The Family Caregiver's Manual. David Levy

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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.

       5.

       Why Document?

       Whether you have limited resources (a single paycheck) or extensive resources (healthy retirement and investment plans, property, etc.), up-to-date and correctly prepared financial, legal, and healthcare documentation makes it easier to make decisions and can protect everybody’s rights. Even if you are not in the throes of developing a Caregiving Plan for a loved one, having access to up-to-date information is important—for everyone, regardless of their age, health, or anticipated needs. Having accurate, complete information is vital for developing a functional Plan.

      Let’s suppose Mom, who is a widow, is beginning to feel frail, and she wants you and your sibling to work together to plan ahead, just to be prepared in case something should happen. If you have gathered together essential information about her situation, you should be able to answer yes to the following five questions:

       1. Have the two of you recently reviewed Mom’s financial and legal documentation to identify any gaps in financial plans (records, asset protection plans, insurance) and legal documentation (wills, deeds, powers of attorney, advanced healthcare directives, and living wills)?

       2. Do legal documents include those that have been recently revised to ensure healthcare information, coverage, and preferences (and a Caregiving Plan)? Are they up-to-date in terms of changes in local, state, and federal laws and rules and can they be used without difficulty (including medical history, healthcare provider lists, legal documents covering healthcare surrogacy instructions and designations)?

       3. Is all

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