Just listening to Irene Ingemi describe the patchwork system of friends, family, and part-time day-care services she's stitched together to help her care for her frail mother-in-law is exhausting.
The 90-year-old broke her hip last fall and has since become incontinent, needs a walker to get around, takes seven pills daily, and is having increasing memory problems.
As Ingemi, a 60-year-old nursery school teacher, dashes from work back to her Norwood home each day, she mentally juggles a list of appointments for her mother-in-law with chores that need to get done.
"It's a little strong to say I would feel like a failure if I had to put her in a nursing home, but if I can keep her home I would like that," Ingemi said. The arrangement, she acknowledged, can be overwhelming.
Ingemi is hardly alone. With reduced funding for home-based services to help ease the burden, and mounting economic pressures to shorten hospital stays, legions of baby boomers are caring for aging parents and shouldering more complex nursing tasks once performed by professionals in hospitals and nursing homes, according to a recent national survey from the AARP's Public Policy Institute, a policy think tank, and the United Hospital Fund.
These caregivers are administering intravenous medications to their loved ones, treating pressure sores for bed-bound family members, cleaning surgical wounds, and operating breathing machines, the survey found.
And they are overwhelmed, afraid they are going to make a mistake. Often they have received little training for these daunting tasks, according to the findings.
The survey of more than 1,600 family caregivers found that two-thirds of those queried said they struggle with incontinence care, which included changing adult diapers of a loved one. Roughly half reported difficulties operating a family member's mechanical equipment such as breathing machines and feeding tubes. More than a third had problems using monitors to measure blood pressure, and sugar and oxygen levels.
For Ingemi, one of the more sensitive issues has been her mother-in-law's incontinence.
"They are your parents, so giving them a bath and making sure their clothes are clean," she paused, "it's awkward."
One big stresser for many caregivers is giving medications — many are administering 10 or more medications a day, often several times a day, despite roughly half the caregivers having jobs, the survey found.
"They are worried about making a mistake," said study coauthor Susan Reinhard, senior vice president and director of the policy institute.
"They have to come home at lunch, or put them in a pillbox and hope they did it right," Reinhard said. "In nursing homes and hospitals we have medication aides that do nothing but give out meds."
The institute's report noted that policy makers still use half-century-old measures to describe the help family members are providing — measures used to determine whether their loved ones are eligible for home-based services that might ease the burden on these caregivers. Those descriptions, such as help with bathing and eating, do not begin to measure the complicated tasks family members are routinely providing, the report said, and need to be updated.
Most of those surveyed said the family members they cared for had multiple, chronic health problems, including heart issues, osteoporosis, arthritis, high blood pressure, and memory difficulties.
Such a cascade of diseases, in a fragmented health system in which each specialist is focusing on one issue at a time, often means that family caregivers rarely find someone amid the maelstrom that can offer help to coordinate services.
"People start to cry when you say, 'I know how you feel and this is how I am going to help you,'" said Dr. Sharon Levine, an associate director of the Geriatric Medicine Fellowship program at Boston Medical Center, and a professor at Boston University School of Medicine.
Levine, who specializes in elder care, said she often helps connect overwhelmed family caregivers with a myriad of services and equipment that they didn't realize are available, such as home-delivered meals and special lifts to help them get a disabled family member out of bed.
"If you are a 5-foot tall, 85-year-old woman, and your husband is 6-foot-4, a big guy with dementia and bed-bound, you are turning that person, you are changing incontinence supplies, and you are bathing that person and feeding that person," Levine said. "You can hurt your shoulders and your back."
With a nationwide shortage of health care workers who specialize in geriatric care, and projections of that shortfall becoming acute as baby boomers age, Levine piloted a program eight years ago that places medical school residents from a wide array of specialties in teams to coordinate the care of an elder patient from the time a patient enters the emergency room to discharge from the hospital.
The AARP survey found that many family caregivers said they had multiple interactions with hospitals and physicians' offices while taking care of their loved ones, yet rarely received coaching or training about how to perform some of the more difficult wound, medication, and equipment-related tasks at home.
Levine said her program "addresses all the things [physicians] should be doing to make sure hospitals are safe places for older people, and transitions from ER to home are solid," she said. "Don't send someone home with paper prescriptions if there is no one there to fill them."
At the same time, Levine's colleague at Boston Medical Center, Clare Wohlgemuth, a registered nurse who directs the hospital's geriatric services, said her team routinely follows up with family caregivers to ensure recommended services are helping.
Sometimes, she said, simple recommendations can go a long way toward easing burdens.
"We suggest going out and buying a baby monitor, so when your mom is asleep you can take a nap for an hour or two, so you don't have to have your ear to the door," Wohlgemuth said.
Another piece of advice?
"Don't be shy," she tells family caregivers about interacting with doctors and other health professionals.
"Make sure you have written down what you want to know, who you are talking to, and if you are not satisfied or don't understand, tell them you want to speak to their supervisor," she said.
And most of all, Wohlgemuth said, she advises family caregivers to take care of themselves because burnout is rampant.
"You are no good to anyone as a caregiver if you are not caring for yourself," Wohlgemuth said. "We teach them to take time out for themselves."
Her team coaches caregivers to ask family members or friends for help, particularly so that the family caregiver can get some regular respite time for themselves.
For Ingemi, respite has come in the form of a hot tub her husband installed in their backyard shortly after the couple started caring for his mother last year. With her husband gone 12 hours a day for work, and Ingemi shouldering much of the caretaking, both were exhausted and had little time left for each other. The hot tub has become their mini getaway.
"Having that little bit of time together after she is in bed is relaxing," Ingemi said.