By Padma Gordon
Anticipatory grief is a tender and often complicated part of being a caregiver. When you are living with the uncertainty of a Rare disease, you may find yourself contemplating the loss of someone you love, changes in their quality of life, or even your own mortality. How do you talk about these feelings with the people in your life? How do you talk about them with your Rare loved one? There is no perfect way, and you don't have to navigate these conversations alone. Allow yourself to be honest about what you are feeling, while also making room for your loved one's feelings and fears. Many people in our Rare community find comfort in leaning into their spiritual beliefs, while others find support through trusted friends, therapists, or support groups.
Research suggests that thoughtfully acknowledging our mortality, rather than avoiding the subject, can help us approach life's final chapters with greater acceptance and preparedness. When difficult emotions arise, come back to your body. Feel your feet on the ground, notice your breath, and gently remind yourself that you are here, in this moment. Notice when your mind begins writing catastrophic stories about what might happen. You don't have to follow every thought into the future. Take things one day at a time, and allow yourself to grieve without giving up the preciousness of being alive.
There is a beautiful balance between living fully in the present and preparing practically for the future. Consider writing down the daily responsibilities you carry as a caregiver, including medications, appointments, routines, important contacts, and the little things that someone stepping in would need to know. Organize important documents, review financial arrangements, discuss backup caregiving plans, and identify people who could help if you were suddenly unavailable. These conversations may feel uncomfortable, yet they can offer tremendous peace of mind. And don't overlook your emotional preparation. One participant in our group shared a beautiful practice she called a "Marlo moment," named after her beloved partner. She intentionally gave herself five minutes to grieve, to feel the sadness, and to consciously acknowledge the reality of loss. Then she returned to the fullness of her day. What a lovely reminder that we can make room for grief without allowing it to consume our lives. You might create your own small ritual, journal, spend time in nature, talk with someone you trust, or set aside a few minutes each day to feel whatever is present. Keep yourself engaged with life. Take the trip, see your friends, dance, laugh, and do the things that nourish you. Even when it feels scary to step away from your caregiving responsibilities, remember that your needs matter, too. Ask yourself: How can I live a life in which some of my deepest needs are met while I am also caring for someone I love?
Caregiving means riding an emotional roller coaster, navigating experimental treatments, uncertain diagnoses, the absence of a cure, and constantly changing circumstances. You may find yourself moving between hope, fear, grief, determination, and exhaustion, sometimes all in the same day. It can be tempting to become very scientific and task-oriented as you navigate the next appointment, medication, or treatment decision. Those things matter, and so does your emotional life. Give yourself permission to feel the waves rather than pushing them away. Advocate for your Rare loved one, and advocate for yourself with the same devotion. Ask for help, establish boundaries, seek respite, and make time for the relationships and activities that remind you who you are beyond your caregiving role. Most importantly, don't postpone living until things become easier or more certain. We don't know what tomorrow holds. Enjoy your life, celebrate the ordinary miracles, and allow yourself to experience both the joy and the sorrow. Quality of life matters deeply, not only for the person you care for, but for you, too. Taking care of yourself is not separate from caring for your Rare loved one. It is an essential part of it.
Coming Up On November 10: Boundaries Hold Us (Stage 3: Shifting Responsibilities)
What do you do when your relatives do not fully understand the realities of your loved one’s condition or how much being a caregiver asks of you. People may offer well-intended suggestions, or be in denial about your medical reality. It can be frustrating when people judge or simply have no clue about what you are experiencing on a daily basis. They don't know that you are continuously traversing the unknown and how terrifying this can be. During this stage, learning to set clear and loving boundaries becomes essential—not to push people away, rather to protect your energy, your patient loved one, and honor the truth of your lived experience. Please join us.
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.
