Support

Living with MS can be challenging not only for the person who has MS, but also for the support partner – whether he or she is providing assistance with everyday tasks, emotional support, and/or hands-on care. How do I help? Am I helping too much? I’m frustrated with this disease…I have no time for me…I’m exhausted…I feel stressed. Sound familiar? The support person – whether a spouse/partner, friend, sibling, or child – is “living with MS” too, but in a much different way.

Serving as a caregiver/support person for someone you love feels like an honor, a privilege and a joy. It is also a responsibility that can weigh heavily at times, even though you feel proud of the role you play in your loved one’s life. You may find yourself experiencing a wide range of emotions as you adapt to the day-to day variability of this unpredictable disease. MS is messy. There are no specific rules for the person with MS and certainly none for the support partner.

Given the challenges of the support partner role, prioritizing your emotional and physical health as part of the management of MS is essential. Too often, so much attention is focused on the needs of the person with MS, that everyone – including the person with MS, the healthcare team and those providing support – forget that the first requirement for helping others is to take good care of oneself. As the flight attendant says at the beginning of every flight, “Put on your own oxygen mask before assisting others.” However, many support partners find themselves challenged by the demands of work, caring for other family members and other demands on their time. By the time those activities and responsibilities have been taken care of, they simply have no energy left to take care of themselves.

While many of the barriers cannot be avoided, perhaps they can be approached differently.

  • Taking care of yourself isn’t selfish or self-serving, it is self-sustaining and essential. Getting enough sleep, following a healthy diet, staying physically active, finding healthy stress management strategies that work for you, drinking in moderation, and following the preventive care recommendations for your age group are all important to your well-being and ability to be an effective support person.
  • Recognizing when you need to prioritize your own needs is important. Pay attention to the physical or emotional cues that you need a break or a change. Perhaps you’re noticing new and unusual aches and pains when you’re stressed, or find that you become distracted and forgetful when you have too much going on. Or maybe you notice that you’re not always as caring or gentle as you want to be when assisting your loved one with dressing or a transfer. And perhaps others have commented that you’re unusually cranky and irritable. Any of these can be signals that you’re feeling maxed out and in need of some good self-care and support.
  • Identifying your cues is only half the challenge; allowing yourself to take steps to manage your well-being is the goal. Taking care of yourself includes your emotional, physical, social, intellectual and spiritual well-being – a tall order. A good place to start may be with the emotional and physical aspects of your daily life since optimizing those can really give you a step up in addressing other aspects of your wellness.
    • Looking first at exercise – research suggests that exercise may be “medicine” (Pedersen, 2015) for all of us. However, finding the time to fit in exercise amongst all of the caregiving responsibilities may seem impossible. The American College of Sports Medicine guidelines for physical activity for adults includes 150 minutes/week of moderate aerobic exercise and 2-3 days of resistance training – A LOT of time for people who have few minutes to spare. Fortunately, your efforts do not have to be in one “chunk” of time to be beneficial to your health; the physical activity can be done in short bits throughout a day. In addition, evidence is emerging about the value of high intensity, interval forms of exercise. A recent New York Times article described what we currently know about this type of exercise program, including a study demonstrating that three 20-second bouts of “all out exercise” alternated with 2 minutes of lower intensity exercise for a total of 10 minutes had similar health benefits to completing 45 minutes of moderate intensity exercise. Just 10 minutes!

Regardless of the strategy you choose, making time in your life for consistent physical activity is a high but challenging priority. Behavioral research published in the European Journal of Psychology suggests that it takes on average 66 days for a behavior to become habit or automatic (Lally, 2010) and it may take as little as 18 to as many as 254 days. When thinking of how to set yourself up for greatest success, consider times in your life when you have been successful implementing change or adapting a new behavior. What strategies did you use to accomplish? Did you record your progress? Did you enlist a friend? Did your break the chore into smaller more manageable tasks? Setting SMART (specific, measureable, attainable, realistic, timely) goals can help facilitate success. Lastly, engage your health care team for motivation and recruit a group of positive people to support your goals and then celebrate those goals once achieved.

  • Another important aspect of your physical well-being relates to the strategies you use to protect your body when assisting your loved one. Injuries to your neck and back would not only impact your health and comfort but also your ability to continue assisting the other person. The tools and strategies that can be most helpful include:
  • Paying attention to your physical well-being will have positive benefits for your emotional health as well. There is growing evidence that exercise works to enhance mood and reduce depression in the general population – so finding an exercise routine that works for you will have multiple benefits. However, we know that caregivers for people with MS or any other chronic condition are at significant risk for depression and other mood changes, so exercise by itself isn’t enough. It’s also important to pay attention to changes in your mood and report them to your healthcare provider so that you can be evaluated and treated, if necessary. Depression and anxiety aren’t about being weak, crazy or in any way inadequate. They are health conditions that deserve the same care and attention as any other health issue.

A physical therapist or occupational therapist can guide you on the most appropriate tools and techniques to use for your situation.

Most importantly, know that your health and wellness matters not only to you but also the person you love. The end result will be good care from a person who is well cared for.

References

Lally, P., van Jaarsveld, C. H. M., Potts, H. W. W. and Wardle, J. (2010), How are habits formed: Modelling habit formation in the real world. Eur. J. Soc. Psychol., 40: 998–1009. doi:10.1002/ejsp.674

Pedersen BK, Saltin B. Exercise as medicine - evidence for prescribing exercise as therapy in 26 different chronic diseases. Scand J Med Sci Sports. 2015 Dec;25 Suppl 3:1-72. doi: 10.1111/sms.12581. Review. PMID: 26606383

Click here to get even more great tips on this topic by viewing our archived webinar on Together in MS: Supporting Family and Friends of People with MS.