Juggling priorities can be a struggle for family caregivers

How we balance the needs of our family and our loved one with neuropathy

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by Ezekiel Lim |

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As I mentioned in my last column, my mother-in-law’s peripheral neuropathy symptoms seemed to take a turn for the worse in April. At the same time, my wife and I were experiencing additional life changes with the birth of our second daughter. Our priorities shifted, and we were busy taking care of the new member of our family. Then, within weeks of my daughter’s birth, a close relative on my side of the family died.

For patients with familial amyloid polyneuropathy, peripheral neuropathy can be debilitating and require the presence of a caregiver. A caregiver can make the patient’s daily life more navigable by helping them with tasks such as lifting, feeding, taking medications, and traveling. But family caregivers must also focus on their own daily lives and needs.

Following are some of the reasons a caregiver may need to shift their priorities.

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Making time for your marriage

Caregivers often have to juggle caring for the patient and attending to their immediate family life. For married caregivers, expectations from the patient and the spouse regarding how the caregiver uses their time may conflict.

Some patients have multiple physical and emotional needs that need nurturing. Someone married to a caregiver may feel that their spouse’s emotional priorities are tied up with caring for a loved one. The spouse of a caregiver may feel neglected at times. Thankfully, my wife and I share caregiving duties for my mother-in-law with other close family members so that we can make time for each other.

The possible tension between the patient’s needs and the spouse’s needs may be too much for a caregiver if they’re not meeting their own physical and emotional needs. Caregivers must take time to focus on their own mental health and family life. This helps them to avoid burnout and feel more refreshed. It may also help caregivers alleviate any anxieties their caregiving duties bring forward.

Attending to your children’s needs

Many caregivers may have or be expecting children of their own. The needs of the patient and the children are equally important. Some caregivers may feel conflicted when one person’s needs overtake another’s. When this happens, the caregiver should step back and attend to their family or seek help from another family member or friend who can assist in caregiving.

As my wife and I have had to focus on our new child, other family members have stepped in to help my mother-in-law with her current setbacks. The main issue we encountered was my mother-in-law’s disappointment at not being able to see her grandchild right away due to her pain level and required treatments.

Thankfully, my mother-in-law was able to see both of her grandchildren about six weeks after our youngest daughter was born. She was able to carry only the infant, as the toddler was heavier than she was comfortable with. We also had to give my mother-in-law privacy, as she now requires periodic treatments for a large sore on her left foot. Caregivers must be aware of certain treatments that may visually be too much for a child. If they feel comfortable doing so, caregivers may answer some of the child’s questions about certain caregiving practices.

When issues arise that result in conflicting priorities, a caregiver must rely on assistance from family members and friends. If the patient is a family member who’s actively invested in the caregiver’s situation, involving the patient in manageable ways may help them feel wanted and appreciated.

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 pertaining to familial amyloid polyneuropathy.


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