The Gap Between: Loving and Supporting Someone with Alzheimer's

By Mary Moreland

One woman shares her emotional experience navigating her parents’ declining health, culminating in her mother’s years-long struggle with Alzheimer’s.

Mary Moreland details her journey through the stages of grief as she comes to terms with her father’s death, followed by her mother’s Alzheimer’s diagnosis. As her mother’s disease progresses over eight years, Mary walks readers through the earliest phase and all the way to her mother’s deathbed. She provides insightful advice on grieving and caring for loved ones with dementia or Alzheimer’s, alongside her own story of loss.

• Language: English
• Publisher: Open Road Integrated Media
• Release date: Jun 21, 2022
• ISBN: 9781612545646

Book preview

Introduction

On June 2, 2012, I thought I knew what to expect from my mother’s Alzheimer’s diagnosis. I was a single mother of two young boys ages six and eight. An ambitious lawyer with goals and passion. A primary breadwinner. An optimist. A blonde-haired size four, comfortable in a bathing suit. I could handle anything thrown my way. Just watch me.

June 2, 2012: the day my father passed away unexpectedly. In some ways it was so long ago. I feel like a different person. I am more established and a bit wrinkly. I am now a mother of teenage sons, not young children. I am more private with fewer friends. Heavier with a menopausal belly. Fortunately, 2020 is a perfect cover—the COVID pandemic prevents one from being social (at least in person), and a Zoom top with yoga pants and sports shoes (or no shoes) meets all dress requirements.

In other ways, it could have happened only a minute ago. I can tap into those feelings and return to the scene. My mother’s confused face after I asked her to call 911. The kind 911 operator who walked me through CPR while I yelled expletives into the phone and cried uncontrollably. I broke his rib. I know I did. I heard the crack and felt my hands push just a bit deeper into a new hollow in his chest. I can see the firemen storming into the bedroom with the energy of superheroes, only to quickly tell me it was too late. Of course, it was too late. He was dead before I arrived. I realize that now. Sometimes we see what we wish were true as if our will could create a parallel universe.

The day my father passed, my mother and I were going to the store to buy her a new cell phone. I called her before I left to pick her up. My parents referred to me as Mare. Oh, Mare, just pick something out. You know what I like, my mother said. Completely understandable. I did know exactly what she liked. Personally, I dread buying a cell phone. So many choices. So many plans. I have no idea how much data I use. Just walking into the store raises my blood pressure and decreases my IQ score. Besides, your father looks a bit ill. I think I should stay here in case he needs something.

OK, I will pick out a phone and be right over. Was he already dead?

When I arrived, my mother said that Dad was taking a nap. We sat at the breakfast room table setting up her new phone. After I completed adding family members to her contacts, she asked if I would check on my father. He didn’t look well, she stated with a concerned tone. I think there is something wrong with his cheek, she said while holding her hand next to her cheek.

I knew things were not right when I walked into the bedroom. I had never seen a dead body outside of a funeral home. My mind told me something was wrong, but I thought he was perhaps just very ill. After all, Dad had survived so many things. A quadruple bypass, back surgeries, high blood pressure, knee replacement, skin cancer, high cholesterol, and sleep apnea to name a few. A miracle of modern medicine. My mother asked me what I thought. What should we do?

I remember asking her slowly and in a calm voice to pick up the phone and call 911. When the operator joined, I heard her panicked voice tell the operator that she thought something was wrong with her husband, but she could not put the words together to explain or answer the questions. Trying not to sound upset, I asked her for the phone. She looked so confused and anguished. She looked helpless and sad. She looked scared and vulnerable. My heart broke, but I needed to attend to more immediate matters. I had to block her out of my mind and talk to the operator.

As I described the scene, my brain realized the full effect of the moment. The operator asked me if I knew CPR. I said no. She asked me if I had taken a CPR class. I told her that I had taken a CPR class at work, but that I had never used it. I recall that she told me not to worry and just to listen and do as she said. This is when the tears started streaming through the wrinkles around my eyes, like creeks from melting snow down my cheeks. Dad, no, shit, fuck, no, no, no, come on, Dad! She calmly walked me through CPR, although it sounded like she also was crying. Like muscle memory it came back. I was surprised that the feeling of pressing down on the chest of the mannequin during my CPR class at work and the feeling of pressing down on the chest of my father were, in my mind, the same. I recall feeling a sense of calm and accomplishment when I felt the chest reduce when I applied my weight and return once I reduced my pressure. I put my full weight into it—if we are going to perform CPR, let’s put everything into it.

The doctor was called. The police arrived. The police attempted to interview my mother until I realized what was happening and intervened.

Yes, she used to put his daily heart medication in his pill container. No, they had a happy marriage. More than fifty years. No, she would not have intentionally made a mistake—she seems a bit confused. Please, talk to me. Please, do not ask her any more questions. She is upset, confused, vulnerable. Let me tell you about her Alzheimer’s. She was diagnosed several months ago. Please just let her be. She is very confused, I agree. You are right.

Close relatives I had called to inform about my father’s passing ate sandwiches in the breakfast room from groceries my mother had purchased. Horrible phone calls etched in my brain—sons learning of their father’s passing. I did not know that almost a decade later I would make the same phone calls about my mother.

My father lay dead in his bed waiting for the hearse to take him away. The police stayed until the hearse arrived. Although they were not supposed to allow me to sit with him, I felt an overwhelming need to be next to him. They kindly obliged. I sat next to his body and wondered if it were just a shell. I prayed. I wished for a sign. Where is his soul, his essence? Is it just over? Is this how it ends? Does something happen afterward? I thought perhaps I would receive a sign, something showing me what happens after our bodies wear out. I finally summoned the fortitude to touch his shoulder. It was cold and stiff. No one was home.

A representative of the funeral home eventually arrived that evening in a dark suit and entered the house carrying a single long-stemmed red rose that he presented to my mother with his condolences. She broke out in fits of giggles and laughter. He shot a confused look at my teary face.

If only I had realized . . . these were the good times.

I have since learned more about death, and I know that my father had what people call a good death. He enjoyed a lunch with his friends at a favorite restaurant. He came home and talked to his wife of fifty years. Later I learned from my mother that he had kissed her on the cheek and told her to place his wallet and watch in her purse. He went upstairs to take an afternoon nap and changed into the navy blue, silky pajamas that he loved. He died in his sleep.

The Progress of Grief

By Jane P. Moreland

Grief is at first private, fallen acorns

held tightly within lacquered shells,

stone-hard pears and pomegranates

that cannot release sweet tears.

It becomes the somber pigeon

released every dawn and home by dusk

to find you in umber shade of live oak,

follow your escape through scars

into the private hollow that could split

like your heart, spill tears like rain

to run widening through shallows

and remembered crevices, abrade

your inner landscape, wash you

in cold currents over deep floors and out

into sunlight, where you find yourself

crossing fields on a murky fast canal

that is the bold stroke across canvas

that severs then from now, life as absolute

before the blurry gold becoming.

Alzheimer’s disease undoubtedly carries a social stigma. So often when family or friends learn of an Alzheimer’s diagnosis, they presume their loved one is suddenly incapable of making decisions, enjoying life, or contributing to society. There is a feeling that all is lost. I reluctantly admit that, upon learning of my mother’s diagnosis, I felt several of these emotions. The worst-case scenario had occurred—Alzheimer’s disease.

I accompanied my mother on her Alzheimer’s journey for over a decade. Reflecting upon that experience, I now appreciate that, just like how coronary artery disease is a type of heart disease, Alzheimer’s disease is simply a type of brain disease. It is a progressive disease, meaning that symptoms gradually worsen over several years, and individuals eventually lose the ability to understand and react to their environment.¹ We do not marginalize, isolate, or exclude people living with coronary heart disease; we should not do so to people living with Alzheimer’s disease. Learning about the disease and correcting misinformation will break the Alzheimer’s stigma.

Alzheimer’s is an irreversible brain disease that is ultimately fatal. An individual with Alzheimer’s does not detect or notice initial changes to the brain. These initial changes begin twenty years or more before symptoms begin. Examples of Alzheimer’s symptoms are memory loss and difficulty doing routine tasks. Symptoms are caused by damage to nerve cells in parts of the brain involved with cognitive function—i.e., memory, learning, and thinking. As the disease continues to develop, nerve cells in other parts of the brain are also affected. At the late stage of the disease, the nerve cells in the brain are so damaged that the person living with Alzheimer’s is unable to walk, swallow, and carry out other basic bodily functions. Individuals with late-stage Alzheimer’s eventually require twenty-four-hour care and are bedridden.²

Dementia can come in many forms; Alzheimer’s is the most common type.³ Alzheimer’s is the sixth-leading cause of death in the United States⁴ and kills more people than breast cancer and prostate cancer combined.⁵ Alzheimer’s dementia is much more prevalent than one may think. In fact, over 11 percent of people 65 and older live with this disease. Unless there are developments or medical breakthroughs to prevent, slow, or cure Alzheimer’s disease, the number of people age 65 and older with Alzheimer’s in the United States may grow to nearly 13 million.⁶

Alzheimer’s disease is a global problem. According to the World Health Organization, currently more than 55 million people live with dementia worldwide, and there are nearly 10 million new cases every year. Alzheimer’s disease may contribute to 60–70 percent of such cases.⁷ The number of people affected is set to rise to 139 million by 2050, with the greatest increases in low- and middle-income countries. A new case of dementia arises somewhere in the world every 3 seconds.⁸

The Alzheimer’s Disease Continuum

The Alzheimer’s disease continuum (shown below) illustrates the progression of brain changes a person living with Alzheimer’s undergoes. Initially, these changes, which take place deep inside one’s brain, are unnoticeable to the person affected. However, these brain changes eventually cause problems with memory and ultimately result in physical disability.

The continuum consists of three broad phases: (1) preclinical Alzheimer’s disease; (2) mild cognitive impairment; and (3) dementia (see Figure 1). Within the third phase are three additional phases—mild, moderate, and severe. These three sub-phases reflect at what degree symptoms interfere with one’s ability to carry out everyday activities.⁹

Figure 1. Alzheimer’s Disease (AD) Continuum chart.¹⁰

The length of time an individual spends in each phase of the continuum varies from person to person. A number of factors—such as sex, age, and genetics—influence the time period of each phase. Although a person with Alzheimer’s lives an average of four to eight years after diagnosis, it is possible for an individual to live as long as twenty years after diagnosis.¹¹

Preclinical Alzheimer’s Disease

Changes in the brain related to Alzheimer’s begin years before any outward signs of the disease noticed by you or those around you. During preclinical Alzheimer’s disease, the brain compensates for these changes, enabling the individual to function normally. Stated differently, although a person has measurable brain changes indicating early signs of Alzheimer’s disease, this person does not yet experience memory loss or even know his or her brain is changing. ¹²

Mild Cognitive Impairment (MCI) due to Alzheimer’s Disease

During MCI, the brain can no longer compensate for the damage to nerve cells caused by Alzheimer’s disease. Therefore, in addition to evidence of brain changes, people with MCI also experience slight cognitive problems, such as complications with memory and thinking. The individual, family members, and friends may notice these subtle changes. Because these cognitive problems do not interfere with performing everyday activities, memory lapses or problems in thinking may not be noticeable to others who do not know your loved one well.¹³

Dementia due to Alzheimer’s Disease

During the third phase of the disease, the evidence of Alzheimer’s-related brain changes is now accompanied by noticeable cognitive changes that impair a person’s ability to carry out everyday activities.¹⁴ The individual has difficulty functioning in daily life due to symptoms such as memory lapses and confusion. The date at which an individual crosses from MCI to Alzheimer’s dementia is usually impossible to identify.¹⁵ As the dementia phase of Alzheimer’s progresses from mild to moderate to severe, it is common for individuals to experience many different types of symptoms that can change over time, which is a reflection of the degree of damage in different parts of the brain.¹⁶

The speed of progression from mild to moderate to severe Alzheimer’s dementia differs from person to person. Since Alzheimer’s disease affects people in different ways, each person may experience symptoms differently. It also may be difficult to place a person with Alzheimer’s in a specific stage as stages may overlap.¹⁷ To make matters even more complicated, someone living with Alzheimer’s may pass very slowly through one stage, but much more quickly through another, which is something I personally experienced with my mother.

Early-Stage Alzheimer’s Dementia (Mild)

In the early stage of Alzheimer’s, a person may function independently. He or she may still drive, work, and be part of social activities. Despite this, the person may feel as if he or she is having memory lapses, such as forgetting familiar words or the location of everyday objects.¹⁸

Symptoms may not be widely apparent at this stage, but family and close friends may take notice, and a doctor would be able to identify symptoms using certain diagnostic tools. Symptoms might be put down to other causes such as stress or depression or generally getting older. ¹⁹

Common difficulties include the following:

Coming up with the right word or name

Remembering names when introduced to new people

Having difficulty performing tasks in social or work settings

Forgetting material that was just read

Losing or misplacing a valuable object

Experiencing increased trouble with planning or organizing²⁰

Middle-Stage Alzheimer’s Dementia (Moderate)

Middle-stage Alzheimer’s is typically the longest stage and can last for many years. As the disease progresses, the person with Alzheimer’s will require a greater level of care.²¹

During the middle stage of Alzheimer’s, the dementia symptoms are more pronounced. The person may confuse words, get frustrated or angry, and act in unexpected ways, such as refusing to bathe. Damage to nerve cells in the brain can also make it difficult for the person to express thoughts and perform routine tasks without assistance.²²

Symptoms, which vary from person to person, may include these:

Being forgetful of events or personal history

Feeling moody or withdrawn, especially in socially or mentally challenging situations

Being unable to recall information about themselves, like their address or telephone number and the high school