The diagnosis of a rare disease in a loved one is enough to usher a new caregiver through a cognitive process caused by an onslaught of emotions. This cognitive process, prompted by a traumatic event and known as the five stages of grief, is the grieving process a caregiver will experience alongside a recently diagnosed loved one.
The unexpected and uncontrollable onset of a rare disease will take patients and caregivers through denial, anger, bargaining, and depression. While seemingly daunting, these stages of grief prepare new caregivers for the strengthened resolve and newfound purpose that the acceptance stage of grief brings.
Patients and new caregivers must be careful not to assume that the acceptance stage of grief is a resignation to the inevitable. Rather, those navigating the five stages of grief must view the acceptance stage as the realization that current circumstances are now a reality. Acceptance is the acknowledgment of one’s new circumstances and the receipt of them with a newfound sense of duty.
Acceptance of our circumstances
My mother-in-law’s diagnosis and experience with familial amyloid polyneuropathy negatively affected her self-worth. One of our duties was to reassure her that life was still worth living. The acceptance stage involved educating ourselves about the causes and symptoms of polyneuropathy. Understanding how the disease functioned gave us a much clearer course of action in addressing her illness.
A thorough understanding of the side effects associated with my mother-in-law’s polyneuropathy treatments was important to the acceptance process for our family. We knew that the treatments would have an increased presence in the household. Understanding how these therapies would affect her helped us support her when the side effects seemed overwhelming. When my mother-in-law began having issues with dizziness and memory loss, we were there to support and encourage her.
Embracing lifestyle changes in the face of illness
Our family’s lifestyle embraced the changes needed to support someone with polyneuropathy. As my mother-in-law needed assistance with walking, accessibility became the top priority. My father-in-law installed a wheelchair ramp from the driveway in the back of the house to the patio doors. He also renovated two of the bathrooms in the house for increased accessibility. My wife and I included accessibility as a preferred amenity when shopping for our own house. Accommodating a family member with the physical ailments stemming from a rare disease is one of many ways caregivers adopt the acceptance stage of grief.
Support groups in the acceptance stage of grief
Caregivers must approach the acceptance stage surrounded by their own support groups. Having someone to encourage you as you navigate every stage of grief is crucial. It is easy to become discouraged by the unchangeable nature of these circumstances. Therefore, caregivers need someone to speak truths to them when they are prone to rumination.
Accepting the role of caregiver
The best thing you can do is to give yourself completely to your new role. As Marcus Aurelius once said, “Accept the things to which fate binds you, and love the people with whom fate brings you together, but do so with all your heart.” This set of circumstances, while permanent, should not break the bonds that you have with your loved one. As a caregiver, you are not only supporting an ailing loved one, you’re facing their illness with them.
Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.