When You Feel Spread Too Thin

By Padma Gordon

Becoming a full-time caregiver can stretch you in ways you never imagined. You are caring for your rare loved one, trying to maintain healthy relationships with other family members, managing appointments and responsibilities, and somehow finding a way to care for yourself. It can feel as though there simply isn’t enough of you to go around.

The foundation for navigating all of this is becoming mindfully connected to yourself. You may need to do less than you have been making yourself do, and more of what nourishes you. Many caregivers feel guilty when they take time for themselves, thinking, I should be caring for my person instead. Notice that word should. It is often a red flag that judgment has entered the room. I should give my child more opportunities. I should be doing this differently. I should be able to handle more. When you hear yourself saying should, pause. Take a breath. Come back to what is actually true right now.

One caregiver in our group shared a beautiful mindfulness practice she uses to discern what is working in her life: Does this give me more energy, or does it deplete me? You can bring this question to the tasks you are doing, commitments you are making, and the people you are engaging with. Notice what happens in your body when you think about something.

Do you feel more open, energized, and connected, or do you feel yourself contract and become exhausted? Caregiving will always include difficult and necessary things. It is about becoming aware of the difference between what is truly needed and what you are doing because of guilt, habit, expectation, or fear. Try keeping a simple energy check-in throughout the day: What is nourishing me? What is draining me? What can I release, simplify, or ask for help with?

And remember, the person you love who has a Rare disease is still an individual, with their own life and their own journey. Zoom out sometimes and notice them beyond the diagnosis and beyond everything you are doing for them. Are they happy and having moments of joy? If they are, allow yourself to trust that.

Your job is not to create a perfect life for them or to control every outcome. Your job is to love them. And loving someone also means tending to your own garden. It means having boundaries, taking time to replenish yourself, allowing your loved one to have their own experience, and remembering your life matters too. You are not separate from the care you give. You are part of the equation. When you stay connected to yourself, you have more clarity about what is truly needed, more capacity to love, and a much greater chance of creating a life that is sustainable for everyone.

Coming Up On October 14: Where Am I As Things Are Changing? (Stage 1)

This week our theme will be noticing changes. In the early stages of becoming a caregiver for your Rare child or spouse, you are asked to embrace many changes as you move from a full or part-time professional to a full-time caregiver. Feelings may arise including fear of what’s happening, guilt about continuing to work at your job and possibly shame as you step into becoming an expert on your child’s Rare disease. The thing is that you also need to remember that you have needs. In this session, we will explore ways to stay connected to what feeds us as human beings as you navigate the changing landscape of your world.

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

We look forward to being with you soon.