Sometimes as I’m walking down the street I’ll catch a scent that reminds me of my grandmother. It’s not the aroma of a flowery perfume or a roast in the oven or the cinnamon sugar of fresh-baked pastries: it’s a sour smell. It’s garbage.
The smells surprise me. They emerge from restaurants’ grease traps, from musty, piss-soaked sections of concrete, from dank subway platforms. The volatile molecules seep out of confined airshafts or from one of New York City’s many manholes that try, but fail, to contain an underbelly overflowing with waste.
My olfactory memory engages where my grandmother’s arrests, her deficit a result of mental health issues that include dementia and OCD, both undiagnosed due to an irrational fear of doctors, both also an expression of her disorders.
The grandmother I know now is not the grandmother I’ve always known. That woman: she’s gone. Throughout my childhood my grandmother taught me many lessons that I took as truth, but only now am I questioning the validity of what she preached and modeled. She told me not to take on anyone’s problems as my own, to let life’s baloney roll off my back and, as one of her favorite songs instructs, to “Smile though your heart is breaking.”
My heart breaks for my grandmother’s lifetime of stifled emotions and for her belief that a smile is a permanent Band-Aid. It’s challenging to keep smiling as I clean up my grandmother’s life’s accumulation, as the stories my family has told disintegrate like the dust that covers her cherished collections.
I am an only child of an only child, which means there are exactly two of us to care for and clean up after my grandmother. My mother and I have spent the past five weeks sorting, donating, and disposing of the results of my grandmother’s hoarding, but walking into her house it’s impossible to tell a single thing has been removed let alone a dumpster’s worth. It looks like the woman who lives there is destitute and without anyone who cares about her, though both couldn’t be further from the truth. There’s a fine line between choice and disease.
A couple decades ago my grandmother tore up the floor in her kitchen and hall exposing several layers of the previous generations’ style choices, leaving behind the heavy ridges of rigor mortis-like glue. In the hall is a tower of tile that’s been waiting to be installed for twenty years, though for my grandmother it’s “never the right time.”
Only one of the tiles has been used though not for its intended purpose; she’s used it to cover a gaping hole in her bathroom window where a pane of glass is missing. I don’t know what happened to the window, but because my grandmother has a temper it’s not out of the question that she put her fist through it. This isn’t something she’d share with us though she’d smile, look us in the eye and deny it. She’ll do anything to preserve her façade.
Her kitchen only has hot water, several light switches are taped over, and most of the house’s wall outlets are inaccessible. Those that can be reached are overloaded with tangles of outdated extension cords that snarl in corners and run like track marks across the parquet floors.
There are two broken televisions, furniture you couldn’t give away, and orphaned lampshades stacked like miniature versions of Pisa. There are enough envelopes, blank greeting cards and paper clips to open a small office supply store. My mother has shredded a dozen thirty-gallon bags worth of bank statements and tax documents from the last century, and we’ve recycled just as many bags of long-expired coupons, cancelled envelopes and discount-store circulars.
As my mother and I remove the garbage—dozens of blown out light bulbs, a plastic whiskey barrel full of mop handles and curtain rods—we reveal additional disasters and it becomes clear: my grandmother’s house is crumbling under the weight of what it’s been carrying. It’s trying to take my grandmother with it.
Until recently you had to shimmy sideways to get from one end of the apartment to the other. Because it’s unsafe, my mother and I have threatened to call the fire department or insurance company and my grandmother responds by slamming a door in my mother’s face or telling me to pack my bags if I’m there to bust her chops. My grandmother’s lost her ability to reason, but one truth is as clear as it ever was: she doesn’t want anyone coming inside her house.
She has enough sets of fine china, sterling silver flatware from Tiffany, and glassware (for everything from apertifs to digestifs) to host dozens of guests, but there’s a catch: she doesn’t entertain. She never has. I can count the number of people she’ll invite into her home on one hand, and it’s been so long since anyone has been allowed inside for so much as a simple repair that what was once a home has deteriorated into a hovel.
My grandmother has resolutely denied anyone the opportunity to clean for her, but with the courage my mother lacks I matched my grandmother’s fierceness and finally said, “I am not going to let you die in that filthy apartment.” It started as a threat, but then there I was in a mask and rubber gloves, stuffing two black contractor bags full of moldy clothes from her bathtub. I worked for four hours in that bathroom, but she didn’t seem to notice or more likely she didn’t want to talk about it.
Last Sunday my mother took my grandmother to visit relatives, and I stayed behind to tackle the bedroom. I started by bagging up and dragging out most of the items belonging to people who no longer have a pulse. It seemed cruel, but we just can’t keep it all. What got us into this mess is not what will get us out. I repeat that like a mantra.
I found hundreds of crumpled and balled up knee-high stockings, dozens of crocheted doilies, and seventeen curtains still tagged and wrapped in plastic. I unearthed enough ace bandages for a professional ball team, at least six sets of slippers, and a mint-condition abdominal exercise machine (my grandmother is almost ninety).
I discovered a box of hundreds of laminated prayer cards for every funeral she’s been to and some that she hasn’t, and just as many keys to long-defunct locks, some of which opened doors that never even belonged to our family. I found stacks of restaurant napkins because how else is she supposed to get the rolls home?
I dug out yellowed newspaper cutouts on depression, anxiety and the danger of emotional attachments to things.
A cedar trunk and several Rubbermaid bins held enough bed linens to outfit several families, and I bagged most of them for Goodwill. My grandmother sleeps in my deceased grandfather’s old, broken down recliner in what should be her dining room, but I kept a few sets of sheets in case she ever changes her mind. Erring toward hope, I decided to freshen up the recently cleared off bed.
I pulled back the musty comforter and sheets, and saw that my grandmother had used a ballpoint pen to draw faces and write words on the fitted sheet. I crawled onto the bed and kneeled over her art for closer inspection. Some of the faces had hair, some sported sideways smiles, and some had a straight line where a mouth would be.
She signed her autograph a few times, and in black Sharpie penned a note to me, “Hi Jaime,” she wrote, “Hope all is well with you, Love ya,” and next to it a simple, “Hi Jaime” in perfect cursive. With an impossible lump in my throat I stripped those sheets off the bed.
I’ve always loved that verb for changing a bed: strip. I exposed it; I made it naked. It felt wrong—stripping my grandmother of her secrets—but someone has to do it and the job’s defaulted to me. The bare mattress was deplorable. Its satin cover has vertical splits, and a ruptured side seam exposed the inner foam and wire. Even without a body sleeping on it the mattress came undone from the weight of what’s been piled on it for years.
I located a mattress cover, a set of soft, clean sheets and a heavy, brocade coverlet that my parents bought on their honeymoon in Greece. I pulled the linens taut, tucked tight hospital corners and jammed clumpy pillows into cases and decorative shams. I made it beautiful. I made that bed as if it matters, as if it might make a difference.
When I finished I stood back, admired my work and burst into tears. When I’m doing this work with my mother I try to keep it together, but alone I let it rip. I sobbed and worried about how much of my grandmother’s turmoil is inside me, and I wondered, as I often do, why we’re so culturally adverse to showing our true feelings. And I don’t mean just my family, though we seem to have a bad case of it.
My cleaning is not going to mend my grandmother’s brain or heart, but yet I continue. I dig through the rubble and scrub surfaces in part because it needs to get done, but also because an organized exterior might calm some of the agitation that percolates inside her. I have faith and hope in that possibility, but I do this work for a different reason: I do it for love.
On some level I’m doing this work more for me than for anything or anyone else. I do it because loving someone when it’s difficult is one of life’s greatest challenges and rewards.
We have a responsibility to care for our young and our old, and often the work is terrible. I have to tell my grandmother, “You wore that yesterday. You can’t wear it today.” I don’t mention the previous days because she can’t remember those. I have to tell her when she wets her pants and needs to change, and then I have to take the soiled garments and bag them because if I don’t she’ll squirrel them away. It’s degrading for her, but I do it with as much compassion and grace as possible and I’m constantly amazed at what we’re capable of when choice is removed from the equation.
I like a plan, but my mother and I were so far out of our depths that drowning pushed in, so I hired two geriatric care consultants to come assess the situation and help us devise a strategy. The five of us sat around my mother’s dining room table—actually, my grandmother stood, too lathered to sit—and we didn’t make much progress because all my grandmother wanted to talk about was how furious she was at me for inviting strangers into our private business. I assured her I did it out of love, and she said, “If this is the way you show love I’d rather you hate me.”
She asked me who died and left me boss, told me I should be ashamed of myself, and ordered me to leave her the hell alone. The emotions passed, and within minutes she’d forgotten her anger and agreed with the consultants who told her how lucky she is to have a granddaughter who cares so much. I told my grandmother I was confused because minutes earlier she’d told me to pack my bags. At the end of my rope I asked, “Which is it?”
“I love you when you’re not giving me a hard time,” she said laughing, and my reply shocked me, “Are you telling me that your love is conditional?” The underlying causes of OCD and compulsive hoarding are immense, but among them are a fear of not being loved and a desire to receive love through control. With the added attraction of dementia, my grandmother’s well-honed defenses are down and her natural inclinations are up. To say the situation is dicey is an understatement.
One of the phrases my grandmother has always used to diffuse a situation is one she still employs regularly, “Everything is under control, baby. Don’t you worry.” For most of my life I’ve believed everything my grandmother’s told me, but those days are over. I’m no longer buying; I just can’t. It’s not helping and it isn’t the path that will guide us out of this mess.
I’ve realized that the more out of control things are the more adamantly she’ll try to convince me that they’re not. The more she smiles in the midst of chaos, the more I prepare for the bottom dropping out. I actually feel encouraged when she cries, because although it’s sad, she’s expressing her emotions without resorting to rage or compulsions. This is good. I think she’s as tired of the worn-out stories and excuses as I am.
Each day new truths manifest from the dregs, and the path is clearing. I see that it’s the truth that will get us out. Well, that and smiling.
Thank you for sharing!
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Wow Jaime. Your grandmother definitely is lucky to have you, even though she can’t express it. That’s a very selfless act you’ve undertaken. I can’t imagine the dread, not just because of the immensity of the job but because it is such a sad physical manifestation of what’s going on inside her head. But there must be some comfort in knowing that even though you can’t fix the dementia and whatever else is wrong, you can clean up her environment. At least that Jon has a definite end. Thanks for sharing this. Xo
Thanks, Steph. So much.
Great article Jaime, thanks.
Thank YOU, Jeremy.
This reminds me of how it was between Ripley and myself in her last years. Not the hoarding, but the anger and resentment she had towards me for “helping” her. It’s a tough road, but it is necessary. I should have asked Ripley about the conditional love thing too. Much love to you Jaime.
Thanks, Ici. The best part about the stripped, naked, honest sharing is that none of us has to fight these fights alone. we’re all in it together; all of it. xo
Wow Jaime you are going thru all of this , you are an amazing woman. It would be so hard. Wish I was there to help with my cleaning skills. I know what a difficult touchy situation it can be thou for hoarders.
Sending you lots of strength & remember to smile. Laurie
Thanks, Laurie. Your daily doses of inspiration really help! xo
Wow Jaime. Thank you for opening a page most are so uncomfortable to share. My GiGi was no where near this point, but two summers ago at 92 my mother and I helped her through her last months. As hard as it is you will someday cherish these days. I am so ok to have helped her remember, give away, go potty, remember some more, eat, medicate, say goodbye. It is so hard and you are amazing for doing what you are. Good luck and keep on keepin’ on! Miss you girl, remember some of those old crazy days to keep you smiling!
Thanks, Maya. I’m already grateful for this time challenging as it is to be in it. and YES! Remembering the old crazy days often brings a smile to my face! So young, so reckless, so LUCKY.