Familial amyloid polyneuropathy is a disease with an onset that appears randomly. With a large range of ages at which symptoms first appear, news of a diagnosis can blindside both those with the disease and their caregivers.
The second phase of the grieving process is anger. For a new caregiver, it’s also easy to become angry at the circumstances. After all, neither you nor the person with the disease asked for this. But left unchecked, that anger can become extremely dangerous for both the caregiver and their loved one.
Anger is a necessary part of the grieving process and is a normal reaction to adversity. For someone new to the grieving process, anger will manifest in the form of the question, “Why me?!” We often experience life oblivious to its random, seemingly cruel nature, until adversity strikes.
Caregivers must understand that caregiving is a demanding task. At some point, caregivers will become frustrated and fatigued. It may seem as though the time and effort devoted to caring for a loved one are not bearing fruit.
One thing that caregivers must understand is that their loved one feels the same emotions. Caregiving is a journey that you embark on together with your loved one as you both respond to the diagnosis.
Responding to initial anger
As my wife and I began our roles as caregivers for my mother-in-law, the symptoms of her polyneuropathy were becoming too unbearable for her. Things that were once normal to her, such as hugs, were impossible without an extreme amount of pain. She was losing hope and the will to live.
We were becoming frustrated at our seeming inability to bring any joy to her life. All of our efforts seemed to be for naught. What we didn’t realize was that we were focusing inward. We were expecting her to notice that we were helping, instead of empathizing with her feelings. Sadly, most caregivers will never fully empathize with what their loved one is experiencing.
A loved one suffering from a disease such as polyneuropathy experiences an immense amount of pain. This debilitating illness makes once-basic movements extremely difficult. The pain and grief that a loved one requiring care experiences will cause them a great deal of anger. Unfortunately, the caregiver will have this anger directed toward them at times.
How to respond to your loved one’s anger
According to the AARP, the best way for caregivers to manage their anger is to follow empathy with productive assertiveness. New caregivers are experiencing something completely foreign to them in taking on caregiving responsibilities. Over time, incurable disease such as familial amyloid polyneuropathy will require family members to turn care over to medical professionals.
While becoming a new caregiver, the best approach to managing anger is to grab the process by the reins and do everything you can to mitigate setbacks. Addressing potential setbacks such as issues with treatments, prescriptions, and vendors is a great way for caregivers to redirect anger.
My sister-in-law ultimately redirected her anger during the process of caring for my mother-in-law to writing. This redirection into productive means resulted in the publishing of both her first and second books.
Understand what you can’t control
The onset of a disease such as polyneuropathy is random. As caregivers, we must not let the uncontrollable nature of its arrival weigh us down. As Roman Emperor Marcus Aurelius said, “How much more grievous are the consequences of anger than the causes of it.” Being a caregiver requires inhuman levels of care and empathy. In order to provide your loved one with the best care, learn that much of what brought you there is beyond your control. As caregivers, we must harness our anger and redirect it to productive means.
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.