Receiving a diagnosis of neuromyelitis optica spectrum disorder (NMOSD) 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 the primary caregiver.
The role of caregiver can become a challenging job, both emotionally and physically. According to the Caregiving in the U.S. 2020 report from AARP and the National Alliance for Caregiving, more than 1 in 3 family caregivers describe caregiving as “highly stressful.”1,2
Caregivers take on many responsibilities to support their loved one during the progression of NMOSD. Recognizing the signs of caregiver burnout can help you better manage the stress and navigate this journey more effectively.
What is caregiver burnout?
Caring for a loved one with NMOSD can be hard. You may be so busy caring for the person with NMOSD that you forget to take care of yourself. Other factors leading to burnout include:1,2
- Difficulty separating your role as caregiver from other roles in your life, such as parent or partner
- Unrealistic demands and expectations
- Feeling out of control
- Losing alone time
- Having conflicting demands
Signs of caregiver burnout
Caregiver burnout looks similar to stress or depression. Signs include:2
- Losing interest in things that used to give you pleasure
- Feeling hopeless, helpless, or angry
- Avoiding social situations or withdrawing from friends and family
- Eating more or less than usual
- Sleeping problems
- Getting sick more often than normal
Take care of yourself
As a caregiver of a loved one with NMOSD, you have an important job to do. However, the most important job is to take the best care of yourself.
Take time for yourself, eat healthy, exercise regularly, stay positive, and continue with your personal and social life as much as possible. Try not to put your life on hold, and 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 stress. If necessary, ask for help yourself.
You may be the support for your loved one, but it is okay to need support as well. If you are feeling exhausted, overwhelmed, or too stressed to think clearly, then you cannot be at your best, either as yourself or as a caregiver.1,2
Find your people
Joining a support group or finding a therapist is a great way to share feelings and experiences, and get helpful advice. You will need someone to talk with openly and honestly or someone to listen to and support you.
It may be reassuring to know you are not alone and others are on a similar journey as you. Although our community has a lot of information regarding first-hand experience with NMOSD, finding information and a network for caregivers like you can be helpful.2
Plan ahead if you can
Being organized and setting realistic goals can help both you and your loved one address each day. Try to be as organized as possible 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 appointments and prescriptions, and try to keep notes of doctor visits, as well as changing medicines, symptoms, or behaviors.2
Adapting over time
There will be many transitions during this NMOSD journey. Researching the care available and adapting to the progression will be essential for a positive outlook. Do not be afraid to ask for help and guidance.
The role of caregiver can sometimes be challenging, from learning about the condition and how best to help your loved one, to remembering to also care for yourself. 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!