TAYLOR JONES SAYS: In The Lost Kitchen, Reflections and Recipes from an Alzheimer’s Caregiver by Miriam Green, the author gives us both an in-depth and poignant look at what it is like to deal with Alzheimer in your family. Included in the book are both poems about Alzheimer’s and recipes that the author’s Jewish family has chosen to share with the readers, making the book a wealth of information. From humorous events to sad and touching tales of life with an Alzheimer’s patient, the author takes us on a truly moving journey, detailing the pain and frustration of living with Alzheimer’s.

Filled with wonderful recipes, moving poems, and a wealth of information on dealing with people with Alzheimer’s, the book is a real treasure.

REGAN MURPHY SAYS: The Lost Kitchen, Reflections and Recipes from an Alzheimer’s Caregiver by Miriam Green is a collection of poems, recipes, and stories from the daughter of an Alzheimer’s patient. Green’s mother suffers from Alzheimer’s and the whole family is affected. While giving examples of how her mother’s illness has challenged the family, the author also gives tips on dealing with Alzheimer’s patients, as well as recipes that have been important to her family. I particularly liked the way she described what she had done wrong with her mother as well as what was done right.

I found the book both moving and thought-provoking, a glimpse into this terrible disease that we know so little about. Whether or not you ever try any of the delicious-sounding recipes, it is still a book that everyone should read.

FOREWORD

I’m not a foodie. I don’t have a zealous interest in food, I don’t gawk at expensive and obscure ingredients in grocery stores, and I don’t own a fancy food processor or a meat thermometer or even a scale. What I do have is a desire to cook practically and simply. Cooking meals for my family is one way to express my love for them. When I make something they love to eat, they taste my love in the food, and, I’m pleased to say, they thank me for it. I remember how proud I felt when my young kids, aged nine, six, and four, unanimously voted quiche as their favorite dish. Not even pizza from the pizza parlor could unsettle that choice.

After twenty-five years of marriage, the recipe for quiche is one I know by heart. However, the first time I attempt a new dish, I invariably follow a recipe. Only after I’ve made it several times do I add signature changes to personalize it. I learned that from my mom, Naomi Cohen. Mom was a formidable housewife and an excellent cook. She inducted me into a practical cooking life. I watched as she bought and salted meat in our sink before turning it into delicious roast; as she cut and chopped vegetables for soup; or even as she made me sandwiches for school. Tasked with making my own sandwiches when I turned twelve, I toasted slices of round dark bread and layered them with cheese, avocado, tomato, sprouts, and a generous helping of mayonnaise. To me, each sandwich was an act of creation.

When my mom developed Alzheimer’s, her mounting mistakes in the kitchen encouraged my dad, Jack, to try his own hand at creating meals. As he moved from making omelets to fancier dishes, he finally began to understand how much Mom had given him throughout their many years of marriage. And as he sought my assistance in his newfound position of “chief cook and bottle washer,” I realized I had a new cooking partner and another reason to see cooking as an essential element in my life.

This book is a combination of recipes, poetry, and prose about my family and how we have shared and confronted the demands of Mom’s Alzheimer’s. Mom’s functioning deteriorated during the writing of this book, such that many things described in the present tense are now beyond her capabilities.

Throughout this most personal of stories, Mom has been my greatest teacher. She has taught me how to love and laugh in a world that is often confusing and painful.

Mom has unknowingly encouraged me to give of myself and to express as best I can the advice I’ve learned about Alzheimer’s. I hope that it can help others in our position who are caring for loved ones no longer in their prime but still loved, still wanted, and still needed.

***

Why call this book The Lost Kitchen? One of the gifts of caring for someone with Alzheimer’s is learning how to laugh through your tears. The kitchen is lost to Mom, but we can reclaim it by remembering with humor the life she once lived. Here’s a version of a popular joke about Alzheimer’s.

Joan and Stan are watching TV on the couch in the living room. Joan gets up.

“I’m going to the kitchen to get some ice cream. Do you want some?” she asks.

“Sure,” says Stan. “I’d also like some strawberries on top. And sprinkles.”

“Okay,” says Joan. She starts to walk away.

“Are you going to remember that?” asks Stan. “Do you want to write it down?”

“I can remember that,” says Joan, “I’ve still got half a brain.”

Joan leaves and is gone for about twenty minutes. When she returns, her hands are empty.

“Where’s my tea?” asks Stan.

“Where’s the kitchen?” asks Joan.

Miriam Green

Israel, 2018

Recipe for a Small Star

for Ima

Ingredients:

2 cups sifted memories

1/2 tsp unfiltered light

1 Tbsp clarified passion

3 sun-dried hearts

Pinch of time

Directions:

Say her name. Say

her name. Shout it. Loud,

louder. Louder.

String the memories together

like beads of light

that explode in a brilliant flash

in the night sky.

INTRODUCTION

Those early months were difficult. I didn’t want to believe the diagnosis. If I was being honest with myself, though, I knew with certainty that Mom had Alzheimer’s.

I was not prepared for the disarray that Alzheimer’s brought into our lives. I didn’t realize the extent to which every emotion I displayed would be amplified in Mom’s behavior. I couldn’t grasp fully that Mom had entered an alternate reality where her unchecked and discordant emotions often burst out indiscriminately. I had to keep reminding myself that Mom was blameless, that it was the disease affecting her, that her tantrums and fear and gaping holes in her memory were out of her control.

The first thing I learned was that each person afflicted with Alzheimer’s reacts differently to the disease. After she was diagnosed, Mom refused to entertain any notion of being ill. If my dad or I brought up the subject of Alzheimer’s, she would say, “That has nothing to do with me!” and furiously walk away. I had heard that some Alzheimer’s patients were not only aware of their situation but actively fought against it. This was not the case with Mom. After the third or fourth try, we decided that we would not discuss it with her.

There have been hard times: On more than one occasion, I have locked Mom in her own house when she frantically wanted to get out; I removed toothpaste from her hair when she used her toothbrush as a hairbrush; I helped her remove the two skirts and five pairs of underwear she’d donned; I caused her to panic when I missed her return to our restaurant table because I was foolishly playing with my phone. And amazing dividends: her radiant smile, her memory for music, and her snorting laughter at silly jokes.

It took a slow while, but eventually I found ways that helped us minimize the confusion. It had to start with my own behavior. It meant acknowledging Mom’s reality, listening patiently to her often incoherent statements, bringing her into conversations instead of talking over her head, assuaging her anger, tamping down my own anger, finding ways to make her laugh, being in the moment, and loving her unconditionally. The effect was like shining a bright light in a dark place and finding that the room was filled with hidden blessings.

Mom did acknowledge her growing memory loss. More than once I held her as she cried in my arms at the utter confusion she felt, at her brain’s inability to process the social and verbal cues all around her.

Sharing my pain and bewilderment with other people in the same situation helped. A friend, Judy, whose mother also had Alzheimer’s, took me out for coffee and openly answered every question I put to her. I was affected most profoundly by Judy relating that her mom did not know who she was anymore. I could not then imagine how a child’s whole life could be swallowed up by this disease.

Online sites with technical and scientific information were often overwhelming in their intensity, and I shied away from them. Books were better, as were websites with personal accounts. I could read at my own pace, absorbing facts and suggestions that pertained to our situation, finding solace in other caregiver’s voices.

Ultimately, my own experiences taught me how to move forward while maintaining as normal a life as possible. We wanted to keep Mom involved and engaged in family celebrations, holidays, trips, and daily activities. She needed the stimulation and we needed that connection to her in all her roles–wife, mother, grandmother, sister, daughter.

I discovered how to use Mom’s memory loss to my advantage, and how to calm her when she raged against us. I learned how damaging certain illnesses were for an Alzheimer’s patient, and how important noninvasive blood and urine tests could be–if Mom could be convinced to comply. I found reserves of kindness and patience in myself that I didn’t know I had and creativity that I used to keep her happy. I accepted the beauty of living in the moment and learned to give of myself whole-heartedly even as Mom forgot who I was. I became, in essence, my mother’s mother.

***

The last few years have been filled with such surprising situations, many of which have tested me to my limits. Through it all, as a way to cope, I have stationed myself in my kitchen and focused on cooking. I have become a more adventurous cook, incorporating family recipes that I learned from Mom into our daily cuisine and borrowing from the culture around me. A silver lining perhaps?

It has been eight years since Mom was diagnosed with Alzheimer’s. At the writing of this book, though she had declined in her abilities, Mom continued to function with a guarded independence, walking unassisted, dressing and showering herself (with increased and watchful support), and she was able to tell us how she felt. Today, sadly, Mom resides in a closed Alzheimer’s care facility. Her daily life is drastically diminished and routine, and she struggles to rise from her chair. She remains outgoing and friendly most days, and still enjoys our visits. Music is a welcome break from an otherwise vacuous existence. Her most prized possession is a pair of headphones which play her favorite songs from times gone by.

People with Alzheimer’s can survive with the disease for as many as twenty years, but the average is eight to ten years. That may not leave us much time to savor our relationship. I know that what awaits us–the inevitable physical and mental decline that is Alzheimer’s–will continue to generate a range of emotions and reactions, hurdles that I must overcome, to learn again and again to give of myself knowing I may not receive anything from Mom in return.

I am ready for that challenge. I invite you along to face it with me.

In the Beginning

they ask when she was diagnosed

as if that was the beginning

as if one day one noticeable event one small

symptom drew our attention

and we could pinpoint the first moment

of her memory loss

beginning middle end

a logical concept–

we only know middle

time sliding through time

no evident trigger

no first domino

signs piling up

until they erupt into diagnosis

we try to create

beginning out of chaos

but chaos

already was

Chapter 1

In the Beginning

After my mom, Naomi, was diagnosed with Alzheimer’s in 2010 at the age of sixty-nine, my dad, Jack, only a few years older, started cooking for the first time in his life. Through the painful realization that we were losing our beloved mother and wife, we found humor in the situation–Daddy had actually entered the kitchen!

“I should write a cookbook,” he joked the first time he’d made dinner for the two of them.

“That’s a good idea,” I replied. “We can document your cooking attempts. Did you burn anything?”

“No,” he answered indignantly. Then, with a smile, “just the water.”

***

If there was a way to capture the essence of my mom, it was through her cooking. Though in later years she’d become, in her own words, “lazy” about cooking, my childhood was filled with bountiful family dinners, Friday night meals featuring golden chicken soup, and mouthwatering holiday feasts. The kitchen was Mom’s domain. I remember photos of my parents taken in the early years of their marriage that amusingly defined their two distinct worlds: Jack, the scientist, in his lab; Naomi, pregnant in the kitchen.

They’d both grown up in the rough East End of London. My dad had been as skinny as a rake as a young man, with haunting, intelligent eyes and the temperament of an artist unwilling to compromise his beliefs. Mom’s cooking soon fattened him up, and by the time I came along, Daddy had started to lose his undernourished appearance.

Mom was a beauty from day one. Photos show her as a smiling toddler–a round, pleasing face, two large dimples, and eyes that crinkled when she laughed. Sitting for her engagement photo, Mom looked like a shapely model: legs casually crossed, head tilted at an angle, her dark hair framing her face. She projected an overwhelming optimism as to what the future held.

***

Fast forward fifty years. It took almost two years before the doctors were willing to finally diagnose what was entirely evident to our eyes. Mom was suffering from increasing short-term memory loss and an inability to keep up with conversations. She misplaced objects like keys and lists, credit cards and bills in the most unlikely of places, and shopped for the same items over and over again. At times, her memory was as sharp as or sharper than ours. Yet at other moments she would ask the same question within the same minute, or forget what she had ordered from a waiter before it arrived.

Outwardly, Mom somehow remained herself. Her essence–the bubbly, talkative, good-natured woman–was still there. She could dress herself, make jokes, and sing along to her favorite music. But she could no longer cook well-balanced or tasty meals. A huge part of her identity–the nurturing mother and wife who gave love through her cooking, the strong mother from my childhood–was now in jeopardy. Soon after she was diagnosed, Mom entered a more defined stage of Alzheimer’s, what the Alzheimer’s Association calls Moderate Severe Cognitive Decline. We knew that as an otherwise healthy seventy-year-old, Mom had many years of good health–and utter confusion–ahead of her.

Alzheimer’s is one of the most common forms of dementia. A neurological brain dysfunction first described in 1906, it is characterized by an abnormal production of Amyloid beta in the brain’s neurons. Amyloid beta begins to accumulate and binds to itself forming sticky aggregates called plaques that impair the normal functioning of our neurotransmitters. At the same time, a neural transporting protein called Toa undergoes anomalous chemical changes forming threads that clump together to create tangles. Both these processes halt the neurons’ abilities to send and receive messages within the brain. What follows is an inability to access memories, and a gradual decline in cognitive and intellectual performance. It also produces physical symptoms including loss of balance, difficulty walking, loss of smell, and vision impairment. Alzheimer’s is progressive and irreversible and eventually leads to death. There is currently no cure.

Alzheimer’s intensifies the forgetfulness that occurs during the aging process. As we age, we sometimes forget words and names. Or we walk into a room and forget what we’re looking for. Such “senior moments” may last a few moments before we retrieve the word or task that’s eluded us. This is a normal part of aging. Alzheimer’s sufferers are not so lucky. Alzheimer’s patients may have trouble completing simple tasks, or misplace items in strange locations and be unable to find them later. They may stop communicating on a basic level. They’ll sit quietly while a conversation is held around them. Familiar places become mazes, even within their own homes.

The kitchen is an especially forbidding room with its strange contraptions, appliances with indistinguishable buttons, or tomatoes that look like apples. The realization that they cannot manage a simple task can send an Alzheimer’s patient into trembling bouts of fear and anger. Their emotions become amplified, and they may become confused, anxious, or suspicious, often toward those who are closest to them.

In Mom’s case, the first thing to go was driving. By mutual consent, Daddy and Mom decided that the aggravation and anxiety Mom was feeling toward the car was not worth it. She called Daddy in tears from the parking lot under their building, unable to locate or unlock the alarm panel that was right next to her. Thankfully, my parents live in a city that is easy to navigate by foot. Grocery stores, clothing outlets, and a lively mall are all a short walk away. In the other direction, there’s an outdoor pedestrian mall with restaurants, two community stages, and the sea twinkling invitingly beyond.

Next to go was the ability to consistently recognize ingredients needed in any given recipe. Mom took out two pieces of sole to defrost, then insisted it was chicken and refused to believe otherwise. She forgot how to cut vegetables for a salad. She burnt the toast almost every morning. She put pre-cooked chicken cutlets in the microwave then set the timer for ten minutes, making them completely inedible.

It was at this point that Daddy finally noticed the state of their kitchen. Early Alzheimer’s patients often have a sense that they are forgetting to accomplish some task or other. For Mom, walking to the store to buy a couple of items she thought she needed became this task, one she felt she could accomplish with relative ease. But by the time she had reached the store, Mom would either have lost her list or couldn’t remember what she had wanted to buy. She would buy, instead, those items that tickled her memory. Tuna cans, packages of chocolate cookies, bananas, canned olives, tomato sauce, toilet paper, and toothpaste were all stacked aplenty on her shelves. Once, she came home with an extra bag of fresh tomatoes thinking they were red peppers. Another time she bought a loaf of fresh bread, though the one she’d bought only the day before was still wrapped and sitting on the counter untouched.

When she forgot how to walk the few blocks home, she stopped going to the store by herself.

British by birth, my parents drink numerous cups of tea daily; yet Mom forgot how to make it. If she remembered how to boil the water, chances were she’d screw up making the tea. More than once she stuck a cookie into the cup as a substitute for a tea bag. Instead of taking tasks away from her, like making tea, Daddy and I tried to find solutions to her poor memory that would keep her feeling useful. For example, Mom was encouraged to wash the dishes, even though I often had to wash them again when she was done. When we made soup together, I would show Mom how to cut vegetables so that she could be part of the cooking process. Daddy hung whiteboards on each of the cupboards so that he could list their contents to help Mom find things she needed. He began to oversee the various tasks she was once able to accomplish herself. They prepared her medicines together, and Daddy helped her take them each morning and evening. They wrote the grocery list and kept it in a set place, adding to it as the days passed.

Meanwhile, my inbox was filling up with messages from Daddy about his growing cooking prowess. Daddy was learning to create delicious meals in under ten minutes. He was moving beyond omelets to other challenges. He made pasta with simple variations. He even tried chicken breasts with mushroom and white wine sauce!

I was also receiving emails from him about my mom’s misadventures. “Today Naomi decided to make eggs in the microwave. Do you know what happens to an egg cooked in a microwave for more than two minutes? It literally explodes, and the resulting ‘egg’ resembles a hard plastic thing, more like a hockey puck than an actual egg. I’ve decided to call her ‘the Egg Slayer.’”

Or: “Tonight I suggested we eat the leftover soup from last night. Before I had a chance to heat it up, Naomi added to it by dumping two jars of pasta sauce into the pot.

“It ceased being soup and became a thick sludge of tomato paste. She ate her share, but I opted to open a jar of gefilte fish instead.”

For their fiftieth wedding anniversary in the summer of 2011, my parents took us all on a Mediterranean cruise. As getting lost on the ship would be frightfully easy for Mom, we promised to stick with her wherever she went. One evening, relaxing in the large lobby with the grandkids dancing round, she leaned over to Daddy and asked, “How many children did I give birth to?”

Such comments and actions caught us off guard. They pained and humored us, and gave us an inkling of what was to come. How will we manage, I wondered, how will we take care of Mom? As the child living in closest proximity to my parents, I felt the burden of caring for both of them acutely, for if Mom was not functioning, Daddy and I would have to pick up the slack.

The wealth of information online from the various Alzheimer’s organizations only served to scare me. Was it safe to leave Mom alone? At what point would we have to make decisions without Mom’s input? What would happen when she could no longer dress herself or use the bathroom? What if she became verbally or physically violent? What if she got lost? How much time did we have left? Were we strong enough to find the blessings in caring for an Alzheimer’s patient?

Beyond the physical, Mom’s emotional state was uppermost in our minds. What we knew in our hearts, what we’d realized all along, was that Mom’s condition was only going to deteriorate. We braced ourselves for the stages to come and watched as she vacillated between anger and fear.

***

“You’re right, we should write a cookbook,” I said to Daddy in one of our many conversations. I was looking for a way to overcome the growing despondency I felt toward my mom’s condition. It seemed a logical extension of the hours I’d devoted to helping him learn to cook. I envisioned a humorous account of my dad’s growth in the kitchen and how his experience was probably being played out in thousands of kitchens across the globe–men who had matured in an age when male and female roles were so well defined, the best they could do was make scrambled eggs or put together a slap-dash sandwich. And now, here he was, stepping into his wife’s shoes because she could no longer cook for him. The idea of creating a cookbook together based on Daddy’s culinary experiences began to take shape. We opted to title it, The Man’s Emergency Cookbook.

We did start a project together, but at some point, I realized that what I needed to say had become much broader than the confining theme we had set for ourselves. With a small shudder at separating our work, I decided to continue the project on my own.

With Daddy’s blessing, I worked to transcend the emotional burden of my mom’s Alzheimer’s through my creativity. My father’s fanciful comment had become a medium for me.

***

It would be impossible to describe my early years without mentioning the kitchen in which I grew up. Everything happened in our kitchen. With its orange-flowered walls, yellow curtains, and gleaming brown fridge, the kitchen was a warm place to gather. We each had our assigned seats around the butcher block table that was nestled in the breakfast nook: Mom and Daddy along one edge, my brother Simon and I each at one of the ends. I would sit for hours in those heavy oak chairs, back against the wall, feet resting on the stretcher bar under the seat, reading all manner of books. The radio was always on tuned to rock or classical depending on who got to it first. Here was the source of my informal education about music and the world. I remember listening to Rossini’s “William Tell Overture” with its grand, romping finale; and, when I finally understood them, being scandalized by lyrics to popular songs such as Dylan’s “Lay, Lady, Lay.” On Sunday mornings, we’d hear “Awake, Alive, and Jewish,” a staple of the local community broadcasts.

And Mom was there, a fixture by the counter: cutting, chopping, stirring. The kitchen was a good place to be.

If we begin at the very beginning, I would plumb one of my earliest memories to describe the dish Mom made whenever we children were sick. She’d mash a banana in a small bowl, add one-fourth cup of milk and two teaspoons of sugar. The riper the banana, the better the taste. Something about the lumpy consistency or the mushy, sweetened milk always made me feel better.

I remember being put to bed in the middle of the day at age five or six, with several heavy blankets to reduce my fever by sweating it out. When I woke hours later, the fever gone, Mom fed me mashed bananas.

Mom didn’t work outside of the house until my brother Simon and I were in our last years of grade school. Though I didn’t understand or even realize it at the time, she battled a sense of inadequacy because she didn’t have a university degree. She was married to a PhD in chemistry from Cambridge University, but she herself had been forced to give up a college career. You could blame it on her family’s lack of money, or on the fact that when she was young, most women did not pursue degrees. Or you could lay the blame squarely at the feet of my grandmother, who, with her extreme old-world views on modesty and dating, ripped up Mom’s letter of admission to study languages at Birmingham University, without telling her she’d been accepted, and sent her to typing school instead.

My grandmother’s cooking fame was largely epitomized by the statement: “I treat my husband like a god–I give him burnt offerings.” Fortunately, Mom ultimately learned many things on her own, including how to cook.

The most fundamental essence of Mom, however, was captured in her chicken soup. This soup was always Mom’s expression of love for our family. She cooked this dish with only fresh herbs and vegetables cut into big chunks. We delighted in the clear, golden broth, the tender strands of chicken, soft celery and aromatic dill. It was the highlight of every Friday night meal when I was growing up. Later, when my husband Jeff and I visited with our kids, the kids always requested seconds, and sometimes even thirds of her fragrant liquid. For this dish, the secret to success is the fresh dill.

© 2019 by Miriam Green

Linda Stern Zisquit:

“In page after page of The Lost Kitchen, we learn from Miriam Green’s example how to be a loving and responsible daughter. The wisdom of her words and the compassion, understanding and even humor in her responses to her mother’s illness teach us what it means to navigate the struggle and remain buoyed up by one’s own resources.” ~ Linda Stern Zisquit, Ritual Bath

Bernard Kops:

“This book is wonderful. It has a unique style that I have never met before. And a strange technique where making food and poetry, and the mother’s desperation are all in the soup together. So we get the joys of desire and the crying of family love woven together in a happy mix. It comes alive and speaks to you directly. You awake and sing and cry all at once.” ~ Bernard Kops, The Hamlet of Stepney Green

Tamar Genger:

“A moving and inspirational story of memories — past and present, lost and found — set in and around the kitchen table. This book is certain to bring comfort to anyone struggling with aging parents or coping with loss, strengthening your courage and reaffirming your faith even during life’s most difficult moments.” ~ Tamar Genger MA, RD, Kosher Network International