in April 2012. Swezey's non-profit organization, SOAR (Seniors Obtaining Assistance and Resources) is accepting donations online at walkusa4soar.org to raise money for the walk and relief services for caregivers, prescription co-pay assistance and meal assistance for low-income seniors. AARP North Carolina is one of the walk's sponsors.
She walks 15 to 20 miles a day, and people who see stories about her walk or updates on Twitter or Facebook often walk to greet her or pull over their cars to chat with her about their experiences with aging and as caregivers. When she's not on the road, Swezey is doing media interviews, visiting senior centers, nursing homes and assisted living facilities, and talking to local officials about their efforts to help seniors, especially those who live alone.
Swezey, 57, a public health researcher, expected to reach the Pacific Ocean in October 2012. She spoke with AgingCare.com about her journey.
AgingCare.com: What was your caregiving experience like?
Swezey: My mom was with me for about three years or so before she passed away. She had mixed dementia (when Alzheimer's disease and vascular dementia both occur). She moved all the way from California out to North Carolina to live with me. That was a huge change for both of us. It was a journey that I feel like we made together. It was very, very, very challenging for both of us.
AgingCare.com: What was the biggest challenge?
Swezey: As the dementia progressed, her assessment of risk was a big challenge. She was a phenomenal athlete (a photo of Swezey's mom in a swan dive is on her website). She was 86 when she moved to North Carolina. She packed by herself. As the dementia progressed, she was having these mini strokes and that affected her sense of balance on her right side in particular. Osteoarthritis had eaten away at the cartilage on her left hip. It was painful for her to stand on her left hip. She was very physically capable of standing and walking, and yet she was a tremendous risk for falling. She did fall a lot. I could be standing next to her, and she would fall. She didn't understand because dementia affects people's perceptions, their judgment, and in this case, her risk. She didn't have the capability to remain upright. For me as a caregiver, I was constantly worrying about her falling, with very good reason.
AgingCare.com: What resources helped you as a caregiver?
Swezey: I went to a dementia caregivers support group at a local seniors center once a month. That was an important thing, to share my experience with somebody else and to see that you're not alone in these experiences.
AgingCare.com: What's one thing you learned from others in that group?
Swezey: In dealing with somebody who has advancing dementia, in the moment when they're having a meltdown, they're not dealing with rationale thought. In the moment, they're dealing with their feelings. You need to recognize that. Don't use your words. Trying to rationalize, ‘now mom, you shouldn't not do that because blah blah blah,' is going to make her madder. Understand that whoever you're caring for is having an extremely difficult emotional moment, and they're very in that moment. You need to be there with them and not rationale it out.
Agingcare.com: What are you hearing from caregivers as you walk across America?
Swezey: It is very magical because those are the connections that matter the most to me. This walk is about caregivers and their loved ones. The sense I get from caregivers is that it is a selfless act of service and of love, and yet it is also extraordinarily stressful. People who took care of somebody who passed on have said they would do it again. Those still caring for somebody say they would make the same decision.