Tips for LEMS Caregivers

A person who has a rare genetic disorder such as Lambert-Eaton myasthenic syndrome (LEMS) may require frequent help from caregivers to accomplish everyday tasks. As a caregiver, you often may be stretched to the limit meeting the needs of the patient.

People with LEMS have muscle weakness, mainly in the lower limbs. They also may experience muscle stiffness, fatigue, pain, facial weakness, drooping eyelids, and problems with swallowing. Anxiety and depression also are common.

While these symptoms can pose many challenges for people with LEMS, they also can overtax you as the caregiver. Here are some tips to help you cope with the stress of caregiving.

Practice self-care

Due to the wide-ranging symptoms of LEMS, your assistance as a caregiver is needed. However, to be able to provide that assistance, you must take care of your own emotional and physical well-being. It’s important to avoid caregiver fatigue or burnout.

Be sure to exercise, eat healthful foods, get sufficient sleep, and take respite breaks often. Carve out time to do things you enjoy, or new activities you want to try. Get regular medical checkups and don’t ignore signs of possible ill health, or symptoms of depression. It is not unusual for caregivers whose lives have been radically and unexpectedly changed by caring for a loved one to develop depression disorders.

Seek support from other caregivers

Because the clinical signs and symptoms of LEMS are not specific, diagnosis is challenging and can take a long time. You may have been with the patient since the diagnostic journey began.

In any case, it’s important to know that you are not alone. A caregiver group can provide validation, empathy, and encouragement. Look for one in your community. Often, the healthcare center where the patient you are caring for is treated will know of one.

Check local support groups to see if they also offer resources for caregivers. Many LEMS patient groups can help caregivers as well.

Accept offers of help

Admit to yourself and others that you could use a hand. Then, let them help you. It’s best to be specific in suggesting things others can do to assist you, such as preparing a meal, running an errand, or picking up groceries, for example. Also, take advantage of local resources for caregivers, such as an Area Agency on Aging.

Organize medical information and legal documents

Knowing that the patient’s medical and legal information is current and easy to find can help lower stress levels. If you’re called upon to manage a patient’s finances, make sure legal and financial documents such as insurance policies and power of attorney are in place.

Focus on what you can do

Although some feelings of guilt are normal for caregivers, know that no one is a “perfect caregiver.” Believe that you are doing the best you can at any given time, and are making the best decisions.

Set realistic goals

Break large tasks into smaller steps that you can do one at a time. Prioritize, make lists, and establish a daily routine. Don’t feel bad about turning down requests that are draining.

Be open to new technologies

Caregiving for someone who has LEMS can be a full-time job, particularly during symptom flares. You likely help manage doctor appointments, provide transportation, and make sure the patient takes their treatments on time. You also may ensure that your loved one is receiving any assistive devices they may need, such as aids for breathing, communication, walking, and dexterity.

There are lots of cutting edge technologies that can make your life as a caregiver easier. Such technologies also can help you to keep the person you are caring for as safe and healthy as possible. Take advantage of these helpful tools.

Last updated: Oct. 19, 2020

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Lambert-Eaton News 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.