What is a CareBrigade?
CareBrigade is a Patient-Family Engagement system designed to support those newly diagnosed with cancer or another life-threatening disease to engage with their doctors and medical teams powerfully as they navigate an often stressful and confusing diagnosis. CareBrigade offers partnership as the patient gathers and seeks to understand information necessary to participate fully in choosing an appropriate treatment plan. CareBrigade suggests specific emotional, medical, practical and spiritual support roles that family and close friends (even those living far away) can play for their loved one from the beginning − and throughout the entire continuum of care − so no patient ever has to go it alone.
In the CareBrigade model, the patient always has the last word in choosing what s/he needs, how s/he wants to be supported, and who is allowed close access. CareBrigade Roles allow friends and family (both those at a distance and those living close by) to take turns playing these important positions on the care team, especially when folks living alone face at-home recovery from major surgery or during extended bouts of debilitating chemo or radiation treatments. Once a CareBrigade has been established, it can be reestablished as the patient needs, and managed over distance using the CareBrigade website and other FREE online tools.
What can a CareBrigade do before the patient even knows the treatment plan?
Immediately after diagnosis, friends and family frequently ask, "What can I do to help?" Patients, often overwhelmed at this most vulnerable time, seldom can articulate what they are going to need − beside "a cure!" CareBrigade not only suggests specific roles that patients can ask their loved ones to do right away, but insures that patients can screen out individuals they really don't want to interact with.
Friends and family can look over specific roles and tasks that would be helpful for patients right up front, offering assistance that matches their specific talents and that they would enjoy doing. For example, several CareBrigade roles support the patient in managing the fear and worry that often arise unexpectedly and block a patient's ability to comprehend the doctor's explanations, or that make them too confused to ask questions or unwilling to speak up when something isn't working. Some roles help patients navigate scary medical tests, interpret medical jargon, remember what each doctor said or track opinions of different specialists, so the patient can make a truly informed choice among multiple recommended treatment options when the time comes.
Once the treatment plan has been chosen, a CarePartner can help the patient generate which important practical tasks s/he will need help with during at-home surgical recovery and/or chemo or radiation treatments. Both patient and CarePartner can predict more accurately what restrictions are likely to be in place, and will be able to send wish lists with requests specific to the patient's unique circumstances, to acquaintances, work colleagues, neighbors and friends, including predicted treatment timelines. The request to "only do what you like to do" combined with a predicted timeline for the help that's needed actually make it easier for folks to commit. A designated representative can send these requests on the patient's behalf if the patient isn't up to asking.
How do I start a CareBrigade, if I am the patient?
You can start right away. In fact, we recommend that the patient, as leader of their own CareBrigade, chooses their personal CareBrigade "Core Support Team" as soon as possible after the shock of diagnosis wears off. To get started:
- Download and print out the "5 Steps to a CareBrigade" PDF and "Choosing a CarePartner" quiz. The quiz helps you identify what characteristics CarePartners need, to help you narrow your choice. The 5 Steps printout can be given to folks to explain how the CareBrigade works for those who want to help, but don't have access to the Internet or don't like using it. Email, websites, smart phones and tablets allow patients and family members to check out all the forms and web directions, even if they live at a distance.
- Choose your CarePartner. Your CarePartner's Role will be to make sure your wishes are honored and to support you any way you request throughout your medical journey. The Roles page provides more detail about what's involved in the CarePartner's role.
As you look over the other Core Patient Support Roles, think about personal friends or family members who possess the characteristics described for each role, especially those you enjoy being around. They will be your Core Support Team in the CareBrigade.
The Patient ALWAYS gets to say who serves in each of these roles. Choose people you love, those who feed your spirit, whose talents you believe in, and whom you trust to provide the style of support you prefer.
How can I help start a CareBrigade if I'm not the patient?
To get a CareBrigade started, a close friend and/or family member can assume the role of CarePartner initially by introducing the patient to the CareBrigade website. Before working with the patient, the CarePartner volunteer should check out the entire CareBrigade website, especially the roles page, downloading and printing out copies of the "5 Steps to a CareBrigade" PDF and "Choosing a CarePartner" quiz.
When reviewing the Roles page, the CarePartner volunteer should choose at least two other roles s/he would be willing to play for the patient, if the offer to serve as CarePartner is not accepted. S/he also should be prepared to bow out graciously if the patient chooses someone else after taking the quiz. Although his/her role as CarePartner might be a temporary one, this good friend should be prepared to play that role during the first meeting with the patient, brainstorming the names of friends and family who can play all of the Core Support roles, especially scribe and medical advocate. CarePartners are not expected to be live-in caregivers, but can offer the patient support by telephone, while close-up partners who drop off meals can take turns with the daily "check in" for patients who truly have no family near-by.
What if I live at a distance? Can I help?
Except for the scribe, who needs to live nearby, every Core Support Role can be switched around and played at least part of the time by loved ones at a distance. What's great about the CareBrigade is it allows for the patient's family members and/or close friends regardless of distance to discover valuable and important roles they can offer and actually do for their loved ones. For patients who live alone, with family and friends far away, a CareBrigade can be a godsend.
What evidence is there that the CarePartner role (or any other role) can be done at a distance?
I (Florence H.) designed the first CareBrigade between 2004 and 2005, when, as a single woman living alone, I faced a scary cancer diagnosis that included major surgery and included at-home recovery with difficult restrictions: six weeks of no driving and no lifting, and the prospect of chemo and radiation. Having moved from D.C. to Seattle only three years before, my entire family consisted of a daughter in Los Angeles who had just landed her first post-college big job, a son in D.C. whose wife was pregnant with their first child, and a sister in Pennsylvania, a nurse with health problems of her own. My new friends in Seattle felt more like acquaintances, and I lived five miles from the closest of those. My dance buddy, a ministerial student who lived 90 minutes away (whose night job was as a hospice minister), became both my spiritual advisor and my CarePartner. Using our dance email list, she helped me generate a wish list and a request letter asking for drivers, food shoppers, meal providers and errand runners.
Seventy-five people volunteered to do something. I was blown away by their generosity.
After I healed, I took the CareBrigade model to others, personally serving as initial CarePartner while living in Seattle, for at least three CareBrigades, between 2008-2012, including two cancer patients in Philadelphia. The first was my brother-in-law B − himself a caregiver to my sister with MS − who had three cancer surgeries over a three-year period. I later served as CarePartner for my best friend from college, K, who was diagnosed with Stage 4 colon cancer. Over the span of two years, K had two surgeries and months of chemo. I served as her spiritual advisor as well. K was an atheist who taught me how powerful having loving friends who just listen can be, if they honor their friend instead of imposing their own personal spiritual agenda.
Because CareBrigade is about roles, not people, patients can choose to have two CarePartners, one who lives far away and communicates by phone, Skype, FaceTime or other technology to provide specific support (perhaps flying in for brief set-up visits) and another living nearby who might play roles demanding on-location presence (scribe, brigade coordinators, etc.) For example, K used her son as her close-up CarePartner, who helped her connect with a renowned specialist for a second opinion when she struggled to make serious treatment decisions with doctors who wouldn't listen to her.
My third time as a CarePartner was for another dear friend in Seattle, whose cancer treatment stretched over 18 months. T lived alone, her only brother lived in Florida and her only son was serving in Afghanistan. One of the two friends who rented rooms in her home volunteered to take time off his job in exchange for free rent over time so he could be her in-house caregiver (providing breakfast and lunches ) for weeks after her surgery and throughout chemo. Friends, neighbors and colleagues provided dinners through a Daily Bread Brigade. T and her business partner, who owned a large, well-respected Seattle environmental company, had many work colleagues who respected and loved T. These people called and volunteered for roles such as personal driver. A couple of neighbors offered their teens to take over her lawn care and other such duties.
For people living alone, far from family and with few friends nearby, for the elderly whose children live at a distance, for single parents facing major surgery, or chemo/radiation treatment for themselves, a CareBrigade can truly be a godsend. Even for individuals with live-in caregivers, a CareBrigade can offer respite care for the caregiver. For those who hate to ask for help − which includes many of us − the CareBrigade Wish List system (managed by a CarePartner/Scheduler team) can be the only way at-home recovery coverage can happen.
What will it cost me to use a CareBrigade?
Nothing. Everything the patient, friends and family need to fulfill CareBrigade roles (booklets, forms, checklists, apps, and Web tools) are downloadable and FREE! ALL of the links we share provide FREE services. Except for an occasional Patient Empowerment Book (not available for sale anywhere else) we never link to a site that sells anything.
"I have no close friends nor any family living nearby. I'm having surgery and I don't want to ask people I barely know to support me in such an intimate way. I know after the first person I ask says "No," I'll never ask anyone else. My daughter is going to fly in to cover the first week but after that I can't imagine not being able to drive."
I got it. This was my issue when I began my first CareBrigade. Having your adult child or a dear friend who lives at a distance fly in to serve as your CarePartner right after the surgery is brilliant, but often they come for the surgery and leave right after. Asking them to add a few days to their trip can make for a good transition. After a week you will see how you'e doing and will still have them there to act as your CarePartner during the week they stay.
While she (or he) is there or even before s/he comes, use the Choosing a CarePartner Quiz to identify someone nearby that you like, who fits the CarePartner description, and who you might ask to take over from your family member or friend. While your family member of friend is there, have her serve as your CarePartner by helping you prepare the Wish list, collect your email addresses, compose a request email asking others on your behalf. Unlimited long distance on her mobile phone means she can continue to take questions and buffer you from anything you don't want to do even once she's home.
The CarePartner can do most of the work from a distance, as long as you have some close-up supporters lined up in case. You are the actual leader of the CareBrigade. You just need someone nearby who can buffer you from folks you don't want to see and also support you in getting what you need done. My CarePartner worked night shift and lived a distance away. Most of our communications were by phone. She also understood that I wanted to lead and always respected that as my role.
If you request it, your CarePartner can help you navigate thru any scary diagnostic tests, accompany you to doctor's appointments that may be difficult to face alone, and even help you set up and manage your CareBrigade helpers all the way through to at-home support during treatments. See the CarePartner page or the Step 1: Choose Core Support page for more information. As for the insensitive volunteer, the patient gets to review the list of volunteers before the at-home Recovery volunteer helpers begin. The patient screens each for the level of closeness of patient access s/h wants each volunteer to have, ranging from complete access (best friend, brothers and sisters) through to "take out trash on Wednesday," to no access at all, or "pray for me."
I'm a friend but not one of the patient's close friends. I want to help. What role should I volunteer for?
If you live close, check out the scribe, medical advocate, scheduler, and/or some of the Brigade coordinator roles. The important thing to remember is to only volunteer for roles or tasks that you'd like to do or want to do, and that you are good at. For instance, don't volunteer to do close-up help if you don't really like the patient, and/or don't volunteer for transportation duties if you hate to drive or your car isn't dependable, don't volunteer to dog-walk if you have a knee injury or are allergic to dogs. An important rule of healing is that the patient not be exposed to negative and/or unhappy people, nor anyone who thinks that suffering or sacrifice is a good thing. By volunteering for tasks you enjoy, you'll be doing the patient a huge service! You'll be happier and will be keeping the energy around the patient upbeat and positive.
I live far away. I want to be my sister's CarePartner. Can this work?
Absolutely! Especially in the beginning of the patient's journey, you can do a lot just by using the website. Brainstorming as she chooses which friends she wants as her perfect Core Patient Support Team, and gathering their emails can be done easily over the telephone. Remember, because CarePartner is a role, someone living closer to the patient can be chosen at a later date the next time she needs an up-close CarePartner. Once the CareBrigade begins she may discover her scribe or her medical advocate is a great compassionate listener, so can double in both roles, when needed. As a sibling, you might want to fly back to help the patient set up their house for at-home recovery during prolonged treatments or after surgery. By that time, you'll both have a better understanding of what kind of support s/he has on the ground, and who else you can ask.
I want to have my spouse be my CarePartner and my scribe. Will this work?
You'd think your live-in spouse and/or caregiver to be the obvious choice for both roles. Be aware, however, that the spouse as scribe, especially in the early appointments, can often be as devastated by any bad news as the patient. S/he might stop listening and might not have the objectivity needed to capture intimidating details. An objective scribe who can write quickly and stay on task is the one to ask to serve. Having a spouse be CarePartner depends on whether s/he is a good match on the CarePartner Quiz. Also, if your spouse will be your live-in caregiver, it might be a gift to you both to have another person serving in this role especially when putting together an at-home recovery team. A CarePartner (working closely with the spouse/caregiver) can keep the latter from being overwhelmed with managing everything.
I'm an atheist. What might a spiritual advisor/advocate for me look like?
My best friend from college, K, was an atheist, yet she chose me to be her spiritual advocate during her Stage 4 colon-cancer journey. Although she had no religious affiliation, she certainly knew what fed her spirit! She spent her good days between treatments driving through Pennsylvania countryside in spring, with the top down on her Miata, or sitting in her garden surrounded by daffodils and lilacs. She demonstrated how to live every day full-out until the journey was over. What she actually told me was: "The one difference between me and other people I see each day is I know that I am dying and thus, I'm living each day in awe of, and gratitude for, the beauty I see all around me."
In her words: "If you asked me a year ago if I had a spiritual life, I would have said, 'No!' followed by, 'What does that mean, anyway?' Then I would have described myself as secular, rational, maybe a humanist. But they were not things that I thought of as spiritual. However, whenever I experienced beauty, love, awe, hope, connectedness, I found myself saying, 'This (fill in the blanks... concert, garden, picture....) was not just the equivalent of a church service, it was better.'
"It was after I was diagnosed with Stage 4 cancer, with the help of my 'spiritual' advocate, that I began to inquire into what constituted a spiritual life? Could I develop one? OR did I already have one that I hadn't separated from my former religious life? How would it help me not just live through the whole cancer experience, but find within it peace, acceptance and strength?
"I realized then that, indeed, I did have a spiritual life, in the form of art and science. Both were, for me, what we humans at our best created from our exploration of the physical, emotional and rational world. 'Beauty is truth, and truth beauty' finally meant something to me. Whether looking at the branches of a tree or fractals, at the painting 'A Starry Night' or pictures from the Hubble telescope; whether listening to the haunting melodies of Tristan and Isolde or the songs of whales; or seeing ultrasound images of the developing fetus or the evolution of Dave in 'A Space Odyssey,' we are experiencing the spiritual. It surrounds us. No cathedrals needed. Our preachers are those who give us 'eyes to see with.' Our saints are dedicated musicians and biologists, playwrights and mathematicians. Our mission is to contribute to Truth and Beauty in the world, and our 'heaven' is in knowing we left Earth a tiny bit better than we found it."
Most of my friends are work acquaintances. I don't feel comfortable asking them to help. What should I do?
The good thing about having your CarePartner ask on your behalf by emailing the wish list is that you do not have to ask. You can if you prefer, of course. But for a patient who doesn't feel s/he can deal with excuses and/or no's, or resists having to tell their story over and over again, this method actually generates more volunteers with less anxiety on both sides. The CarePartner receives volunteers' wish list offers back by email, manages assignments (supported by the live-in caregiver and/or scheduler), who communicates any restrictions and handles any changes. Your CareBrigade leader assigns the volunteers' tasks, which will keep uncomfortable people − we all know some − out of your personal space.
Folks get the the wish list featuring those tasks you need done, for example, during times you can't drive. The list offers many tasks that people can do easily, many which demand little or no interactions with the patient. The wish list gives them access to being of assistance (run pharmacy errands, shop for food, pick up visitors at the airport, cut the lawn, walk the dog, take in trash cans, etc.), tasks that will help you out in myriad material ways. Meal delivery can be managed even more efficiently, since the wish list can include dietary restrictions, family size and preferences (vegan, etc.), drop-off times, favorite places for ordering take-out meals, and so forth, so you don't have to worry about getting four macaroni casseroles on the same day. We've all been there.
At CareBrigade's core is the knowledge that people want to help. Experience tells us that this is absolutely true.