alt=""/> 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 professional or a volunteer, but he or she should have the training to perform at a professional level specific to addressing the needs of caregivers.
Who is in the group? Are you caring for a parent or your spouse, for a child or a friend? The best support group for you, including those offered in the form of limited-time educational groups, will be one that contains at least a few caregivers who share the same relationship you have with the person they are caring for. Better yet, if you are caring for your spouse, find a group that contains only caregivers caring for spouses; if for a parent, a group for adult children caring for their parents; and so on. However, if you cannot find a group that is dedicated in that way, find a group dedicated to family caregivers in general.
After you have participated a few times, did you feel comfortable sharing your emotions and experiences? A true caregiving support group will provide a safe place for you to express grief, anger, guilt, resentment, and frustration—a place where you can interact with other caregivers who are sensitive to emotional and practical issues because they are also caregivers and where you can receive and provide insight and meaningful responses. The group should treat all things said as confidential, and a judgmental attitude has no place in a support group. Whatever you did or are doing is always subject to constructive interaction, but no one can dictate what is right or wrong for you to do!
The Ultimate Solution
Family caregiving is not intuitive, nor do we have access to a system that has figured out family caregiving any better that we as individuals have. We have no “caregiver gene,” and every caregiving situation is unique. Imagine—without the assistance of an experienced family caregiving expert and the support of experienced family caregivers, you and 50 million other caregivers are each reinventing the wheel every day to figure out for yourselves what you need to do. You need more than a list of names and numbers to call or websites to try. You need more than the System saying, essentially, “You figure it out.”
What you need is a plan, and building a plan that works for you is what the rest of this manual is about.
Imagine being the owner of a small business who wants to expand that business successfully. The owner needs to understand costs, benefits, and options; a wise business owner does necessary research and creates a business plan. It is no different for a family caregiver—a wise family caregiver creates a Nonclinical Care Plan (“Plan”).
Making a Plan means preparing for what is happening now and for what may happen in the future, but planning is not always easy. Moreover, most people do not know how to plan or understand the benefits of planning in the context of family caregiving.
An effective plan does the following:
Defines purpose.
Defines real and potential problems, big and small.
Establishes a framework for realistic goals.
Communicates those goals to people who have to make the Plan work.
