Is Your PCA Driving You Crazy?

How to avoid a bumpy ride with your care assistant

Personal care attendants, personal assistants, attendant caregivers: Whatever you want to call them, we all know how important they are to our independence. Depending on somebody isn’t easy. Here are some ways to make the road smoother.

Communication is key

For the relationship to be successful, both the personal care attendant (PCA) and the consumer need to understand their roles and what’s expected of them. When there’s miscommunication, trouble often follows.

Laurie Williams, 40, lives with her full-time PCA, Salonda Hawkins, in Fort Wayne, Ind. Williams, who has congenital muscular dystrophy, uses a power wheelchair and has a tracheostomy and ventilator.

When Hawkins, 24, began working for her, Williams gave her a list of duties, including helping her go to bed at 10 p.m. But Williams forgot to specify that she wanted to stay up later on Friday nights. She found out that it doesn’t pay to be vague.

“We conflicted on that because she felt that she should get off at 10 p.m. and I felt I should be able to stay up until 11 p.m.,” says Williams, MDA’s 2006 Personal Achievement Award recipient for Indiana.

They talked it over and decided to compromise. Williams now goes to bed at 10:30 p.m. on Fridays. She learned a valuable lesson:
“It would have been a lot more helpful if I had specified ahead of time exactly what I wanted.”

Put everything in writing as soon as possible, says Norma Vescovo, executive director of the Independent Living Center of Southern California in Van Nuys. This allows you both to read and sign the same agreement, thereby avoiding conflict.

Who’s the boss?

The consumer/PCA relationship should be a business relationship, Vescovo says. Don’t forget that you’re the employer, and your PCA is working for you.

Getting too close to your PCA is a common mistake that creates many problems. Be friendly but not “too friendly,” warns Vescovo, or you could lose the perspective of being the employer. When that happens, your PCA may start taking advantage of you.

Elizabeth Persaud of Alpharetta, Ga., recognizes that her relationship with one of her PCAs became too close due to her own misjudgment.

The problem began when their relationship became more personal and her PCA asked to borrow money. Without thinking that this might become a habit, Persaud, 28, who has type 2 spinal muscular atrophy, loaned her PCA the money because she considered her a good friend. Then her PCA asked to borrow money again.

The solution: They had a discussion about their roles in the relationship, and things improved immediately. Persaud also realized that she needed to change the way she interacted with her PCA.

“Now I’m more professional with her than I was before,” Persaud says. “In a sense it was kind of a learning experience for both of us.”

To maintain a business relationship with your PCA, Vescovo says it’s best to be the boss from the very beginning. If you’re not, you’ll have to work on your communication with your PCA.

Vescovo advises, “Say to them, ‘This has been happening. I realize that I have slipped and allowed this to happen, but this is what I want to change it to, and I think that it’s gonna work out much better.’”

Take your head out of the sand

If you’re not happy with your PCA’s behavior, ignoring the situation won’t make it go away.

Instead, face the problem, challenge it and move on, Vescovo advises. Don’t forget that you’re in control of your own life.

“Having an attendant doesn’t mean you’ve given up all authority to someone else; you just need [your PCA] to do a few things for you,” she says.

When Andrew Feuerstein of Miami discovered his part-time PCA was using drugs in his house, he made the mistake of ignoring the problem.

“I didn’t bring it up to him at first, because I’d found in the past, it’s hard to find people to help you and you don’t want to be in a position where you don’t have anybody,” says Feuerstein, who has Duchenne muscular dystrophy and uses a power wheelchair.

But Feuerstein, 31, began noticing the effects of the PCA’s drug use: loud, rude and obnoxious behavior.

For example, the PCA would treat Feuerstein as though he was a constant bother, refusing to complete simple but vital caregiving tasks. When Feuerstein asked his PCA to perform ordinary duties, the aide would repeatedly accuse him of playing games and threaten to leave.

After several months, Feuerstein felt able to fire the part-time aide because his full-time PCA offered to fill in until Feuerstein found a new helper.

“Looking back, [not firing the PCA immediately] might have been the wrong approach to take because it could have gotten me in trouble, especially considering the fact that I’m an attorney,” says Feuerstein, who has his own law firm, Feuerstein & Associates. “Eventually I realized it was in my best interest to find a replacement and to no longer accept the situation.”

He recommends always having a backup PCA. That would have saved him a lot of time, energy and worry. He’s also learned to do background checks on potential assistants.

Be careful whom you trust

Feuerstein feels comfortable asking his full-time PCA, Ramon Wallace, to take money out of his bank account for him because Wallace, 38, has proved over his two years of employment that he’s trustworthy. But Feuerstein has learned to be cautious.

“I’ve probably had 30-plus people help me in 12 years, and I’d say of that, maybe three or four ever got to the point where I trusted them enough to give them my ATM card,” says Feuerstein, who also owns Premier Financial Group, a mortgage broker business.

Before the drug user, Feuerstein had a part-time helper who stole from him.

“I had some cash in my home, but I had it hidden away,” he says. “If you live alone and have people help you, don’t leave cash around.

“You do have to alter your lifestyle slightly with how you do things when working with a PCA because, like it or not, there will be somebody else involved in your business.”

Breaking up is hard to do

Sometimes problems can’t be solved, and you just have to put your foot down, Vescovo says.

In his book Caregivers and Personal Assistants (Saratoga Access Publications, 2002), Alfred H. DeGraff suggests writing down what’s not working with your PCA and being logical about the decision to fire him or her.

“Saying, ‘I just hate his guts’ is not a good reason,” recalls Williams, who read DeGraff’s book. “I think if you feel that the person is threatening your ability to live your life the way you want, then it’s probably time to find somebody else.”

Elizabeth Persaud, who lives at home with her parents and sister, has had a few recurring problems with caregivers.

One PCA was supposed to wake up Persaud after her family had left for the day, and get her ready for work. But some mornings the PCA would come in and fall asleep on the futon instead. Another was repeatedly talking on her cell phone, leaving Persaud naked and freezing in the shower.

When these incidents happened, Persaud’s schedule was thrown off, making her late for activities or her job at Tools for Life, an Atlanta-based agency that provides assistive technology.

In both cases, Persaud explained her situation and told the aides how their actions had a domino effect. At the time, both PCAs had seemed to understand, but they quickly returned to the annoying behaviors, which happened again and again.

“I’ve gotten to the point where I go by my ‘three-strikes-you’re-out’ rule,” says Persaud, who was MDA’s 2005 Personal Achievement Award recipient for Georgia.

The two PCAs were let go on the third strike.

Live and learn

Now in the process of hiring a new team, Persaud is applying what she’s learned from her unpleasant experiences to the management of her new assistants.

“I’m just gonna lay down the law and lay down all the details,” she says. “I’ll be as detailed as possible, let them know that I’m into communicating and that they should be as well.

“I’ll give them examples. ‘Hey, I did have somebody come in that used their cell phone and this is what happened and this is why.’ This is the domino effect that people don’t think about.”

If you’re having an issue with your PCA, contact your local independent living center for more tips on resolving the problem. By facing the issues head-on, you show your PCA that you’re strong, intelligent and deserve to be treated with respect.

Also see "Where are All the PCAs?" and "My Favorite PCA."