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:
Remember that no one can be objective in an emotional situation. Emotion clouds the issues, resulting in confusion and frustration that the family caregiver then internalizes, giving rise to increasing levels of guilt, anger, and resentment. As a family caregiver, learn to acknowledge your emotions and how they affect your thoughts and actions.
No one can be objective in an emotional situation.
Accept that as a family caregiver, you need help and support. Asking family members to help with simple things may stop you from feeling overwhelmed and lessen your feelings of anger, guilt, and resentment.
Maintain a sense of balance. Keep your social contacts, even if you just meet a friend for lunch or a movie; regular social contact is critical for your own mental health and well-being. No excuses: Having a friend, family member, or paid caregiver stay with Mom for a few hours is perfectly acceptable and necessary.
Don’t confuse your personal self with your family caregiver role. Being a caregiver is not who you are; it is what you do.
Live life and care for yourself physically and emotionally. You also need to create or maintain the emotional, social, and economic wherewithal to sustain yourself across the spectrum of personal aging and your own long-term care issues.
Access real family caregiver support. In a family caregiver support group, as opposed to an educational group, you will learn about clinical needs that have to be met, but more importantly you will find practical support leading to a clearer understanding of nonclinical issues and how to be a better practical problem solver. Remember: 85 percent of all family caregiving is nonclinical. Support groups bring together people with a common role (family caregiving) at different stages and with different illnesses and challenges.
When you join a family caregiver education/support group, you have to know what the group is really about. If the group is not right for you, find another. So, ask questions before joining:
What is being discussed and taught? Is the concentration only on clinical issues (e.g., how to give a bed bath)? Does that kind of information meet your needs? Does the educational content include issues such as how to identify community-based resources, locate additional in-home care, and address your own stresses?
Is support brief or ongoing? Is the program brief (e.g., eight weeks and then you are on your own) or designed to provide ongoing assistance, as your caregiving needs change? Support groups are for the long haul and people come and go. Many of the support groups I have run have been in existence for years, and the variety of experiences make a support group the valuable tool that it is. Many areas of the country have only a few, if any, consistent support groups. Participating using telecommunications tools (e.g., Skype) provided on the Internet can allow you to observe and participate in support groups. Nothing beats being there, but if you cannot attend or a group does not exist near you, watching recordings of actual group meetings is the next best thing.
If the group is not right for you, find another.
Avoid pity parties. When new support group participants first join a group, they may start out with a “woe is me” attitude, but an effective group and facilitator can quickly challenge and change that attitude to one of productive interaction focused on more positive outcomes.
What does the instructor or facilitator offer? Does he or she have shared experience with the group’s caregivers? The best educational and support groups for caregivers are facilitated by people who, while they may have some clinical knowledge, are trained specifically in nonclinical family caregiving support, practical problem solving, and coping skills. The person may be a paid
and resentment (for a System that failed so dramatically to meet the caregiver’s expectations).
