Returning Home

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RETURNING HOME

It was late October 2011 when I became an inhabitant again of the permeable borderland between The Capital of the World and the US Capitol. So much of the human blood that passes through the paved veins and arteries connecting New York City to Washington, DC feeds from the capillary rich bed of the glorious Garden State. Dirty Jerz, the state that makes people cringe when you tell them this is where you come from. New Jersey. My home.

For a long time, I had felt the inevitability of this return.  Throughout 2007, I was tormented by a spell of nightmares alerting me that at some yet to be determined point I would be compelled back to my home state. I had left my family behind 2 years prior – mother, father, sister, brother, pets, friends – and made a home in the Northeast’s literal land of milk and honey. I left the place where I had come of age on the short leash of a mother living with mental illness and her gracious angel of oblivion – my father. I left the suburban pit of strip mall lined communities for a place where the word community ripened into meaning – daily encounters at co-op markets, dancing every weekend together, summer gatherings on the common. I left the brutal corridor of concrete-channeled winds for the hilly harsh winters that are always celebrated. Vermont. I had only been living amid the Green Mountains for 2 years, and there were lingering and pained aspects of my identity still wrapped in my birthplace roots. Visits home were distressing, and I rarely stayed longer than a day or two despite the long travel required.  I never wanted to fathom returning. I had a new home now.

My intuitions and dreams throughout this period stole rest from sleep. An expeditious anxiety wove tangled thought fibers into cloaking migraines. The cradle in my chest ached constantly for what I did not know. I tossed the nights in fear of that place. New Jersey. Why was it calling me back? My feelings seemed irrational at the time. My family was stable. Dad continued to work, alongside his brother, running the family upholstery shop his own father had started 55 years prior. Mom was entering her 18th year as an employee of the local school district. Together they maintained the house they raised us in as well as their dysfunctional devotion to each other. My siblings had jobs, partners, homes, and happiness plus they lived within 10 miles of my parents and were emotionally close to them. My growing unease didn’t make sense to me.

But then something happened which amplified my dread. I received a call from my parents one brilliantly sunny March day – the kind of day that fools you from the inside where the streams of sun through the window kiss from your body winter’s thick shell. It’s the kind of day that excites an early spring fever until you step out into the severity and then suddenly that shell is restored and now almost too much to bear. That call from my parents and this particular day were augmented by each other. I answered the familiar number to the sun streams of their serenading voices – “Happy Birthday To You.” It was one of those bittersweet moments. Their loving so bright and so apparent yet, here it was March something or other, and I, their first born, wouldn’t actually celebrate my birth until May. May 5, 1980. That was the day they brought me into the world. Years later, on a similar sort of day in New Jersey, I would remember that call as I watched my mother, in a state of dismay, frantically searching about her home – inside and out – opening doors, closing doors, calling names, racing violently about the yard, looking for the “kids.” “Where are the kids? Please! Help me! Where are my kids?! They were just here!”

Two and a half years later, at the tail end of 2009, everything started unraveling and the visions that had haunted me became an imminent reality. My father and uncle had finally found a buyer for their South 4th Street property in Philadelphia and the family upholstery business that my immigrant grandfather had built as the lifeblood of the Brood lineage had finally been run into the ground by corporate materialism and the birth of a disposable furniture industry. Their art had died and the thousands of textures that had woven the fabric of our lives were hoarded to basements, trucked off to charities, and in the end, just dumped.  This was a difficult time for our family.  Dad’s health, in the stress of such blatant disgrace, declined rapidly and within a month he was diagnosed with Alzheimer’s disease. Less than 4 months later, it was mom’s turn. With 16 years between them and contrasting histories, their shared diagnosis didn’t seem to faze the eagerly prescribing -iatrists and -ologists who studied them. “Take two pills and come back next month. In the meantime, work on some crossword puzzles.” I was reckless for answers. “Why is this happening to both my parents?” “Is there something in their environment causing this condition?” “How do I care for them?” “Will this happen to me?”

In the aftermath of the store closing and my parents’ diagnoses, I was traveling to New Jersey each month throughout 2010 and much of 2011 spending a week at a time immersed in care for my parents. I planned their medical appointments for days when I would be in town, paid the bills, cleaned the house, prepared hot meals. For 7 straight days I was their unconditional caregiver. My siblings were at hand throughout the other weeks to look in on them and provide support. I was fortunate to have had work that allowed me the mobility to spend unbroken weeks with them. Mom and Dad’s independence declined slowly throughout these years so full-time care was not immediately critical. Dad was still able to drive for simple groceries and mom still recognized her environment so they made due for a while with our modest interventions. It is hard to describe the early days of an Alzheimer’s sentence. A gentle fog rolls in and lingers for a while, deepening ever so gradually until one day you wake in blindness – into a confusion so thick, you forget forgetting.  

In the early months after their sentencing, I was certain I could somehow organize a supportive infrastructure that would allow me to maintain my mobile lifestyle – moving between New England and New Jersey, the Adirondacks of New York, and for a while there Michigan.  I could not fathom the course of action necessary to transition the relationships I had established in these places. I was working on a variety of projects in each plus cultivating intimate connections with mentors, friends, and a lover. I was scattered to the far reaches of a northern landscape that guarded intimate splinters of the self I had sought to reconcile when I left New Jersey.

As my parents’ conditions changed and by progression their care needs, my sister and brother urged my full-time return. Day in and day out they witnessed memories and functions fade and then fall away altogether. Our parents were becoming more and more needy, and we were nearing the time when they could no longer be on their own. This was something we needed to go through together. And so I was called back to New Jersey as I had visioned years before. But this time I was ready.

So I returned.

To the strawberries and cream tufted carpet of my childhood. To the deep pink chair rail. To a rose garden papered beneath a star strewn ceiling. For those first months, if you could have imagined away the wall between my parents’ room and mine, you would have seen us lying head to head. Through that thin night space, I accustomed to their incalculable movements – to the perturbed pacing; to the stretches of deep sleep authenticated by resounding snores; to the lavatory trickles and flushes; to lights flickering on, off, on, off; to the sharp click of the thermostat being pressed up, up, up – an increase exaggerated for thinning skin and bewildered senses; to forced hot air pressing through invisible conduits, and the other sundry creaks and cries of a dwelling being roamed.

Those first months of my return were temporary. I had grandiose visions of order, tidiness, ease and flow. I planned an elaborate system that could run on its own without me there, thinking this was all it would take – a few months of fixated attention, electronic bills, pill boxes, a day-by-day guide to meals. I thought they would be able to carry on independently, and that soon I would resume my Vermont life. But as the months spanned, the fog thickened and obscured my foreseeable way back.

Dad confessed to getting lost while driving, despite being less than a mile from home. Mom fed the cat ten times a day, and failed to wash her hands. Dad felt useless. Mom acted careless. She’d turn the oven on for no reason, amble haphazardly about the house, fidget and fiddle with every object she encountered. He would wear himself out pacing the halls, and then pick through the trash on especially energetic days. Mom started hoarding things – napkins, socks, sanitary pads – under her pillow, beneath her mattress, between folds on the ottoman. She packed and unpacked her entire wardrobe. She begged us to take her home. He yelled at her: “We are home!” And then the night roaming began before that day replayed itself, again and again and again.

An anonymous mandate had subpoenaed me back for an unfixed time. I would come to understand, living fully within dementia’s borderless dominion, that I had been called, not to stand trial against Alzheimer’s disease, rather as a participant within a restorative justice process. Amid the casualties – in the thick of all the many wars being waged against not just Alzheimer’s, but illness in general – I became the witness, the scribe, and the storyteller.

3 Comments

  • Reply Claudia March 11, 2016 at 9:04 am

    Just discovered your site and this is my life. Thank you for putting into words how I feel every day.

  • Reply Maggy April 26, 2016 at 10:05 pm

    Elizabeth, we met today and I am in awe with everything you are dealing with and really inspired by you.

  • Reply Joan January 19, 2017 at 2:10 pm

    I found your site through a link in the NYT. Yes, I am doing home care for my parents as well. I am glad you are at least able to get to the gym, and do this eloquent expression of caregiving. Thank you for your site, and what you are doing. There are tens of millions of us in this “club.” Every good wish to you and your folks.

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