Whether you are 25 or 65, you’re probably caring for an older family member in some capacity, or know someone who is. As a generation, baby boomers are in the unique position of being seniors themselves or caregivers for their aging parents. The oldest boomers turn 73 this year and the youngest are 55. Boomers are the only generation whose birth years, 1946 to 1964, are agreed upon by all sorts of organizations.
The Bluegrass Area Agency on Aging and Independent Living (BGAAAIL) offers an annually updated “Pathways Guide” on its website. The 100-page PDF contains information on housing options and home health care, medical supplies and transportation, meals and activities, and legal details such as living wills, advance directives and a durable power of attorney.
The federally funded National Family Caregiver Support Program (NFCSP) offers supplemental supplies and respite assistance for grandparents who are raising their grandchildren, and people who are caring for senior family members. These NFCSP services are available through the Bluegrass Area Agency on Aging and Independent Living. The local agency also provides caregiver counseling to address difficult issues, caregiver training to help with decision-making, and assistance in locating any other service a caregiver might want.
According to the Kentucky Partnership for Long-term Care, at least 70% of people over the age of 65 will need certain long-term care services, like an assisted-living facility or nursing home. More often than not, it is up to the individual or family to pay for those services.
Kelly Parsons, a certified social worker with the Sanders-Brown Center on Aging at UK, researched the average monthly cost of senior care in the area. A skilled nursing facility (nursing home) is $8,120. Assisted living runs $4,000 to $6,000 per month, and a personal care home aide around $3,200. “Medicare covers none of these,” she said.
An assisted-living facility is a social model. Personal care and skilled nursing facilities are medical models. For in-home assistance, caregivers have quite a few choices, from private individuals who are often referred by friends and acquaintances, to franchise organizations with employees that have been screened and bonded, up to 24/7 private-duty nursing with licensed medical professionals.
When hiring an agency, Parsons advises asking about their liability insurance, how long employees have worked for the company, what their policy is if an employee cancels on a scheduled day, what their backup plans are, and if the employees are bonded. Besides looking at background checks, what’s your gut feeling? And remember, it is a business. “They wouldn’t be able to survive if they sent someone for an hour a day. Typically they have a three or four-hour minimum to book,” she said. “Get to know that care provider. Let them know your mother was a master gardener, so the provider you hired can walk in and say, ‘I cannot get my tomatoes to grow, can you help me?’ and start a relationship, so your loved one feels they are of value.”
Caring for aging parents long-distance? “Wherever you go in any state, if you call the local city government they’re going to have an Area Agency on Aging,” Parsons said.
Founded in 1979, the Sanders-Brown Center on Aging (SBCoA) is one of 32 such centers in the United States and is the top recruiter into clinical trials. The center at UK is a pretty big deal. It is recognized around the world for research into Alzheimer’s disease and other age-related dementias. When you hear national news about the latest Alzheimer’s research, chances are good that the research came from Lexington, Kentucky. Examples include the discovery that there are changes in the brain decades before there are outward symptoms of Alzheimer’s; the identification of an illness that looks like Alzheimer’s disease but has different pathological changes in the brain; and just this spring, the center’s Dr. Peter Nelson co-chaired breakthrough research in the discovery of LATE dementia, an acronym for Limbic-predominant Age-related TDP-43 Encephalopathy.
“Not all dementia is Alzheimer’s, but all Alzheimer’s is dementia,” Parsons said. She encourages family members to have open and honest conversations about safety issues like driving, for one thing, and to stop and recognize “how incredibly difficult it can be to move through the aging process.”
For those with aging relatives who are resistant to handing over their car keys, Parsons said, “I encourage them to let us be the bad guys and say, ‘You can’t drive.’”
Yes, driving is associated with independence, but it is simply not worth the safety risk. Parsons says to focus instead on continuing your love one’s strong social life. “Can somebody from church come pick up Mom? Are they safe enough to use Uber?” She also recommends using ITN of the Bluegrass to call and schedule rides to the hairdresser or grocery store.
“We’ve come a long way in dementia diagnosis,” Parsons said. “Before, it was like cancer and people wouldn’t talk about it. But so many more families are affected by it now.” She added it’s important to honor the life of those diagnosed with dementia. “They have short-term memory problems and might not recognize people, but it doesn’t mean they didn’t live.”
Cassie Mitchell is a nurse by trade and COO of Bluegrass Care Navigators. “For adult caregivers, the health care system is so complicated and convoluted, trying to figure out what Mom needs and where Dad needs to go is pretty complicated,” she said.
Mitchell urges people to have a goals-of-care conversation with aging parents. “What we see often is, nobody is talking about what they want or putting it in writing, leaving other family members trying to make decisions on someone’s behalf and there’s all this angst.” For example, four grown children whose mom has had a stroke may have four different opinions about how to care for her. Having a conversation ahead of time about what she would want will go a long way toward having the whole family on board. Check out TheConversationProject.org for tips.
Bluegrass Care Navigators was formed in 1978 as Hospice of the Bluegrass. The name was changed in early 2017 and now operates in 32 counties across Kentucky. On any given day, BCN is providing hospice care to more than 200 Lexingtonians in homes, senior living facilities and in area hospitals.
In addition to end-of-life hospice care, Bluegrass Care Navigators provides six other lines of service for those facing chronic and serious illnesses. There’s a transitional care program with a clinical team to support patients after a hospital discharge; home primary care and “Extra Care” private duty nursing programs; palliative care that works alongside any physicians’ treatments to provide relief from the symptoms and stresses of a serious illness and thereby improve the quality of life; an adult day health care center in Frankfort for social and medical care for those who are aging at home and whose families may need extra support while they work or take a break from caregiving; general grief support services and specific support groups.
BCN is one of only nine Palliative Centers of Excellence in the United States. “People assume they are one and the same,” Mitchell said of hospice and palliative care. “Palliative is the management of symptoms. It’s a specialty like cardiology is a specialty.”
Palliative care can be needed with or without hospice care. For someone who has lived with heart disease for years, for example, a palliative specialist focuses on treating the symptoms of the disease, while a cardiologist treats the disease itself.
Lexington has four senior centers for residents 60 and older with offerings of all kinds, including fitness classes and yoga, meditation and art, music and dancing, bingo and chess, and tai chi for arthritis.
The Osher Lifelong Learning Institute (OLLI) is a learning program at UK for residents 50 and older in Lexington and Morehead. There are classes, workshops, a speaker series and social outings for a nominal registration fee per semester.
“We are social people,” UK’s Parsons said. “All the research shows that for healthy brain aging, we need to stay social, exercise and eat well.”
Tips for Caregivers:
If your loved one has the capacity, make sure you have a durable power of attorney in place to maneuver through paying their bills or signing them in somewhere.
Find out about dementia or Alzheimer’s disease.
Ask for help when you need it.
Write out a list of things that need to be done (mow the yard, pick up a prescription) so when someone asks if there’s anything they can do, you can tell them something specific.
Take care of yourself and find ways to get respite.
Bluegrass Area Agency on Aging and Independent Living
Bluegrass Care Navigators
Lexington’s Four Senior Centers
Sanders-Brown Center on Aging
Transportation for seniors (Volunteer drivers welcome!)