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Prepare a “job description” for the caregiving that has to be done. Write down the one-time actions (e.g., add grab bars to the bathrooms) and the long-term care tasks (e.g., provide transportation to the doctor every month for the foreseeable future) and consider the kind of help that is most appropriate to perform the needed activity. Everyone needs to know that caregiving is a job and, like all jobs, everybody who “works” in the family has a job description and shares established responsibilities. Share the job description with family members who need to be involved.
Pick the leader. If you are truly on your own as a family caregiver, you may become the alpha caregiver by default, but when there are two or more family members involved in family caregiving, someone has to become the ultimate decision-maker, the alpha caregiver. While the alpha caregiver is the decision-maker, the alpha may not be the primary caregiver providing home support. Perhaps the primary caregiver is not a good decision-maker. Perhaps the person who seems to be acting as the alpha caregiver based on historical interactions at a different time or under different circumstances is no longer the best alpha caregiver for today’s circumstances. There may be practical barriers; perhaps the person lives too far away and knows too little about the realities of what is needed to be the one making day-to-day decisions about care. Perhaps you need a “family team” until things are sorted out, and then you may have to choose a more permanent alpha caregiver. Also, perhaps there is self-interest in wanting to be the alpha caregiver, such as controlling Dad’s finances to the exclusion of others.
Set tasks for everyone. Large or small, tasks have to be done, and it is important that people know what has to be done, commit to perform their part, and are held accountable. The alpha caregiver can suggest who should do what, and, after discussion and the individuals involved have agreed to share the load, the alpha caregiver should repeat back who has agreed to do what. Your oldest son, away at college, can still provide moral support via phone, e-mail, or text to his chronically ill younger brother. Your daughter, who goes to the same school, can bring home assignments for him and take completed homework to school. These contributions may seem small and insignificant, but not getting homework may make Johnny feel more detached and increase his sense of falling behind. If Mom or Dad are freed up to do more significant things, then the “small” things are equally important as the “large.”
Agree on key strategies to reach goals. In family caregiving, this means deciding together how best to use resources to address today’s problems and to prepare to meet tomorrow’s needs. If your 190-pound brother Ed comes home from Iraq with injuries that leave him facing years of rehabilitation in a wheelchair, can his 103-pound wife Suzy provide physical care, even for a short while? Is home care the right choice and, if so, what equipment is needed and what kind can of paid caregiver assistance is best? What options does the Veteran’s Administration offer and for how long? What will happen when Ed and Suzy get older and are less able? Who will care for Ed? What kind of resources will be available to support Suzy after all is said and done?
Develop the Plan. Identify and summarize needs, allocate available resources, identify missing resources, and pinpoint and assign tasks that allow the planners to create and set reasonable timelines.
Prioritize. Put first things first—but the Plan must include future goals, as well as address today’s needs. Consider asking the advice of a professional advisor on caregiving to review your efforts and comment on keeping the Plan realistic and workable. Furthermore, an outside professional may have a different perspective on how to be “creative” in dealing with the System and finding local resources.
Write it down. There is an old saying: “If it ain’t writ, it ain’t real.” Even the most well-meaning person can forget spoken agreements. So, write down the Plan and then share the Plan with everyone, including healthcare professionals. With a written Plan in hand, everyone will know what has to be done, when it needs to be done, and who has made the commitment to do it.
A written Plan is a tool for ensuring that commitments are met. Suppose the family members at the family meeting heard your brother Harry say, “I will send $300 a month to help pay for Dad’s in-home nursing, and I’ll send the check on the fifteenth of the month.” After the meeting, no one bothered to write down the individual elements of the Plan. You (the alpha caregiver) and your sister Ellen (the primary caregiver) worked out a monthly budget and included Harry’s commitment of $300 to cover costs of hours of paid care. The fifteenth of the month passed and the check from Harry was late. When it did arrive, it was for only $150. Because you are the alpha caregiver, you called Harry up and said, “Thanks for the check Harry, but we were wondering when the remaining $150 will get here? Oh, by the way, Ellen really needs you to send the check by the fifteenth as you agreed.” Harry responded, “Hey, I didn’t agree to send $300 a month every month! I said maybe $150 every couple of months, if I can.” Without the written Plan in hand to review and refresh his memory about his commitment, Harry’s contribution not only shrank, it also became an “if.”
Review the Plan frequently and revise it as often as necessary. Human beings are prone to forget about small and large commitments and time frames in which we have committed to do something. Reviewing the Plan at least monthly (and whenever something happens that may require you to make a change) is a must.
Nothing is certain in life; family caregiving is no exception. Every day and every hour of caregiving is different and can bring a change. Tasks included in the Plan when it was written last month can change this month, or two days after the Plan was written, for that matter. For example, your fifty-year-old mother, who lives alone with minimal supervision, has mental health issues severe enough that you are now her legal guardian. Suddenly, she begins to demonstrate delusional behavior. She renewed her prescriptions when she last went to the psychiatrist, but you checked and the dosages were the same (dosage changes can cause side effects in any treatment regime). When the doctor sees Mom, he decides that her behavior is not a result of medication issues, but that her condition has deteriorated. She can no longer be left alone at any time. So, you have to figure out the options, reallocate tasks and resources, and revise the Plan, yet again.
The only constant in family caregiving is change. Recognize it and be prepared for it.
One of the things family caregiving guarantees is that nothing stays the same. As soon as things seem to be running smoothly and on course, an event or circumstance occurs that flips things upside down. The only constant in family caregiving is change. Recognize it and be prepared for it.
