How I Learned to Talk to My Mother With Dementia

Dementia can shatter the deep bonds you share with with your parents. But it doesn't have to define the relationship entirely.

By Dana Epstein Altman


The downward spiral

A few weeks ago, my mother confided in me that she wished I was her mother instead of her daughter. If that isn’t reason enough to book an emergency session with your therapist, I don’t know what is. 

Let me back up. My 84-year old mother suffers from dementia. Although the early signs vary, common symptoms include a decline in memory, particularly recall of recent events, as well as increased confusion and decreased concentration. Dementia also affects behavior, feelings and relationships, which is really where this story begins. 

Growing up, my mom was my friend. I told her everything. I trusted her more than anyone else in the world and she never let me down. It’s because of her that I understand the profound significance of unconditional love. 

When I was a teenager, she was in her early 50’s — puberty and menopause under one roof. I vividly remember her entering the kitchen and forgetting what she came in for; or searching all over the house for the sunglasses that were on top of her head. She was cool about it, laughed it off and called it “classic menopause brain.” 

In her 60’s the repetition started. Forgetting we already discussed something — sometimes twice — became her new normal. She light-heartedly told me her girlfriends also did “the repeat thing.” Too vain to admit to potential dementia, she devised a practical plan: The second the conversation got repetitive, I was instructed to cut her off immediately and yell, “repeat!” Then, of course, we’d roll on the floor laughing. 

At 70, my mom and dad moved to Florida permanently. In-person visits became less frequent. Instead, we had tell-all phone calls about everything under the sun. Sadly, somewhere around my mother's 80th birthday, her genuine, guttural laughter after I said “repeat!” abruptly ended. I was now met with an argumentative and defensive response that left me sad, shaken and very confused. I quickly learned that this type of combative denial is common behavior for someone with dementia — not that that made it any easier. 

Finding common ground

At its core, dementia is a disease that causes part of the brain to lose function, impacting memory, behavior and speech. Dementia can also damage the ability to control certain impulses, which means actions are not intentional. Since I’m an empath and feel everyone’s everything, this was, and still is, the hardest part. On a rational level, I knew that my mom was not trying to hurt my feelings. But having my emotions trampled on, even unintentionally, was killing me.

Last year, my father passed away. From his deathbed, he revealed that he’d been covering up the severity of my mother’s dementia, specifically, her short-term memory. Just hours before he slipped away forever, he asked me to promise I’d take care of her. And then he sheepishly explained that although my mom thought she was driving the bus he was actually the one keeping it on course. 

While mourning the loss of my father, it hit me hard: I was also mourning the loss of the mother I once knew.

Taking over her day-to-day responsibilities — overseeing finances, managing medications, fielding calls from concerned friends, reporting back to my siblings — wasn’t all that tough. What was? Coming to terms with the fact that my new role as her daughter was based on function rather than emotion. And that’s when the real work began.  

After feeling deflated and cheated out of an emotional connection more times than I can count, I realized that in order to hold on to our intimate bond — and to protect my heart — I had to make a shift. So, I began creating strategies that would allow us to still talk and feel our emotional connection regardless of her short-term memory loss. 

Rather than remind her that we just discussed something she forgot, I now stop myself and happily repeat the story. Since she can still access long-term memories and reminiscing makes her feel good, I ask her leading questions to elicit responses I know she’ll have. Because she loves feeling needed, I regularly ask for her advice — even when I don’t need it. And since her favorite thing to do is laugh, I tell her funny stories about my golden retriever, George, as often as possible. 

Flipping the script to work with my mother’s dementia instead of against it has enabled us to connect in an entirely new way. One that nourishes me and her, too, on some level I’m sure. To be honest, it feels extremely reminiscent of the pure unconditional love she gave me as a child. And the honor I have, as her daughter, to return that precious gift is nothing short of epic.

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