Life in the Slow Lane

Copyright © 2016 by Jean Misura

Life in the Slow Lane: I Live in a Nursing Home and I Like It

Published by McKinnon Books in Dallas, Texas. Visit www.McKinnon-Books.com.

All rights reserved. No part of this book may be reproduced, stored in a retrieval system, or transmitted in any form or by any means—electronic, mechanic, photocopy, recording, or otherwise—without written permission of the publisher, except for brief quotations in printed reviews.

Due to medical privacy rights and respect for the dignity of those with mental decline, all names except for family members have been changed.

Aunt Jane by Alden Nowlan used by permission of Nowlan’s estate and Claudine Nowlan. All rights reserved.

Editor: Kelli Sallman

Cover design: Brett Grimes Design

Interior Design and Typesetting: Draft2Digital

Publisher’s Cataloging-In-Publication Data

(Prepared by The Donohue Group, Inc.)

Names: Misura, Jean.

Title: Life in the slow lane : I live in a nursing home and I like it / Jean Misura.

Description: Dallas, Texas : McKinnon Books, [2016]

Identifiers: LCCN 2016912645 | ISBN 978-0-9977878-0-1 | ISBN

978-0-9977878-1-8 (ebook)

Subjects: LCSH: Misura, Jean. | Nursing home patients—Anecdotes. | Nursing homes—Anecdotes. | Older people—Care—Anecdotes. | Older people—Dignity—Anecdotes.

Classification: LCC RC954.3 .M57 2016 (print) | LCC RC954.3 (ebook) | DDC 362.16—dc23

Printed in the United States of America

Chronology

Fall 1960 – Experiences first onset of multiple sclerosis at age forty

Fall 1967 – Receives official MS diagnosis

July 1970 – Needs cane

Sept. 1971 – Needs wheelchair

July 1976 – Confined by gallbladder surgery to hospital bed

May 1977 – Youngest daughter earns degree and leaves home

Nov. 1981 – Begins herbal and nutritional regimen

Feb. 1982 – Divorces Rudy

Mar. 1982 – Enters County Home and Infirmary

Aug. 1982 – Enters Amherst Nursing Home at age sixty-two

Jan. 1985 – Daughter dies

Dec. 1995 – Begins journaling

Apr. 1997 – Husband dies

Nov. 2008 – Dies from natural causes

Prologue

I have spent the past thirteen years in a nursing home.

In the fall of 1960, multiple sclerosis (MS) began its assault on my lifestyle. I was forty years old. Loss of peripheral vision in my left eye was the first indication that something was wrong. The ophthalmologist said, Go to your family doctor to see if he can find what’s causing it. He couldn’t. Six years later I went to an internist even though his fee was high. I needed a good diagnostician because my symptoms of weakness and fatigue had become so severe that they could no longer be ignored. Between the internist and a neurologist it was decided I had a demyelinating disease, their euphemism for this invasion that changes the lives of one’s whole family. My internist described the disease but never used the words multiple sclerosis. For this I would always be grateful. It removed much of the trauma from the revelation of this dreaded diagnosis.

A demyelinating disease is a disease of the central nervous system. A myelin sheath encases the spinal cord similar to the way insulation protects an electrical cord. Something erodes the myelin in apparently random attacks. This erosion interrupts communication from the brain to whichever area is controlled by the site of the erosion. The involved body parts depend on where along the spinal cord the attacks occur. My legs don’t move because, even though my brain is sending out the command, my legs don’t receive it. My left arm is also affected. But I am lucky that the MS hasn’t affected my speech as it does in some.

The internist recommended taking Lipoflavonoid, a dietary supplement combining vitamin C and some of the B vitamins. He said this sometimes helped if the problem is caught soon enough. Apparently, it wasn’t caught soon enough. I began to suspect that I had MS. When I asked the doctor during my annual physical a year later, he admitted that’s what it was. By this time I had had it for seven years, so my attitude was, So what else is new, which was a false air of stoicism. I think I infused myself with an emotional numbness.

The etiology of MS is still uncertain. Some in the medical community believe that it is a virus that attacks the myelin. Others think that it is an autoimmune disease where the body’s immune system goes berserk and attacks its own body protein. I tend to agree with the latter theory. Don’t know why. Gut instinct, I guess. Incidentally, there’s a very high incidence of MS in the Great Lakes region. No one knows how or why this is so.

I was luckier than some. I already had had my family. My daughter Nancy was twenty-three by the time I found out that my diagnosis was multiple sclerosis, seven years after the onset. She was living in Florida. Kathy was eighteen, Susan sixteen, and Peggy twelve. Shortly after the diagnosis, I became a wall-walker, using the furniture and walls to balance myself. I could still handle grocery shopping by using the outside wall of the house and the outside of the car to aid my entrance into the car. The grocery cart supported my supermarket rounds.

In the summer of 1970 I had to face the fact that my disease was progressing. By July I could no longer put off purchasing a cane. I went from cane to walker to wheelchair in fourteen months. My diagnosis may not have been traumatic but my descent into a wheelchair was. I sobbed and sobbed in helplessness. To never be able to walk again! This wasn’t real. It was a nightmare.

In July of 1976 I had to have my gall bladder removed. By Christmastime of that year, I realized that the hospital bed we had rented as a temporary convenience during my convalescence would be a continuing necessity. This was one step further into the loss of independence. But nobody ever promised me a rose garden, and it was a damn good thing. Because I sure wasn’t getting one.

In 1977 our youngest daughter Peggy graduated with an Associates Degree in radiation therapy and left for her first job treating cancer patients at a hospital one and a half hours from home. Our proximity to a university enabled us to hire students to help transfer me from bed to wheelchair to toilet and back as well as do some cooking and laundry in exchange for room and board. This worked out well for the next four years.

But my condition continued deteriorating, and I eventually realized it was becoming more difficult for just one person to transfer me. I was becoming weaker and less able to put any energy into the transfers. It was also an unpleasant atmosphere in which to try to maintain a normal family life.

Whether I was or not, I felt I was an irritant to my other family household members, which by this time was only my husband. I wasn’t sick. I looked healthy. I had a good appetite. I didn’t complain. I appeared to be content with having to have all my needs fulfilled by someone else. I wasn’t as content as I appeared to be, but I didn’t do a lot of complaining about my lot in life.

My husband Rudy had his own business, which made more demands on him than a nine-to-five job would have. He was a furrier—not a fur merchant—a true furrier. He made garments out of fur collars and other used but still good pieces of fur. He thus was able to sell them more cheaply than furriers who sold new garments.

When he came home after work, instead of having a wife who had dinner ready and a comforting embrace, he found a wife who needed to be waited on. Our marriage had not been a smooth one for many years. Rudy was paranoid, which made him difficult to live with. Both of us were stubborn. What little patience he had gradually eroded, and I felt he would be happier if he were free to make a life for himself. And I would be happier in a friendlier environment, among professionals who were paid to cope with problems like mine.

After a long emotional struggle, I decided to divorce him and move into a nursing home. He was reluctant. I think he felt the stigma of divorce more keenly than me. But I was adamant. Kathy was married and had her own family by this time. Sue had her own apartment. Nancy and Peggy lived out of state.

My children, my niece Judy, and her husband Don had been seeing an iridologist named Adele. She dealt in herbal healing. She treated no specific illness. She looked into the body through the eye, illuminated by a small light, and pinpointed the trouble spots. Her recommendations were designed to get rid of these trouble spots and to restore balance. Adele knew of my plight through my kids and Judy and Don. In November of 1981 she told Don, Tell Jean not to go into a nursing home until she sees me.

He made an appointment for me immediately, and a few weeks later my doctor’s secretary took me to the Catholic high school where Adele saw clients once a week. Because of the difficulty in transferring me, Adele did her viewing in the car.

My program included twenty-seven different vitamins and herbs (dandelion, alfalfa, licorice root, sarsaparilla, slippery elm, horsetail, comfrey, fenugreek, and others) in capsule or pill form one, two, or three times a day; several specific herb teas; and two drinks—one containing black cherry juice and a raw egg and the other containing a bunch of things including capsicum to make it spicy hot. There were many dietary restrictions—no sugar, coffee, tea, wheat flour, or citrus fruit (unless tree ripened). No nuts except in butter form, no red meat, and no tomatoes, green peppers, or eggplant. She recommended eating a lot of brown rice, lentils, yellow cornmeal, and parsley as well as eating fresh garlic and fresh ginger root three times per day, four vegetables with each meal, and four fresh fruits per day.

Assimilating all this was an exhausting schedule, but in a situation like mine you feel better trying something than doing nothing. I started the regimen that November.

Spontaneous remissions are not uncommon in cases of multiple sclerosis, but neither are they common. For twenty-one years I had been going steadily downhill, but starting that November, I found I no longer got worse. The program Adele put me on apparently stopped the progression of my disease. In spite of the skeptics I have encountered, I feel that a spontaneous remission at that exact time would have been too coincidental to be likely.

But the twenty-one years of steady decline still left me in need of professional care. Checking out nursing homes, I found out from my MS society counselor that our County Home and Infirmary had some young residents, so that was my first choice. I thought young residents would be more on the ball than older ones, more interesting to talk to.

I entered County Home in March of 1982 and left five days later. When they found out about my herbal program, they almost had collective apoplexy. They were afraid other residents might get into my pills. The medical director and the director of nursing met with me to discuss this creature who had put me on such an outlandish program.

Who is this woman? the director of nursing asked. Does she have a degree?

To this day I’m sorry I didn’t reply, You have a degree, don’t you? What can you do to help me?

I went back home and started over. This time I told the nursing homes about my pills in advance. No one was willing to take me except Amherst Nursing Home where my personal physician, Dr. John Wayland, was the medical director. Douglas Castallana, the administrator, said he would take me if I kept my pills locked up. So on August 4, 1982, with outward bravado and inward tremors, I moved into my new home. The social worker, whose job it was to greet me, was on vacation, so Mr. Castallana (hereafter known as Doug or Mr. C.) ushered me in. He was forty-seven years old, over six feet tall, dark-and-Italian good looking, and slightly bald on top in the way many women consider sexy. He had a charming Boston accent. I was to learn that when he donned a fedora and put a cigar in his mouth, he looked like a 1930s gangster. He welcomed me with a casual warmth that eliminated some of my apprehension.

Amherst Nursing Home (now known as Elderwood Health Care at Wedgewood) is a small facility—eighty-three beds. Therein lies its charm. We’re more like a family than the larger facilities. It has two wings. The south wing runs off the lobby in an arc to the right and the north wing runs off the lobby in an arc to the left. The physical therapy room is straight back from the lobby. The kitchen is off a short hallway to the left of the lobby. The dining room is also to the left of the lobby behind the kitchen, and the activities room is behind the dining room. There are three offices off the lobby, which also contains the reception area. Other offices are on the wings and in the basement, and that’s it.

I was assigned to room number six, a two-bed room on the south wing. I soon became accustomed to my new home mainly because of people like Lucinda who lived across the hall from me. She taught my roommate and me a bunch of dirty words and expressions in Italian. It was fun and shocking to some of the more dignified Italians.

She had an endearing way of expressing herself. Instead of telling her daughter she was getting too fat, she said to her, Did you eat breakfast this morning? If I was you, I wouldn’t have. She died twelve years ago, and I still miss her.

The dietary staff was wonderful about cooperating with me on my dietary needs for Adele’s regimen. I bought some of my own food, and they kept it in a special basket in the walk-in refrigerator. After a few years I started cheating—sometimes by eating beef, sometimes cheese, sometimes candy or other sweets and coffee. But by then, the benefits of the regimen seemed to have taken hold, and the deteriorating process had stopped.

After I was here a few months someone asked, Do you play pinochle? A seat is available.

Well, I do. I love cards, and now I was in a position to indulge this favorite recreation. Wow! I thought. This would be like an ongoing vacation.

My elation was short-lived.

A nursing home pinochle game is not like an afternoon with the boys in the corner saloon. It goes something like this:

Dwight is at my left. He’s tall and thin with angular features, probably in his late seventies and seems to be in good health. He’s been volunteering here for several years. Emma’s my partner. She’s a sweet, plump, little Italian grandmother. Her gray hair is pulled back in a bun, and her brown doe eyes reflect her gentleness. Everyone loves her. Mattie’s at my right. Mattie has soft features and gray eyes beneath a head full of short, neatly coiffed, black hair, courtesy Ms. Clairol. She wears thick glasses. She has beautiful clothes and costume jewelry, and she always wears makeup.

Mattie faces life bravely despite her tragic background. Her only child, a handsome son, and her husband both died unexpectedly. A hit-and-run driver killed her son right after he had been accepted into pre-med school. Her husband died on the operating table while having minor surgery for a hernia.

I suspect that both Mattie and Emma were once sharp card players, but they are both in their eighties, and, though they are far from the dementia class, time has taken its share of brain cells. Mattie deals. I’m suspicious. I count my cards. I have eleven.

I say, I’m one short.

Everybody counts their cards. Dwight and Emma have eleven, Mattie has fifteen. We each draw one from Mattie.

Emma says, What’s trump?

I say, We don’t know yet. I bid twenty-one.

Dwight says, What’s trump?

I say, Do you pass?

He says yes, his voice showing annoyance that I’m asking a stupid question.

Emma says, Pass, in answer to my question.

Mattie says, What’s trump?

I assume that means she passes, so I lay down my run in spades and a marriage in diamonds.

Emma says, What’s trump?

I tell her, Spades.

She can’t find any meld. That doesn’t mean she doesn’t have any.

We have seventeen, I say.

They have eight. Dwight marks it down. I lead the ace of spades.

What’s trump? Mattie asks.

That is, I say.

Everybody follows suit. I lead the ace of diamonds, then the queen. Mattie throws a club.

Don’t you have any more diamonds? I ask.

If I did, I’d play one, she snaps.

Don’t you have any trump? I venture meekly.

What’s trump? she says.

Spades, I answer.

Oh, sure, she says and exchanges the club for a spade.

I tell her, Take the trick. It’s yours.

She leads the ace of clubs. Everybody follows suit. Next comes the queen of clubs. Emma trumps it.

Don’t you have any clubs? I say.

No, she assures me.

She leads her two aces of hearts, then the jack of clubs.

I have low blood pressure. This event brings it up close to normal—fringe benefit.

You reneged three tricks ago. My voice was eight decibels higher than is socially acceptable. You trumped a club when you had a club.

What’s trump? she asks.

I try to keep my voice low, controlled so as not to further upset the equilibrium of my psyche. Spades, I answer in my new voice.

Having found the trick in question, I spread the cards to show her. I make her exchange the jack of clubs for her trump and give the trick to our opponents. I give the lead to Mattie since it should have been her lead three tricks ago. She leads the ace of trump. Dwight throws an off card. I take the next trick and lead my ten of spades.

Everybody throws an off card.

There’s a trump out yet, I say.

What’s trump? Mattie asks.

Spades, I say. Somebody’s got a spade yet.

They search their hands. Three heads shake no.

C’mon, somebody’s got a trump, I insist, accusingly.

Three heads are still going no. Mattie looks in Emma’s hand. There it is, she says. Emma takes back her discard and exchanges it for the trump. The hand continues. I lead my last card.

Is that trump? asks Mattie.

This is just a one-morning-a-week-affair, so I figure I can handle that much. Dwight comes in only once a week.

The following week we start the game with Mattie dealing. Mattie always holds up the deck of cards facing her partner as she deals so all of us can see the cards as she peels them off the deck. I keep my eyes averted because I don’t need an unfair advantage, and the others don’t even notice. In the middle of the first hand, Mattie plays her ten of diamonds on Dwight’s jack and my queen. Emma plays the ace. Mattie takes her ten back and plays the jack.

I say, You can’t do that.

Mattie is the haughtiest wheelchair inhabitant I’ve met so far, and she manages to ignore a person with a contempt that squelches all argument. Two tricks later she reneges.

When I point it out she snaps, I did not.

I find the trick and show her. Without a word she exchanges it for the proper card, and we continue the game.

It’s getting near lunchtime, and we have time, maybe, for one more hand. It starts out okay. Halfway through the hand Mattie lays down a queen of spades and jack of diamonds for meld. Dwight adds four to their score. I let it pass. I’m not about to get into a discourse on the illegality of late meld with a woman who can slay me with one look. We play a few more tricks, and then Emma leads the ace of trump (hearts). This would ordinarily be okay, but this is the third time the ace of hearts has been played.

I abandon my new voice. I’m approaching screaming. Where did you get that?

Why, in my hand, she says, puzzled that I should be upset.

I glance at everybody’s hands. We all have four cards; Emma has eight. Without my noticing it, she has taken a trick and put it in her hand instead of on the table in front of her.

I think lunch is ready, I yell, and throw my cards in.

Three days later another pinochle player entered the home, and I relinquished my seat to her. I’m not ready for the major leagues yet.

In December 1995, I began writing a journal about my life here and what I have learned about the human condition. By sharing my experiences with readers outside the nursing home, I hoped to communicate the joy and laughter, along with the sadness, that occur on a regular basis in a setting that many people view as depressing and without any redeeming characteristics. I had no idea then what lay ahead, or how the connections I had made at Elderwood would give me life when all I could see was death.

1

You Were Crazy before You Got Here

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December 3, 1995

Herb and Sophia came over to play pinochle today. Herb’s wife used to