The Ecosystem of Family Caregiving

Q. My family is new to caregiving, and we’re trying to figure out how to best support each other, but it seems like a tangled web. For instance, I am divorced, but I have a son who can help with practical responsibilities as I care for my mother with Parkinson’s disease in our home. My sister and her husband are both in their 60’s and both struggling with serious illness. They live nearby, but they have few friends. They may also need assistance from me and my son, and perhaps some relatives and friends we haven’t considered. Then, there is the help from professionals to add to the equation.

How could these webs of relationships — people who are caring for each other and who are cared for, in turn, by others — best be portrayed and simplified? I heard something about CareMaps once, and it sounds like a possible solution for our family. How do they work, and are they typically hand drawn or digital? Thanks for any guidance you can provide!

A. As you mentioned, caregiving typically happens within a web of relationships, or “an ecosystem” of relatives, friends, professionals, and organizations. People are often caring for themselves, caring for several others, and being cared for by others, all at the same time. And, what each person does varies by ability and context, and over time.

A CareMap is a diagram of a person’s care ecosystem, showing who cares for whom, and how. The process of thinking about and drawing a CareMap has helped people to more clearly see and to better understand their existing care ecosystem. For many, this has led to action and/or changes resulting in stronger ecosystems, better care, and more confidence in managing their care situation.

The Origin of CareMaps

In 2017, family caregivers and social workers in Santa Barbara, California were introduced to CareMaps by their founder, Rajiv Mehta, as a tool to closely examine family caregiving situations.

The Mapping Santa Barbara project was led by Atlas of Caregiving, Mehta’s organization. Overall, more than 100 people participated in twelve Atlas-led CareMap workshops. These workshops taught participants how to hand-draw their own CareMaps, and how to learn from and act upon what they had drawn. Participants discussed their drawings and discoveries with each other.

Workshop participants also used tools and technology as part of the study to more deeply understand the caregiving experience. Caregivers tracked their physical activity throughout the day, giving them a true picture of just how busy their days were, and how the activities of caregiving and the rest of life were so interwoven.

In one instance, tracking steps using a Fitbit helped a participant realize that the more he walked, the more his care recipient walked. Another participant discovered that her care recipient logged more than 20,000 steps during his nightly wandering.

Other workshop participants reported major changes in their lives resulting from what they discovered about their own caregiving situations, and from subsequent conversations with family members. The exercises helped participants see the value of CareMapping as a way to examine their current situations and delve deeper into how else their loved one can be helped, and who else they can involve, to keep themselves from being overburdened.

The project was very well received. According to Phylene Wiggins, Senior Director of Community Investments, Santa Barbara Foundation, “When the project launched, we didn’t know what we were in for and what an amazing opportunity it was! The findings were nothing short of transformative—both on a personal level and a community level.”

Statements from participants showed a need for more support and/or better use of resources:

• “My CareMap made me realize that while I was accessing all the resources I needed, I could have benefited from greater coordination.”
• “As a single mother and caregiver, I need more support for ME!”
• “Need to discuss with extended family better support for Dad’s main caregiver (our sister).”
• “How limited my ability to care for my mother is.”
• “That there are a lot of people we can count on and others we can’t. I discovered that I need a Plan B to take care of my father and brothers. I learned that I want to involve others and delegate responsibilities.”

The final report of the Pilot study can be found here (https://atlasofcaregiving.com/pilot-study/). You can also view case studies online and download the report and visualizations.

Drawing CareMaps 

Do any of the comments above sound familiar in your situation? Think a CareMap could be useful for you? You can learn to draw and use CareMaps by following this series of free videos offered by Atlas of Caring. There are eight videos, totaling 30 minutes, as follows: 

• Intro to CareMaps (5 min) Get an overview of what CareMaps are, why they’re valuable, and how they can be used.  
• CareMap Tour (3 min) See CareMaps for several actual families with a wide variety of situations. 
• Preparing to Draw (2 min) Learn to identify the people and services whom you will be including in your CareMap. 
• Hand-drawn CareMaps — How to Draw (2 min) Learn how to draw a CareMap by hand. 

• Hand-drawn CareMaps — example: Fay (3 min) See the creation of a CareMap for Fay, who cares for a mother with dementia, with only a little support from others. 
• Hand-drawn CareMaps — example: Nadine (3 min) See the creation of a CareMap for Nadine, who cares for a son with a son with diabetes, supported by her husband and friends. 
• Hand-drawn CareMaps — example: Christi (4 min) See the creation of a CareMap for Christi, who cares for her aging mother-in-law as well as a son with a chronic illness, and also provides long-distance help to her parents living across the country. 
• Learning from CareMaps (8 min) Learn how to learn from and act upon your CareMap. 

Learn Digital CareMaps 

There are five videos, totaling 30 mins. 

• Comparing Hand-drawn and Digital CareMaps (2 min) Discover the advantages of the two methods for creating CareMaps. The gist is that drawing by hand is the easiest way to learn, and the digital tool provides more capabilities and flexibility. 
• Digital CareMaps — How to Draw (3 min) See all the instructional materials, tutorials, and help functions provided within the digital CareMap tool. 
• Digital CareMaps — example: Fay (7 min) See the creation of a CareMap for Fay, who cares for a mother with dementia, with only a little support from others. 

• Digital CareMaps — example: Kate (9 min) See the creation of a CareMap for Kate, who cares for a son as well as her overseas parents, along with her siblings. 
• Digital CareMaps — example: Kate (more details) (7 min) See the use of some of the more powerful features in the digital CareMap tool. 

Sharing CareMaps 

• Sharing CareMaps (3 min) Learn some tips for sharing your CareMap with your family, friends and care professionals, and teaching CareMaps to others. 

Hope you find the CareMaps or whatever tool you use to manage caregiving helpful!

Caregivers and Loved Ones Need to Think About Long-Term Care in the Future

How has caregiving impacted your family? Were their costs that you did not anticipate? Are you now considering nursing home care? If you or your loved one is over 65 or suffering from any sort of serious health condition, the best time to do Medicaid Asset Protection planning is now. Whether you or your loved one is years away from needing nursing home care, is already in a nursing facility, or is somewhere in between, the time to plan is now, not when you are about to run out of money. Please don’t hesitate to call us at any time to make an appointment for an initial consultation:

Fairfax Elder Law Attorney: 703-691-1888
Fredericksburg Elder Law Attorney: 540-479-1435
Rockville Elder Law Attorney: 301-519-8041
DC Elder Law Attorney: 202-587-2797