Caregiving can be an opportunity to get even closer to the person who is helping you, or it can become a very stressful situation for both caregiver and the person being cared for. Your loved one is likely doing his or her best to support you and look after you so you can remain as independent as possible and function as normally as possible with your MS. It’s important for you to appreciate your caregiver’s commitment and to make every effort to make the relationship work well.
Take a moment and think about how you’d like to be treated if the situation were reversed. Are you making the most of the relationship and dealing well with the challenges that arise between you and your caregiver? Consider these ideas for building and maintaining a successful relationship.
Talk to your healthcare team
After your MS diagnosis is confirmed, you’re bombarded and probably overwhelmed with information about your condition, treatment, therapy regimens, and on and on. It’s easy for the topic of caregiving to fall by the wayside. So if you haven’t done it yet, go to your healthcare team and talk to them about defining and managing roles and responsibilities for both the caregiver and the one being cared for.
Ask them about the challenges you’ll likely face (or are currently facing) and how others with MS successfully deal with these concerns. Request literature on the topic of MS and caregiving and/or online resources you can access. If you and your caregiver are struggling to make it work, ask your healthcare team for a referral to a social worker skilled in MS issues who can talk to both of you about improving the relationship.
Give your caregiver a break
This is good advice, both literally and figuratively. Set up a system of support so that your primary caregiver – who may be your spouse, significant other, parent, or best friend – gets a literal physical break from duties and responsibilities. Tell him or her to go see a movie that you’re not interested in, but s/he has been talking about lately. Get your caregiving”bench” lined up so you can turn to others for help when your primary takes some time off.
Figuratively, keep the phrase “Gimme a break!” in your head as you interact with your caregiver. S/he will undoubtedly make mistakes along the way because you’re both on a path of learning and discovery. Don’t be overly hard on this very special person and keep in mind that her/his life is undergoing substantial change as well.
Be honest with each other
Giving your caregiver the benefit of the doubt doesn’t mean that you should hold in your feelings or not share changes in your symptoms. If you’re having a really foggy mental day or struggling to walk, when yesterday everything was fine, then don’t hesitate to share this new information. Caregiving is a two-way street that requires honesty by both parties.
Thousands of people with MS navigate its sometimes treacherous waters successfully with the help of a compassionate caregiver. You can too, with a little effort and good communication.