2 in 5 Coloradans 60 and older provide day-to-day support to a loved one. They spend an average of 9-12 hours per week in duties ranging from transportation and meals to personal hygiene or help getting from one place to another within the home. An official term gets thrown around: ADL’s (activities of daily living). The 2018 Community Assessment Survey for Older Adults (CASOA) sums it up: 25% receive assistance from someone, 44% provide it.
In the afternoons I see my nonagenarian neighbor’s family coming and going from her house, delivering packages, each staying a few minutes. I hear them call out, “Love you, mom!” “Love you, grandma!” as they get into their cars. Her children are in their 70’s. One son lived with her until he passed away in December. A neighbor took over shoveling her snow. She’s now supported by a loving patchwork of family and volunteers, added to what she can do on her own.
Caregivers report a sense of contribution and personal worth in playing this role. I can relate: in hours spent with my Aunt Jeanette, who moved to Colorado in her 80’s, we became close. I learned family history; I witnessed resilience and absorbed important lessons about facing life as it comes. Jeanette’s caregiving circle extended beyond me and my family, yet there were weeks and months when we were all overwhelmed. A quarter of caregivers in Colorado report feeling strained by the duties, whether physically, emotionally, or financially. The 2018 CASOA reports delves into how older adults in 16 regions across Colorado are faring. And when it comes to supporting caregivers, there is more that communities can do.
I recently spoke with Alejandra Lerma, Case Manager for Latino Senior Community and Refugees at the Area Agency on Aging. Lerma works with 20 seniors at a time, visiting them in their homes and connecting them with services to help them stay there. It’s a challenging process, especially when it comes to matching legal permanent residents with services.
Of the seniors Lerma currently works with, 18 live with a spouse or adult child. An 85-year-old gentleman’s health has declined dramatically, and he doesn’t qualify for public benefits. His 72-year-old wife takes very good care of him, around the clock, but at the expense of tending to her own health needs. Lerma is as worried for her and she is for him.
In an era when extended families are separated by distance, and neighbors can be kept apart by distrust or prejudice or ambivalence, what might have been a wide caregiving circle is often whittled down to one or two overwhelmed individuals. And sometimes it’s the intimate or technical nature of a task that causes stress. The caregiver undertakes duties that in any other setting would come with training, special equipment, or another set of hands.
Lawmakers Look to Support the Nearly Half of Older Coloradans who are Caregivers
Lawmakers at the state and national level are considering ways to support caregivers. They’re looking at a wide range of issues including job protection, training, supportive, and respite services. According to the Alzheimer’s Association, half of older caregivers in the U.S. are providing support to someone living with Alzheimer’s or dementia. Duties in these cases can be extraordinarily complex.
On the federal level, Coral Cosway, Senior Director of Public Policy & Advocacy for the Alzheimer’s Association, Colorado Chapter, reports that they support The Alzheimer’s Caregiver Support Act (S. 56 / H.R. 1474). “This bill would provide grants to state and local entities to support family caregivers. The authorizing legislation is moving through Congress this year, but if it passes, it will also need dollars appropriated (i.e. allocated) to it before grants can become available.”
At the state capitol, Cosway continues, “There are no dementia-specific caregiver bills pending right now, but there are bills that would impact unpaid, family caregivers more generally. For example:
· SB21-118 would allow county Adult Protective Services staff to respond to low-risk cases of mistreatment of an at-risk adult by focusing more on the supportive services and education needed by the family than a “finding of fault” in the situation.
· HB21-1172 would specify that patients/residents of hospitals, assisted living residences and nursing homes may have at least one visitor during their stay/residency. The bill prevents these facilities/residences from adopting policies or procedures that stops visitation entirely, even during a pandemic. The bill allows them to limit visitation, just not stop it entirely.
· SB21-075 would create a “supportive decision-making agreement” entered into voluntarily by a person with a disability and someone in that person’s life. This agreement would outline the decisions that the person with the disability would make vs. the supporting person. It allows for something less than full guardianship for someone who can make some decisions but needs help to make others.
Lerma and others in her field encourage us to take a step back and take in the big picture of access and community resources and systems as we strive to better meet the needs of caregivers in our community – and act as better caregivers in the circles we’re a part of.
Alzheimer’s Association Event
COVID-19 and Caregiving
10 to 11 a.m., Monday, April 26
Caring for someone living with dementia during the COVID-19 pandemic adds unique challenges for caregivers. This online program provides simple tips caregivers can put in place whether the person living with dementia lives at home, in a residential facility, or care providers are coming into the home.
Kathryn has lived in North Denver since around the time the Mount Carmel High School building was razed and its lot at 3600 Zuni became Anna Marie Sandoval Elementary. She’s raised two children in the neighborhood, worked at several nonprofits, and facilitates a Caregiver Support Group for the Alzheimer’s Association Colorado Chapter.
Do you have story ideas for The Gray Zone? Email Kathryn@DenverNorthStar.com