Taking Care of My Grandmother—My Messy, Beautiful Life

This blog post is an updated and edited post from a few months ago. I decided to participate in the Messy, Beautiful Warriors Project, which I wouldn’t have heard about if I hadn’t helped my friend Bridges launch her messy, beautiful blog Shitshow Bridges. I’m constantly reminded that giving and receiving are the same. Constantly. 

Bridges told me about the project, and despite the fact that I have a todo list with umpteen items on it, I said, “Yeah, me too,” which are also (thanks to Brene Brown for pointing this out) among the most powerful words we can say to each other. It’s so simple: me too.

It’s funny, because although I’ve read a few Momastery blog posts and though they were clever and sharp, I didn’t really think it was “for me” for one single, stupid, myopic reason: I’m not a mother. I was wrong, and not just because I’m a mother to Luckydog or a nurturer by nature; Glennon and her mission are so for me. As she said, “the most revolutionary thing you can do is introduce people to each other.” I love this. And now: my messy, beautiful life of taking care of my grandmother….

 

 ACCEPTANCE: REMOVING CHOICE FROM THE EQUATION

The last place I ever expected to rediscover my grace was living under one roof with my mother and grandmother. My grandmother, Mimi, is physically fit but lost her mind to dementia, leaving her with is a dicey skillset. On top of that she has a hoarding problem that made her home unfit for habitation. My mother and I are both only children, and it doesn’t require complicated math to see where the responsibility card falls.

When Mimi’s memory deteriorated and the situation escalated I knew that despite what other plans I had for myself—writing my memoir, living on the remote coast of Maine, following the breeze—I was going to have to change those plans. It also became clear I was probably going to have to change myself—or at least make a few modifications—in order to fit into the lives of my family, a family I’d intentionally moved away from.

My mother and I love each other, but for over twenty years we’ve been unable to spend more than a few days together without one of us triggering some sort of eruption. Then, suddenly, we were sharing toothpaste, stocking the kitchen, and formulating a plan for our family’s future. I moved into my mother’s tidy upstairs apartment, while Mimi lived in the downstairs apartment that even she admitted looked like a cyclone had hit it.

Then, under one roof, my mother and I did something I had no confidence we were capable of doing: we cooperated. It could be said that we didn’t have a choice, but we did. There’s always a choice; you either show up or you don’t. My mother and I showed up for my grandmother and we showed up for each other.

My mother and I have lived together in the same apartment for seven months and counting. I wouldn’t say we’re thriving under the circumstances, but we’re certainly surviving. Thus far no blood has been shed. Five percent of the time we’re yelling, slamming things and one of us is storming out of the house, but ninety-five percent of that time we’re doing a bang-up coordinating our efforts.

Caring for someone with dementia is challenging under any conditions, but my mother and I had the added attraction of cleaning up the consequences of Mimi’s hoarding, the tangible, labor-intensive evidence of what happens when issues are repressed. Putting on a face while refusing to talk about what’s underneath is not a mask that can be worn forever. It’s messy. It’s beautiful. It’s life.

My mother’s shame over her mother’s hoarding was pervasive and paralyzing, but together we did what we’d been dreading for years but what was an inevitable reality: we cleaned out the house. We pulled up floors and tore down walls. We dug deep into the recesses of cupboards and cabinets. We shined a light in the dark corners and we unearthed the remnants of several long lives. We found things we wished we hadn’t. We opened the curtains. We did it together.

At one point, a couple of months before I moved into my family’s house, my mother erupted and her lava flowed directly toward me. She needed my help but didn’t know how to ask for it. She’d been trying to protect me from the gravity of my grandmother’s disease, but couldn’t find the gumption to ask me to come and stay because neither one of us would’ve entertained that as a viable option. We didn’t say it but we both thought the same thing, “No way. We’d kill each other.”

I’d been popping in and out all summer, helping with some long overlooked tasks around the house but sticking to my timeline and my intentionally fortified boundaries. I had a wonderful summer, and the friends who hosted me around New England offered me so much more than respite, fresh flowers, and a pillow for my head: they offered connection; they offered themselves. But as the season turned to autumn I knew what I had to do: I had to go home.

For most of my life Mimi has always been on the verge of “getting the house together,” because she didn’t want me to visit and have to figure out a place to sit or have to hunt for something clean to drink out of. She’d hear I was coming for a visit and promise that in the coming weeks she’d get things squared away. “It’s good motivation,” she’d tell me, but I’d be disappointed when I arrived to discover that the most she’d done was move some things from one side of the room to the other or stacked a few pieces to make it easier to turn a circle.

As I got older I turned my disappointment into a stimulus and I offered to help. I told her I was strong to move anything, but if I tried to move so much as a shopping bag of VHS tapes Mimi grew fierce and protective despite the lack of a working player for those videos. Mimi told me she didn’t want me to louse up my vacation on account of her and that she “could handle it.” But she couldn’t.

When I moved into the upstairs apartment with my mother I told her I’d stay as long as we were being productive but I wasn’t going to be an enabler. I knew that the way of thinking that got us into this mess wouldn’t get us out, and refused to be part of the problem. Mimi’s splintered short-term memory enabled us to make progress cleaning out, but as we removed the rubble—dozens of blown-out light bulbs; a plastic whiskey barrel full of mop handles and curtain rods; boxes of small, useless, metal parts—we revealed deeper layers and the truth became clear: the emotional and physical burden of my grandmother’s disease was bringing down the house and it was taking her with it. My mother and I were next on the list.

There were two broken televisions, furniture you couldn’t give away and orphaned lampshades stacked like miniature versions of Pisa. The first month I was there we filled two dump trucks and dropped off twenty carloads of stuff to the thrift store. My mother and I shredded a dozen thirty-gallon bags worth of decades-old bank statements, and recycled just as many bags of long-expired coupons, discount-store circulars and random scraps of paper. There were enough envelopes, blank greeting cards and paper clips to open an office supply store. My proposed departure date came and went; I wasn’t going anywhere anytime soon.

Several defunct light switches were taped over, and most of the outlets were inaccessible. Those that could be reached were overloaded with tangles of outdated extension cords that snarled in corners and ran like track marks across the parquet floors. Before we started emptying the apartment, a person had to shimmy sideways to get from one end to the other. We threatened to call the fire department or insurance company, and Mimi’s response was to slam a door in my mother’s face or tell me to pack my bags. She lost her ability to reason, but one truth was as clear as ever: she didn’t want anyone going inside her house.

 With the courage my mother lacks, I matched my grandmother’s fierceness and told her, “I’m making the decisions around here, and I will not letting you die in that filthy apartment.” What started as a threat escalated into me in a mask and rubber gloves, stuffing two black contractor bags full of moldy clothes from her bathtub. I choked on fumes and tears and worked for four hours in that bathroom. Mimi wasn’t mad for long, but she also didn’t notice that I’d done anything.

Another day I removed fifty percent of the living room’s contents, and when Mimi returned from an outing with my mother she stood and moved her eyes from one side of the room to the other as if watching a tennis match. My mother and I held our breath waiting for Mimi’s reaction, and then finally she said, “It looks good. Did you dust?”

One Sunday my mother took Mimi out and I stayed behind to tackle her bedroom, a hideaway tucked in the back. I started by bagging up and dragging out everything belonging to those we’ve waked and buried. It felt callous, but we can’t keep it all. I reminded myself that what got us into this mess won’t get us out, and that’s the mantra I repeat.

After my grandfather died, Mimi starting sleeping under a throw blanket in his broken-down recliner—getting a new one would’ve meant allowing someone inside the house—although she had two beds and a cedar hope chest full of enough bed linens to outfit most of the block. I bagged most of the bedding for Goodwill, but kept a few sets, and erring toward hope, I decided to freshen up the bed I’d only recently cleared of debris.

I pulled back the musty comforter and discovered that my grandmother had made art on her bedsheet with a ballpoint pen. I crawled up there and kneeled over the hand-drawn faces for more intimate inspection. Some sported sideways smiles while other had simple, straight lines where mouths should be. Some had bold eyelashes, others slits. She signed her autograph a few times, and penned a note to me, “Hi Jaime, Hope all is well with you, Love ya.” Swallowing around the impossible lump in my throat, I reversed my crawl and stripped that bed.

I’ve always loved that verb for changing a bed: strip. I made it naked. I left nothing to the imagination. The bare mattress’ satin cover looked like it had been sliced with a mandoline, and a ruptured side seam revealed compressed innards. Even without a body sleeping on it the mattress had come undone from the weight of what was piled on it. I located a mattress cover, a set of soft sheets and a wool, brocade coverlet my parents brought back from their honeymoon in Greece.

I pulled sheets taut, tucked tight hospital corners and jammed stained, clumpy pillows into cases and decorative shams. I made that bed as if it mattered, and then I stood back, admired my work, and burst into tears. The day we moved Mimi into a secure, dementia unit in an assisted living I unmade that bed she’d appreciated but not slept in. Once again I stripped it of its clothes.

When I’m with my mother I keep it together, but alone I let it rip. My cleaning wasn’t going to mend my grandmother’s brain or heart, but yet I continued. I dug through rubble, scrubbed surfaces and humped bags to the curb in part because it needed to get done, but also because I hoped that an organized exterior might calm some of the interior agitation not only for Mimi, but for all three of us. I had faith in that possibility, but that’s not why I did it: I did it for love.

When my mother and I drifted out of our depths, I hired two geriatric care consultants to guide us back, assess the situation and help formulate a strategy. My lathered up grandmother was furious that I invited strangers into our private business though I assured her I’d made the choice out of love. “If this is the way you show love I’d rather you hate me,” she hissed, then asked with a straight face who died and left me boss. She told me I should be ashamed of myself and ordered me to leave her alone, but minutes later she forgot she was mad and agreed with the consultants who told her she’s lucky to have a granddaughter who cares so much. At the end of my rope I asked my grandmother, “Which is it?”

“I love you when you’re not giving me a hard time,” she said with a snicker, attempting to neutralize the tension with humor. My mother held her breath and I shocked even myself when I replied, “Are you telling me that your love is conditional?” Among the underlying causes of OCD and compulsive hoarding are fears of not being loved and a desire to receive love through control. My grandmother has always diffused complicated situations by saying, “Everything is under control, baby,” but I realize now that when she’s said that it’s a sign that things are wildly out of control. It’s an outdated dogma that repetition validates myth, and I no longer buy into my grandmother’s pithy expressions. The woman I’d always viewed as rock solid became transparent to me

I showed up to help my mother and to provide my grandmother with some of the tenderness my mother is unable to show, but on some level I did that physically and emotionally challenging work for myself. Loving someone when it’s difficult is one of life’s greatest challenges and rewards.

It’s amazing what we’re capable of when choice is removed from the equation.

We have a responsibility to care for our young and our old, though often the work is terrible. I had to remind my grandmother to shower and eat, and when she soiled her pants I was the default bearer of bad news. My mother said, “I don’t know how you do it,” and the truth was: I didn’t either.

When I did Mimi’s laundry I discretely discarded what wasn’t salvageable, and I handled those delicate scenarios with as much compassion and grace as possible. Mimi told me she admires my candor. She tells me I’m strong and we both know I get it from her.

Every day Mimi held my hands and begged me to never leave her because she doesn’t know how she ever managed without me. She assured me that someday I’ll leave and have a life of my own, and I tried to explain that I’d already been doing that for fifteen years but to her I’m always going to be nineteen and a college sophomore. Which isn’t the worst place to be as I creep up on forty. 

Mimi’s pleas felt viselike to a tumbleweed like myself, though occasionally my old grandmother showed up and reminded me that I shouldn’t change my life on account of her. Together we cried, and she’d beg me, “Don’t tell Mommy.” I was encouraged when my grandmother cried because she was expressing her emotions without resorting to rage or compulsion. She was that much closer to acceptance. Every day new truths manifest from the dregs and sometimes they are messy and beautiful but that’s okay.  It’s the truth that will get us through this.

This essay and I are part of the Messy, Beautiful Warrior Project — To learn more and join us, CLICK HERE! And to learn about the New York Times Bestselling Memoir Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life, just released in paperback, CLICK HERE!