The role of caring for someone you love with sarcoma arrives without training, without a handbook, and usually without a support system that understands what you are going through. Yesterday you were a spouse, parent, child, or friend. Today, you are also a case manager, researcher, scheduler, advocate, insurance navigator, and emotional anchor.
Being diagnosed with a sarcoma is a rare event. It will be very unlikely that you have a friend or community member who has walked the same road and can help guide you. Friends want to help but don’t know how. Family members try to understand but cannot quite grasp the constant calculations running in the background of your mind: When is the next scan? What did that lab value mean? Is that new symptom urgent or expected? Should we push for another opinion?
Loneliness for caregivers is not just about being physically by yourself. It is the feeling that the weight of decision-making rests on your shoulders, and a race against time to learn everything about this rare disease so you can make the best possible decisions with your loved one.
You begin reading medical papers late at night, sounding out words you have never encountered before, researching up acronyms. You learn the language of mutations, pathways, side effects, and response rates. You figure out which conferences matter, which hospitals see the most patients, which trials might open, and which questions will make the most of a 15-minute appointment. You build spreadsheets. You keep binders. You translate complex science into practical next steps. Without applying for the job, you have become the project leader of getting your loved one healthy again.
If this sounds like you, we see you and we are here to help. Although we can’t fully take this burden off your hands, The Life Raft Group has resources that can help lighten your load for every caregiving hat you wear.
Let’s look at some of the key hats caregivers often find themselves wearing, and the resources available for each:
The Researcher
The Life Raft Group has access to the latest research, and we present it in ways that are digestible to the patient/caregiver community. Check out our webinars and articles on our website. If you have any questions, you can always contact our research team.
The Supporter
Caregivers spend so much time being “the rock” for the patient. The Life Raft Group offers programs just for caregivers to ensure they have a community they can lean on too.
- Our Caregiver Mentor program connects caregivers of newly diagnosed patients with caregivers of patients who have had GIST for many years. Hearing from these caregivers gives a sense of hope that they need.
- Our Caregiver Support Group offers virtual meetings for caregivers to discuss their experiences with one another or just listen to others.
The Advocate
Having trouble getting your insurance to pay for biomarker testing? Not sure if the treatment path your loved one is on is the best fit? Talk it out with our team at The Life Raft Group – we are here to help you navigate this journey.
The Case Manager
We know you want your loved one to have the best possible care. We did the leg work for you in finding a GIST specialist – view our GIST specialist list to identify an oncologist in your area that has been vetted by our organization to provide quality GIST care. You can also visit GISTtrials.org to view clinical trials specifically for GIST, instead of having to wade through clinicaltrials.gov, a website notorious for confusing patients
Over time, many caregivers develop an expertise they never sought. They can summarize a treatment history in minutes, debate study data, or explain why a particular scan matters. Professionals may come to rely on them. New families may look to them for guidance. This kind of expertise takes time. You do not need to know it all right now. Lean on us so we can help you navigate the complicated stuff, and you can put your energy into supporting your loved one.
If you are a caregiver in this world, it is important to remember that the many hats you wear are evidence of devotion, not obligation. You are doing specialized, high-stakes work in an emotionally impossible situation. Feeling overwhelmed does not mean you are failing; it means the job is enormous.
To our caregivers – you are seen. We want you empowered as you wear your various hats, not overwhelmed. We are here for you every step of the way.
If you are interested in the Mentor program or joining the Caregiver Support Group, please reach out to Brian Morello at bmorello@liferaftgroup.org
