A Day in the Life

By Judith Forward

Every morning at 5:30 I reach over and turn off my alarm clock. There have been many times when I have wanted to press the snooze button and go back to sleep, if only for five more minutes. However, if I did not keep to my schedule, I know that I would not only set back my own day, but also the days of several other people. Being an Outreach attendant with the Ontario March of Dimes, I make it a priority to live up to the organization’s goal: to assist adults with physical disabilities to lead independent, meaningful lives.

The development of the Ontario March of Dimes Outreach Attendant Services Program was a direct response to the expanded emphasis on home care and the demand for integrated living for persons with sustained or periodic disabilities. The program provides non-medical service to adults with physical disabilities who wish to live independently. An Outreach attendant assists people to live with dignity, and as independently as they choose, by providing service with activities of daily living, in the privacy of their home. We aim to keep the hands-on caregiving to a minimum by assisting them to maximize their involvement in their own personal care.

Once I’m awake and ready to head out the door, I quickly organize my thoughts to the day ahead of me. I may know from the previous day what tasks must be accomplished. But, most importantly, my thoughts turn to the consumers who are waiting for their days to begin. I have committed myself to maintain their quality of life so that they may continue to participate actively in the community.

Our consumers are involved in leisure and volunteer activities of choice, hold down regular employment, or attend post-secondary education. But how can any of these activities be achieved if they are unable to accomplish a simple task most people take for granted, such as getting out of bed in the morning? My response is: teamwork -- which includes the consumer, attendant and program coordinator.

A normal day is hardly ever without a crisis of some kind. It could be that a consumer is not having a good day because of pain, or a personal matter that is getting him or her down. There may be a snowstorm or a traffic jam that keeps me from arriving on time. Whatever the reason, my daily routine can be slowed down. Because of my tight schedule, I can only try to do the best in the time available to ease the situation. But I realize the key to an effective partnership is acknowledging that "you cannot fix it all."

There have been many days when my consumers were troubled and would have wished me to carry on the routine without their involvement. But I like the old saying, "Mind over matter." Their burden may be immense, but sometimes all it takes is five minutes and a cup of coffee to put a smile on someone’s face. Other days, someone may be negative about everything possible and all I can do is offer a sympathetic ear. I have found it effective at the end of such a routine to ask the person what he or she has found positive in his day, rather than dwell on the negative aspects. My solution, to avoid burnout, is not to take everyone’s problems personally. Sometimes, I may be frustrated that I was unable to solve the world’s problems, but if I can assist in making a better day for at least one of my consumers, then I have personally succeeded, and that in itself is my reward.

Each attendant is hired for interpersonal skills and willingness to provide quality care. The coordinator’s role is to select staff to ensure compatibility between consumers and their attendants, to enhance a friendly yet professional relationship.

In my experience, it is not always the larger issues that will ensure compatibility. It is most often the little things such as a daily routine that build a satisfactory consumer/attendant relationship. An attendant may spend several hours a day with an individual, seven days a week, and a camaraderie is bound to develop that goes beyond words.

Several days a week, I assist a certain gentleman with his evening routine. Usually he is sitting in one of three areas of his home. On one particular evening, he was in a different place and seemed preoccupied. Instinctively I knew there was a disturbance. Sure enough, we both glanced up to the ceiling and there it was -- a spider. It was a relief to know that there was nothing more serious and we both got a chuckle. He had been sitting there for more than half an hour, watching the progress of the spider. To many people, this may seem trivial, but to this gentleman the out-of-reach spider was an annoyance. I could sense his frustration. He had made several futile attempts to eliminate it with a flyswatter, but the spider had made its way to the ceiling. Without an exchange of words and with a swish of the broom, down came the spider to meet its doom. And the evening continued without further incident.

The essence of the Outreach Program’s success is both verbal and non-verbal communication and the personal involvement of the consumer. We aim to maximize the independence of each consumer by responding to his or her personal needs and goals, and by insisting on the active self-direction of his or her own care. Even though an identical routine is followed daily, I will ask the familiar question, "What is next on the agenda?" Each consumer is involved in designing a plan for his or her care and is actively encouraged to ensure that quality of life is not compromised.

From early morning to late evening, my personal schedule often revolves around my work schedule. A consumer may have requested to be up at the crack of dawn, and may wish to retire as late as possible. I strive to make myself available to fulfil each request. Everyone’s schedule is different and I attempt to accommodate all routines. I believe I am making a difference between their having dignity and having none, and, I hope, a satisfying life without institutionalization, and a positive sense of their future.

The Ontario March of Dimes insists that the attendants in its employ are committed to the philosophy of independent living. This organization is a leader in providing training to the Outreach attendants, who are already dedicated personal-care providers. In addition to standard CPR and first-aid certification, we are provided with continuous training. Monthly staff meetings are organized around education and awareness of consumer concerns. Topics such as multiple sclerosis, post-polio syndrome, spinal cord injury, back care and even fire safety are covered.

There is also a partnership between the attendants and professional community service providers, such as physiotherapists, occupational therapists and visiting nurses, to encourage a flexible response to the needs of each consumer. Under the direction of the consumer, and after a specialized training program, an attendant may provide essential procedures that go beyond an activity of daily living, such as catheterization, or perhaps an exercise regime. This allows for a whole routine to be completed by one individual within a time schedule suited to the lifestyle of the consumer. Each training session is documented and continuously monitored and evaluated by the servicing agency through the Outreach Program coordinator but also, most importantly, by the consumer.

People with disabilities can and will overcome obstacles that have kept them from being participating members of society. The commitment of the Ontario March of Dimes is to promote a good quality of life in which others do not see the disability first. They see the individual and the personality. It is a pleasure to be an active part in helping to realize this commitment.

(Judith Forward is an Outreach Support Service Attendant in the Niagara Region.)

(This article was brought to you by the Ontario March of Dimes)