My Mother’s Struggle with Dementia

My sister warned me that my mother’s face would probably look bad, but I still wasn’t prepared. When I arrived at my parents’ house for Thanksgiving last month, I saw from the side that she had a black eye. When she turned fully towards me, I almost stepped backward. The other side of her face was completely black and blue, including the eyelid, with bruising on her forehead as well.

My mom had fallen the day before as she got out of bed. Apparently, she didn’t react quickly and consequently landed on her face. She didn’t remember what had happened or the trip to the emergency room where she had X-rays that confirmed nothing was broken. Each time she touched her forehead that day, she noticed it was tender. “Did I fall?” she asked my father.

She was quiet the rest of the weekend, though that wasn’t unusual. The house was full of kids and grandkids and she seemed overwhelmed by the banter and activity around her. Once very sociable, she’s now reserved in a group setting, only chiming in occasionally.

After I returned to my own home in Virginia from the holiday weekend, I called my father to tell him I had arrived safely.

“Hi, Toots,” my mother answered, “How are you?” I was taken aback. She sounded completely normal. If I hadn’t seen her the night before, I wouldn’t know anything was out of order.   

This is a pattern that has become familiar to my family over the last decade – moments of clarity followed by moments of startling confusion. 

I first became aware that something was really wrong with my mom in 2011. She mentioned that she’d like to travel to Ireland someday. My parents had taken a 10-day trip there in the late ‘90s and we had discussed that trip just weeks before her comment.

Like more than 50 million others across the globe, my mom was eventually diagnosed with dementia, a diminishing of cognitive function that isn’t a normal part of the aging process. Because the number of people who have dementia is accelerating in every U.S. state (and is expected to triple by 2050), my family has joined scores of others who have had or will have the experience of losing someone who is still physically present.

The signs were subtle at first and got progressively more pronounced: not remembering a name became forgetting how to get to a place she’d been to dozens of times. Then she started to forget entire interactions with people on the phone or in person. Today, my father is her full-time caretaker, along with home health aides at night, and she is completely dependent on others.

Dementia has robbed my mother of things she loved and did well. Friends were always an important part of her life, but her social circle has dwindled because it’s now nearly impossible to have an extended conversation with her. She enjoyed painting for decades, crafting portraits and scenes of the Hudson River. Her painting supplies have been collecting dust in the basement for years now. Math was a strong suit from an early age and she graduated from college with a math degree. She now struggles to tell time. 

My sister got her a clock that reads NOW IT’S MONDAY MORNING on one setting. On the other, it displays the day, time, and day of the week. Lately, she has been setting and resetting her watch (or her “clock,” as she has started to call it), but can’t remember that 10:15 is said as “ten-fifteen,” instead calling it “ten-one-five.”

The details of my mother’s decline are not unique; all of the elements of memory loss that we have witnessed with my mom seem to be commonplace for those with dementia. What has surprised me is how much shame she seems to feel about her condition. 

From the onset of her symptoms, my mom has not wanted to discuss her progressive memory loss. In fact, the only direct conversation I’ve had with her was a number of years ago. I was hoping to talk about what was happening to her, not to be nosy but to let her know she didn’t have to face it alone. So I asked if she sometimes found that she didn’t remember things.

“I guess, sometimes …” she trailed off as she looked away. Another question received a similar answer that clearly signified she was done talking about the subject. I felt as if I was invading her privacy.

To this day, she tends to chalk up any lapse in memory to momentary forgetfulness, and we have all politely obliged.

On the phone, I’ve learned to steer away from questions that require recall, such as what she and my father did during the day. Instead of acknowledging that she doesn’t know where she’s been, she asks my father. (“Paul, where did we go this afternoon?”)

I now only ask questions about what is physically in front of her when I call home. We always talk about the weather. She spends most of the day in a chair by a big window, and she can look outside and answer. 

My mom’s self-consciousness about her condition does not seem to extend to her appearance. As her ability to keep up with personal hygiene has started to fall away, it’s hard not to feel that she has lost some of her dignity. 

This was a woman who would touch up her nail polish in the car on the way to church, who always had makeup in her purse, who always carefully chose what she was wearing, whether she was going to a party or out to do errands. The mother I grew up with would be upset about her appearance these days.

My mom’s condition has left my father with agonizing decisions. In an effort to keep my mom at home and not move her to a nursing home, he has taken on a daunting list of  responsibilities. He does the day-to-day household tasks such as paying the bills, doing the grocery shopping, cooking, serving, and cleaning up meals, and organizing the laundry; he also helps my mother get downstairs in the morning and fields repeated questions from her all day.

My siblings and I (or “The Syndicate,” as he refers to us when we’re out of earshot) have had many conversations with him about what would be best for her and for both of them. Like many families, my family has struggled to find a solution that feels right. There are no easy answers.

The events over Thanksgiving weekend made it clear, however, that her needs exceed what can reasonably be provided through in-home care. Though it feels like a betrayal to my father to bring my mom to a facility, which will likely leave her even more bewildered and out of sorts on a daily basis, she needs to go and he wants to be with her. 

And so, my parents, who got engaged the Saturday before JFK was assassinated in 1963 and who have been navigating the world together ever since, will take their next journey together. Next week they will move out of the house where they’ve lived for 45 years and into a memory care and assisted living facility a few miles from their home. They will be on separate floors but will be able to see each other and eat together every day.

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A few months ago I was sitting in my parents’ living room with my mom when she asked, “If I wanted to go to the kitchen, how would I get there?”

I tried to hide my shock and was explaining where the kitchen was when my dad walked through the living room.

“Are you going to the kitchen?” my mom asked him.

“Yes.”

“Can I come with you?”

“Sure,” he responded.

“Ok. It will just take me a minute to get up.”

“That’s fine,” he told her. “Take your time.”

And then he slowly walked with her into the kitchen, making small talk along the way.

As the move date comes closer, I see that my father will once again be gently shepherding my mom through a world that is no longer familiar to her. She doesn’t know where she’s headed or what day or time it is. Thankfully, for her sake, she doesn’t have to make the journey alone.