The Long & Winding Road of Caregiving
By Padma Gordon
Caregiving asks more of you than most people will ever fully understand. You are living inside a medicalized rhythm—appointments, tests, waiting rooms, and often more questions than answers. When there is no clear diagnosis, or when the path ahead is uncertain, the emotional weight can feel relentless. Fear, grief, anger, exhaustion—all of it rises. The real question becomes: how do you stay with what is here without becoming overwhelmed? It begins with allowing your experience to be real and acknowledging, “this is hard,” then, letting that felt-sense truth have space.
One of the most powerful things you can do is pause. In the midst of constant doing, thinking, and problem-solving, a simple pause interrupts the spiral. Even a few moments of stillness can give your nervous system room to settle. From that place, you can begin to hold both sides: the grief for what might have been, and the appreciation of what is still here. You don’t have to do this alone. Caregiving is too much of a heavy load to carry solo—practically or emotionally. Let others support you, whether through tangible help or compassionate presence. And if faith is part of your life, lean into it. Many caregivers find that trusting something larger than themselves reassures them as they navigate the unknown.
Living with a loved one with a rare illness means living with uncertainty. You may be preparing for loss while also continuing to hope. You may wonder how to plan for the future when nothing feels guaranteed. This is the tender, difficult duality you are being asked to hold. As one caregiver wisely said, “I can’t change what’s happening, and I can stop making myself crazy.” What you can do is care for yourself. Move your body. Rest when your loved one rests. Listen closely to what your body is asking for. Allow yourself small comforts, notice if guilt arises and do it anyhow…because your well-being matters. When loss comes, whether anticipated or sudden, you may find yourself in survival mode. Be gentle and practice self-compassion. And remember: even in the vast unknown, your capacity to love, show up, feel and be present is not only enough, it is the deepest expression of why you are here.
Coming Up Next Week: Theme: 10 Essential Tips for Sustainable Raregivers™: Replenish with Self-care (10 Tips for Sustainable Raregiving
Caregivers can become easily depleted at any stage of the journey and at times even thinking of yourself can feel like another thing on your to-do list. However, it’s important to start somewhere to break the cycle of stress, overwhelm and depression. It takes practice to put your needs first and as you do, you will have more energy to care for yourself and others.
Take some time to connect with who you were before you became a caregiver. What did you like to do? What inspired you or gave you pleasure? What filled you up when you were feeling drained or down? We will come together to drink from the well of our pre-caregiver selves. Join us for an uplifting session.
Please 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.
