Caretaker or Care Taker?
One common, compound word: caretaker. By definition, it means someone who maintains something (a building, an estate, a person). Albeit maintaining is crucial to the welfare of the building, estate or person, maintaining does not automatically include improving, enhancing, or giving care. Over the years, I have learned that someone can be a caretaker without being someone who takes care, a caretaker.
The relationship dynamics between caretaker and the disabled person have been examined in books and movies over the years. Usually, in order to sharpen and create tension, the writer will develop stereotypical characters. Two examples are: (1) an over-the-top thriller movie, “What Ever Happened to Baby Jane,” which highlights the wheelchair-bound individual’s dependency on another. In the case of this movie, an unstable caretaker; and (2) a more realistic example is “You’re Not You,” which illustrates how a caretaker can augment the life of another. Even though both movies are stereotypical, I recommend both for they clearly demonstrate the powerful role that a caretaker plays in the life of a disabled person.
When I first had the opportunity to bring a professional caretaker into my home, it was an unsettling process. In addition to having a stranger in my home with access to everything, they were independent people who made decisions for me without consulting me. Where I live, many of the agencies that provide home health care carefully screen potential caretakers for criminal backgrounds, but they do not screen them for the attributes that make a good caretaker. The soft side of the individual is ignored (caretaker and client). Consequently, I have had to contend with all sorts of people, from the angry to the apathetic. My current agency not only carefully screens the background of their applicants, but they spend time training them to care. Through my personal experiences, I have learned that it takes a special person to be a
Through my personal experiences, I have learned that it takes a special person to be a caretaker. Below, I discuss what I would consider are seven essential attributes.
Sacrificial
Above everything, an excellent caretaker is someone who puts the needs of the disabled person first. When I was 30 years old, my husband was diagnosed with cancer. As his health declined, my role as wife and mother diminished as my role as caretaker intensified. At first, he only needed me to drive him to his appointments. In the later stages, he was bedridden. Nothing mattered more than his comfort and needs. My world was his world. As the physical demands became greater, so did his need for emotional support. Although I wanted to take time for me, I knew that my sacrifice paled in comparison to his suffering.
My role as caretaker was shortlived. Some caretakers have no end in sight. Their role seems endless and their needs have to be met. If the caretaker is a professional, they can get their rest and relaxation at the end of their shift. However, if the caretaker is a family member that lives with the disabled individual, then they have to learn how to take time for themselves. A bedraggled caretaker cannot provide the needed care. Boundaries need to be articulated and established. Making time for rest and relaxation is crucial for a healthy relationship.
That being said, sacrifice is necessary. The caretaker has a role: to take care of someone. Remember, the one who is receiving the care would love to be able to do things for themselves. There is nothing more discouraging than to feel as if you are a burden. The emotional status of the chronically ill is delicate and to feel as if you are a burden is equivalent to feeling unloved and unwanted.
Compassion
We all thrive in a positive environment. Treating the disabled with kindness, respect, and empathy goes a long way in making their life more tolerable. The disabled have frustration (and some have anger) at the way their lives have evolved. Consequently, more than ever, a tender hand and a kind heart are imperative.
Recently, while at the hair salon, I watched a caretaker assist a frail, elderly lady transfer from her wheelchair to a hair washing sink. The caretaker failed to stand close enough to the lady, did not use appropriate techniques to assist the lady in standing, and almost dropped her in the process. Observing the caretaker’s face, I could see the look of someone who was not engaged. She rolled her eyes and frowned the whole time. The lack of compassion was evident.
Reliable
In every career, reliability is a basic standard of performance. When one person is dependent on another, reliability is paramount. Last year, I had a caretaker who would fail to show up for work. She just took random days off. This left me with no food and no one in my house with me. The agency would then have to scramble to find someone to fill in. Many times, it would be 1 p.m. before someone came to give me breakfast. My caretaker could not (or would not) understand that a late night partying was not substantially good behavior (or reason to call off) for a caregiver. Even though I liked her, she knew that failing to show up for work would leave me without food and care. This woman did not have an essential attribute for her position.
Adaptable
Often times, we have our own ways of doing things. I happen to like clean kitchen counters, my clothes organized in my closet, and my food prepared a certain way. Even though it might appear to be arbitrary decisions, I have reasons. Clean kitchen counters translate into less likelihood of food contamination; an organized closet makes it easier for me to pick out clothes; and, I am committed to eating healthier food.
Doing the above tasks the way I prefer them to be completed makes my life easier. Both my husband and my professional caretaker have adjusted their styles to assist me. They are conscious of how their flexibility helps make my life more enjoyable. In fact, when they help me get dressed, I can tell them exactly where to look for a particular item of clothing (for example). This attribute of adaptability is pivotal as they adjust their behavior and become an extension of me. Through them, I can accomplish some fundamental tasks.
Agreeable
You might think that agreeable could be included in the above category, “Adaptable.” However, there is a distinction would mentioning. While someone might adapt their behavior to another’s way of doing things, performing it with a smile makes the whole process less stressful. I am sure that you have experienced times when someone has been patient with you. It is a gift. The relationship is deepened and strengthened just by having an agreeable companion. The journey’s burden is lightened.
Confidential
Knowing that you are in control of your information and your life helps to maintain a sense of well-being. From the unimportant minutiae (how I like my clothes folded) to the important details (what medicines I am taking), they all a part of me. They are my being, my personhood. When someone violates confidentiality, they are violating boundaries. Two years ago, I heard the news about a disabled woman’s murder. It turned out that the woman had a caretaker. The caretaker had a boyfriend. The boyfriend was told about the medical condition, habits, and items in the home. The result: the boyfriend broke into the disabled woman’s home, killed her, and robbed the home of money and items.
Teachable
Being open to learning a new or different way of performing tasks is a valuable asset for life in general. When it comes to being an extension of another person, being teachable is essential for the caretaker. Learning how to assist the disabled person gives the disabled a sense of accomplishment.
One recent caretaker made fabulous meals for me. When she first started, she had some knowledge about healthier food choices. Over the year, she learned about scallions, shallots, white onions vs. Vidalia onions, portobello and chanterelle mushrooms, spices, seasonings, salmon, tuna, grapeseed oil, parmesan and asiago cheese, serrano peppers, quinoa, brown rice, and how to make homemade chai nuts, granola, guacamole, pico de gallo, and mango salsa. Actually, the list could be longer. My point is that learning how to be the arms of another, while letting the disabled still have whatever control remains, is life affirming to the individual receiving care.
Faith
When facing difficult situations, any individual with a strong belief usually finds a way to persevere. For a caretaker, their faith gives them the added benefit of a sense of purpose. I have known caretakers whose only motivation was to get a paycheck at the end of the week. While this is an undeniable motivator for most people, it can leave the caretaker feeling uninspired. Over the past four years, I have worked with caretakers who did not believe in anything. The odd discovery of working with them was that most were often angry and erratic. However, the caretakers with faith believed that they were serving an important role. And, I can tell you, they do serve an important role!
One Final Word
Caretakers who are caretakers are caregivers. They promote and support the intangible needs of the disabled. Speaking for the disabled, “Thank you.”
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In addition to MDA’s dedication to funding research and providing multidisciplinary clinical care, we are also passionate and committed advocates for the families we serve. Together, we advocate for increased federal funding for biomedical research; for access to clinical care, support services and equipment; and for policies and programs that help ensure access to the resources and services necessary to maximize independence and pursue a life without limits—which includes accessible air travel. The ability to access air travel impacts many aspects of life—from the kind of job you can have, to where you can live, to whether you can access a provider or participate in a clinical trial that is far away from home.
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