The role i played in Grief

Carer, Sorter, Watcher, Wonderer, Dreamer

What follows is a collection of thoughts, reflections, and poems written during the stages of my Nana’s decline into Parkinson's and Dementia. Sometimes in the middle of the night, I would get this pang to write, the feelings demanding to become written words.

Care Taker

Everything here is loud and pungent. An orchestra of ABC news anchors booming voices bouncing off the paneled walls. The table before me has enough pill bottles on it to look like a trypophobic’s nightmare. I can smell the concoctions in each pill, the moment her thin leathery fingers slip each little egg of life beyond her lips. Can all this really be worth it? A few more years of sucking down breath, chugging down pills, and sipping nutritional supplements just so her bones don't rot while they're still inside her. And the loneliness... Sure I'm here but I'm not great company, great company doesn't judge your home and wonder if your golden years are worth living.

I just sit here, in the thick fog of sensations, not saying anything less I say something that triggers her frustration or confusion. I can do the dishes, push her chair in, and lock the windows at night but if I try to grab the phone while she talks to a scammer she’ll slap my hands away.

What would ease this situation? Therapy says communication, sympathy, and acceptance. But I can’t communicate with a woman who’s a shell of herself. Hell, she can barely tell me or rather shout at me how she likes her bed to be made - let alone converse on why I am crying.

Sympathy I have in gallons, weighing me down while I trudge through her home. All the good it does me, if I imagine myself in her position - I’d want to be laid down, given some tea, and smothered. But I accept that not all would choose to go out this way. So I sit here, head aching with all these thoughts, my young heartbreaking as I watch her crumble. All the while pretending to enjoy my tea as I accept this is the best I can give. 

Watcher

I watch you sleep, a brief peace from the otherwise hectic cycle of days spent falling. You can't balance yourself. Nor upright your life as it now declines. I can't pick you up, fix you, barely able to comfort you in the waking hours. So, I watch you sleep... dark fantasies playing out in my mind - ending your illness, smothering out your light. End, kill, give mercy to. Whatever words I choose I know would not matter in my trial of peers. But feet planted by your bedside I feel the old blooded call, ancient cries acceptedly snuffed out in the echo of cave walls. I pity you while praying you die. All my old memories of us, decades of kindness turning sour with your confused screams. Your occasional clear mind only adds to my misery, plain speech from your withered mouth an insult to the depth your mind used to have. I pray you don't wake so instead you can reclaim your home in my memory.

Sorter

The home you wanted to die in was sold, walls torn down with a fresh coat of paint applied to cover and sponge away all our old times. Seeing the place you raised me in, I am glad it now it looks nothing like the place we once shared. You were my Nana, a wise woman whose father told her the Bible could only be understood by men. I packed your books, my spine aching as I loaded the lectures and encyclopedias you painstakingly read. You would have made a good preacher if given the voice. Your Quaran now sits on my shelf, your father's Bible worn and battered in a box under my bed. Your husband's rosaries, his sisters, his father's, and countless beads whose owners I do not know dangle from a plastic skeleton in my dining room. 

So many possessions were left behind… Your mother's side table, too long and oddly shaped to fit into my home. Photos, boxes and boxes worth of your children's memories, likely tossed into the new homeowner's dumpster. I saved the old family photos, generations old though I will have no children to pass them on to. Your aunt's kiln and grandpa’s tools, one too heavy for me to take and the others I feared scolding if grabbed. I was made to feel like a crab scuttling along the corpse of a whale, birds flocking down overhead threatening with their beaks - their squawks of betrayal. Communication would have been useful here, but I was so tired of my words being misheard. 

For the first time, I felt anger, bubbling destain for those I shared blood with. Some of that venom at you, it was so hard to find what was precious mixed in with the loads of garbage you kept. Why did you take my dog's old dirty collar from the trash and stow it in a drawer? It can’t all be blamed on your illness. The worn floorboards and moldy shower grout were the result of decades of your OCD - cleaning to the point of destruction. 

But more so the anger I felt was at your daughter - the one by whose name you sometimes call me. Overseas and far away for the thirty-odd years I’ve existed and yet she had the gall to say I wasn’t doing enough for you. That since you aided me while I was in the hospital I should now repay that debt. How fucking dare she… As if the last eight years of my life hadn’t been spent every day with you. I was no freeloader, I paid ⅓ my income to live in your attic. I paid for my groceries. I cleaned. I took you to church and babysat you while your mind declined. Fuck her. And while she flew back overseas, I was the one going through that shell of a home to try and salvage anything meaningful. Unsure of who would buy that decrepit home, I boxed up as much garbage and junk to make things easier for it to sell and get you money. But while I am adult enough to understand her projecting her own shortcomings, I will not put up with insult. 

Every box and bag of garbage offloaded from your home felt like a flake of a wound healing. Soon… Soon I wouldn’t have to put up with anyone’s disrespect. This home turned blister would be sold and done with, not my problem anymore. To be fair, it was never my problem - the grandchild's problem. I helped because I was kind, a final kindness. 

And to be blunt, a grandmother visiting their half burnt to death grandchild who has a chance of recovery OR DEATH is not comparable to a handy-capable but still fucking disabled grandchild being a nurse to their emotionally unstable and too heavy to be lifted when she falls grandmother. A grandmother whose decline into death won’t be a matter of months but years. So sorry it took me five days to visit Nana at the rehab place. My humblest repent that I thought you flying over would be here to help and spread the load.

 My mistake. 

Visitor 

Wearing a smile… I stand nearby. Hopefully, you can't tell I’m too fearful to sit, my mind busy with the images of your diaper and wondering what surfaces you’ve likely pissed yourself on. Nowhere feels clean to me, and yet you insist - SIT. Otherwise, your new studio is nice, like a hotel room for the dying. There’s even a window looking out on a garden. But there’s an eerieness to it, not that I claim to feel ghosts, the paint, the decor, the carpet - it all has this ‘easy to wash’ look to it and cheap. Surprisingly cheap considering the eight grand a month price the room carries, though the weight of that tag hangs around your throat - the little nurse beeper you neglect to use. Rather, resorting to demanding I help you to the restroom, a task I am utterly uncomfortable with. Even simply lifting you from wheelchair to lounge - you sit midair and nearly wrench my young spine - I know you can stand but your mind forgets.

You’re just so unpredictable. 

My first boundary was: If you hit me I’d never come back.

But we’ve passed that, I can’t remember the moment, my mind has already blurred it out. Some argument, me trying to speak reasonably, then your frail arms thwaping my chest. I wish you were stronger, maybe if you punched me I’d stick to that boundary and feel okay writing you off. But you’re just so weak now that any attack lends to aid your patheticness. How can I abandon you now?

I don’t know why I’m writing this to - you. You’ll never get to read it.

 My Nana’s mind has long rotted past the point of comprehending written text, and I’ll never read this to her. I have to write to someone… to myself? To whosever’s eyes are whipping through this sentence now. I want to communicate my pain. My wish that this could have gone differently. Dear Reader, do things differently. Young or old, prepare for the end of your days - even something as simple as a note. Express your desires and contemplate the future, your end. I pray it won’t be akin to the slow drawn-out decline of my Nana. Or that maybe, Reader, that you’ll be bestowed with a more understanding grandchild, family, friend, someone less apathetic than I. 

Who else am I supposed to be if not the kind coward who adds false whimsey to their goodbye as I scamper towards the door, fists knotting when the old woman wearing my Nana’s face lurches in her chair and weeps not with tears but confusion at where I am going. Mewling…. She is like a baby, words cannot soothe her. I’d speak my tongue raw if I thought the noise would do her any good. My partner's hand on my shoulder signals I’ve already said too much and that the only outcome is my heart further cracking. There is no reasoning with someone whose brain is under siege by amyloid plaques and tau tangles.

She

Nana, oh paternal womb, you were fleeting. I got thirty-ish years with Nancy, weekends away from my fighting parents. Sundays at church. A whole eight years of living in her attic during college. So many meals…. She used to take me to Block Buster when I was a teen and we’d pick something out to watch together. She read me all the Harry Potter books. We used to watch True Crime shows in her bed and she rubbed my feet. 

I cut her nails once her hands got too weak. 

Thirty years… And I feel like I barely knew her. So vague was she about most of her life. I know she loved the Bible and had childhood dreams of maybe being a priest. That as a mother she feared she was a disappointment to her kids. She rarely spoke about being a wife. She listened more than she spoke. She was terrible at not downloading spyware and misplacing her passwords. She loved her grandkids. The little fragments of pebbled memories I search my brain for are washed in the sorrows we shared. She was my confidant, even if a generation of understanding separated us. 

She had terrible OCD. She used to love to dye her hair red until it eventually made her scalp itchy. It became harder to find her in crowds once she dawned her silver doo. She used to smoke cigarettes before she became a mother or atleast after her first child. She was an avid reader and once bought 50 Shades of Grey despite me telling her it would be horrible, only for her to finish the book and lament over how dumb it was. I’d asked her to take an art class with me, but she refused saying she wasn’t any good. 

My Nana wanted to eat every dinner together even when it drove me crazy… One night in college she waited up for my night class to end and as soon as I got through the door she insisted we sit. I cried, the ride home had made me car sick and I just wanted some space. I had pleaded that she eat earlier without me. Please. Please. I just need one quiet meal alone in the dark after a long day. No. We both went to bed hungry, until discovering each other midnight snacking later. 

She did not like my male visitors - that scowl.

She hated Trump and once said that if America ever got so terrible as to the need to hide people akin to the holocaust, that she would offer up her home.

I wish I could remember more about her. The terrible strife of the human brain, still primal I recall more of the bad than good. The family screaming matches, her stomping feet and pounding hands. I wish I could remember more clearly the little weekend trips we took. The monastery pebble maze she took me to. I only have 1 voicemail of her strong voice. 

What Next?

  Tomorrow I visit you, four weeks since I’ve seen you last. Two full years since I moved out. Your son says you’ll be in a memory ward by summer. You are practically a husk. I’ve needed this time, to rest. But the time apart makes me more fearful of what comes next. 

—--- 

The media never prepared me for this feeling. No show prepared me for the plunge of loss or book the discomfort. I brought Dunkin Donuts munchkins, a big box to share, though I treated myself to its sacred sweetness while in the parking lot ensuring a flicker of sugar before old hands defiled the rest. This was my first time in a memory ward. You had a childlike smile and introduced me as your daughter before that flicker of understanding faded. I showed you my wedding ring. Fed you a munchkin. Offered the rest to the room full of what used to be people. Some had life in their eyes, kindness and smiles at me visiting. However most at the tables seemed distant, like mannequins. One woman stared, I couldn't tell if my presence bothered her. She tried to walk to our table, my partner thought she wanted the door to the garden but they aren't allowed outside. She just wanted to look at us. 

The attendants insisted I view my Nana’s new room. A few decorations. Easier to clean tile floors. Each entrance door had a little plaque that could be decorated with the interests, family photos, happiness - Nana’s is blank beside her name. 

This would come to be our final visit, my Uncle later called to say he was moving Nana to a facility near him, three hours away. My breath caught during that call, my voice feigned understanding - I partly felt free - no more awkward painful visits. Partly I felt… sad. I wish we could have had a real goodbye. A hug with full awareness. With my other grandmother, I hugged her goodbye every time, she being 92 death is/was expected, I never expected this gradual loss. It's horrible watching a mind decay. 

A final visit, and yet there still might be more, maybe I'll make the three hour drive just to sit there. Still… it feels like in my heart that Nancy - Nana is dead. No more dinners, phone calls ending with the phrase ‘hugs and kisses’, or her telling me I'm dressed too scantily. I wish I could remember her laugh. My mind recalls her joy, there are slivers of it in that mindless child-like smile that masks her face in temporary place of the nothingness that is slowly consuming her.

What am I supposed to do when all hope has died and yet the shell of a person still lives?

Dreamer

 Many months have gone by now, I’ve lost tack honestly. Sometimes while driving through our old neighborhood I think about driving past the family home - but I don’t. Those panneled walls and worn floors still exist very much intact in my dreams. Normally, I dream of going to garage sales where there is an endless bounty of treasure to find - but in these dreams the bounty takes the form of forgotten boxes piled around me. 

What if I forgot something dear to Nana? 

What if some small keepsake missed my scrutiny and has now ceased to exist.

That worry lingers in my bones and spreads like a contamination into my psyche. Every time I dream of the red brick home I spent my father’s custody weekends in - it becomes the setting for a nightmare. In some Nana is back to near normal, cured or perhaps in a disease respite - and she hates me. This new sturdy voice banishes me for daring to leave her side. In the waking world, I know or at least hope there is no truth in those ghoulish statements, that her yet-to-be-deceased ghost is not haunting me. More likely, these dreams are just shaped by generational trauma - I was raised to do more, to always be of service, to be kind even when my shell of being feels like it is about to shatter. I’m trying to break that shell now, to treat it like the thin walls of an egg I can emerge from - becoming my own being - one whose flesh isn’t made up of the emotional scars of service. Through writing this, cleaning that home despite the risk of injury to my frail skin - I feel a new chapter of my life beginning. 

There’s this truth, it is given shape in the dreamscape, that what I used to submit myself to was unfair… It is unfair that as a child I learned to become an emotional comfort to adults. It is unfair that when I recounted stories of abuse to my Nana that she had stories to match, stories and concerns and deep lamentations about her life that I am sure she had only ever shared with God until that moment. It is unfair that there is no way to comfort a person out of grief. Lastly, it is unfair that I still feel guilt at complaining.

Writing this, knowing I want to share this story, I feel a sickly heat in my chest that the reader will think - “what are they complaining about” or “man, their syntax is all wrong” - my grammar might be faulty but this is the shape my emotions take. The dash - the symbol of a small breath before a critical blow or thought, something I value.

I dream that one day… I’ll capture myself, understand myself… to what purpose I am unsure. But just as I worry I missed some sacred artifact of my Nan or truly - that I never asked her the right question so I could fully know her - to do her memory justice. That there are so many people with their stories, pains, pieces that make up the relics of their being - that I want to learn about them/you before those precious pieces become a fossil. In my dreams, there is a piece of Nana still alive and while it is a warped perspective at least it is a way to still see her, and whatever words wrasp from its throat maybe it is confronting me with the tools I need to move forward. Through the bitterness, the recall of expectations, the reliving of terrible times - the tears that may bless my face when I wake. I seek to understand the symbolism my inner superego is throwing at me. I dream that someday I’ll understand my past, the generations of bygone impressions laid upon my own soul. 

And that my words might do these experiences justice.

Maybe this reflection will stir something in your soul - some understanding.

 I pray to the sometimes soft and often brutal forces of Mother Nature, that beyond the negative emotions of pain or sorrow, you’ll bestow yourself with grace. 

The grace I am trying to give myself, the grace I have so freely given to others.

I am grateful for you.