My philosophy for family caregivers instills patient dignity, self-worth

A key approach focuses on the way caregivers communicate

Ezekiel Lim avatar

by Ezekiel Lim |

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My mother-in-law has always valued her autonomy. The pain of her peripheral neuropathy, the hallmark symptom of familial amyloid polyneuropathy (FAP), leads her to feel helpless at times. This helplessness gives way to grief and despair.

Our family does our best to let our actions demonstrate how important she is to us. It is my belief that familial caregivers must instill a sense of dignity, purpose, and self-worth in the ones they care for. The easiest way to affirm the loved ones we care for is with the manner in which we communicate on a daily basis, letting them know that they are valued and not taken for granted.

The role of caregivers in patient affirmation

Humans are unique individuals with different values, preferences, and life experiences. Caregivers should recognize and honor their patients’ personhood by involving them in decision-making, respecting their choices, acknowledging their life stories, fostering a sense of self-worth, and maintaining their identity.

When communicating with my mother-in-law, I support her by letting her know about daily successes in my life, asking for her opinion on things, and sending her funny videos. I found that making her feel valued for her input goes a long way in affirming her and helps her maintain a sense of normalcy in her interactions with family members.

Living with FAP can be emotionally challenging due to the physical limitations and discomfort it can cause. Caregivers who treat their patients with respect and dignity provide emotional support that is crucial for the patient’s well-being. Feeling respected and valued can help alleviate feelings of isolation.

Caregivers should promote independence among FAP patients by encouraging them to perform tasks to the best of their abilities. This empowerment helps maintain their self-esteem and self-confidence, even in the face of physical limitations.

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Empathetic communication in caregiver-patient relationships

I share my wins and losses with my mother-in-law. Having her be a part of the dialogue of my life helps keep her engaged and feeling valued. Even in small things like sharing videos from social media, our interactions are intentional and filled with affirmation.

Empathy in caregiving relationships is crucial. When caregivers treat FAP patients respectfully, they create an environment where open and honest relationships are possible. This relationship helps them express their needs, concerns, and preferences, helping them feel valued and leading to better care and improved outcomes.

Maintaining empathy can ensure that caregiving relationships remain positive and beneficial, allowing patients to trust and rely on their caregivers for continued support. Caregivers can achieve this by sharing feelings and experiences with the patient, asking for their opinions, and by making them laugh.

Caregivers should always maintain the same level of respect for FAP patients, just as they would for anyone else. By doing so, they contribute to fostering a positive and productive caregiving relationship. Upholding these principles benefits the patient and promotes a more compassionate and ethical approach to healthcare overall.

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, and are intended to spark discussion about issues about familial amyloid polyneuropathy.


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