March is National Multiple Sclerosis Education and Awareness Month. Twenty-six years ago, my husband was diagnosed with multiple sclerosis. Twenty-six years ago, I became a family caregiver; and, more specifically (in my case), a spousal caregiver. I didn’t even realize that I was a family caregiver at that time because I always envisioned family caregivers as people who had to dress and feed the person for whom they cared. My husband didn’t need any of that.
As time went on, I started to become very overwhelmed and bordering on burnout. I started to do some research online, and I found several wonderful websites that cater to family caregivers. As I began to read about what family caregiving is all about, I realized that I do all of those things—and more! I truly am a family caregiver.
Caregiving is not just physically caring for someone with bathing, dressing, or eating. It’s also medication management, spending time on the phone with insurance companies and medical offices, and providing emotional support for the person for whom you care for. Family members, neighbors, and friends very often don’t want to ask the person who’s ill or disabled how they’re doing and get a real answer. Instead, they turn to the caregiver for all of those responses.
Once I found relevant information online, I felt so much better just understanding my own experience more. The reason I’m bringing this up in National MS Month is that family caregivers suffer in silence. We often go unrecognized, even by ourselves. So, we suffer as a result—with a higher incidence of chronic illness—even a higher incidence of premature death. That point is not to scare you or make you paranoid, it’s just to illustrate the seriousness of the job we take on and why it’s even more important not to try to do it all alone. How vital it is—for us as family caregivers—to take care of ourselves and to also make ourselves a priority just as we do our loved one!
Self-care doesn’t necessarily mean going to the spa, although that would be lovely. It does include things like getting help and support through support groups or through counselors—visiting your own healthcare professionals for both physical and mental health issues. Create opportunities to do things like spending time outdoors, working on some hobbies—there are lots of things that you can do on your own for yourself!
I became aware of how easy it is to get sucked into the vortex of caregiving, and as a result, lose yourself in the process. Then, if we lose that loved one at some point, we don’t even know who we are anymore, and don’t have much of a life left. I want to tell all family caregivers, whether your loved one has multiple sclerosis or another disability, or you care for elderly people, that you are a vital part of that equation. Taking care of yourself is just as important as eating and sleeping.
When people ask if they can help you in any way, we usually say, “No,” or “I don’t know.” Or they say, “What can I do for you?” We don’t even know what to say as a caregiver.
So, here’s my best advice for you: The next time someone says, “Can I help you in any way?” Just say, “Yes,” even if you don’t know exactly what you need. Default to “Yes.” Then, if they say, “Oh, great! What can I do?” say, “What do you suggest?” In other words, you’re not even coming up with something yourself, you’re leaving it to them to offer. They might say, “How about I bring dinner over? Or maybe I can come over and sit with your loved one while you spend some time outside?” Say, “Yes! Great!”
You have to seek help and support. You can’t operate in isolation. You’re not alone. I want you to know that. In fact, I wrote extensively about my own family caregiver experience in my book Falling Together: How to Find Balance, Joy, and Meaningful Change When Your Life Seems to be Falling Apart. I share my own experiences with readers so that even if they don’t have my exact experience, they can glean lessons learned.
Everybody who has read the book—especially the chapter on how caregiving feels—can relate in some way. Whether you are caring for children, elderly parents, or anyone else in your life who depends on you for your ongoing care and support, pick up a copy of that today, and get some additional tips on how to cope and care for yourself.
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Donna Cardillo, RN, CSP, FAAN
Donna Cardillo, MA, RN, CSP (Certified Speaking Professional), FAAN (Fellow in the American Academy of Nursing) is The Inspiration Nurse. She is a powerhouse of energy, wisdom, humor, and solid content and has been referred to as a positive force of nature who lights a path for others to follow. Donna is the author of the award-winning book Falling Together: How to Find Balance, Joy, and Meaningful Change When Your Life Seems to Be Falling Apart. She is also the author of Your First Year as a Nurse: Making the Transition from Total Novice to Successful Professional 2nd ed., The ULTIMATE Career Guide for Nurses: Practical Advice for Thriving at Every Stage of Your Career 2nd ed., and A Day Book for Beginning Nurses. Donna is a Reiki Master, Certified Forest Therapy Guide, Certified Meditation Teacher, and labyrinth facilitator. When she is at her home base in Sea Girt, NJ, she serves as a local spokesperson for family caregivers.