Love Transcends Rules

<strong>Love Transcends Rules</strong>

Point Pleasant Nursing Home was a popular employer for minimum wage teenage workers.

The Jersey Shore’s borough of Point Pleasant straddles an expanded spit of land on the Atlantic Ocean between the Manasquan and Metedeconk Rivers. The 25,000 year-round residents reluctantly provide an oceanfront haven for summer visitors. Evelyn Adams, two-time winner of the New Jersey Lottery, is Point Pleasant’s most famous citizen.

An old colonial institution, Point Pleasant Nursing Home sat on the highway a mile away from the mainstreet town of shops and restaurants. Shoppers at the Brave New World Surf Shop across the road supplied a low level hum of traffic.

At my interview for the job, a clear dress code was laid out: wear a uniform, no flip flops, no make-up and no jewelry. My waitress uniforms from two previous jobs at the Asbury Park boardwalk and the Olde Mill Inn were acceptable. 

New employees trained on the night shift. On my first night I clocked in at 11:00 pm. A seasoned attendant showed me the ropes. Direct patient care, other than help feeding those who needed it, was the responsibility of the nurses. We were helpers. 

Some residents were roaming the halls though it was way past lights out. We left them alone so they wouldn’t get too agitated and scream at us, which would have cascaded into waking others. Eventually they would go to their rooms, but we had to keep an eye on them lest they fall asleep in the hallway and keel over. There’s a certain knack, instinct maybe, to knowing just the right point to steer people into bed. It might be droopy eyelids, slower walking, leaning against the walls; every patient’s body gave off a different signal. My trainer told me not to worry, that I’d pick it up fast.

When all were safely tucked into bed, we began straightening up the day room while listening for disturbances from the sleeping patients. My job was to put games like Monopoly, bingo and chess in their respective boxes and wiggle them into overstuffed cabinets. I wrote down pieces of each game that were missing so the next shift could look for them in patients’ hiding spots—pockets, drawers, purses.

A completed jigsaw puzzle of an Impressionist painting lay on its box cover under a window. I put the pieces back in the box and stuffed it into the cabinet along with art supplies, books and magazines. The maintenance crew cleaned and swept.

I was instructed to offer a simple greeting to each awakening patient before my shift ended at 7:00. One woman wandered toward the day room. I followed her. She stopped at the space where the completed jigsaw had been and looked at me panic-stricken. In a flash she grabbed my hair, shrieked I stole her art, and smacked me in the face. By the time the nurse reached us we were both screaming.

And that was the end of that job.

Twenty-five years later my mother was moved to Point Pleasant Nursing Home after assisted living facilities could no longer care for her. By that time all the people with Alzheimer’s disease and other dementias lived in dormitory settings on the first floor. My mother spent her time taking clothes and jewelry from others and hiding them in her closet. The nurses kept a watchful eye but said nothing. They were as relaxed with her as they were years prior when people roamed the halls until they tired out. 

Until the last, my mother did what she always loved: broke the rules.

Good Memories by Veronica Cook

Good Memories by Veronica Cook

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Guest blogger Veronica Cook and I share in the joys and benefits of the Good Memories Choir in Chicago. Veronica reflects here on her musical life.  


 

When I was a child, we weren’t what you’d call a musical family, but there were always songs. It might have been my big sister boogying around with her finger in the air to Jeepers Creepers, Where’d you Get Those Peepers. Or my mother and I humming along with a light opera song on the radio (O Rosemarie, I  love  you…). All through my life there have been refrains to hum. However in the last few years, while a tune may have played in my head, my voice was having a hard time matching it. Wonderfully enough, it’s coming back little by little because I’ve joined the newly-formed Good Memories Choir.

I now can hear myself carrying the harmony.

At the beginning of each new concert season comes a whole new repertoire of tune fragments to spin around in my brain. At Christmas it was the haunting lyrical tenor of Ose Shalom; the beginning of White Christmas …there’s never been such a day-ay, in Beverly Hills L.A…; and the upbeat conclusion of Go Tell It on the Mountain …that Jesus Christ is born-orn, that Jesus Christ is born-orn.

As I reflect on my choir, a theme emerges that is much more than any one song or one concert. In fact, it’s more than even the music. Founders Jonathan and Sandy Miller have begun a far reaching and profound community. It is heartening to recognize each of us has a hand in shaping this new creation.

The Good Memories website describes the choir as “… a fun, upbeat community where people with early-stage memory loss and their care partners sing together, enjoying familiar music they love.” Yet, there are no one-size-fits-all categories describing the folks in this choir. Unique life circumstances puts everyone at a different way-station along the journey into aging.

I’ve become aware that in the struggle with physical and cognitive decline, we differ only in degree. Likewise, the loneliness and isolation that can so often accompany the onset of memory loss is something that all of us experience in some form. The support, encouragement, the warmth of friendship that we exchange are grace-filled gifts for us all.

Tuesday morning gatherings that get us started seem deceptively simple and down to earth. We are welcomed by the familiar smiles of fellow choir members as we gather in our rehearsal room. We cluster around the coffee pot, savor an array of sweet and savory homemade snacks. There is a collage of expectant faces, the beaming smile of one, the delighted greeting from another, the oohs and aahs over special treats. Compliments are exchanged: earrings, a new coat, a sweater pattern. We catch up with each others’ news. We are at home here, surrounded by new friends. And then it’s time to warm up with Oh What a Beautiful Morning! 

Always front and center is the music. Singing! Having come close to my voice deserting me, I glory in what this means: making a melody emerge from within my being, and even better, to make it harmonize with others. Joining our voices in song is central. This is the precious gift we give and receive from each other.

I stole a look at the Spring 2020 Good Memories repertoire. I invite you to come hear us on May 12th at 12:00 noon, Fourth Presbyterian Church, 126 East Chestnut St, Chicago. You’ll hear Waitin’ for the Light to Shine, Kol Haneshama Tehalel Yah Bonia Shur, Storm is Passing Over, What a Wonderful World, Long Ago and Far Away, Bridge over Troubled Water and the finale that says it allHow Can I Keep from Singing! 


Join a Choir! If you live in the Chicago area, click here.

If you live elsewhere, check out the worldwide Giving Voice Initiative (GVI). If you don’t see a chorus listed near you, start your own!  www.givingvoicechorus.org.

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Fear of Dying Without Dignity

Fear of Dying Without Dignity

The facilitator outlined the steps to execute a health care power-of-attorney, letting us know every state is different. I knew we were about to go off the rails when a class member asked about Florida laws. We were in Chicago. But the real turning point came when a woman announced her parents died of Alzheimer’s.

”I just want to know where to get the pills” she said, “and how will I know when to take them?”

She was talking about suicide.

I’ve been schooled on end-of-life living wills, advance directives and “practitioner orders for life-sustaining treatment” (POLST). These documents allow us to describe our wishes POLSTat the end, and to designate someone to decide medical treatment when we can’t speak for ourselves. All my papers are in order. For all the Death Cafes, Journey Care and Compassion & Choice discussion groups I’ve attended, never have I been in a roomful of people who turned the conversation so fast and openly to how and when to commit hari-kari before they couldn’t speak for themselves.

The Conversation Project® is yet another public engagement initiative with a goal to have every person’s wishes for end-of-life care expressed and respected. Representatives from the Project don’t come armed with facts on assisted-suicide, or how to identify that one perfect moment before you lose your marbles completely. They do, however, listen. And in my group, person after person expressed fear of not being able to off themselves in time.

One man told us he holds the health care power-of-attorney for his mother, that her instructions are explicit, but he can’t bring himself to pull the plug.

“I’m afraid my siblings will all get mad at me,” he said.

Everyone gasped. It’s what we all fear the most.

I never thought of the possibility that I’d be kept alive beyond my sell-by date. I’m not afraid to die. I’ve thought about it my entire sentient life. Huddled under my first-grade desk waiting for an atomic bomb to drop, I knew I’d be going to heaven to see Jesus (my best friend at the time). What’s to fear? I even tried it out once. I took eighty sleeping pills when I was twenty-four because I knew there was a better place than Point Pleasant Beach, New Jersey, in the cold grey winter.

The idea of my body curling up to a breathing machine and a feeding tube without my consent or knowledge is new. Each and every daybreak now I wake with fear, unable to face the day. I use Anne LaMotte’s simple prayer, “Help me. Help me. Help me,” just to get out of bed.th

On a recent temperate morning I walked Henry on our tree-lined motionless street. A
gust of wind came along suddenly and blew the fall leaves off an overhead honey locust. We stood in a yellow-leafed shower, swaddled in fluorescent care. And the fear of dying without dignity moved off into the gutter for the day.


Death Cafe

Illinois POLST

Conversation Project

Journey Care