When Cardelia Burton became her mother’s primary caregiver last April, she said it was like gaining a third child.
Her mom, Inez, is 86 and has Alzheimer’s. And much like a toddler, Inez needs help with most activities, including dressing, eating and using the bathroom, Burton said.
Over the past five years, two of Burton’s sibling have each been a caregiver to Inez, till their own health problems made it impossible to care for her.
As Inez and an entire generation of baby boomers age into their senior years – and family or caregivers learn to support them – the demand for quality and cost-effective elder care is on the rise.
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And more of them are coming to learn about, or rely on, the federally funded model of care called PACE – Program of All-Inclusive Care for the Elderly. While it’s been around nationally for more than 20 years, it’s relatively new to Charlotte. Another program recently opened that serves Gaston and portions of Lincoln and Cleveland counties.
PACE of the Southern Piedmont serves Mecklenburg County and parts of Union, Stanly and Cabarrus counties. Service areas are determined by ZIP code.
It opened its 19,000-square-foot facility at Milton Road and the Plaza in Charlotte in early 2013. Like all PACE programs, it provides a spectrum of care to frail seniors, as an alternative to nursing home placement for those who can remain in their homes with a little help.
“We’re the adoptive family that happens to have a medical background and the free time to go in and be the caregiver,” said Jim Graham, executive director of the local PACE program.
These not-for-profit Medicare programs are designed for people over 55 who qualify for skilled nursing care, but are able to remain in their homes. Anything deemed medically necessary falls under the umbrella of the program. Each participant’s financial responsibility varies according to their situation, Graham said.
But for many who meet certain criteria, they pay nothing out of pocket for prescriptions; physical, cognitive and rehabilitative therapies, medical equipment or specialists visits and other services.
In addition to long-term preventative care, PACE programs also provide socialization through weekday meals, adult day care and special events.
Burton, herself a baby boomer in her 50s, said her mother was one of the first four participants to join when PACE opened in Charlotte. Since then, it’s made a profound difference in their lives. “I tell people it’s overwhelming, it’s so good.”
A personalized program
PACE participants and their level of care varies by person, said Julie Hutt, director of education and community outreach at the local PACE center. But they have one thing in common: All are looking at the need for potential nursing home care.
Shawn Bloom, president and CEO of the National PACE Association, said PACE programs typically care for senior adults who fall into one or more of the following area of needs:
• The medically complex – those with ongoing health issues such as diabetes.
• Those with functional problems such as trouble walking, bathing, eating,
• Those with cognitive problems such as dementia.
Some clients come to PACE after a family member realizes how fragile their loved one has become. “It’s typically a slow decline in the elderly ... precipitated by some type of event, like a fall or a hospital stay,” Bloom said.
When a participant enrolls, a care plan is drawn up with each person, said Hutt. A new participant may come to the PACE location every weekday, then have their needs re-evaluated as they improve, she said. “We like to get them as well as they can be.”
Hoping to walking again
Before he joined the local program in 2013, Curtis Herron, 55, said he hadn’t stood up in nearly seven years. Herron has been living with multiple sclerosis and used to spend most days in bed. His doctor didn’t want him living alone, so two years ago he moved in with his mother, who’s 75.
“She can’t lift me,” Herron said, noting he would remain in bed all day if no one could help him to his wheelchair. He relied on family members to pick up his seven prescriptions each month and had to call an ambulatory service to get him to medical appointments.
Now, PACE provides his medications and daily transportation to and from the facility, where he does physical therapy. Several weeks ago, Herron was finally strong enough to stand up. “My goal is to learn to get out of the (wheel)chair, into bed, to stand and walk again,” he said.
PACE of the Southern Piedmont also offers respite for caregivers through support groups and other activities.
“Caregiver burnout is huge,” Hutt said. “Lots (of people) try to support a loved one at home till they’re exhausted and at a crisis point.”
When Inez Burton first started going to the PACE facility, her daughter would get her dressed and fed each day. After a fall, Pace started sending a certified nurse assistant to their home three days a week to help in the mornings, as well as two nights a week to help with baths.
“They made an eye appointment for her. They have a podiatrist come in,” Burton said. Medications are provided monthly. When they began considering a transport wheelchair – designed to be pushed by a caregiver – for Inez, PACE told them it was just a matter of picking one out.
Inez goes to PACE about three times a week and will likely begin going five days a week. Burton also started attending the facility’s caregiver support groups. “I listen to others’ struggles and I’ve got it great.”
Above all, Burton said, she has peace of mind that PACE medical personnel are monitoring her mother’s health.
Giving up their doctor
The program has its critics, who cite what they say are drawbacks. For one thing, participants have to give up their primary care physician to receive comprehensive care through the program.
Some have voiced frustration that many programs are at capacity and have waiting lists, or that potential clients don’t live within a program’s service area, program officials acknowledge.
Some might be too sick to join or not sick enough, while others have too many assets or too much income to meet the financial requirements, said Graham, the local director.
But Bloom, the national official, estimated that during PACE’s 20-plus year history, the program has kept about 90 percent of participants out of skilled nursing facilities and in their own homes. It’s an impressive statistic, he said, considering 55 percent of PACE participants nationwide have some form of dementia.
North Carolina has been one of the states experiencing strong demand for the service, said Linda Shaw, executive director of the N.C. PACE Association. The state has the second most sites in the country.
The first state program opened in Wilmington in 2008 and now there are 10 PACE program sites across North Carolina, with more on the way. Shaw anticipates having 1,1000 participants enrolled statewide by June.
About 38 seniors currently come to the local PACE provider each day, whether for medical care or for lunch and socialization, Graham said, noting the program had nearly 50 enrollees on March 1. The program will reach capacity at slightly more than 200 participants, and Graham said staff will grow as participants do.
Satellite offices will be the next step when growth demands it, Graham said, noting that based on the number of referrals, they may start searching for buildings this year. “We want to be ahead of the curve.”