At-home care a study in choices

Between the vastly different worlds of totally independent living and care facility living lies a realm that is as varied and individualistic as those who reside within it. For those with chronic illnesses or advanced aging, and their families, the choices for at-home care may be many or few depending on the circumstances. But if there is a credo of home health care it is that … choices.

It sounds simple on the surface. Almost everyone wants to live at home, despite aging, despite illness, despite the inability to do for oneself anymore. Insurance companies and the government also want people who can, to live at home – it is far less costly to provide supplemental care rather than full-time care.

However, many factors come into play that determine whether home health care is feasible – the patient’s physical and mental condition, financial circumstances, family support, available services, and community assets.

Having the right mix of those factors can help guarantee living at home; if one or more is missing, it makes putting together a living-at-home plan much more difficult.

When Brockport resident Nora Studier brought her 89-year-old husband, Elmer, home from Lakeside Biekirch Nursing Home last fall, she did it because she knew he would be more comfortable and happier in the home they had shared for over 40 years. She also knew it would be a difficult job for her as Elmer’s primary care giver. She would have to help him bathe, shave and dress every day, manage his medications and dietary needs, and keep him interested and engaged in the world around him. All of that and take care of the household and yard chores that the couple used to share.

The doctor insisted that Nora have some help in place before he discharged Elmer, and a little more than a year later, Nora is glad that he did. Although Elmer recently passed away, Nora had help from an aide during that year, help that was invaluable.

Once or twice a week, Linda (not her real name) would come to the Studier’s home for about three hours. During that time, Nora could go shopping, run errands, have her hair done and keep her own medical appointments. The time also gave her a much needed break from the caregiver’s routine.

Linda didn’t come just to keep an eye on Elmer. She planned activities for the two to do together, like baking, brought Elmer little presents, and kept him company while Nora was gone.

"He enjoyed Linda coming," Nora said. "And I felt very comfortable leaving him with her. I know we were fortunate to find a situation that worked so well for us."

Nora found Linda through word of mouth - a way that few people manage to find the right kind of help. Most people have more success going through a home health aide agency.

Westside Home Care Agency, located in Brockport, opened ten years ago in the basement of founder Jackie Maxwell. A registered nurse, Maxwell saw the need for home health care that wasn’t based in the city.

"Rochester agencies had a hard time getting aides out to the suburbs," Maxwell said, "because there is little public transportation. I saw a need for a home health agency that was located in the community, closer to the people it would be serving and to the people who would be working for it."

A little over two years ago, Hilton East, a residential care facility, started Angels in Your Home, a home health aide agency based at the facility. Both Westside and Angels contract with several agencies like Lakeside Health System, Visiting Nurse Service, VIA Health, Unity Health, to provide home care. Other clients come without a referral from another agency.

The first step is always an assessment performed by a registered nurse, either through one of the referring agencies or through the home health aide provider. The nurse determines what types of services are needed by the patient and how often they are needed. Family members and social workers have to determine how much of the care is covered by insurance or government aid and how much the patient can afford to pay. Once the home care plan is written, it is up to the Westside or Angels to provide an aide with the necessary skills for the prescribed number of hours per week.

Some of the activities that home health aides might help with include: personal care (bathing, dressing grooming and toileting); light housekeeping and laundry; appointments and shopping; meals, medication and exercising.

All home health aides must receive a minimum of 80 hours worth of training. Both Westside and Angels run their own training programs. Aides must be 18 years of age, read and speak English, and most of all, have a caring heart.

Aides

Who are home health aides? According to Maxwell, they come from all walks of life. Some are retired or laid-off from another career, others want to supplement their income with a second job, or only want to work part-time. One aide worked for Maxwell into her 70s simply because "she liked helping people."

That desire to help others is the prime motivation for people who choose careers as home care givers.

"Research shows that most people are not motivated by money," explains Rod Phillips, director of Angels in Your Home. "People are motivated by a sense of community, a purpose for what they’re doing, and some kind of hope, which may be a raise or climbing up the ladder. We look for someone with a caregiver’s heart."

It might seem that people with a caregiver’s heart are a rare commodity. Phillips said he "can’t hire people fast enough."

Most home health aides are women, many with young children. "We love to find people who are 40 years old or more," Phillips said. "Their kids are grown, they’ve settled into their lives, they’re mature and dependable."

But Maxwell said that most of the women that are attracted to home health careers are already care givers. "They’re already taking care of people in their lives – their children, their parents. That’s what makes them good at this kind of job, but it can also pull them in too many different directions."

Turn-over in the home health aide field tends to be on the high side. People give it a try and decide it’s not what they want to spend their lives doing. Maxwell said she sees it as a cyclical thing – an aide works for a while, then maybe leaves to take care of someone in her own life, then comes back again.

The work may be difficult, but it’s not as low-paying as many might suspect, although Phillips adds that "none of them are paid what they’re worth."

Shannon Balmer, a Westside Home Care Agency aide, was recently named the "Home Health Aide of the Year" at a ceremony in downtown Rochester. Balmer was recognized during "Home Health Aide Recognition Week," October 8-14, for her care of the elderly and disabled.

"Shannon’s the perfect example of doing what you do because it means something to you, not because it’s your job," Maxwell said. "She has that innate quality of caring that you either have or don’t. It can’t be trained into you."

One of Angel in Your Home’s certified home health aides, Debbie Bischoping, has been caring for people, as a job, for three years. In reality, taking care of others is something she’s done all her life. As a teenager, Bischoping helped her mother take care of her cancer-stricken aunt. She went on to college for a career in criminal justice and worked for the Monroe County sheriff’s department for nine years before staying home to take care of her newborn son. Once he headed off to school, Bischoping started trying to decide what kind of career she wanted to pursue.

"I realized I have a need to take care of people," she said.

But taking care of the elderly or ill isn’t a one-way street, Bischoping said. She gets a lot in return. "I learn so much from older people. They share their experiences with you, it’s pretty amazing to look at the world through someone else’s eyes."

Besides the obvious physical difficulties of the job, it can be emotionally draining too. "It’s difficult not to get attached. There’s a fine line that we have to walk, to be caring, but not to get too involved," Bishoping said.

Not getting too involved is something Maxwell lectures her staff about. Occasionally, patients start asking for "extras" that aren’t part of the prescribed plan. Or sometimes family members start making requests that are out of line.

All in all, the rewards outweigh the negative aspects of the job, Bischoping said.

"They’re so appreciative because they know that without you they wouldn’t be able to stay in their homes," she said. "I believe God calls us all to help others in some way. This is the way He calls some of us."

Making it work

If there’s one perception about the home health aide industry that Phillips could change it would be that the industry isn't reliable. He said we’ve all heard stories about aides that don’t show up when they’re supposed to, agencies that can’t reliably fill all the time slots, and patients who see a slew of different aides rather than just a couple of regular faces.

Both Westside and Angels attempt to give patients some continuity in the care givers they see, but from a practical sense, it’s very difficult to do. "We start with a geographic plan," Phillips said. "Then it’s like putting a giant jigsaw puzzle together, and it has to be done every day, again and again. It’s the most stressful part of the job."

An aide may have a two-hour shift in one spot, a half-hour travel time to the next three-hour shift, then a half-hour travel time to the next two-hour shift. If that aide calls in sick, the scheduler has to find other aides to cover the shifts between their own regular shifts.

For patients who have service seven days a week, for a morning shift and an evening shift, its impossible to have only one or two regular aides. "We tell everyone that they can’t always have the same aide," Maxwell said, "what we can promise is that the person we send will be trained and capable."

Reliability is something that Phillips looks for when hiring new aides. "The majority are reliable," he said, "but it only takes an unreliable one here and there to make it seem like they’re all unreliable. Add to that the fact that we’re always short of how many we need, it’s not hard to see how some people get that perception, but the truth is most of our clients are very satisfied."

Another problem is that most clients prefer to have aides come in the morning. "That makes sense from the patient’s perspective," Maxwell said, "that’s what I would want as a patient too, someone to come help me every morning. But we can’t put an aide at everyone’s door at 8 a.m., then what do the aides do the rest of the day? Some people have to be willing to have late morning or afternoon help."

Both Angels and Westside do background checks to be sure that perspective aides have "clean" records. They also ask for and check-out personal and business references. "Integrity is a high priority for us," Phillips said. "We’re sending strangers into clients’ homes, we have to do everything we can to make sure they’re honest."

Another problem patients and families often encounter is changing rules and policies from Medicare, Medicaid and private insurance plans. One major Medicare policy change went into effect on October 1. Understanding changes and who they apply to is often difficult and frustrating for families.

Then again, often the patient’s needs change over time and it may take the system time to catch up to those changes.

"Is the system perfect? No," Phillips said. "Does anyone know what the perfect system is? No."

One thing is sure - home health care is a growing trend, both for financial reasons, and because that’s where people want to be – home.

"It used to be," Maxwell said, "that when someone was sick or elderly there was someone in the family that could take care of them. Not anymore. We have to find a different way. Years ago, we started taking away people’s independence by putting them in care facilities because that’s what’s easiest to do. Now we’re going the other way – we’re trying to find ways to keep people at home because that’s what people want."