5 Helpful Tips for Myasthenia Gravis Caregivers

Receiving a diagnosis of myasthenia gravis (MG) can be a life-altering experience, not only for the person with the diagnosis, but also for the spouse, child, parent, or friend who becomes that person's primary caregiver.

The role of caregiver can be a challenging job, both emotionally and physically. Caregivers take on many responsibilities to support their loved ones. The better prepared you are in managing life as a care partner of a loved one with MG, the easier the outlook will be for everyone.

Take care of you

As the caregiver of a loved one with MG, you have an important job to do. However, the most important job is to take the best care of yourself. Take time for you, eat healthy, exercise regularly, and continue with your personal and social life as much as possible.

Continue to enjoy your hobbies or social groups as much as you can. Caregivers should also try to maintain as normal a schedule as possible. Find ways to relax and manage the stress.

If necessary, ask for help yourself. You may be the support of your loved one, but it is certainly okay to need support as well. If you are feeling exhausted, overwhelmed, or too stressed to think clearly, then you can’t be at your best, as a person or as a caregiver.

Educate yourself

An effective caregiver is a well-informed caregiver. Educate yourself as much as possible about your loved one’s diagnosis, so you will know how to help. Learn as much about managing MG as possible, without overwhelming yourself with information. Information overload is certainly an issue, but, you may be more effective if you are well-informed and advised.

Using support groups or online communities like ours can be a great place to start without feeling inundated with massive amounts of information. Educating yourself will also help prepare you for any changes in your loved one’s symptoms or behavior.

Join a support group

Joining a support group is a great way to share feelings, experiences, and gain helpful advice. You may need someone to talk with openly and honestly, or someone to listen to and support you.

It may be reassuring to know that you are not alone and that there are others on a similar journey as you. Although our community has a lot of information regarding first-hand experience with MG, we also have a network for caregivers!

Stay organized

Being organized and setting realistic goals can help both you and your loved one address each day. Try as much as possible to be organized with medical information and records.

Focus on making daily or weekly to-do lists, and working with your loved one to make plans and goals. Organize doctor’s appointments and prescriptions, and try to keep notes of your doctor's recommendations, as well as recording changing medicines, symptoms, or behaviors.

Adapt to changes

There may be ups and downs during this MG journey, so research the care available, and be prepared to adapt to fluctuations. Don’t be afraid to seek out help and ask for guidance.

It is important to adjust to your new role while maintaining a healthy and supportive relationship with your loved one. Let us know how you take on the responsibility of being a caregiver, or how your caregiver makes an impact on your journey!