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You have a picture of the “Ideal You,” an image of what you should be, that incorporates all your values and perceptions and represents how you relate to yourself and others. Guilt arises when the day-to-day choices the “Real You” has to make, and the choices the “Ideal You” would make do not match. As a family caregiver you have to learn that you are not Mother Teresa and Florence Nightingale. There is no perfect caregiving solution, and “OK” is always good enough! You are not the first caregiver and you certainly will not be the last, and not one family caregiver has been, is, or ever will be perfect. So, do not beat yourself up for not being a perfect caregiver.
Note: A parent caring for a special needs child with a chronic or terminal illness has a special kind of guilt associated with the child being denied a “normal” childhood and the parent not being able to be a “normal” parent. This feeling of guilt is made more intense by the slowly growing realization that a lifetime of family caregiving may lie ahead.
Resentment is beating yourself up for what other people did or did not do. Resentment is a lasting, corrosive emotion that leads to feelings of deep and bitter anger or ill will, resulting from real or imagined wrongs. Feeling resentment is a case where “You swallow poison and hope the other person dies.”
Do not beat yourself up for not being a perfect caregiver.
Resentment comes from unmanaged expectations, that is, when there is a lack of understanding of what may or can happen or promises are made about outcomes that are not met. When treatment or care for Mom does not meet your expectations, resentment can build and become focused anywhere—on hospitals, nurses, home health aides, doctors, insurers, family members, neighbors, or any organization or person who did not do the “more” that would have made Mom’s outcome better. Resentment mounts quickly when your social life, friends, and acquaintances dwindle in the face of the demands of long-term caregiving.
Anger comes from being mad at the System for being so confusing; being mad at friends and neighbors for not understanding what you are going through; and being mad at yourself for not doing “better” when you have no idea what is expected of you. Anger, like resentment, can eat away at your quality of life, well-being, and sanity to the point where the stress it creates is detrimental to your health.
The targets of resentment rarely know about it or couldn’t care less. 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 builds when the System and people fail to meet your expectations. Allowed to fester, resentment can distort any situation’s reality. Resentment is tough, and lonely!
You are the only player in the game and you cannot win.
Guilt and resentment are self-inflicted and are prevalent in family caregiving. For some insight, consider how professionals define family caregiver: Anyone providing or responsible for unpaid emotional, physical, 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
