Help for the unsung heroes of healthcare
The challenges of living with Lambert-Eaton myasthenic syndrome (LEMS) are not just felt by the patient—we know that whoever is caring for the patient is also affected. Being a caregiver is not always easy, but it is one of the most important roles that a person can play. To support those who are supporting the patients, we offer the following information and resources for caregivers.
THERE WAS A LOT OF EMOTIONAL PAIN FOR ME, JUST AS HER CAREGIVER.
Mark describes caring for Jamie
Jamie’s husband, Mark, talks about the struggles his wife went through with LEMS prior to her diagnosis, and how the right treatment helped turn things around.
TIPS FOR LEMS CAREGIVERS
Start a conversation
Whether your role as a caregiver is small (providing an occasional lift to the grocery store or the doctor’s office) or more time-consuming (making meals, handling bills, taking time off from work), it’s important to have an honest conversation with your patient now about their values, preferences, and concerns regarding their healthcare, financial situation, and future plans. LEMS is a progressive disease, and chances are, your patient will require additional assistance later on. Don’t wait until the situation worsens or a crisis occurs to find out what they’re thinking. Download this helpful Doctor Discussion Guide.
Build your support team
Don’t try to handle all of the responsibilities of caregiving by yourself. Even when it’s “part-time” support, it may sometimes feel like a full-time job. Ask other family members or friends of the patient if they would be willing to cover some of the responsibilities, or at least pitch in occasionally when you have a conflict or simply need a break. Also, consider other sources of support, such as the patient’s current or former work colleagues, as well as members of any clubs, religious community, or other organizations that they may belong to.
Tap into professional resources
If you discover that your loved one may need more support than you or your team members can provide, there are other sources that you can turn to to find help. Consider the following:
Find local support services—Most communities in the US offer support services to people age 60 and over and their caregivers, such as providing home-delivered meals, transportation, and adult day care. To find these services in your area, visit eldercare.gov.
Consult with a professional—Sometimes a patient’s needs require the services of an expert. If you’re having trouble managing issues related to mental health or finances, talk to a nurse or social worker to find a professional who can help. If you or your patient are still working, check with an employer to see if they offer any assistance programs. You may also find the professional help you need using the Eldercare Locator.
Helping a patient with LEMS stay as independent as possible in their own home may require modifications. Changes in their ability to see, walk, rise from a chair or toilet seat, and climb or descend stairs may put them at risk for a fall or other injury. Consider installing nightlights, handrails in the bathroom and along staircases, and/or adjustable shower chairs to make their home safer and more comfortable. You can find more simple fixes to make home life more secure at aarp.org/homefit.
WHEN I HEARD EMILY HAD LEMS, THE FIRST THING I DID WAS GET ON THE INTERNET.
Laura discusses her approach to caring for her daughter with LEMS
In this video, Laura describes early feelings of helplessness but then how taking charge of the information search helped Emily find the care she needed to become functional again.
CARING FOR YOURSELF
Their health and wellness are tied to yours
Being someone’s support person—in addition to handling your own personal or professional responsibilities—can really add stress to your life. With the primary focus on the patient with LEMS, it’s easy to lose focus on your own needs. But that’s a misstep that can put both of you at risk. Remember, you can’t care for them if you’re not well yourself.
Here are some tips and related websites that can help you stay healthy and well:
Start with the basics of self-care
Be sure to exercise regularly, eat healthy, and get plenty of sleep.
Download a fitness app now to get started:
Schedule some “me-time”!
To keep a positive outlook and minimize caregiver fatigue, reserve a few hours each week for yourself: Read a book, take a walk, grab a catnap, or have lunch with friends—whatever makes you feel like you’re also living your best life.
Me-time can happen out of the house or at home; here are two options you can try right now:
Join a support group
A caregiver group can provide empathy, validation, and a sense of community. You may also be able to network and help each other out when conflicts arise.
Connect with other caregivers now at:
Don’t try to be a hero!
Ask for help when you need it. If someone offers to help, accept it. It’s likely that your example and generosity will inspire others to want to help. It will make them feel great and give you some time back in your day.
Find caregiver assistance in your community or make an appointment with an online therapist for yourself or your loved one:
*These companies are not paid by or partnered with Catalyst Pharmaceuticals, Inc.
I push Jerry sometimes, and at other times, it’s about being patient.
Phyllis discusses her approach to caring for her husband who’s living with LEMS.
In this video, Phyllis describes how she has learned to balance self-care with the responsibilities of taking care of her husband, Jerry.
More content is on the way for LEMS Aware, including video stories with real patients who are living and thriving with LEMS. Sign up to stay informed about new additions to the website as well as other resources that become available.