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Caregiving Through Dementia: a Loving and Difficult Journey

What Annette Franqui wishes she’d known about taking care of her mom

spinner image annette franqui is a former a a r p board member
Annette Franqui poses for a portrait at her home in Vail, Colorado. Franqui is the former chair of AARP’s board of directors.
Eric Lee

We knew something was wrong with my mother, but we didn’t know exactly what. Raised in a big, boisterous Puerto Rican family, she had always been vivacious and warm — an involved, affectionate parent to my sister and me. But soon after she retired at age 67 from her career at a pharmaceutical company, Mom started acting differently.

After decades of weekly salon visits, she let her hair grow, and her nails were a mess. Her apartment in San Juan grew ever more cluttered. And she had started to withdraw.

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In 2014, I told her I was having surgery and asked her to come to Miami to help out for a few days — a request she ordinarily would have leapt at.

“I can’t,” she said. “I have my dog.” That was not the mother I knew.

In 2015, my sister, Debbie, and I took her to a neurologist. After examining Mom, he told her, with an amount of levity that hurt and offended me, that she had dementia and should just go out drinking with her girlfriends. That wasn’t our plan, but Debbie and I knew that we needed one.

We had to figure out how we would help and interact with Mom during her illness. Although we have made mistakes along the way, we have also learned a great deal about caring for a loved one with dementia that might be useful to others starting down the same difficult path.

Meet them where they are

Something I needed to learn early on was to let my mother be herself — her current self. For example, I had wanted her to exercise to preserve her muscle tone and bone strength. Mom was not on board. I would fret about how to get her to work out until my husband, Seth, said, “You’re asking a person who just lost their leg to run a marathon. You can’t do that. She’s a different person now.” I had to let go of some of the goals I had for her.

Part of letting Mom be herself was recognizing when her reality was different from ours. When someone is having a delusion because of dementia, you’re not going to talk them out of it. Instead, we learned to meet Mom in her reality when we could. There’s no harm in playing make-believe sometimes. It can even be a way of connecting.

Surround them with love

One of Seth’s granddaughters, Gracie, was 2 years old when my mother was diagnosed. She and my mom were best buddies. So we watched Gracie growing as my mother’s disease was progressing, and when Gracie was 5 or 6, the two sort of traded places in their relationship.

Some might assume that exposing children to adults with brain disorders would be too confusing for the kids, but that has not been our experience. My mother adores children, and including her in family activities has been a source of delight and even magic for us all.

Divide and conquer

Debbie and I have very different personalities. I am the practical one, making sure caregivers get paid and that Mom has all the supplies that she needs. Debbie is the emotional one, more suited to taking charge of Mom’s hands-on care. Having different strengths is actually a blessing. You can assign roles to whoever will do them best. And you have to assign roles. Coordinating care for someone with dementia, even when there are resources to pay for professional caregivers, is not a one-person job.

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The effort has changed and strengthened my relationship with Debbie. Although she’s only 18 months younger than I am, she had always been the baby of the family, and I treated her as such. I had to learn to approach her as an equal when it came to Mom’s care. No one is the boss.

Lean on others

Each member of a caregiving team needs their own support system. I’m fortunate to have a great husband and lifelong friends who have my back. When I have doubts or fears, I can turn to my support system for encouragement and perspective. I don’t need to burden Debbie with all that.

Then, too, I’ve learned to rely on the kindness of strangers. For instance, when I took Mom out, I got into the habit of identifying someone — often a mother with kids — I could ask for help from in a pinch. I’d say, “Would you mind keeping an eye on my mom while I run to the restroom?” People were so kind. They’d say, “Yeah, I understand.”

spinner image annette franqui and her mother ginny catinchi and sister debbie franqui
Mom Ginny Catinchi, seated, with kids Debbie Franqui, left, and Annette .
Courtesy Annette Franqui

Cherish the time you’ve got

My mother’s disease has progressed to the point where she doesn’t talk anymore. But even now, there are interactions that let me know she’s in there. Sometimes she’ll squeeze my hand. Or she’ll blow a little kiss.

I’m so grateful that when Mom was first diagnosed, we encouraged her to remain as active and social as possible. She had another good five or six years of travel and family adventures. We have a lot of sweet memories from those years.

Caring for a dementia patient isn’t easy. And I know it’s even harder if your resources are limited. Dementia is a journey you take with your loved one. You know where you’ll ultimately end up. But I want caregivers to know that along with the uncertainties and sorrows, there are beautiful things to see along the way.

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