Hanna Cooper | 06.18.20
In a health crisis, a bewildering number of decisions, choices and practical needs arise quickly and over time. Family and friends want to help, but even well-meaning offers can become overwhelming and can feel like just another project to manage.
So how does one go about matching offers of support that may be coming in like a firehose-of-love—food, transport, childcare, yardwork, “When may I call or stop by to say ‘hi?’”—with the practical needs of life that can be too much to handle during a health journey?
When I was diagnosed with pancreatic cancer, it became obvious—quickly—that there was no way my husband and I could continue to manage all the day-to-day needs of our family of four, and coordinate the many offers of help from those who loved us.
So we created a core care team. This small group of close friends were willing to act as advisers, planners, and at times, bouncers, to help us navigate and organize our needs, and graciously accept many of the generous offers of support from the community around us.
1. Identify Your Core Care Team
To create your version of a core care team, first think of who in your life you trust implicitly. Who are your closest advisers: siblings, close friends, cousins?
Often it might be family you would turn to, but if you don’t have relatives living nearby, which was the case for me, your friends truly become family.
What personal or professional skills, talents or experiences do these people have that can help you through whatever you are going through? Think along the lines of research, communication, medical knowledge, organizational skills, volunteer management.
And what personal qualities might be needed: tenaciousness, humor, courage, listening?
When you let these people know why you are forming a core care team, mention the skills and qualities that you value and why you’d like to have their help.
Also try to understand that not everyone may feel up to the task or be able to say yes. But certainly all will feel honored and grateful to have been asked to be on your team.
2. Invite Members to Join Team
The ideal size of a core core team is 3-5 people: too large of a group may become unwieldy for coordination. Aim for a balance of skills and talents on your team. You may want to designate one or two people as leaders or main contacts as you identify your needs.
Be specific on how you want to work with this team of helpers. Be as clear as you can on what—and how—you wish to be involved in decisions made on your behalf. Remember that this is likely a new set of roles for everyone involved, and it’s OK to say that.
It is also important for you to think through best-case scenarios. And possible pitfalls. What might really bug you if it happened? Or didn’t happen? Anticipating upsides and downsides will help you create the best plan with your team.
Once your plan is in place, give up control and management of the things you have asked the core team to do. Your job is to focus on your health, life and family; their job is to handle details that take you away from these things.
Also, don’t be afraid to be very specific with your core care team about your communication needs. You are ultimately the leader of the core care team and they will appreciate your guidance because they love you and will want to do right by you.
3. Start a CaringBridge Site
I started my CaringBridge site at the time of my diagnosis, because my husband and I simply could not keep up with the many calls, texts and emails from family and friends wanting to know what was going on. (If you haven’t started a CaringBridge site, I highly recommend it.)
I made Tom and my friend Steph Molliconi, a member of my core care team, co-authors of my site, so they could provide Journal updates when I wasn’t feeling up to it. There were times when this was a godsend.
My core care team also kept track of a GoFundMe site friends had created on my behalf, making sure it was linked to my CaringBridge site.
I liked that everything was all in one place, and my core care team would tell you that using the CaringBridge Planner to ask for things we needed and organize offers of help made things much easier.
4. Use Your CaringBridge Planner
Here’s what’s helpful about the CaringBridge Planner:
- It exists within your CaringBridge site, a place where your family and friends are already in the habit of checking for updates.
- The categories of help in the Planner have been recommended by CaringBridge users who have walked in your shoes. Categories include: meals/food, transportation, errands, visits, household chores, childcare and pet care. There’s also a general category, which is often a place to request and receive gift cards.
As you consider what it takes to keep your household going, also think about the areas in which you are willing to accept help. What would you like to keep doing? What are you willing to let others do for you?
Leave it to your care team to schedule requests in your Planner, and to accept offers of help. They can also reach out to your broader community to fill in gaps, if needed. And if there are people you feel more or less comfortable with helping you, let the core care team know so they can manage accordingly.
By giving the core team guidance—these people are thumbs up for doctor appointments, these people might be better on yard work—they can welcome the help even of folks who want to be helpful but might be an emotional drain if in direct contact with you.
5. Other Duties, as Assigned
You should be able to bare your soul, be upset, get angry and share laughs with your core care team. And they can translate that out to others (or not, depending on what you want) so you don’t have to use your energy to re-tell stories.
They can also run interference so you don’t feel obligated to respond to every communication that comes from people reaching out to help or to get the blow-by-blow on your latest medical visit.
As your needs change, your core team can also handle getting the word out. For example, maybe your appetite or dietary needs have changed. Or no more lasagna!
6. Experiment and Tweak as You Go
Since your needs will likely change over time—what worked for the first 2 months may be totally off for the next 2 months—plan on regularly reviewing how things are going with your core care team.
Some members’ skills might be more important at different stages of your health journey. Be open to talking about what is working and what is not working for you, and for them.
Don’t get hung up on whether it might be an awkward conversation. People simply want to help you, and it’s best to be clear about what you are thinking to that they can help accordingly!
Experiment and be willing to adjust as you go through different stages of healing and as your needs change.
By creating a core care team to help you in very concrete ways that feel supportive to you, you are leveraging the power of community as part of your health and healing journey.
Caption for Main Photo: So that Hanna Cooper and her husband, Tom, Moberg, could focus on Hanna’s health and their family, Hanna formed a core care team to manage offers of help including meals, transportation, errands and yard work.
CaringBridge staff writer Patricia McMorrow contributed details about the Planner to this article.