Who Cares if You Have MS?

I ask you to pause and think about the family members who help to care for you. Whether you are totally dependent on others for the most basic of your needs or they are the people in your life who do small tasks to help to make your day to day activities simpler, we are fortunate to have our family caregivers.

Being a family caregiver can be a complex role and it might involve 24/7 care for a person dependent on them for their basic needs of eating, sleeping, and personal hygiene. That is the most common scenario people think of when asked to describe a caregiver. Their dedication to their family member is easily seen because they are pushing the wheelchairs, driving the person to doctor appointments and running a household to ensure the laundry is clean and there is food in the refrigerator and so much more.

But there are also the family caregivers who quietly do the smaller tasks that make living independently easier for those of us who have MS. For example, I am fortunate that our daughter comes by regularly, and doesn’t hesitate to do my loads of laundry, work in the yard with the mowing and pulling weeds or load the dishwasher. While those may seem ordinary to many, on some days those tasks can be monumental and can quickly drain my energy. Fatigue is by far my worst MS symptom and when she does these ordinary tasks, it frees me to use my limited energy in other ways. Though this is not full time caregiving, it is still a type of assistance that makes a big difference for me.

I’ve watched my parents need more and more assistance as they aged and again it has been family caregivers, in this case my sisters, who have stepped in and taken on making sure their basic needs are met and so much more. Particularly they make sure their medical needs are appropriately taken care of, and their daily activities of eating and sleeping are done in a safe environment. My father recently passed, and the role of the family caregivers is even more critical for making sure my mother is provided for and protected in all ways.

In the US and most everywhere else in the world, we rely on family caregivers. Our medical system does not provide for the daily care many people require if they don’t live in a residential nursing facility, and instead it becomes the task of family members. We know from experience with my mother that hiring caregivers to come into the home can be a strain on the finances and out of reach of most people, so the job is taken on by the unpaid family members. It can also take a physical and emotional toll on the caregiver.

November is National Family Caregivers month, a time set aside to acknowledge our family for helping to care for us. It is estimated there are 90 million family members in the US providing full time care for people with complex needs; this number does not include people such as my daughter who give casual assistance.

The theme for family caregiver month is ‘take care to give care’ and it points to the need for caregivers to be sure they remain strong and healthy. If you are the caregiver, there is a great tip sheet on the Caregiver Action Network’s homepage about ways you must take care of yourself as well.

“This month, and every month, let us lift up all those who work to tirelessly advance the health and wellness of those they love. Let us encourage those who choose to be caregivers and look toward a future where our politics and our policies reflect the selflessness and open-hearted empathy they show their loved ones every day.” – President Barack Obama, National Family Caregivers Month 2016 Proclamation

Family caregivers don’t do this job for the thanks and a month to acknowledge their contributions is not near enough because it is a job that doesn’t stop and I am sure most of us give thanks daily for their dedication. So from me to those of you who care, please accept my heartfelt thank you.

Wishing you well,


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