Noticing Changes: Caring for Yourself in the Midst of the Unknown

By Padma Gordon

Stage 1 of the Raregivers Emotional Journey Map is noticing changes. You begin to see something shifting with your loved one, and suddenly, you find yourself navigating unfamiliar territory. What was your first experience like? Did you feel overwhelmed, frightened, or unsure of what to do next? Most caregivers experience overwhelm as they begin to understand what is happening.

Amidst the uncertainty and chaos, one of the most important things you can do is tend to yourself. Pause, take a breath, and ask, “What do I need right now?” Caregiving is stressful, and even routine appointments can bring anxiety. You may be asked to recount your loved one's medical history, explain changes, and retell painful parts of your story.

You are the expert, the keeper of the information, and often the person responsible for making sure nothing gets missed. This can be exhausting and even retraumatizing. At the same time, these appointments offer an opportunity to recognize how far you have come. Remember, you do not have to do it all alone. Could a family member attend an appointment, organize records, or manage follow-up calls? Many caregivers fall into the role of the savior, believing they must do everything. The antidote is asking for help and allowing others to share the responsibility.

Make room for small practices that help you return to yourself. Try breathing exercises, journaling, gentle movement, or a few quiet moments with your eyes closed. One simple practice is box breathing: breathe in for four counts, hold for four, breathe out for four, and pause for four before beginning again. Repeat for a few rounds, adjusting the timing to whatever feels comfortable.

If holding your breath feels uncomfortable, simply breathe naturally and lengthen your exhale. These small moments can help you slow down and reconnect with yourself. Practice trusting your own knowledge and intuition. You know your loved one in ways that no medical professional can, and your observations matter. Speak up, ask questions, and cultivate open communication with doctors and support people.

You are allowed to advocate for your loved one while setting boundaries around what you can reasonably manage. Grace, time, and patience are essential. Be mindful of your inner critic and external criticism, too. You have been through a great deal, and you deserve compassion rather than judgment. Remember, you've got this.

Finally, recognize that you need support and connection along the way. It can be difficult to find people who truly understand what you are experiencing, which is why community matters. Join us in the Women’s Empowerment Circle, where you can connect with others who understand the unique challenges of caregiving. And remember, not every friendship needs to hold the whole story.

Some people offer a listening ear, while others bring laughter, fun, and a welcome change of scenery. Each relationship has its own value. Take micro-moments for yourself throughout the day. Drink in the sunshine, savor a cup of tea, take a walk, move your body, or lean into your faith. These moments may seem small, yet they remind you that you are a human being with needs and a life of your own. You matter, too. Keep coming back to yourself, one breath and one moment at a time.

Coming Up On October 20

THEME: Let Go of the Hero’s Cloak (Stage 2) 

Becoming a caregiver means increased visits to doctors, complex care coordination, discovering a lack of treatment and becoming an expert on how to give the best care to your Rare child or spouse. Along the way you somehow manage to develop the skills needed to navigate the healthcare system and take care of yourself as you navigate your new medicalized reality. Doing all of this is heroic and being a hero is a lot of pressure. Self-compassion and self-care are key. What are the skills that empower you to advocate for your loved one’s needs and tend to your own?

Join Us for the Women's Empowerment Circle every Tuesday at 10am PST.

You may not realize how much you need the Raregivers community until you find it.

Zoom Link: https://us02web.zoom.us/j/84782918881

Hope to see you there!