While we honor the important role of care partners throughout the year, November is an extraordinary month as we recognize National Family Caregiver’s Month. MS is unpredictable, and having a loved one diagnosed with it can be scary and overwhelming. MS symptoms may greatly vary from individual to individual. An individual with MS may need help with daily activities and these challenges might get more complex over time. Being a care partner requires a lot of patience, understanding, empathy, and flexibility. Here are some things to keep in mind as you provide care to an individual with MS:
- Be aware: Learn about MS and its symptoms. Keep yourselves informed of the different types of disease-modifying therapies available to slow the progression of MS. MSAA’s My MS Manager app can help track symptoms and record disease activity and can even be shared with your partner’s healthcare provider. Noting down symptoms affecting your partner will enable you both to ask questions to the healthcare team during appointments.
- Support: Be the pillar of support for your MS partner as they might encounter significant changes in the way they feel daily. Individuals with MS may experience fatigue, numbness, walking difficulties, vision loss, bladder and bowel issues from time to time, and other symptoms. If you feel you need extra support, it will be a good idea to seek professional help.
- Support groups: Take advantage of MS support groups where you can share your thoughts and concerns in a safe and confidential environment and receive support, education, and mutual aid.
- Home modifications: Make your home MS-friendly. Modifications like widened doorways, ramps, raised toilets, motion-activated lights, installation of grab bars, usage of nonskid bath mats, lowered kitchen counters, etc., are a few of the many things you can do to make your home more accessible. These home adaptations can make it easier for an individual living with MS to be more independent and empowered. Awareness of the different options can allow you to determine what will work best for your situation.
- Resources: Remember that you and your MS partner are not alone in this journey. MS organizations like MSAA can provide information about MS-related resources available in your local community as well as nationally. MSAA has a toll-free Helpline where you can contact Client Services Specialists to find out about resources for the MS community. They can be reached at (800) 532‑7667, extension 154, or via email at MSquestions@mymsaa.org, Monday through Friday from 8:30 AM to 8:00 PM (Eastern). Resources are available on the MSAA website in Spanish as well.
Lastly, do not forget to be kind to yourself and ask for help when you need it. Take time out of your day to practice self-care, which will help avoid stress and burnout. Take time to heal, rest, and regroup. As you continue to support your loved one and navigate the challenges that MS brings, please know that you are valued and appreciated beyond measure because just like MSAA’s mission, you are improving the lives of those you care about.
Below are some care partner-specific resources that are available on MSAA’s website:
MSAA’s webinar, “Talking to My Loved Ones About My MS” is scheduled for Thursday, November 9th from 8:00 – 9:00 PM Eastern featuring Dr. Víctor Rivera. Please note that this webinar will be presented entirely in Spanish.
MSAA’s recorded webinar, “Living Your Best Life: Tips & Coping Strategies for Those Living with MS and Their Care Partners” presented by Elizabeth E. Nager, MSSW, LICSW
MSAA’s recorded webinar, “Helping Those That Help Us: A Program for Care Partners,” featuring Kimberly Castelo, MS, LMFT-S, CST-S, CIIP
MSAA’s podcast episodes “Caring for the Care Partner” and “Spotlighting Care Partner Needs,” both of which can be accessed by visiting mymsaa.org/podcasts.