The Family Caregiver's Manual. David Levy

      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 this critical information assembled in one place?

       4. Is it accessible? Information locked in an inaccessible safety deposit box or Dad’s home safe is as good as no information at all.

       5. Is the information organized so that needed answers can be found quickly, not only by you and Mom but by someone who might have to step up in a crisis?

      There is also a sixth, and final, question you should be able to answer yes to:

       6. Have similar legal documents been prepared and information gathered for all family members of legal age? (Remember Ed Junior? He did not plan to fall from the diving board, but that fall was a life-changing event at age twenty-four. How different would things have been if documentation and a Plan had been in place?)

       When you are preparing a Caregiving Plan, even the smallest details may one day be important.

      Were you able to answer yes to all six questions? If you were, well done, but do not forget to review the information and update as needed. If you were not, everyone has work to do. The sections that follow will assist you in your preparation.

What Can You Learn?

      You may know a great deal about the person you care for, or you may know very little. When you are preparing a Caregiving Plan, even the smallest details may one day be important.

      Regardless of where someone is in the spectrum of care process—even if there is no immediate concern—by developing a complete picture of a person’s background and resources, you can determine next steps. The next step may simply be planning for savings and investments, or it may be reorganizing to ensure that an effective Caregiving Plan can be put into place. You need to consider the same questions regardless of where someone is in the care process.

       Are plans in place for long-term care? Are you managing assets and income for maximum coverage and protection? Have you considered legal and financial incapacity?

       Is care likely to be needed in the future, considering current health conditions and family conditions? If the last three generations of women on Mom’s side of the family had Alzheimer’s disease, it may be reasonable to consider that Mom or her daughters may get it, in spite of having no current symptoms.

       What preferences does the person have for where (location) and from whom to receive such care?

       Can the family and social network provide that care?

       Can valuable information be gathered now that will assist when the care need arises?

       Are local community services and programs available that can be accessed for needed care? What is the likelihood that they will remain or be funded going forward? Changes in health law and funding change resources.

       Before care is needed, what services should you familiarize yourself with (special needs child care, assisted living, adult day care, visiting nurses, VA hospital locations, autism specialists)?

       What steps will maximize independence, dignity, and quality-of-life for the family caregiver and the person being cared for?

      Even a young person can begin thinking about these questions. It is never too early to plan.

Does Everyone Need Legal Documents?

      Absolutely! To ensure effective family caregiving, essential documents should be in place for every family member. Being young and “invincible” does not guarantee protection against illness or accident any more than age guarantees it. Everyone must prepare for the unexpected by putting healthcare documents in place, especially when the relationship is a domestic partnership (unmarried or with significant others). Without proper documents the law will not permit someone to share in personal information nor can that person participate in essential decision-making.

      Durable Powers of Attorney are essential, and the legal rights of the people in every relationship need to be formally in place. No matter what the relationship may be, or how long it has been in place, or what has been said, even in front of witnesses—without valid formal documentation there is little that can be readily done. This is also true for adult children acting on behalf of parents and grandparents or siblings acting for siblings. Without legal documents, you have no greater rights than a total stranger.

      While a doctor