They come under many names. Personal care attendants... Certified nursing attendants... Home health care workers... Personal assistants. Some are trained in the medical profession, while others are simply students or other able-bodied folks willing to take on some tough but possibly rewarding work.

They can be a positive boon to people who have physical disabilities and who require regular help getting ready for work or school or other daily routines. Many people affected by the neuromuscular diseases in MDA's program have benefited from employing home health care workers, and have been able to pursue active lifestyles with their help.

Jordan Clark and aide, Richard McInrow

The position of home care attendant requires an odd mix of attributes. Physical strength is important if lifting and transferring are required. A lack of squeamishness about the human body is essential if help is required with bathing, dressing and toileting.

Medical knowledge is, of course, a plus, but not all attendants have it. Other qualities such as patience, a sense of humor and a level head in times of emergency can be equally crucial.

        Family: Too Close to Home

Some people whose mobility has been limited by neuromuscular disorders may be able to rely on family members to provide home health care. But in some cases the kind of daily help that's required may be too much to ask, even of a loved one.

What's more, in such cases it can be hard for the person receiving care to complain if the quality of care seems inadequate. And having one's spouse help with bathing and toileting on a daily basis could take the ardor out of the most passionate love life.

Hiring a professional may be preferable. But while recent economic prosperity has been good for many, it's not a plus when it comes to hiring home health care aides. A better job market means there are fewer people willing to accept difficult, demanding and underpaid positions — which unfortunately is how most home care positions can accurately be described.

        Finding and Hiring the Right Person

In screening and hiring home health care aides, a home care center or hospital could be a good starting point for information. It may be necessary to place an ad in a local newspaper, on the Internet or in a visible public place, providing broad information about the work schedule, type of help needed and wages offered.

For the interview process, the employer should be totally honest about the most difficult or embarrassing aspects of the job. This is the only way to give applicants a fair chance to ponder the realities of the position before accepting. It's also an opportunity to talk about the nature of the disease and the specific care necessitated by it.

Writing a job description and discussing it in detail with applicants is a good idea, too. A description could include detailed entries for such topics as bathing, dressing, exercise, bowel and bladder management, transferring, meal preparation, housekeeping, laundry, shopping and assistance with transportation. Another important topic of discussion is the aide's time off.

The interviewer should take notes after each interview, or the applicants may begin to blur together. It's highly advisable to seek and check references; if a home care agency is referring the applicants, the agency should be able to help with background checks.

Unfortunately, it's not unusual for trusting employers to learn too late that the person they welcomed into their home has a troubling past, possibly including a criminal record.

        Cordial Relations

Once an attendant has been hired, a cordial, professional working atmosphere is essential. Much of the responsibility for setting the right tone rests on the employer.

But what if an attendant becomes ill, or there's a sudden blowup resulting in a severing of relations, leaving the employer stranded at home without care?

It's a good idea to prepare in advance a list of backup attendants before they're needed. It should include people who can be counted on to provide essential care, not necessarily the full scope of services provided by the regular attendant. A backup list could include friends, family members or former attendants.

Following are accounts of several families and individuals affected by neuromuscular diseases and their experiences hiring home health care workers.

        Needing Help in Paradise

Tamara Moore lives in Paradise, Calif. She's 32 and is affected by several debilitating conditions, including carnitine palmityl transferase deficiency, a metabolic disorder that's among the neuromuscular diseases covered by MDA.

Tamara Moore

Moore uses a wheelchair part of the time. Her symptoms, which can be exacerbated by numerous factors including exercise and stress, come and go unpredictably and often involve severe bouts of pain and weakness. Tamara and her husband, Rob, who's 41, have been married for 13 years and have two children.

"Usually, we bring in a CNA [certified nursing assistant] three times a week to help her bathe," says Rob. "And then, depending on whether she's going through a lot of symptoms at the time, we can have a nurse come in daily. Otherwise, it's a physical therapist or CNA that would come in three times a week.

"We live in a retirement community even though we are not retired, and there are a lot of home health care aides in this area," he says.

Rob, who provides some of Tamara's care himself, is largely responsible for managing the home care. Unfortunately, the time when Tamara most needs home care is the time when she's least able to take a hand in management.

"Usually when I am in need of their assistance, I am in rather bad shape and not always completely aware of what's going on," she says. "It's a very vulnerable time for me, being so sick and sometimes unable to move, and it's important for me to feel that the home health worker helping me is competent, sensitive and really cares."

        Attitude is Crucial

Moore feels it's important that attendants be empathetic enough to be able to imagine what it's like to be "in my situation and in their hands." Her husband agrees that attitude is paramount.

"We have people that come in and are pretty negative, who sometimes have a worse outlook on life than patients do," he says. "I've heard people come in and say things like: 'Wow, you are really lucky to be alive.' Things you just wouldn't normally say.

"Most of the CNAs that come in are simply nursing assistants that require an eight-week course," he says. "They're not real high-tech people or anything like that. They're pretty low paid."

The hospital that provides the home care workers does background checks, but Rob has his own list of questions for each applicant.

"I screen them pretty well. I ask them how long have they been doing this, what are their qualifications. I ask them if they know about my wife's disease and what are they willing to learn about it.

"I also go a lot on what Tamara feels," he says. "If she is uncomfortable with somebody, then I have to act on what she says.

"Most of the time, the problem is just their attitudes. 'I don't get paid much for this job, so that's how I'm going to act.' That sort of thing."

        Developing Bonds

Rob says it's natural, even expected, that a closeness or intimacy develops between the caregiver and the person being cared for.

"It gets close. When you are working closely with somebody, you need to have some kind of relationship and I would expect that."

What about transferring and lifting?

"Most of the time I'll just do that myself, unless my back is out," says Rob. "My wife just prefers me to do it."

Rob doesn't think the aides are being paid enough. "We are asking somebody to take care of somebody's life, and they've got to do a lot of dirty stuff, and I don't think they are being compensated enough for it. I think that's the problem, but then again they need more training, too. It's pretty much an unregulated field. You have to regulate it yourself.

"Leave no stone unturned," says Rob about the rigors of checking and selecting aides. "Just because they are a nurse or health care provider doesn't automatically conclude that they are necessarily competent, sensitive or even caring," Tamara says.

"I have come to meet many home health workers, though, who are everything that I could hope for in a person who is caring for me during such a difficult time.

"In fact, one of them is my husband!" she says.

        Ready for School

Kim Clark, 38, of Toledo, Ohio, has a 13-year-old son with Duchenne muscular dystrophy, Jordan. Jordan uses a motorized wheelchair and needs help in the morning getting dressed and ready for school.

Jordan Clark, who's 13 and has Duchenne MD, has a friendly relationship with Richard McInrow, his aide.

"I have somebody come in every morning, Monday through Friday," Clark says. "He gets him up and dressed and in his wheelchair and gives him breakfast and gets his book bag together while I pack his lunch and then he gets him on the school bus and then I sign his paperwork and he leaves for the day."

The aide, Richard McInrow, also comes in the evenings sometimes to provide respite care. He's been helping the Clarks for several years.

"We hope to hold on to Richard as long as we can," Clark says.

But they haven't been happy with all the aides they've hired.

"The first year was kind of crazy because they would send people and it's very, very hard to find good, reliable, dependable people out there. They come and go a lot," Clark notes.

"First of all, I don't think they are trained to properly lift these patients because I would ask them, 'Didn't you get training before you had to go into somebody's house? Didn't you have enough training in this?' And they would say: 'No.'

"Periodically they will be tested on things and they give certain classes but I don't think it's in-depth enough."

        Strange Behavior

One woman, Clark says, smelled "like a sewer. My son would sit there and he wouldn't want her to brush his teeth and he wouldn't want her touching him because she smelled so bad. I said unless she does something with her personal hygiene, don't send her back."

Richard comes in daily to help Jordan get dressed and ready for school.

In another case, a male attendant was very odd in his behavior and extremely slow about getting Jordan dressed. The situation felt wrong to his mother and she asked for and received a replacement.

Jordan also has an aide at school who helps him during the day, provided through the school system.

Clark says that without the home care, her mornings would be impossible.

"I have two younger children other than Jordan. Jordan's in junior high and they are still in elementary. I would say that I would have half an hour to get my other two kids ready and walking out the door for their bus. I probably wouldn't make it to work in time every day. The last job I worked at, if you were a minute late they would write you up. The boss I have now is very good, knowing the situation and all.

"There are services out there if you just keep digging. They are not going to come knocking at your door or calling you on the phone letting you know this service is available."

        High Achiever in St. Paul

Judy Guerin, 50, is a Minnesota native and lives in St. Paul. For many years, she believed she had limb-girdle muscular dystrophy. In 1995, her diagnosis was amended to spinal muscular atrophy. She uses a motorized wheelchair and has a limited range of physical motion.

Guerin lives alone and works as an office manager for the state in the Division of Rehabilitation Services. Being part of the work force has always been very important to her. She requires assistance with bathing, dressing and other tasks in order to maintain her career.

In 1988, a change in legislation made it necessary for her to use her own earnings to pay for her home care. Ironically, if she'd chosen to quit working, her home care would have been paid for by the state.

"The system was taking $1,000 out of my pay to help pay for the aides, which left me less than $800 a month to live off of and that included rent and everything else. So out of my paycheck, I saw less than half.

"I could have lived off general assistance, SSI and everything else and not had to worry," she says. "Besides, Social Security does not consider me disabled, so every year I need to prove that I am disabled." Although Guerin has received a diagnosis of a severe neuromuscular disorder, the Social Security Administration ties its definition of "disability" to a person's inability to work. Guerin's 40-hour work week flies in the face of their definition.

"They said my brother wasn't disabled, and my brother is more disabled than I am, and he finally just gave up. He got tired of the fight." Her brother stopped working so he could have home care costs paid by the state.

Fortunately, in 1999 a legislative change corrected the situation so that she could keep working and still receive benefits to pay for her care.

        Due Recognition

Guerin's decision to keep working despite the financial disadvantage the situation imposed on her was one of the reasons she was recognized last year with MDA's 2000 Personal Achievement Award for Minnesota. The award honors outstanding individuals who are affected by the neuromuscular diseases in MDA's program.

Guerin currently has two aides, one hired through a "welfare-to-work" program. The other started right out of high school and has no training at all.

It's a tremendous challenge, she says, training the aides and hanging on to the good ones.

"It's not an easy thing to do, finding somebody to get you up at 6:15 in the morning and be around all the time. I have my aides for nine hours during the day, during which time I use them four times.

"They come back and forth four times to take care of me. They come in the morning to get me up and get me to work. One of them meets me at noon and I go to the bathroom. And then they meet me again at 4:30 when I'm finished with work. And then they come again at night to put me to bed."

Low pay, she says, is one reason why good aides move on to other jobs or become nurses.

"In my opinion, they should be paid $20 an hour. Unfortunately, they only make about $8. Who wants to work for $8.50 an hour? Not many people that I know."

        Getting Tough When Needed

Guerin learned how unpleasant it is to be robbed by someone you've hired to help you.

"I've had aides steal money out of my purse," says Guerin. "I've had them steal my credit cards. It's a royal pain."

What do you do when faced with that kind of betrayal?

"Basically you fire them, and you keep very close tabs on everything you own. Your trust toward the people is very hard. It takes a long time to build that up."

Guerin hasn't experienced verbal or physical abuse from aides, mostly, she says, because she wouldn't tolerate it. "I have an extremely sharp tongue and I can give as well as I can take. So if anybody does get abusive, they are immediately fired, at which point they are beaten with my tongue!"

She relies to a large extent on instinct when screening applicants. "You learn from experience. I can tell within the first time or two that they do me if they are going to be any good at all. Depending on how they move your arms and legs, or how careful they try to be, or how embarrassed they are. Bathing is a part of it — so how embarrassed are they going to be seeing a naked body?"

She generally finds that people who are training to go into nursing are better prepared for the challenges of the job. "They know what they're getting themselves into."

What if an aide doesn't show up?

"I have my own back-up. My brother is also disabled so my sister-in-law can take care of me. I have other friends that will come and take care of me but not on a real regular basis. If I have an attendant that is sick and the other attendant can't make it, then, yes, there are people I can fall back on."

She adds, "To train good people, you need to be very verbal. You need to tell them what you need. They are there to help you."  

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