Caring for Mom: Caregiver support helps her continue ‘life’s work’ at home
Pat Coker, 68, spent her entire career as a social worker serving older adults. Prior to retiring in 2020, she worked at the Delaware County Office of Services for the Aging (also known as “Delcosa”). Yet when her own mother, Mary Coker, confessed that she was having trouble remembering things and feeling forgetful, Pat was unprepared for the road ahead.
“I told her, ‘It’s okay, Mom. It’s normal,’” Pat said. “I didn’t really realize how much she had forgotten until she was in the hospital and couldn’t remember the year.”
In 2016, Mary was diagnosed with dementia. She was able to navigate the beginning stages of dementia by living with one of her five sons and with minimal assistance from her children. But by 2018, her disease had progressed significantly. Mary, who is now 91, was forgetting to take her medication, dressing differently and losing the ability to cook for herself.
Mary’s six children held a family meeting to discuss how to best address their mother’s worsening condition to ensure her safety and well-being. Soon after this meeting, Mary began experiencing fainting spells that often sent her to the hospital. Despite several conversations with her mother’s social worker, Pat was initially hesitant to bring an aide into the home.
“I didn’t think anyone could take care of her like I could,” Pat said.
As time went on, Pat’s brothers urged her to take a break from the physical and mental burdens of full-time caregiving. As her mother’s dementia progressed further, Pat spent each day helping her mother with every aspect of daily life, including showering, dressing, cooking, eating and taking medication.
Then, she met Francine Williamson, a care manager with Philadelphia Corporation for Aging’s (PCA’s) Caregiver Support Program.
As one of the programs federally funded through the Older Americans Act (OAA), caregiver support is provided by all Area Agencies on Aging (AAAs) across the nation, including PCA, which provides OAA services in Philadelphia County. Through the Caregiver Support Program, caregivers of older adults and adults with disabilities, as well as relative caregivers of children, can receive formal supports with caregiving, including financial assistance, care management, education, training and benefits counseling.
Recently, Act 20 of 2021 was signed into law by Pennsylvania Gov. Tom Wolf and allowed for the Pennsylvania Department of Aging (PDA) to increase monthly and lifetime housing reimbursement limits for participants through the Caregiver Support Program for the first time in nearly 30 years. The new guidelines apply to all Caregiver Support Programs offered through AAAs in Pennsylvania, including programs provided by PCA.
For caregivers of older adults, like Pat, financial reimbursements make a huge difference. “I was taking a lot out of my pocket because she’s my mother,” said Pat. “Receiving reimbursements was a big help.”
With financial reimbursements from PCA’s Caregiver Support Program, Pat was able to help her mother with all aspects of her care, including maintaining dignity in her appearance.
Although hesitant at first, Pat has agreed to have a personal care aide visit the home every day, which gives her three to four hours of respite. “I am now able to do what I need to do for myself,” she said.
Prior to the COVID-19 pandemic, Pat and Mary enjoyed going out to eat, attending theater performances and traveling. Their favorite destinations included Ocean City, New Jersey and Mary’s hometown of Florence, South Carolina.
While the pandemic and the progression of Sally’s dementia have limited their ability to travel, the two are still able to enjoy Gospel programming together. “The music makes her feel so good,” Pat said. “She is such a spiritual person, and she gave us all that foundation.”
Reflecting on her time as a social worker, Pat has been around people living with dementia her whole career. Therefore, she can extend those skills and knowledge to her brothers, as they all continue to navigate the progression of their mother’s dementia.
She lovingly refers to caring for older adults as her “life’s work” and also frequently helps her mother’s 80-year-old neighbor with her mail and utility bills.
“To be a caregiver, you have to care,” Pat said. “You have to love what you’re doing, so you can give that love to the person.”
Help for caregivers
PCA’s Caregiver Support Program empowers caregivers of older adults, adults with disabilities and grandparents caring for grandchildren through information, planning resources and financial assistance. For information, call the PCA Helpline at 215-765-9040 or go to pcaCares.org/caregivers.