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5 habits of highly effective MS caregivers

By Gay Falkowski

While caring for someone with MS can be deeply rewarding, it can also be difficult because the disease is unpredictable. As a result, caregiving needs are continually shifting. Those who most easily adapt have developed habits that keep them grounded even in turbulent times. Here are five habits of highly effective MS caregivers:

1) They practice self care

It’s not selfish to focus on your own needs and desires when you are a caregiver — it's an important part of the job. Remember, you are responsible for your own self-care. The Family Caregiver Alliance recommends focusing on the following self-care practices:
  • Learn and use stress-reduction techniques, such as meditation, prayer, yoga, and Tai Chi.
  • Attend to your own healthcare needs.
  • Get proper rest and nutrition.
  • Exercise regularly, if only for 10 minutes at a time.
  • Take time off without feeling guilty.
  • Participate in pleasant, nurturing activities, such as reading a good book, or taking a warm bath.
  • Identify and acknowledge your feelings; you have a right to all of them.
  • Change the negative ways you view situations.
  • Set goals

2) They build a support network

Successful caregivers learn to seek help from others and create a supportive network to help them cope with caregiver stress. It may be helpful to know that new caregivers, caregivers who may be burned out, or those going through an especially challenging time may experience different phases in their decision to seek and accept support.

One study (McKeown, 2004) of MS caregivers identified phases caregivers may go through when asking for help. If you do find yourself struggling with asking for help, it may help to identify the phase you are experiencing and know it’s a normal reaction to being a caregiver. You may even find yourself repeating these phases as you experience different caregiving situations:
  • Rejecting support
  • Resisting support
  • Seeking support
  • Accepting support

3) They become a student of caregiving

Learning about caregiving is a lifelong practice for the devoted caregiver. The following websites offer information and advice on a variety of topics related to caregiving:

4) They stay current on MS issues

Knowing the latest news and research related to MS helps caregivers successfully advocate for loved ones. Let the MS Focus help. Check out the news section of our website at msfocus.org. While you’re there, subscribe to our magazine, MSFocus, and our monthly Internet newsletter, MSFYi — both great resources for all things related to living with MS.

5) They live in the moment

Caregiver Donna Steigleder says it best in her article, Life Lessons from Caregiving at multiplesclerosis.net:

Living in the moment is the best advice I can share with any new caregiver. None of us know what tomorrow brings; it may be better or worse than today but most likely it will at least be different. With caregiving, you just can’t plan for every contingency no matter how hard you try. There are just too many factors that come into play to manage them all. However, what I do know for sure is this: whatever tomorrow brings, I have no control of, but what is in front of me today, is mine to handle. I try to focus on today’s needs. I make tentative plans for other days preparing what I can in advance but also knowing that a new skin tear, a viral infection, a broken control on the wheelchair, or an exacerbation of MS can change all my plans in a heartbeat. Therefore, I usually have plans A and B just to be safe.

“I also have learned that as our lives change, we adapt to those changes so that the ‘change’ becomes the new normal for us. By accepting the new normal, I’m able to keep our lives on track and make little changes that help us to keep going. If I look ahead at ‘what if’ then I’ve wasted a lot of energy I don’t have to deal with something that may never come. So, I live life in the moment.

“Caregiving is not for the faint of heart or the selfish in nature. It involves sacrifice, hard work, emotional highs and lows, flexibility, and perseverance. What we do is great and worthy and hard and overwhelming but most of all it’s love made visible.”