caremap caregiving

A CareMap from Atlas of Caregiving

Last month I wrote about my wife’s 94-year-old Aunt Jeanne who lives in Houston and was forced to flee Hurricane Harvey in August as water flooded the streets and poured into her home.

Aunt Jeanne had family nearby. Her grandson called the neighbors and found a house across the alley with a second story. Jeanne, her daughter Vicki, her granddaughter Wendy, Wendy’s friend, and 3 dogs evacuated safely. 17 people from the neighborhood found shelter in that house. A few days later, Jeanne moved into her daughter’s home where she’ll stay for as long as it takes to repair her home.

Aunt Jeanne considers herself lucky. There were neighbors, friends, and family to help. There was community. She was not alone.

One of the greatest human fears is the fear of being alone, and it becomes magnified as we age. Just as we plan ahead by writing a Will, and deciding on a Medical Directive and Durable Power of Attorney for Healthcare and Finances, there is a new movement to also take a hard look at who we can count on among our family, friends, and community to step in when help is needed. The fortunate ones are like Aunt Jeanne who had family, friends, and community to step in to assist. Perhaps she knew they would be there for her; perhaps she didn’t. But it’s a cautionary story that suggests identifying our potential caregivers is a task best done before something bad happens and care is needed.

To help in this process, a new organization, Atlas of Caregiving, has developed a visual tool that professionals and individuals and families who are caregivers can use to identify those who may be or are currently, part of a “care community” for an individual. The tool is called a CareMap and it “illustrates the caregiver’s own support system, highlights what is working well, and often reveals duplication or gaps in care and resources.”

In an article about the organization from the September 21, 2017, online issue of Kaiser Health News, a story is told about “Jacque Pearson” who was trying “to devise a plan to move her 81-year-old dad, who has Alzheimer’s, from his home in Boise, Idaho, to hers in Denver.” Every time she tried to think about it “she felt stuck.” Then, “she had a breakthrough. It happened at an AARP-sponsored session in which Pearson created a ‘CareMap’ — a hand-drawn picture showing all the people she cares for as well as the people surrounding those individuals and her own sources of support.” This exercise helped Pearson see that her dad had three friends and a long-time doctor that she could call on for help. Her CareMap also showed clearly that his other children could not be counted on for help. She was, the primary caregiver, but she lived in Denver while her dad was still in Boise.

The CareMap helped Pearson to see that she could call on her dad’s friends and doctor for help in convincing him to move to Denver. At the AARP workshop, Jacque was guided to sketch stick figures who represented the people in her father’s life. Different shapes, symbols, and arrows depicted who the people were and the relationship between them. According to the Kaiser news story, “One of the goals (of the CareMap) was to understand what Rajiv Mehta, the project’s founder, calls the “ecosystem of family caregiving, the relationships that surround caregivers and that shape their experiences.” Seeing the network of support in a visual representation allows a family to focus on the resources they do have.

The process of developing the CareMap tool took time and was refined during a pilot study. “Over time,” according to the Kaiser article, “refinements were added. Bidirectional arrows, for example, could show support flowing between people in both directions and the amount of assistance being provided (multiple times a day, daily, weekly or occasionally). Instructions for drawing CareMaps are available on the Atlas of Caregiving website.”

One of the things I’ve learned in the 22 years since opening Family Resource Home Care, is that talking about aging, caregiving, and the need to make plans for future possibilities is an extremely difficult task for families. Our Home Care Supervisors are trained to work with families to identify the needs of their elder and the available people they have to meet those needs. For families who have difficulty with that conversation, I could see using the CareMap model as a way to jumpstart the conversation. Sometimes a picture is worth a thousand words.