View From a Wheelchair: Caretaker Burnout

Caretaker-Burnout

She stood there glaring me and then burst into tears. Sobbing, she said, “I just can’t take it anymore! I feel guilty and angry all the time. I don’t know what to do.”

Caretakers. How often do we fail to recognize the demands on their time and energy? Whether they are family members or professionals, the stressors they face are so constant that caregivers are in danger of “burn out.” First, they start feeling irritated, then frustrated, which leads to anger. Eventually, they are depressed. Sadly, they might not know what has happened to them. How can we help?

Standing in the gap, the caregiver has two roles: they assist with activities of daily living, and they are ambassadors for the disabled. Without any prompting on their part, the world will automatically engage with them in our stead. For example, yesterday, I went to Target with my caretaker. As I rolled up to the counter, I looked straight at the cashier. Ignoring me, she addressed my caretaker. I did not exist to her. My caretaker’s presence is acknowledged, and, often, I am not. This reaction from the public not only puts the disabled person in an awkward position, but it also can be disquieting for the caretaker.  How should they respond when their companion is ignored? Should they respond? Is it their role to respond?

The role of the caretaker can be confusing. One minute they are functioning as the helper, the next minute they are functioning as themselves. Imagine the stress involved in having to live two lives at once. Their time is not their own. (If you are a parent, I am sure you can relate to the fatigue, frustration, depression, or anger that can set in as a result of the stress.) Burnout is a constant peril for the caregiver.

Recently, I posted a blog about the attributes of a good caretaker (The Essential Attitudes of a Caretaker). Now, I would like to examine what healthy attitudes we, the disabled, should have about our caretakers. How can we help them?

Below is a list of the stressors that are part of the daily life of a caregiver:

  • Tasking Expectations: Often, establishing appropriate expectations for what can, should, or needs to be accomplished is overlooked or ignored.
    • One way we can help is by asking ourselves if our behavior is reasonable or if our requests are suitable. For example, recently, I ran out of homemade granola and homemade spiced nuts at the same time. Because we did not have enough ingredients to make both recipes, we went grocery shopping.  By the time we returned to the house, it was mid-afternoon. Even though I wanted to have my homemade granola for breakfast the next morning, I put aside my desire and asked myself if I were making a reasonable request. Immediately, I knew I was not.  There were other tasks, such as dinner, that needed to be accomplished that day. Therefore, I asked my caretaker if she would prefer putting off making the recipes until another day. She did. Reducing her stress is as important as keeping my stress level low.
  • Crossing Boundaries: The caretaker’s role, by its very nature, creates intimacy. However, boundaries need to be respected and enforced to be kept healthy.
    • Everyone has a right to privacy and a right to hold their own opinion.  The professional caretaker and the disabled person might form so close a bond that they infringe on each other’s personal matters.
    • If the caretaker is a family member, red flags should be everywhere.  Knowing when to back off is as important as knowing when to intervene.   Keep in mind that respect and gratitude are essential for a healthy relationship.
  • Unrealistic Goals: Expecting a particular outcome that is contrary to objective facts can lead to frustration. Watching for signs of unrealistic goals and talking about them will help.
    • Because the disabled views life through tinted glasses, they can hold unrealistic goals for themselves. They might have too high (or too low) of an expectation of what they can or should accomplish. When the caretaker confronts the sick or disabled with a contrary goal, friction is likely.
    • In addition, many caregivers believe that they can change the physical or emotional life of the disabled. While this may be true to a certain extent, the health and well-being of the sick and disabled will be determined by other factors.
  • Loss of Control: Both caregiver and the disabled will experience a loss of control.  Recognizing that there is frustration on both sides may not prevent the clashes, but, maybe, it will reduce the severity or frequency. Remember, if your caregiver is your spouse or child, they have lost their old lives, too.
    • The sick and disabled have lost a certain amount of control over their lives. Depending on the severity of the situation, the disadvantages can be severe.
    • For the caregiver, they may want to exert control where they have none. The irritation at having to subdue their drive can increase over time. The clash between caregiver and client will erupt eventually.

With increasing burden, lack of control, unrealistic goals, and the frustration, anger, and irritation, a caretaker’s ability to cope will eventually wear thin, and they will no longer be able to function effectively. Hopefully, the needs of the caretaker will be recognized as cogently as the needs of the sick and disabled. We need to take care of our caretaker.

Caregiver Burnout Quiz: https://www.caring.com/articles/caregiver-burnout-quiz

Published by

Rose Wolfe (Living Free with disAbilities)

Let's get to the elephant first: I have myotonic dystrophy which defines my physical limitations, but it does not define me. Without the distraction of physical activities, I have found my passions: (1) Encouraging others to live more fully with fun, faith, and hope; (2) finding freedom in oil painting; (3) writing about my experiences; and (4) encouraging others to live more passionately. It is my belief that every person lives with at least one disability - for impairments are not limited to those with chronic illnesses. Many neurotypical people are psychological architects who have constructed enclosures in which they trap themselves. Mindsets, attitudes, and perceptions are fluid realities. Many of us have forgotten that it is possible how to live beyond our disabilities. Life may have challenges but faith and hope are within reach. I have made my choice: I am LivingFreeWithdisAbilities.

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