Multiple Sclerosis Foundation - 10 Tips for Avoiding MS Caregiver Burnout

Multiple sclerosis is an unpredictable disease that according to Healthline, affects 400,000 people in the U.S. and 2.5 million worldwide. MS can occur at any age, but is most prevalent in adults between 20 and 50. Because of the age and stage of life that MS onsets, MS caregivers can face an unfair burden. Caregiver burden is defined as the type of stress or strain that caregivers experience related to the problems and challenges they face as a result of the status of the care recipient.

The caregiver burden that MS presents early in life can be related to circumstance. MS typically onsets in early adulthood when people are getting established, starting a family or at their peak working years. When your priorities are starting a family or career, MS is an unwelcome guest. The other factor in MS is that for the majority patients who are newly diagnosed there are periods of relapse followed by remission. When a person is in remission, there may be less caregiving required, whereas when someone in in the middle of a relapse, caregiving may be a round-the-clock requirement.

MS can affect vision and mobility making caregiving a physical task. A caregiver may be required to help with things such as getting out of bed, standing up, getting in and out of the shower, getting on and off the toilet, getting dressed and walking. This can be especially hard on a caregiver physically if they are not trained on the proper transfer techniques.

MS can also affect cognition and memory. Cognitive issues can affect emotions, moods, intimacy, and the ability to work and communicate effectively. This can put a strain on your relationship especially if life plans like marriage, work, or a family are affected by the disease. This kind of burnout can lead to depression, resentment, and in some cases, end relationships.

Caregiver burden can be managed. Here are ten tips for avoiding MS caregiver burnout.

Seek support from others. Whether it is other caregivers, family members, friends, or a counselor, it is important to have someone that will listen and support you. Being a caregiver can be isolating so make sure you have a support system of people you trust to help you through the difficult and lonely times.
Do not be afraid to ask for help. Asking for help is hard, but so is caregiving. Caregiving can be overwhelming, especially if you are young and raising children along with taking care of your partner. Communicate with your friends and family so they are aware of your situation and be specific about what kind of help you need.
Take care of yourself first. Caregiving is hard work and it takes a toll on you, both physically and mentally. If you don’t take care of yourself, then you won’t be able to take care of your loved one. Caring for yourself is one of the most important and one of the most often forgotten things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too.
Don’t lose yourself. You are still the person you were before you became a caregiver. Make sure that you make time to do the things you love. It is healthy to go out, see a movie, have a spa day or meet with friends to maintain your identity.
Attend doctor’s appointments. Attending doctor’s appointments gets you involved with the plan of care, including risks and benefits of treatment options. Without being there, you are relying on this information second-hand and may miss out on important details. Another great example is patient transfers. As a caregiver by attending physical or occupational appointments, you can learn how to safely transfer a person from the bed, shower, or toiler without hurting yourself in the process.
Seek mental help. Caregiver burden has been associated with depression and other psychological disorders. Talking to a mental health professional to discuss your caregiving role can help address any thoughts or feelings affecting your ability to provide care.
Talk about advanced directives. The problem about the future is that we never plan for it while we are healthy. While it is an uncomfortable conversation, talking about goals and wishes for the end of life early on provides peace of mind, even if wishes may change over time, is an important conversation for everyone to have.
Educate yourself. Did you know that there are different kinds of MS? Did you know that there are currently fifteen approved disease-modifying treatments for MS? Do you know the role that diet, supplements like vitamin D or exercise can play in MS? There are a lot of educational resources available online from reputable sources, like MS Focus. This education can help from day to day and also create questions to discuss with your neurologist.
Attend MS Events. Organizations like MS Focus host educational events all over the country. These events are places to learn more about MS and meet other caregivers.
The most important tip is to not be too hard on yourself. MS is unpredictable. It is a life-long battle, that neither of you signed up for. There are going to be ups and downs, but in the end, you’ll find it is worth the fight.