The onset of familial amyloid polyneuropathy forces daunting shifts in the relationships between caregivers and their loved one. When my mother-in-law was diagnosed with polyneuropathy, she began to despair of life itself. Her sensitivity to touch made things that were once part of everyday life, such as hugging, nearly impossible. The pain became too much for her to bear. As she coped with the disease’s intrusion, significant life changes awaited her caregivers as well.
Caregivers for polyneuropathy patients must address changes with a process that incorporates the five stages of grief. As the severity of a loved one’s condition becomes increasingly evident, caregivers must account for the time and energy necessary to provide optimal support.
The five stages
The patient and their loved ones share the initial impact of a diagnosis. The feeling of “this can’t be happening” underlies every family activity. To effectively address this, caregivers must adapt to a position of strength. This includes finding a powerful support group with emotional aid that the caregiver can funnel to the patient.
Suffering from polyneuropathy is not a chosen role. Likewise, those designated to care for patients don’t choose their circumstances. This brings front and center the reality of life’s unfairness. Caregivers may be angry that their situation has taken a drastic turn with their loved one’s diagnosis. The time and energy spent providing care to a loved one with polyneuropathy is something unreturnable. Still, anger is a natural part of the grieving process. Caregivers’ anger must be channeled and molded into energy to provide the best possible care to a loved one suffering from the condition.
Bargaining often comes in the form of appealing to a higher power. When someone is first faced with a diagnosis or beginning a role as a caregiver, it’s common to plead prayerfully, “Help me just this once, I promise I’ll be good.” Life isn’t fair and being a caregiver brings that notion to the top of the mind. Still, bargaining must be addressed with a positive frame. Instead of “make this go away,” caregivers must seize the opportunity to address circumstances with an eye on personal growth. You will learn much more about your strength, compassion, and love for a suffering family member that way.
Despite the calls for strength addressed in previous paragraphs, all caregivers must remember their humanity. A loved one is suffering. Depression is one of the most logical forms of grieving in this scenario. Things aren’t going your way and your loved ones don’t seem to be getting better. A strong support group helps pick you up when your role as a caregiver doesn’t seem to bear any fruit. Caregivers best cultivate their love for the patient through a support group. Without one, depression is a malicious voice in the head that emphasizes helplessness. You need voices to say the situation is not helpless.
Instead of feeling pity for yourself and your loved one, view the situation as an opportunity. If a parent suffers, this is your call to take action to thank them for raising you. If a spouse hurts, this is your chance to make good on the phrase “in sickness and in health.” If the patient is someone you haven’t had the best relationship with, consider that you will grow by enduring this trial and showing love to someone who might not have done the same if in your shoes. By accepting the circumstances, caregivers are empowered to move forward and address the new challenges they face in supporting a loved one who is suffering.
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 multiple sclerosis.