In episode 6 of The Caregiving Soul, Dannelle speaks with Shanae Rhodes about the feelings of loss and grief when caring for a loved one who is experiencing brain change.
Grief is complex, messy, and rarely a linear experience. When caring for a person with dementia, it feels like we are mourning the person they used to be. As their dementia progresses, we may have a variety of phases of grieving including denial, frustration, anger, guilt, sadness, and finally acceptance. These phases rarely happen in any particular order.
Being open with yourself about your grief and feeling those emotions fully can be so difficult, especially with everything else going on. But it is the first step toward processing these complex feelings and taking ownership of your grieving experience. If you have the opportunity, seek out a support group or therapist.
The frustration of managing this disease and the influx of emotions understandably distracts focus from connecting with our loved one as a person. But this can also be an opportunity to celebrate who they are becoming. Once you have begun the process of grieving and reframing your experience as a care partner for a loved one with dementia, there is an opportunity to find strength and connection through the caring process.
Grieving while still providing care for your loved one is not one-size-fits-all. But knowing that you are not alone is key. Your feelings, no matter what they may be, are valid. You deserve to process and feel any emotion. You can grieve, while simultaneously accepting your current situation and perhaps even finding pathways to gratitude in the process.
Shanae Rhodes a Registered Nurse specializing in adult care. As a student researcher and founder of My Sister’s Keeper, a virtual health-education platform dedicated to women of color, Shanae is committed to a career in community service and research that advocates for social justice for underserved and ethnically marginalized communities. Shanae’s current research is focused on gaining a more in-depth understanding of the experience of African American women who are dementia caregivers and their mental health.
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