The Caregiving Trap Caregiver Burden
By Pamela D. Wilson, CSA, MS, BS/BA, CG
Caregiver burden represents the emotional, physical, and financial aspects and responsibilities of providing care and support for an ailing family member. This is a subject rarely discussed because most caregivers would be embarrassed to show feelings of exhaustion, frustration, or anxiety; believing that caregiving is something that one is obligated to do for a loved one. The idea of the caregiving trap is also controversial, especially among caregivers who are filled with guilt. What “good” caregiver would ever admit feeling trapped by caregiving for a loved one?
Many caregivers and care receivers—if they are honest– admit to feeling trapped. Caregivers are trapped by real-life example that include meal preparation, medication reminding, bathing, dressing, housekeeping, grocery shopping, changing bed linens, laundry, maintaining the household, sorting mail, paying bills—the list of caregiving tasks is endless. For a short period of time providing a great amount of care is sustainable. For longer periods, realistic discussions and plans are necessary in order for caregivers to maintain physical and psychological well-being.
Care receivers also feel trapped by the idea of needing care. Many do not wish to burden family but have no other choice especially when finances cannot support the private payment of care, whether at home or in a care community. Caregiver burden extends to both sides of caregiving.
In situations of crises, when there are limited options, parents readily accept help and support from children. Many adult children begin by committing small amounts of time and quickly realize that any free time that existed has disappeared and been replaced with a long list of projects for parents. Parents experience no significant changes in their lives except that their lives are easier and more comfortable; projects and activities they were previously unable to complete are finally being accomplished by helpful adult children.
What a relief that groceries are in the refrigerator, the house is clean, bills are paid, and medications are placed in daily reminder boxes. The lawn is mowed, and snow is shoveled. Life could not be better for parents who exert minimal effort to manage their daily lives. Having the help of adult children in caregiving situations is like receiving assisted living support without leaving home, and better yet, the help is free. This situation represents the caregiving trap.
Adult children who allow their lives to become unbalanced in favor of nonstop caregiving activity rarely stop until experiencing some sort of physical or emotional breakdown. It is easy for caregivers to become over involved. Most important is to find balance between becoming over involved or detached, as these extremes result in the dysfunctional relationships experienced in many caregiving families.
Important if you are a caregiver is to listen and to hear the concerns of others regarding your well-being. Many caregivers are trapped in a self-created situation of providing care and later realize that this arrangement cannot continue, yet the caregiver has no idea how to change the situation without conflict or disagreement, so the caregiver delays and delays and delays having a conversation with a parent. Not until the role of caregiving has become physically and emotionally draining, when family relationships are suffering, when projects at work are uncompleted and supervisors are commenting about poor job performance do caregivers realize that change is not optional but mandatory. A discussion must occur.
How many of us find ourselves in this situation of being trapped but in other parts of our lives. We believe that we want something—a new house, a new job, stuff—and then feel trapped by the financial support required to maintain or fund the stuff. Traps are common in life. Looking in from the outside, the solutions are easy. Stop or change aspects of life that are creating the trap. From the inside we feel frozen, stuck, or immobilized because our brains fail to see a way out of the trap that we created for ourselves. Fear of changing the dynamic results in this great unknown. Interestingly, the same unknown faced by the care recipient who also resists any type of change in the caregiving situation.
Caregivers attempt to discuss the situation with loved ones through vague mentions of concern, hoping that parents will intuitively pick up on stated concerns; they do not. One day out of frustration, the caregiver’s mouth engages before the brain and words are said that cannot be retracted. The parent responds with a verbal volcanic eruption, expressing a lack of appreciation for all that has been done, and turns the tables by saying, “I don’t need your help. I’m fine living here by myself. I’ll take care of myself.” The caregiver feels rejected, angry and unappreciated.
Parallels exist in our approach to managing daily life as well as the responsibilities of caregiving situations. Challenges become a matter of perspective and attitude, often becoming overwhelming to caregivers who experience high levels of stress but have no idea how to resolve the situation. Surprising to caregivers is that care recipients experience the same range of emotions.
Caregiving is a revolving door where those involved become disgruntled with aspects of providing care because of repeated yet failed attempts to change unfavorable aspects: for example, an inability to receive appropriate treatment from a physician who seems never to listen to concerns or receipt of denial letters from an insurance company refusing to approve a long-term care insurance claim in spite of multiple requests for documented information.
These are events frequently experienced by over involved or frustrated caregivers whose behaviors or lack of detailed follow- through make situations more challenging because of a loss of objectivity and patience. Stubbornness and a lack of introspection occur on the part of the caregiver, resulting in an inability to see that the caregiver’s own actions may be contributing to problems.
How does one avoid the burdens of the caregiving trap by achieving middle ground and the right balance? One suggestion is to gain awareness of the tug-of-war of emotions that occurs between the caregiver and the care recipient. This insight may provide a better understanding of the aspects common to aging not yet experienced by caregivers who are able and healthy.
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Pamela D. Wilson, MS, BS/BA, CG, CSA, Certified Senior Advisor specializes in working with family and professional caregivers to navigate healthcare and aging concerns. Wilson, an expert in the field of caregiving, has personally helped thousands of family and professional caregivers since 2000 in her career as an advocate, a care navigator, and an educator. Through her company, The Care Navigator, she is an advocate and service provider in the roles of guardian, power of attorney, care manager, and transition specialist. She was producer and host of The Caring Generation®, from 2009 to 2011, an educational radio program for caregivers on 630 KHOW-AM. In addition to her work at the Care Navigator, Pamela gives back to the community by serving as chairperson of the Community Ethics Committee in Denver, Colorado.
Her new book, The Caregiving Trap: Solutions for Life’s Unexpected Changes, is available through all major bookstores as well as on PamelaDWilson.com. You can find her on YouTube, Facebook, Twitter, and Linked In.