Caring for an Aging Parent with MS

Karen Foster on Living Your Own Life while Enriching Another’s

Karen Foster and her father, James Foster

The wedding was in Seattle, WA, but something told Karen Foster to fly into Portland, OR – 170 miles to the south – and visit her parents before going to her friends’ nuptials. It was a detour that put her life on an entirely unexpected path.

Ms. Foster explains that her father had begun experiencing symptoms of MS in his late thirties, so she had grown up accustomed to seeing him deal with relapses, difficulty walking, occasional falls, and a succession of first-generation disease-modifying therapies (DMTs) that yielded varying results.

Despite that childhood experience, however, she was not prepared for what she found when she arrived at her parents’ home. Perhaps her mother and father hadn’t wanted to worry her or her siblings. Perhaps her father’s health had declined so gradually that they didn’t appreciate the extent of the change. Perhaps it was denial. Whatever the case, Ms. Foster immediately realized that her father’s health needs and her mother’s caregiving burdens were much greater than her parents had portrayed in her frequent phone calls to them.

“I’m so grateful that I decided to see them on that short trip,” she says. After a quick assessment of the situation, Ms. Foster decided that she needed to prepare to move back from Chicago, where she enjoyed a very active life with many friends, had earned a succession of promotions as a marketer with a large technology company, and had obtained a master’s degree in integrated marketing communications.

“I thought it would just be temporary,” she says of the 2015 move.

Seven years later, Ms. Foster continues to care for her father – who is 80 years old now and makes use of a wheelchair – while she also runs KF Curates, an event strategy, execution, and consulting agency that she founded two years ago.

For Ms. Foster, the choice to give up the career and life she had built in Chicago was a difficult one to make, but she wanted to be there for her parents. Her father required considerable assistance and her mother was stretched thin caring for him and for Ms. Foster’s brother, who has autism. “It was what needed to be done,” she says.

Ms. Foster adds, however, that she has come to realize that there is another sense in which caregiving, while involving significant sacrifice, need not entail a choice. She explains that when she first returned to the Pacific Northwest, she worked in marketing for a medical device company located some distance from her parents and then in community outreach and engagement for a college in their hometown. All the while, her father’s needs steadily increased. “Until a few years ago, he just required help getting out of bed and into the wheelchair in the morning and then he would be okay for the rest of the day,” she explains. However, his health continued to decline, and his care needs increased significantly after a 2019 surgery, placing further demands on her and her mother.

“I got tired of feeling like I had to choose between a career and caregiving,” Ms. Foster said. It was 2020, and as COVID normalized working, studying, and interacting remotely, her previous service to the community through events led her to being asked to organize more and more virtual events for other businesses and organizations. Sensing an opportunity, Ms. Foster launched KF Curates as a way to fulfill her entrepreneurial ambitions, her desire to build a work schedule and life that enabled her to care for her father, and her passion for – as the KF Curates website explains – working with “businesses and organizations to produce diverse, inclusive, and equitable event experiences that lead to transformational change, that impact communities and corporate spaces.”

While it hasn’t been easy, Ms. Foster says, “You can find a way to be a caregiver and still live your life and pursue your goals. Don’t let anyone think you have to choose one or the other. You just have to think through how you’re going to do it. It may be different than you had planned originally, but it can be done.”

And how does she balance those competing demands? “That’s a good question,” she acknowledges with a laugh, before responding with a three-part answer: “Prayer, therapy, and going to the gym.”

“Caregiving, specifically for a parent, comes with physical, and psychological strain. There have been so many things I’ve had to come to terms with. You don’t know the range of emotions you’re going to go through until you’re in it,” she says of caregiving, adding, “Prayer sustains me, and keeps me going all around. Therapy helped me process a lot of my emotions, and to understand which things were my responsibility and what things were not. Exercise is critical for relieving stress and recharging,” Ms. Foster says.

Two of the main insights she has derived from therapy, Ms. Foster adds, are the importance of attending to your own health as well as the wellbeing of a loved one dealing with MS or another chronic condition, and the benefit of stepping back for a moment and thinking about when intervention is and is not warranted.

“It’s not about crossing things off your daily to-do list,” she says. “If people with MS have more strength and can do something themselves, you need to let them do it instead of jumping in just because that’s easier and quicker for you.” At the same time, she adds, the symptoms of MS can vary so much from day to day that a care partner needs to be attuned to a person’s current level of ability. “If you can get your own coffee today, that’s great. But if the coffee pot is too heavy for you to safely lift the next day, I’ll pour,” she says in citing an example from her experience with her father.

An advocate for dignity and equity

As her father’s health needs have increased over the years, Ms. Foster and her mother have devised a divide-and-conquer approach to his care. Ms. Foster takes the lead with arranging healthcare visits, interacting with clinicians, and assisting with many of her father’s daily activities, while her mother helps her husband with other daily tasks.

Honoring her father’s dignity was an important consideration in that allotment of responsibilities. It is also a priority for her in managing and monitoring his healthcare. “There have been doctors who have said, ‘Well, he’s in his 70s…’” when she has asked about services or treatments that could enhance his quality of life. “It’s almost like telling someone they have lived long enough,” she says of that mindset.

On a number of occasions, she adds, she and her father have experienced firsthand the race-based inequities that persist in healthcare. “For people of color, it is very important that your needs are expressed, understood, and met; that if services are available for some, they are available for all; and that your provider cares about equity.” It is a message Ms. Foster champions not only in interacting with her father’s clinicians but also through her involvement with several community organizations and her service on MSAA’s African American Advisory Board.

Particularly for people of color who long have endured disparities in medical care, but ultimately for all people and care partners contending with MS, Ms. Foster says, “I think it is important to make sure your voice is heard and your needs met – to open doors not just for yourself and your family, but for the people who will come after you.”