If you’ve come to this section of MDA’s website, it’s likely that someone you deeply care about is affected by a neuromuscular disease. It’s common for this type of news to bring with it powerful emotions and an onslaught of questions for which you’re seeking answers. MDA is here to help every step of the way with resources, information and support.
Since neuromuscular diseases are progressive in nature, you’ll find that your caregiving role will change over time to better accommodate your loved one’s needs and abilities. Around the time of diagnosis, you primarily may be providing emotional support and assistance only when asked. As time passes, you may find yourself needing to provide more assistance with daily physical tasks such as bathing, dressing, mobility, and/or learning how to operate new types of medical equipment. While your role as caregiver may become more complex as the disease progresses, this also means you’ll have time to learn the best way to help your loved one. Along the way, your MDA clinic team and local MDA staff stand ready to provide information and support.
MDA health care service coordinators, nurses, social workers and other health care professionals at the MDA clinic can help you find resources for help and support. Additional resources and suggestions can be found on this page and throughout the website, through your local MDA support group and by contacting the MDA office in your area. We encourage you to use these resources, and don’t be reluctant to admit feelings of frustration, exhaustion or loneliness. No one can do it all or do it alone.
At the beginning of your caregiving experience, you may not need help from others. But, your circle of family and friends also are responding to news of your loved one’s diagnosis and truly want to do whatever they can to help. So, start saying “yes” — early and often — to offers of help. Even if you don’t need assistance initially, extra help may be necessary as the disease progresses and by then you’ll already have created a strong support network around you and your family.
Many caregivers find it helpful to build a caregiving team. As the primary caregiver, think of yourself as a captain with troops to whom you can delegate selected tasks. Enlist family members, friends or members of your faith community. Start thinking about building your team as soon as possible after diagnosis. Make a note of people who say, “Let me know if there’s anything I can do to help,” and keep a running list of chores with which well-meaning friends and family can assist. You’ll benefit from their help, and your loved one will benefit from knowing that family and friends have rallied in his/her behalf.
One way to build and communicate with your caregiving team is through MDA’s myMuscleTeam. This free and simple care coordination website allows you to create your own “Muscle Team” of family and friends. The site enables you to easily update your community about your loved one’s health and other aspects of your life. And, it enables you to create a calendar where you can post areas in which you need assistance — such as transportation to medical appointments, meal preparation, yard work or respite.
“Respite” is a term that refers to time provided to caregivers to focus on their personal interests and needs, or to invest time in valuable relationships with friends or other family members. In addition to members of your caregiving team providing these opportunities, you may be eligible for respite services through various public and community-based resources, such as your local Medicare or Medicaid office. Federal regulations don’t permit Medicaid to cover costs for respite care, but states can design their own waiver programs, and many states have multiple waiver programs available for those who qualify. Your MDA clinic team and/or local MDA staff can provide more information about community, state or federally funded respite programs.
MDA support groups are also an important source of emotional strength and fellowship. It’s not unusual to feel overwhelmed in your role as caregiver. Thinking you’re not up to the task is a normal, common reaction. Believe in yourself and keep in mind that, while caregiving can be hard work and carries with it a higher-than-average risk of anxiety, depression and exhaustion, commonly known as “burnout,” it also can be rewarding and filled with many joyful times. Remember that you’re not alone in your journey as a caregiver, and that taking care of yourself is as important as taking care of your loved one.