by Dani Modisett, author of Take My Spouse, Please
“You know she can’t take care of a plant, right?” my mother said to Jim, Steve, Bill, John, and every other boyfriend of mine she ever met, usually while holding a goblet of chardonnay close to her smiling crimson lips.
I’d make a joke to save face and then eat all the rolls in the breadbasket or half a pumpkin pie, depending on the season.
I’d mostly forgotten about my mother’s boundary-free flirtatiousness until about a month ago when I saw her shamelessly batting her eyelashes at all of her male caregivers. A dammed up wall of painful memories busted with each coy glance.
We had recently moved my mother from New York City to Southern California to be close to her two grandchildren and me. It was the right choice at the right time. Her Alzheimer’s was advancing—taking her memory and executive function with it. But now, seeing her on the regular, as the kids say, memories of our complicated history are slapping me in the face left and right.
Dani’s mother with one of her grandsons spending quality time together.
This time of year can be difficult for any adult child in any family. Holiday music, multicolored lights twinkling, smells of eggnog and chocolate, endless commercials of family togetherness, family traditions… Boom! Suddenly, you’re haunted by the ghost of Christmas/Hanukkah/Kwanzaa past. For families dealing with Alzheimer’s, finding peace, joy, and gratitude around the holiday table can be even trickier.
After making it through a difficult Thanksgiving together (barely!), the thought of spending many more days and every holiday meal from now to New Year’s Day with my mother was making me sweat. Literally. So I did what I always do when anxiety threatens to overtake me—I ate a family size bag of popcorn and called a few friends who have already travelled down this painful path.
First, I met with Sam, a friend for more than a decade. Sam has been in charge of his mother’s care since she relocated from the East Coast about a year ago after her short-term memory basically disappeared. I asked if he had any advice for dealing with a parent with dementia around the emotionally charged holidays.
“We don’t spend the holidays with the family we want,” said Sam, “We spend the holidays with the family we have.” I was impressed with Sam’s wisdom, yet something about those wise words did sound familiar.
“Donald Rumsfeld said it first. About going to war,” Sam added, letting out an ironic chuckle. Oh, right. I wouldn’t have expected a former Secretary of Defense to be anyone’s go-to source for comfort from the ravages of Alzheimer’s. But it made sense. Accepting the family you have right now rather than pining for a more perfect version seemed like a good strategy for finding some holiday cheer.
Then Sam shared the shocking details about his mother’s cognitive decline. I suddenly got why he needed to pull out the big guns, pun intended, in his approach this season.
“Two years ago my mother was diagnosed 100% with Alzheimer’s disease,” Sam told me. “So we moved her closer to us and got her set up in an assisted living apartment. A few months ago, she went in for her annual checkup. Her new doctor did a battery of new tests. Guess what? She 100% does not have Alzheimer’s.” He took a sip of cappuccino then a deep breath, letting out a long sigh. “She’s addicted to sleeping pills which have fried her neurotransmitters.”
When I was able to close my jaw again, I had to ask, “Wow. You go from thinking it’s Alzheimer’s to knowing it’s sleeping pills… How can you spend any time with her and not fly into a rage?”
“Good question,” Sam said. “When I first found out I was really angry. Blaming her, blaming myself. If only we had done this or that. I finally realized that my anger wasn’t helping me—or my mother. You just have to accept the parent you have, even when it’s not what you want. I can’t change her. My job now is to make sure she’s not in danger,” he said, followed by another sigh. “And I’m grateful. I’m grateful she can no longer drive, grateful we’ve gotten her closer, grateful there’s still time for her to have a relationship with her granddaughter.”
Suddenly, my mother playing flirtatious Blanche DuBois with my boyfriends and every male caregiver didn’t seem that bad.
Sam emphasized the importance of creating boundaries with his mother—to keep his resentment in check and to create some possibility for positive feelings. I always bristle when people use the word boundary in a conversation that doesn’t include a map. It immediately brings to my mind a therapist’s couch.
Despite my resistance to the word, I called Valerie Lehrer, a family dementia specialist with experience running Alzheimer’s support groups. She immediately talked about setting boundaries and being clear about what you can and can’t do as family caregiver. Lehrer feels strongly that it’s the only way to be fully present with a loved one with Alzheimer’s and be able to enjoy the time you have with them.
“You are not abandoning your loved one by setting a boundary,” Lehrer explained. “You have a life separate from your parent’s illness, and that is okay.”
Like Sam, Lehrer also talked about acceptance, but as it related to the verbal and physical abusive that can come with Alzheimer’s. My mother only hit me once, when I brought a spoon she didn’t want near her face. She’s certainly screamed at me a lot. Usually, I’d calmly leave the room or hang up the phone—and cry later.
Lehrer was especially helpful. “When dealing with a parent who is angry or aggressive, accept that it’s the illness talking—it is not them,” she emphasized. “It’s the thief of their brain and it’s going to keep stealing more and more of it. We can slow it down or possibly redirect it with certain medications but, so far, we cannot stop him.”
Heartbreaking as that was to hear, I liked the “thief of their brain,” analogy and hearing about acceptance in this context.
I made one more call to an old friend who I don’t get to see very often but have always felt to be a kindred spirit. Michelle Missaghieh had also moved her mother from New York City after she was diagnosed with dementia from Progressive Supranuclear Palsy. She’s a Rabbi at a large congregation in Los Angeles and the mother of three children, which explains why we don’t sit around drinking coffee in our yoga pants.
The timing of my call couldn’t have been better. She had recently delivered a sermon about overcoming challenges with family members due to illness and other less sympathetic reasons. I confessed to Michelle that there had been trying times recently with my mother when I’d asked myself, what’s the point? If she doesn’t remember anything I’m doing or saying, if all she is going to do is rage at me, why bother?
“What kind of person do you want to be?” she responded. “I want to be the person who reaches out to others,” she said, answering her own question. “Not only to my congregation, also to the needy in my own family—being present for them, instead of being angry.”
What kind of person do I want to be? Answering this simple question has helped me begin to find some peace and even gratitude in my mother’s illness, to see caring for her not as a wellspring of bitterness or resentment, but as a character defining opportunity. Yes, it’s hard. Really hard. There are good days and horrible days. But not everyone in life is given the chance to be fully present with another grown human being who needs attention and care—with no pay off other than the experience of that moment.
The truth is, caring for a family member with dementia is not about being thanked, or even acknowledged for your efforts. At a certain point, that person, who also may have been a highly flawed parent, will not even recognize you. The good news? You may be able to get to a place in your mind where it doesn’t matter. Where what matters is deciding what kind of person you want to be and discovering how to be that person every day, now and in the future—with the family you have created.
And if you keep showing up, you might just get lucky and witness a miracle. My mother has gone from being someone perpetually angry because no one was ever doing enough for her to a woman who smiles and says please and thank you all the time. She’s transformed from a person who would rather jump on a crowded, un-airconditioned subway in the middle of August and press up against a bunch of strangers and sweaty armpits than express any vulnerability at all—especially to her family, to a woman who looks directly into my eyes and says, “I’m afraid.”
And I get to hold her hand, looking right back and say, “It’s going to be okay Mom, I love you.”
Need respite care or support this holiday season? Honor Care Pros are specially trained to assist people with Alzheimer’s and dementia, thanks to our collaboration with the Alzheimer’s Association. Give us a call at (877) 777-5116, we can get you started in a few hours.