The Exceptional Parent, August 2001 v31 i8 p38(2)

For a little over six years, I have been a paid caregiver. It was not a career that I was particularly prepared for or one that I sought out, but rather one of those rare, pleasant twists of fate that brought me where I didn't know I needed to be. I work for a nonprofit agency that serves adults and children who have mental retardation. Many of them have physical disabilities as well, from mild to severe. The individuals we work with represent every extreme of developmental disabilities. They are all unique, and they are all very special people. Some are sweet and charming and easy to know, others are more challenging to befriend. Some individuals seek you out, while others hide in a shell we may never be able to coax them from. The most important thing I have learned is that they are all people, they all deserve respect, they all have value, and they are all worth knowing. My life has been permanently changed for the better.

When I tell people where I work they inevitably tell me I must be "very special" or other words that suggest I am some sort of "societal saint" to do such difficult work. Nothing could be further from the truth. I am a regular person--I hope a good one--but no one extraordinary. I get much more than I will ever be able to give. Working with such people as I do opens your eyes and puts things into proper perspective. You begin to be grateful for the small pleasures in life, the tiniest accomplishment, not only for them, but also in your own life. There are many frustrations but there is so much more joy: I am not a Pollyanna. I fuss and moan with the best of them at times, but it is always short-lived. I am where I am because I love it. I cannot be anywhere else.

I started as a direct care worker on third shift in a large (12 beds) group home. For several years I was the house manager of an eight-bed group home. Now I have moved to administration. My current task is to help people move from larger homes into smaller supported-living homes. I am responsible for training others to provide direct care. I tell them it will be the hardest part of their job and the best part. If the right attitude is there you can teach anyone to do whatever is necessary to support an individual. What you can't teach are compassion and patience, the two most essential qualities in direct care staff. As many parents know, it is very difficult to try to choose someone to care for your loved one. I wish there were a test for patience or a reliable way to judge someone's attitude, but there isn't. So we do the next best, logical thing--check references, talk and train, and pray for the best. Too often our first choice isn't a good fit, so we start over.

I believe that staff turnover is probably the biggest deterrent to optimal care. "We don't have enough staff" is a weak excuse when a surveyor or parent wants to know why last year's programs and plan still haven't been implemented, but often it's the real reason. Nobody, least of all the clients, benefits from constantly changing staff. Time and dollars are spent over and over again to train people who won't stay long enough to make a difference. People who already face too many challenges have to adjust one more time to another new face and are labeled "difficult" when they act out in frustration. I'm frustrated, too.

I have been impressed lately by the parents of one of the young ladies I serve. We are in the process of opening a new supported living home for her and another young lady. These homes are purchased or rented in the general community and as you might imagine, they often need a lot of accessibility modifications to be functional for many individuals. These two ladies both use wheelchairs and require 24-hour awake staff. A mechanical lift is used to transfer them from bed to chair or bath or wherever else they need to go. Even though they are both very sweet, good-natured people, it can be a challenge to care for them. The father of one of the ladies went out of his way to think of ways to make things easier for the home's staff. He made sure the bathtubs were raised to a level where caregivers didn't have to stoop. When the state didn't want to approve the money for the type of lift that would make lifting the girls into the tub possible, he argued successfully for the better lift. He has always helped care for his daughter and knows how hard it is to stoop and be on your knees night after night. What he's helping to provide isn't just an easier job for a caregiver, but a better quality of care for his daughter. Caregivers who aren't stressed (or in pain!) take their time and do a more thorough job. Less stress for caregivers contributes to less turnover and that translates to improved continuity of care and a better life for those we are trying to help.

Being a caregiver, paid or family, is a much-undervalued position in society. We all need to work together to change that. The first step is to appreciate and value one another. Think of what was/is hard for you and try to make it better for the next person. By continually striving to lessen the stress of caring for another human being, we can make life better for ourselves, other caregivers and, most important, for the individuals we most want to help. Many times people think that more money is the answer, and certainly that is part of what constitutes value in this society (we also have families to support), but respect from parents and professionals would go a long way as well. Many caregivers are intimidated by the very professionals who are there to help us. This should be the easy part to fix. All we have to do is stop and listen to each other.

Patti Wade is a Direct Support Professional at the Orange Grove Center, Chattanooga, TN.

Full Text: COPYRIGHT 2001 PSY-ED Corporation