The diagnosis of a disease like familial amyloid polyneuropathy in a loved one has a profound impact on the daily life of a new caregiver. Faced with the future implications of this diagnosis, the caregiver likely experiences a range of emotions best defined by the five stages of grief.
Denial as an early stage of grieving
Denial is the first stage in the grieving process. New caregivers experience denial themselves while also needing to support their loved one through it. When my mother-in-law’s polyneuropathy symptoms (joint pain and heightened sensitivity to touch, for example) ramped up, our family experienced a range of unfamiliar emotions.
For my wife and me, denial initially came in the form of unwillingness to ask questions. Coping with denial involved questioning and introspection. Could we do more? When would we need to consider paying for advanced treatments? As a married couple, we were unfamiliar with how our roles as caregivers would grow. We felt unprepared to address the situation.
My sister-in-law is the most experienced caregiver of the family. With a few years of experience working as a nurse’s aid, she was the most qualified caregiver in the family. She assumed her responsibilities as a caregiver while facing her own health issues. For my sister-in-law, denial came in the form of increased mental strain caused by selflessly casting her own health issues to the side.
Denial and mental health in caregivers
Caregiving is a labor-intensive mission and its responsibilities eventually take an unavoidable psychological and physical toll on even the most experienced caregivers. It’s imperative for them to care for their own needs before addressing the needs of others.
According to the American Psychological Association, caregivers face an increased risk of developing mental health disorders. The Anxiety and Depression Association of America states that 40-70 percent of caregivers begin to show symptoms of depression. Symptoms include lack of sleep, lack of enjoyment of activities, and feelings of exhaustion.
To adequately address the grieving process, new caregivers must understand its early stages. The denial stage amplifies the unpredictability of the situation. As a family, we support each other in caring for my mother-in-law. Whether through working in shifts or offering verbal encouragement, having someone with similar experiences offer encouragement alleviates the burden of the grieving process. Finding a support group is essential for someone beginning the process of caring for a loved one. Caregivers must be sure to continue with their own lives while managing their responsibilities.
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.