Although I am the one diagnosed with multiple sclerosis (MS), I am not the only one who lives with MS in our family. My husband, Rob, lives with MS, too.
As is common in many relationships, Rob and I take care of each other. We have a fluid give-and-take that helps to make our household function smoothly. For example, while I’m busy teaching music lessons, Rob will often prepare dinner after he gets home from work. I usually take care of laundry during the days.
More unique and special to our relationship, Rob has become excellent at watching out for the intervening effects of MS. If I start to get overheated in the summer, Rob will encourage me to get something icy to drink. Better yet, he often brings me something to drink without mention. If I begin to have a cognitive meltdown from sensory overload, he gently guides me to a less confusing, less stimulating environment, so that I can think straight again.
Watching out for me didn’t come automatically for Rob; it took time, practice, patience, and careful attention. The more we as a team have learned about how MS affects me, the better we become at ameliorating some of its effects. We become a stronger team in the process.
Bringing a cold drink or finding a quiet location where I can sit may seem insignificant. These tasks are easy enough to do, if you’re attentive. But when you combine them with innumerable others, they add up to one huge fountain of support. Altogether, this makes Rob my care-partner. I like the term care-partner because it implies that we are in this together. The more common term, caregiver, invokes a one-way exchange of energy.
Try to picture a caregiver or a care-partner, someone you know personally or perhaps one you’ve seen portrayed on TV. You might envision someone who helps the person they’re looking after with activities of daily living, such as eating, bathing, dressing, grooming, toileting, or transferring from wheelchair to bed. Rarely does the image of a person who does a bunch of little things come to mind.
Today, Rob is out helping his mother run errands: grocery store, library, and more. Not only does Rob take care of the little things for me, he also takes care of his mother. In a few weeks, she will undergo surgery, and afterward, Rob and I will take turns being her caregiver at home as she recovers.
Caregiving isn’t a concrete endeavor; it is fluid and changeable. There are plenty of days when I don’t feel I need a “caregiver.” But it’s important on those days to remember that routine tasks, such as taking out the trash or making the bed, can be a form of care-partnering, because they help reduce the burden for someone else.
The exception may be when you teach children to do housework, because you’re teaching them how to be good stewards of their home and environment rather than little caregivers. Every child should be taught the basics: how to mow and weed the lawn, how to clean the toilet and floors, how to put away groceries, and how to ask if there is anything else that needs to be done. “How can I help?” should become a common question that you ask others and that you ask yourself in considering others.
Sometimes there can be feelings of doubt and guilt when you need the help of others. But you can take steps to reduce those feelings for both the caregiver and the one receiving help. For example, the caregiver can avoid doubting the level of need a person has. Instead, recognize that an admission of need may be harder to express than the effort it takes you to complete the task. For the person receiving help, avoid going into long explanations for why you aren’t able to do something for yourself. The person offering help may sincerely want to get down to the business of helping.
When the time comes when Rob or I need a greater level of care at home, I hope that we can draw upon years of experience looking for opportunities to make things easier for each other in little ways. Because lots of little gestures of kindness truly add up.
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to healthcare conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.