The Family Caregiver's Manual. David Levy
or practical support and assistance for someone’s care needs.
The System is what it is and not what you want it to be. People are who they are and not who you want them to be.
Resentment can grow in a teenage girl because her younger brother is disabled because she has to spend Saturdays taking care of him and cannot go to the movies with friends, and her needs always seems to get lost in the shuffle—and she may feel guilty for feeling that way. A preteen boy can become angry and act out when he is denied the opportunity to play a sport because Mom cannot share in the after-school carpool because she has to take care of his special needs sister. A son in college can feel guilty because he is away from home and cannot help out with his disabled father, and at the same time, resent that the insurance company will not pay for home care. As an adult caregiver, you can resent family members for not seeing or appreciating you performing the thankless task of managing Uncle Ed’s incontinence, personal hygiene, and inappropriate behavior.
Family caregiving is not limited to an age, gender, or particular relationship, nor are anger, guilt, and resentment.
The challenge of providing chronic care is great enough, but when the body is unable to fend off complications the need for care increases and problem-solving solutions that worked before may cease to work. Family caregiving is a dynamic process. Situations can change in a matter of hours. Family caregiving could be described as being dropped into the middle of a foreign country with no knowledge of its language, customs, systems, or structure. Knowing little or nothing, you can barely define your own needs but must engage all of your skills to survive. You must learn to work with a system you know little about in order to care for another human being. On top of that, just when you have begun to understand what to do and how to do it, the problem or the System changes. The survival skills you developed for Problem One are rarely interchangeable for use in solving Problem Two (or Three, Four, or Five).
The prospect of facing daily, problematic sets of ever-varying circumstances with no real wisdom and guidance can cause anyone to become resentful, angry, bitter, and guilt-ridden. These emotions take a deep toll on physical health and well-being and may alienate family, friends, providers, and professionals.
The most broadly accepted family caregiving model is clinically based and depends on acute-care medicine to get people back on their feet, out the hospital door, and back home for long-term, chronic care and lifestyle maintenance (home care). Too often, the patient and the family expect that clinical solutions will resolve all the problems, and medical professionals sometimes foster unreasonable expectations about what medicine can do. However, experience teaches that family caregiving has less to do with clinical issues and more to do with practical problem solving—navigating the clinical and social services bureaucracy (the System), which has little or nothing to do with clinical care. The System is not user-friendly, operates by its own rules, and has a remarkable tendency to minimize input and observations from family caregivers.
The System gives lip service to family-focused delivery but often ignores basic nonclinical needs, such as ascertaining whether an aged stroke victim has anyone to provide care at home, if he or she is sent home on short notice. For example, Dad is a 175-pound stroke victim, and Mom weighs 103 pounds, but no one on the clinical side thinks about the practical issue of how Mom will move Dad out of the bed to the bathroom. This kind of deficiency can cause any family caregiver to feel guilt (at not anticipating such a failure) and resentment (for a System that failed so dramatically to meet the caregiver’s expectations).
To let go of resentment toward the System, you must recognize that the System was never designed for long-term care or to address nonclinical matters. To engage effective long-term care, today’s patient-focused, follow-the-reimbursement model, must change. Until it does, family caregivers are and will continue to be the backbone and front line for long-term care.
Long-term caregiving is not providing “chicken soup and a good magazine.” It is continuous short- and long-term practical problem solving done with little outside support, and its uniqueness makes the problems yours to solve as a family caregiver.
Under such stress, some family caregivers may develop mental health issues and may need individual or group therapy and a mental health professional’s help. However, neither caregiving itself nor the emotional distress associated with the caregiving process is a form of mental illness; family caregiving is difficult, but it is not a “disease.” Mental health therapy cannot address the lack of understanding of the family caregiving process by the caregiver and the inability of a patient-focused clinical system to respond. Therapists can only act on the associated symptoms.
There are solutions to the emotional stresses family caregivers experience, and both caregivers and professionals who support them can assist in providing those solutions.
1. Together we must acknowledge that because family caregivers come in every age, size, and relationship, they have unique personal issues. These issues are both of a practical nature and related to capability, family relationships, and the ability to do the job.
2. Together we must recognize family caregivers for both the job they do and the personal losses they may suffer. As reported in 2011 (June, MetLife Study of Caregiving Costs to Working Caregivers), it is estimated that over a work lifetime, an individual family caregiver can lose upwards of $450,000 due to lack of Social Security and retirement contributions, lost income, unpaid leave days, and missed promotions and salary increases. This lack of appreciation of huge personal sacrifices can build deep resentment within a family and in individuals.
Save yourself distress by keeping the following in mind:
No one can be objective in an emotional situation.