Since my mom’s diagnosis with dementia six years ago, I find myself often referring to her as my third child. I set up playdates for my kids and meetings with my mom’s hospice nurse. I celebrated my youngest’s potty training and soon after started buying diapers for my mom. I swell with pride as I watch my children learn new skills, while my mom loses the ability to do everyday tasks such as use a TV remote or even walk.
Research tells me that there are millions like me in the Sandwich Generation, people who are caring for children and aging parents at the same time. Yet at 40, I find few of my friends are in the same position. I’m an only child. My dad died when I was 14, and my mom’s siblings have passed away. For advice, I consult with my husband; my cousin, a doctor; and my in-laws.
Running interference during visits
I visit my mom almost daily since moving her from her home in Florida to the memory care unit of an assisted living facility near me in Virginia. I bring my kids to see her about once a week. It’s better for us to go to her because if my mom isn’t sitting at a particular spot at a particular table, she gets (more) confused about where she is. And when she gets confused, she gets agitated. During our visits, I run interference, keeping my mom from getting upset and my children from seeing it if she does. It can be exhausting.
My mom might not remember that we were there moments after we leave, but my kids will remember Grandma. “She never forgets how much she loves you,” I tell them.
I’ve learned tricks for making visits easier. For example, we bring stuff, such as board games or treats to eat together. I sit back and let her have some time “alone” with my kids, thinking about how she was robbed of getting to be a “real” grandma while also feeling grateful that my children know at least this form of her. They know her as happy, loving and in awe of them. My mom might not remember that we were there moments after we leave, but my kids will remember Grandma. “She never forgets how much she loves you,” I tell them.
The benefits we get from these visits outweigh the many emotions that come with them. They make my mom happy, they teach my children about empathy and kindness to people in unfortunate situations, and they show me that the most fundamental parts of my mom – love and nurturing – can still thrive.
Of course, it’s not always easy. Sometimes my mom and I fight because she’s refusing to take her medication. Sometimes the care managers ask if I can be there when they help her shower because she can get physically and verbally abusive during these intimate moments. Sometimes I feel crazed watching my mom eat salad with her fingers while the fork is right there. I draw parallels between the way I interact with her and with my children: Move your chair closer to the table so you don’t spill your food, take your medicine, eat your healthy food, not just dessert.
Taking it all on and taking it all in
I’ll never forget the care manager who stopped me as I fretted about how I just can’t swing a visit some days. “We’ve got this,” she said. “We take care of her. You take care of you.”
As important as it is to me, visiting can feel like a chore. On any given day, I have volunteer commitments at my kids’ elementary school, freelance writing and editing deadlines, a weekly group cycling class to teach, and a house to maintain. My life can’t stop. If anything, this experience has taught me to take it all on and take it all in. I’ll never forget the care manager who stopped me as I fretted about how I just can’t swing a visit some days. “We’ve got this,” she said. “We take care of her. You take care of you.”
While the emotion one feels in raising a child is often pride, my default response to my mom’s decline has been anger, which I tend to take out on her in the form of impatience. Of course, it’s the disease and the situation I’m mad at, but she’s the one who’s asked me the same question 10 times in five minutes. Fortunately, she forgets my reaction almost as soon as it’s out, and over time, I have come to embrace getting angry rather than feel guilty about it. It’s a completely normal response because dealing with dementia is infuriating in many ways. I also let myself feel sad and scared, but happy is always nearby too. After all, my mom may not know where she is, her age or the date, but she always knows me.
There’s a lot to be said for that.
Stephanie Kanowitz is a Fairfax, Va.-based freelance writer, fitness instructor, mother and caregiver to her mother, who was diagnosed with dementia in 2012. Stephanie earned journalism degrees from the University of Florida (bachelor’s) and American University (master’s), and her work has appeared in The Washington Post, Washington Post Express, Red Tricycle, the Washington Diplomat and the Kveller blog.
