Leonard Kijowski, an 88-year-old Ford City resident took care of his wife at home for 12 years. She has Alzheimer’s.

Now she’s in a personal care home, and it’s Leonard who needs help — at least with the small stuff. The caregiving took a toll on him, his son, Alan Kijowski, said.

“The big thing about the caregivers is they’re under tremendous stress. He might not like hearing about it, but as they get older, they worry about a lot of things that you never would’ve worried about when you were younger,” Alan said.

Alan lives in Freeport, an Armstrong County borough about 20 minutes away from his dad. He worries about his dad throughout the day. He wants him to move in.

“It would be a lot easier in a lot of aspects,” Alan said. He and his wife work full time, and they have three kids. “I would feel better having him here … It’s total chaos. …

“From my perspective as a minimal caregiver, it stresses me out and I’m not doing much for him now.”

Alan Kijowski looks on as his father and mother visit in her room at Grey’s Colonial Acres. Alan said caregiving took a toll on his father, and he expects he’ll have to help him out more soon. (Photo by Connor Mulvaney/PublicSource)

Alan Kijowski looks on as his father and mother visit in her room at Grey’s Colonial Acres. Alan said caregiving took a toll on his father, and he expects he’ll have to help him out more soon. (Photo by Connor Mulvaney/PublicSource)

The Kijowskis are part of a large and growing national network of family caregivers.  

In 2013, an estimated 1.65 million Pennsylvanians were caring for their loved ones, according to the AARP. That’s a sizeable chunk of the state’s 12.8 million population.

As the Baby Boomers age, many of them want to stay at home for as long as possible, making family caregiving commonplace in the nation. According to the AARP, there are about 40 million family members in the United States taking care of their loved ones at home.

“We realized what a service caregivers were giving, not only to loved ones and family, but how much it has meant in the overall long-term care system,” said Ray Landis, the advocacy manager at AARP Pennsylvania. “We saw the value that caregivers are bringing and we started to think about what they really need to continue to do what they’re doing.”

That’s where the CARE Act comes in. Pennsylvania passed a bill in April to address some of the challenges caregivers face, and hospitals have until next April to figure out how to provide the support and education required by it. How effective it can be remains to be seen.

When caregivers are family, it’s more than a transaction, but there’s still a cost.

The patient may not get the level of care they need. The person providing care and supervision may be juggling a job and family, like Alan, who said that even though his dad doesn’t need much help now, it can still be a strain.

Add keeping track of pills or setting up IV fluids, and it could spell trouble.

What is the CARE Act supposed to do?

Pennsylvania is the 23rd state to pass a bill like the CARE Act, which stands for Caregiver Advise, Record, Enable.

Hospitals have a year to make plans for helping family caregivers not only understand the level of care required, but also to equip them with the skills to perform those tasks after a loved one is discharged.

Under the act, once a person is admitted into a hospital, the hospital will need to provide either the patient or the patient’s legal guardian with an opportunity to designate a caregiver. A caregiver can be anyone who provides assistance to that person with medical or daily activities. The hospital is then supposed to document that information.

When the patient is ready to be released, the hospital must provide the caregiver instructions on what the patient will need at home, like wound care, injections or medications.

According to the AARP, 40 million family caregivers in the United States provided about 37 billion hours of care to an adult with limitations in daily activities in 2013. The estimated economic value of their unpaid contributions was about $470 billion in 2013 — up from roughly $450 billion in 2009.

Hospitals were already mandated to communicate the discharge plan to caregivers under Medicare and Medicaid. Those guidelines, however, did not instruct hospitals on how to involve the caregivers or how to train them.

Even though the CARE Act does make those instructions more specific — by calling for caregivers to be given demonstrations of medical tasks, among other things — there are no repercussions in the bill for the hospitals should they not follow those guidelines.

Landis said that law was designed to “encourage the hospitals,” to follow the rules, rather than reprimand them when they don’t.

The overall goal of the CARE Act is to reduce the number of mistakes made at home, thereby reducing hospital readmission rates, which Tami Minnier, the chief quality officer for UPMC, said is something that no one has the magic recipe for.

Western Pennsylvania hospitals are below the state averages in readmissions, according to a report by the Pennsylvania Health Care Cost Containment Council.

From January 2013 to August 2014, for example, more than eight out of every 100 patients hospitalized for diabetes management were readmitted for the same problems. In Allegheny County, it was closer to seven out of every 100 patients, and six out of every 100 in Beaver and Butler counties.

Minnier said readmissions for the same condition, as opposed to being admitted for a new health problem, are an issue for the country as a whole.

“It’s been a very difficult problem to solve,” she said, citing that UPMC is forming a committee to ensure its hospitals follow through in “living the law to its fullest extent.” The Allegheny Health Network said it has also formed a committee to do the same.

Minnier said readmissions for the same issues are frustrating for the staff and that “the principle of ensuring that the patient and caregiver understand what they need to do to keep themselves out [of the hospital] is a good part of the law.”

‘Thrown into the fire’

According to the AARP, two out of three family caregivers who perform medical tasks at home reported that their relatives with chronic illness had not been visited by a healthcare professional in the past year, and almost half were administering five to nine prescriptions a day, including injections.

According to a report by the AARP, 16 percent of caregivers say their loved one was hospitalized three times or more in 2015.

42 percent of caregivers are performing medical tasks without training. (AARP)

“That’s why I think the hospitals were interested in making this work, too,” said state Rep. Hal English, R-Hampton Township, who backed the bill and is also an elder law attorney. “It doesn’t do them any good to do everything right and then the person gets home and can’t remember or figure out what to do.”

In that same report, the AARP found many caregivers (42 percent) are performing medical tasks without training, and when asked how they would like to be taught, 61 percent said they wanted a qualified person to show them what to do.

“They felt like they were getting thrown into the fire,” Landis said, noting that sometimes the caregiver isn’t a patient’s spouse or even their power of attorney, so there needs to be extra care to ensure everyone is on the same page upon discharge.

While Alan Kijowski acknowledges that, in many ways, his family was lucky with his mom — she never had to be admitted for any physical ailments — he said that he tried to be with his dad through exams and visits partially because of the magnitude of information given to caregivers.

“They’re forced to make a lot of these decisions on their own,” he said. “… I needed to help him.”

There will still be issues

The help coming from the CARE Act will only be realized if all goes according to plan.

The law won’t go into effect until April 2017, which gives AARP and other organizations a chance to inform the general public about the changes to come. It also is supposed to give hospitals a chance to train personnel, Landis said.

Betsy Snook, the CEO of the Pennsylvania State Nurses Association [PSNA], is skeptical about whether or not procedures will actually change.

“[In the bill], where it says ‘the hospital shall,’ read it through with ‘the nurse shall.’ It does become quite a bit of work to do when you’re taking care of maybe six patients yourself,” she said.

The caregiver relationship isn’t always easy to agree upon, she added, and once it is, the paperwork is daunting. The most difficult part, she explained, is rapidly providing a level of education that will keep a patient safe at home.

Snook — though she backs the overall goal of the CARE Act — said she believes it is merely a stopgap for a bigger problem in the medical community, which is a lack of safe staffing for nurses.

“We’re still very concerned that nurses aren’t going to have the adequate number of staff. If you’re discharging [a patient] and one person goes into cardiac arrest, that might take up the rest of your shift,” she said. “Now your patient’s discharge is extended, and you might have to pass this on to the next nurse.”

The PSNA, which represents 219,000 registered nurses, conducted a phone survey in November 2015 of registered nurses from six counties, including Allegheny County. Of the 1,423 respondents, 76 percent of nurses said the most important issue they were facing right now was safe staffing.

House Bill 476, sponsored by state Rep. Mauree Gingrich, R-Lebanon County, seeks to alleviate the issue and is still in the works in the Health Committee. The bill would require hospitals to create and apply nurse staffing standards, partially by having nurses on the staffing committee.

Snook said the goals of the CARE Act can be met.

“Nurses absolutely can do this,” she said. “They do this every day. But they have to have sufficient staff to do so.”

The quest for clarity

Katie Byrnes, a spokesperson for the Hospital & Healthsystem Association of Pennsylvania [HAP], said the guidelines should improve consistency with staff-caregiver relationships.

“A lot of hospitals recognize the importance of making sure they have established relationships with the caregiver for an easy transition process. Everybody wants to know their medications and know how to heal at home,” she said.

For the Kijowskis, straight answers and easy transitions have been hard to come by as they look into moving Alan’s mother, Marcella, from a personal care home to a skilled nursing facility.

For Leonard Kijowski alone, keeping care instructions for his wife, Marcella, straight would have been too much. He said he relies on his son to help. (Photo by Connor Mulvaney/PublicSource)​

For Leonard Kijowski alone, keeping care instructions for his wife, Marcella, straight would have been too much. He said he relies on his son to help. (Photo by Connor Mulvaney/PublicSource)​

Alan said one of the hardest things that the family has had to deal with since his mom’s diagnosis was all of the different information that needs to be processed. He compared it to trying to change your cell phone service and getting three different options from three different operators.

His father, Leonard, laughed at the analogy. “It’s hard,” he said. “I don’t know what I would’ve done.”

The goal of having a person sit down to discuss what needs to be done is part of why HAP backed the CARE Act with AARP, even if it does only address one facet of the choices caregivers are faced with regularly.

“It may give a little more clarity on how to best take care of the patient. It provides consistency and clarity for hospitals, and people might know a little bit more of what to expect when they’re leaving,” said Byrnes. “They want to be told by someone who is looking into their eyes what happens after they leave.”

The Jewish Healthcare Foundation has contributed funding to PublicSource’s health reporting.

Brandy Hadden is a freelance writer in Pittsburgh. Reach her at haddensbrandy@gmail.com or follow her on Twitter @BrandyHadden.

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