I write as a son who cared for his mother who suffered from dementia in his home, author of a self-help/memoir to benefit others, and an advocate for family caregiving. When My Mother No Longer Knew My Name: a son’s “course” in “rational” caregiving is the book I wish I had had, but never found, when my mother was living with me. Equally important, it is filled with tips to help healthcare professionals help caregivers. Overall, as “rational” in the title reveals, I try to “plan ahead” and avoid crises. Here are just five of many ways to do it:

 

1. Help family caregivers discuss all the issues involved in their role as caregiver with all of the family members who need, or may need, their help. Skillful and compassionate healthcare professionals will know how to keep the discussion from sounding like a powwow on death. Still, the conversation needs to be no-holds-barred. For example, it should address the possibility that at some (previously agreed upon) point a family member may need to go from home into a nursing home or other facility or under someone else’s care.

 

2. Make sure caregivers have all necessary papers in order. I am shocked at the many people I meet who don’t have a living will, healthcare surrogate, will, and durable power of attorney—and then again I’m not. There is nothing perfunctory about signing such important papers. Few can face putting in writing when they want a machine keeping them alive to be shut off—or if they ever want to be placed on a machine in the first place. Healthcare professionals need to stress that, unless families express their desires in a legally executed document, a court may make decisions for them.

 

3. Help caregivers create a “family caregiving circle.” Too often, one member of a family (almost always a woman) becomes the designated caregiver—usually by default and (often) with resentment. Though one person may be the principal caregiver, no one should be off the hook—not even male family members and children. A little-known fact is that one-third of all caregivers in the United States are men. Everyone’s responsibilities should be discussed openly and honestly, and agreed to, so no one feels put upon later.

 

4. Help caregivers plan for the financial resources to cover family members’ needs. Caregiving is costly both in time and money. Families (aged relative with family members) need to make a list of all the caregiving scenarios they can think of (family member completely at home, needing to go to a rehab facility, going into a nursing home, whatever). Then, they need to write down the costs of each alternative, along with all available financial resources. For example, next to the at-home scenario, they need to consider the possible cost of temporary or long-term outside help. They need to compare the costs and benefits of long-term health insurance with a family member’s not working but making caregiving his full-time job.

 

5. Help caregivers become effective advocates. Someone who has the stamina, smarts, and diplomatic skills needs to ensure their family member always receives the care she deserves and is entitled to. For example, encourage them to become thoroughly familiar with the fine print of insurance policies, Medicare, and Medicaid long before they may have to file a claim or need services.

 

Healthcare professionals need to help family caregivers think rationally and act compassionately – the way everyone would want to be treated.