Saturday, April 12, 2014
So thirsty

By the time a patient reaches the late stage of Alzheimer’s, complete deterioration of the personality and loss of control over bodily functions requires total dependence on others for even the most basic activities of daily living. A few days ago Miss Mercedes had suffered a massive stroke, and her condition was steadily getting worse. Before long she sank into a coma-like state. Hilda, her daughter, flew in from out of state and decided that her mother should be placed on a ventilator. And so it was done.

Yet her condition did not improve. To make matters worse, Miss Mercedes developed a heart murmur and an ulcerated esophagus. During her last series of tests, evidence revealed that one of the arteries supplying oxygen-carrying blood to Miss Mercedes’ brain had been damaged. Lately Miss Mercedes was having trouble breathing even with the ventilator. Her loss of physical and mental functions appeared to be permanent. Her quality of life was abysmal. So the team conferred with her daughter and together they agreed to transfer her to the hospice care unit.

Hospice Care

If you really thought about it, hospice care was a noble undertaking. The arrangement would give Miss Mercedes a chance to spend her final days in dignity. Her interdisciplinary care team met often to determine what would happen next. The team consisted of the administrative manager, the attending physician, the nurse and CNA, the social worker, Michelle the chaplain, and Miss Mercedes’ daughter.

Each member of the team served a specific role. The manager coordinated the whole operation, making sure that weekly meetings would occur on a regular basis and that HIPAA rules were followed. The manager also took responsibility for completing the paperwork and making sure that decisions were communicated to appropriate individuals in a reasonable amount of time. The attending physician conferred with the team on matters pertaining to pain management and medical care. The nurses and CNAs performed a critical function. They attended to the patient’s day-to-day physical and emotional care. They were involved with the most intimate aspects of Miss Mercedes’s well-being. They were responsible for giving baths, skin and mouth care, feeding, and toileting. They also did light housekeeping and ran errands, if that’s what the circumstances demanded at the time. The social worker was responsible for providing emotional support and arranging for community resources, financial assistance if necessary, transportation, and government benefits. The chaplain provided spiritual support to the patient and her family. After Miss Mercedes had spent some time on the vent, the interdisciplinary team decided to place the matter in God’s hands. The vent removal procedure was scheduled for Friday.

Vent Removal

When the time came, Miss Mercedes’s primary nurse notified Michelle and Hilda that the respiratory therapist had arrived. Michelle led members of the staff and a few of the residents to the room where the respiratory therapist had already begun her work. Quite a few people from Miss Mercedes’s past had gathered to say their farewells.

Michelle explained to the group each step in the procedure and why it was being done. After she had recited the science of the procedure, she directed their attention to that which transcended the science. She told the witnesses she prayed that Miss Mercedes would breathe on her own after artificial respiration was discontinued.

“After that happens, everything else is in God’s hands,” she said.

With that pronouncement, the tubes were removed, and immediately Miss Mercedes started to breathe on her own. After a few seconds of silence, Michelle read two scriptures she had selected for the occasion. Everyone joined hands.

“Let us pray,” Michelle said.

She thanked God for Miss Mercedes’ life and for the way she had lovingly influenced so many people. She thanked God for the memories Miss Mercedes had created and the lessons she had taught to those who crossed her path. She asked God to accompany Miss Mercedes on the last few remaining steps of her journey on this side of life. She told God that none of us understands death; it frightens us and intrigues us at the same time, but be that as it may, we were putting our trust in God. She asked God to give comfort and strength to those gathered here and to show them ways to resolve the uncertainties that would grow in their spirits in the days to come. She asked God to give them courage and compassion to stand with each other and support each other in these disconcerting times. Finally Michelle asked God to help them all remember that absolutely nothing could separate any of them from God’s everlasting love.
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English: Diagram of how microtubules desintegr...

Right after breakfast, Mother Mercedes sat at the dining table alone. She had fixed her attention on a crumb of bread that had been left behind from the morning meal. She poked and patted at the crumb until Chaplain Michelle arrived to escort her to their morning visit with the nurse and the new social work trainee. 

That’s how Michelle happened to be sitting with Miss Mercedes near the nurse’s desk when a visitor approached.

“Hello. My name is Angela Martin,” she announced. “I’m here to see Frances Parkinson. We have a meeting scheduled for 10:00.”

“Hi. My name is Michelle Anderson. I’m the Chaplain Intern. I’m sorry, but Mrs. Parkinson is attending to a medical emergency right now. I’m sure she’ll be back very soon. Would you care to have a seat in the lounge?” 

“No thank you. I think I’ll wait right here outside her office if you don’t mind.”

“That’ll be fine.” Michelle answered. At that moment Michelle glanced to her left. 

Marvin, a long-term Village resident, was strolling down the hall. Michelle shook her head slightly, not knowing what to expect from Marvin this morning. He was so unpredictable. She figured if she engaged him in some way he would be less likely to do something that was completely off the wall.

“Good morning, Marvin,” Michelle said pleasantly.

“Don’t be smiling at me, Chaplain. I know what you’re up to. I’m not going to pray with you. I’m not going to chapel. And I’m not reading any bibles, either. I told you before.” All the while Marvin was displaying his toothless grin. “I’m just messing with you, Chaplain. You know I love you!” He pursed his lips in a phony kissing gesture.

Michelle laughed along with him. “That’s okay, Marvin. You know God don’t like ugly. I’m not going to force you to do anything you don’t want to do. So, what’s up today?”

“Those CNAs keep trying to get me to eat that slop they serving in the dining room. I’m hungry, but I’m not eating that mess! I’d rather skip a few meals.”

“Good!” Michelle retorted. “… More for me!” By then they were both laughing playfully.

Suddenly Marvin noticed Angela Martin, who had started to fidget in her seat. 

“Who is this lady?” Marvin asked.

“This is Mrs. Angela Martin. She’ll be visiting with Mrs. Parkinson this morning,” Michelle responded.

“Hey, baby! How’re you doing?” Marvin walked closer to her. Angela squirmed a bit but didn’t answer. She fixed her eyes on the pile of papers that was on her lap. “I’m talking to you, lady.” Marvin said.  “I asked you how you doing.”

“I’m doing just fine, thank you.” Visibly uncomfortable, Angela responded with a tight lip.

Marvin walked closer to her and began to stare her up and down. “Hey! You are fine! I like me some big women!” Marvin said. “You married?”

Angela did not answer. Instead, she looked at Michelle for some assistance.

“Marvin! Go on, now; leave Mrs. Martin alone.”

“Aw! Chaplain. I don’t mean no harm. I just think I done fell in love! Love! Sweet love!”

Without warning, Marvin turned to face Angela head on and tugged at the waistband of his sweatpants. Before anyone could understand what was happening, he had dropped his drawers, revealing to the world the very nature of himself, hanging out there for everybody to see.

“Hey! Lady! I want to marry you,” he said.

Just at that second, Frances Parkinson exited the elevator. Quickly she assessed what was going on and sprinted down the hall toward Marvin.

“A little help here,” Frances shouted. 

Orderlies and CNAs rushed into the hallway from rooms where they had been attending to other patients. One of the orderlies got a hold of Marvin. Another one pulled up Marvin’s pants. Then, together, both of them rushed the panting man away to a private place out of sight of Angela Martin, whose eyes were tightly closed.

“I’m so sorry!” Frances said as she approached the visitor. 

Frances held out her hand as a gesture of peace. Spurning the handshake, Angela rushed off in the direction of the rest room. 

“Oh, my!” Frances said, trying to suppress her embarrassment and a chuckle at the same time.
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English: Histopathogic image of senile plaques...

The next day when Michelle arrived at work, she had just put her purse on the desk in the office when the nurse came in and told her that Mabel Foster, Miss Mercedes’ good friend, had died earlier that morning from complications of Alzheimer’s disease. 

The family had already arrived at the Hospice Center, and others were on their way. Mabel’s eldest daughter had requested the presence of the chaplain.

When Chaplain Michelle got to Mabel’s room several family members were still inside, while others had spilled over into the hallway. Mabel’s youngest daughter was overwrought and appeared to be on the verge of passing out. The nurse went to get a wheel chair for her as Michelle helped this daughter’s husband take her back into the room. Others in the room were also crying. Michelle’s instincts told her that nothing could proceed until those tears had been spent. So she handed out tissue and facilitated the process, helping the calmer family members comfort those who were distraught. Reminding them that Jesus had been a man of sorrow and acquainted with grief, a man who cried on more than one occasion when sadness reared its ugly countenance, she gave them permission to entertain their sorrow for just a little while. And so they let it out, let it go, let it evaporate so they could get on with the other matters of the world. After about five minutes, everyone had calmed down enough to do what needed to be done next.

Michelle escorted the family to the lounge and told them that the nurse was going to take care of Mabel so the family could spend some time saying goodbye to her. As the nurse prepped the body in the hospital room, Michelle circulated among family members to share words of comfort and support.

The nurse finally ushered them back into the hospital room. Mabel’s body had been washed. All tubes and devices had been removed. Her hair had been combed and a clean sheet was draped across her lifeless limbs. Hospital equipment had been set outside, and the room had been sprayed with an air freshener to enhance a mood of serenity. With her hands folded across her chest, Mabel looked very peaceful.

After the family had filed into the room, Michelle asked if they would like to join her in a word of prayer. As they held hands around the bedside Michelle prayed for Mabel’s life, for her family’s strength, and for their peace. The family remained on the unit, taking turns sitting with Mabel, until the funeral home arrived to remove her remains. 

Michelle busied herself with writing up the details of Mabel’s death. She had no time to add her own tears to the ever-flowing river of grief she encountered on a daily basis. She was the chaplain; she had to be about the work of the living.
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English: Complete neuron cell diagram. Neurons...

The mechanics of Alzheimer’s disease are amazing. The brain has about 100 billion nerve cells interacting with each other in a specialized network. They kind of function like workers in a tiny factory. They take in supplies, generate energy, construct equipment and get rid of waste. Cells also store information and process information. Keeping everything running requires coordination as well as large amounts of fuel and oxygen. In Alzheimer’s disease, parts of the cell’s factory stop running well. Scientists are not sure exactly where the trouble starts. But just like a real factory, backups and breakdowns in one system cause problems in other areas. As damage spreads, cells lose their ability to do their jobs well. Eventually, they die.

Alzheimer’s is the most common form of dementia. Currently it affects more than 5 million Americans. Although support and services tend to contribute to a better life for people living with Alzheimer’s modern science has not yet found a cure for the disease. Symptoms are treatable although eventually, the disease results in fatal malfunctioning of the body’s nerve cell networks.

There are three stages of Alzheimer’s disease, depending on the source of information. In the early stage, some mild memory loss or other cognitive deficits are noticeable, but the person can compensate for them and continue to function independently. The mid stage, or moderate phase, Alzheimer’s robs the individual of additional mental abilities. The personality changes and physical problems develop so that the person becomes more and more dependent on caregivers.In the severe or late stage, complete deterioration of the personality and loss of control over bodily functions occur. The patient in the severe stage becomes totally dependent on others for even the most basic activities of daily living.

Also in this final stage people lose the ability to respond to their environment, the ability to speak and, ultimately, the ability to control movement. Frequently individuals lose their capacity for recognizable speech, although words or phrases may occasionally be uttered. Individuals need help with eating and toileting and there is general incontinence of urine. Individuals lose the ability to walk without assistance, then the ability to sit without support, the ability to smile, and the ability to hold their head up. Reflexes become abnormal and muscles grow rigid. Swallowing is impaired.

Eventually the body forgets how to thrive.
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Friday, April 4, 2014
English: PET scan of a human brain with Alzhei...
Chaplain Michelle had read somewhere that storytelling helps the mind impose order on the world’s nonsense. Stories have been used throughout the centuries to transmit information from one generation to the next so that the mistakes of the centuries would not be repeated out of ignorance. There was always the impetus to get the story straight – to cling to that which was good and right and true and make it a part of the community’s truth. 

The story of one's life was always a work in progress. And people never stop telling their stories.

As the months passed, Chaplain Michelle discovered that her friend Miss Mercedes never told stories in the order they happened. Sometimes she added fresh details and color to the retelling. It’s like the stories were life forces, growing up and maturing every time they were told.

Michelle felt she owed it to Miss Mercedes to get things just right. So, after each visit, Michelle rushed home and tried to write down all the details, passing it along to the next generation just as it had been imparted to her. Somebody had to be aware of the whole story; somebody had to feel it in their bones, relive it in vivid colors in their minds, embrace it in their spirits; otherwise they’d have to learn it all over again from scratch.

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Sunday, March 16, 2014
English: A healthy brain compared to a brain s...

Alzheimer’s Series Introduction

The next several blog posts will focus on Alzheimer’s disease. Although the situations described here are fictionalized and the characters composites of patients I have visited over the years, the posts attempt to convey the realities faced by those who suffer from Alzheimer’s and other forms of dementia. The main character of these reflections is Ms. Mercedes Chambers, a 65-year-old victim of early onset Alzheimer’s disease. Michelle is the chaplain intern who cares for her spiritual needs as a resident in a long-term care facility for elderly patients with dementia. It is my hope that these reflections will shed some light on the impact of the disease on both the patients and those who care for them.

Alzheimer’s: Early Warnings

After getting off the elevator on the 15th floor, Mercedes Chambers strolled over to the reception desk and tried to attract the attention of two clerks who didn’t seem to realize she was there. One of them was talking about her visit to the nail salon. The other was ragging on about her wayward son. Nonetheless, Miss Mercedes, who stood patiently waiting to be acknowledged, was getting a bit apprehensive. It had been a long time since she’d been to a doctor of any kind.

As part of the intake process, one of the clerks asked Miss Mercedes to fill out a form to indicate that she had been given a statement regarding her privacy rights. She also had her fill out a two-page medical history. Miss Mercedes looked down the long list of ailments. She placed a check mark beside the issues that applied to her recent status: Rash, fatigue, bronchitis, sinus infection, sprained back, insomnia, high cholesterol, hypertension, bursitis, pneumonia, and depression. Miss Mercedes noticed the form contained no spaces for despair, weariness, disappointment, or suicidal thoughts. She’d have to make a mental note to tell the administration to revise their form.

Alzheimer’s: Memory Losses

Miss Mercedes struggled continually with a realm of memory issues. She had started to forget things like paying her bills and taking her medications. More often than not, she walked into a room and completely forgot why she was there. She had started the bad habit of heating food in the microwave and forgetting that she had done so, discovering her oversight a day or two later. She couldn’t seem to put faces and names together the way she used to. Even more frightening, she had started to grow lightheaded and had passed out at least twice last month.

As a result of their visit, her doctor wrote Miss Mercedes several referrals for follow up tests and screenings. As it turned out, in addition to having high blood pressure, high cholesterol, a heart murmur, and obesity, Miss Mercedes, was diagnosed with early-onset Alzheimer’s disease, the genetic kind that is relatively rare and attacks its victims before age 65. Symptoms of early-onset Alzheimer’s disease are similar to those of late-onset Alzheimer’s disease: memory loss, confusion, restlessness, misplacing things, trouble performing familiar tasks, changes in personality and behavior, poor or decreased judgment, impaired communication, inability to follow directions, problems with language, impaired visual-spatial skills, social withdrawal and less willingness to interact with others, and loss of motivation or initiative. 

Some research had suggested that people with early-onset Alzheimer’s disease tended to decline at a faster rate than those with other forms of the disease.

Miss Mercedes was in the early to middle stages of Alzheimer’s disease. At first, she had been able to communicate articulately. However, as the disease progressed she labored in her efforts to connect with those around her. Although her symptoms were treatable, there was no cure for the disease. Eventually, her body’s nerve cell networks would begin to malfunction. As damage spread, all indications were that Miss Mercedes would eventually die from complications associated with the disease.

Perhaps the most tragic side effect of the disease was that Miss Mercedes seemed to be losing track of the details of her life. She often said she needed to be able to connect the fragments of her existence to some larger reality. She had told Michelle, the chaplain, on more than one occasion that the only thing a person leaves behind is what people remember about them. She believed that the only way people would remember that she had existed on this side of eternity was through the stories people would tell about her.

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Sunday, March 2, 2014
English: The North Shore, an area of affluent ...
English: The North Shore, an area of affluent lakefront suburbs north of Chicago in Illinois. (Photo credit: Wikipedia)

In my assignment as “chaplain intern” at a residential retirement community, I was given a caseload and the duty of leading worship services about two times a month. On those days recreational rooms at the facility were transformed into chapels, thanks to the contents of a utility cart we rolled from floor to floor as we presided over three services on our assigned Sundays. The carts were equipped with all the ritual accoutrements including the appropriately colored paraments, a cross, worship bulletins, hymn books, a portable microphone, and the meditation for the day. The cart even contained detailed instructions on how to set up the worship space and what to do before and after the preaching was done. The services were to be no longer than 25 minutes so there would be time to greet worshipers afterward. The instructions were quite helpful and served to reduce the level of anxiety we brought to the situation.

For many reasons on this particular day, however, I felt nervous, a sensation that bubbled up from my history as a poor, Black resident of the North Shore, the geographical place from which most of the aging residents hailed. If you know anything at all about the North Shore, you know that it consists of approximately 35 miles of land stretching along Lake Michigan. Some of the wealthiest communities in the nation can be found there. This wealthy enclave is bounded on the south by Skokie and on the north by the Great Lakes Naval Training Center. Adjacent to Great Lakes is a little community called North Chicago, the place where I grew up, the place where the money stopped and the poverty and racism began. 

If you boarded the train at the Northwestern Railroad commuter stop at Lake Forest, you could ride all the way “down the line” to Chicago.

Down the line is where my mother worked when she was pregnant with me. After I was born she found other employment as a secretary at the naval base. But back in the 1950s, like so many other Black women, she did her time as a domestic employee in the homes of affluent white folks.  

Contrasts between poor blacks and rich whites were stark in the 1950s when I was growing up. The lavishness of the North Shore is legendary. Back in those days, toward Lake Michigan, stood great Victorian mansions lined with reddish or blond-colored brick and adorned with tastefully hued awnings. The yards were lush.  Flowering annuals of all colors and rich, perennial greenery formed collars around the walkways and borders. 

North Chicago, on the other hand, stood in sharp contrast to this opulence. As a matter of fact, one might classify sections of North Chicago as economically depressed. About one hundred blocks square in size, my neighborhood consisted of a curious blending of rural squalor and suburban promise. The town had attracted many former Mississippians during the Great Migration. My relatives were among the refugees, bringing with them their transplanted southern knowledge about the cosmos, their humble ways, and their unabashed love of God. Many of my foremothers and forefathers made their living working as domestics “down the line” in the homes of rich, white people who resided in Lake Forest, Winnetka, and Wilmette. My people stoned their souls as they nurtured a resilience grounded in faith. And somehow they managed to endure in the midst of hatred and degradation.

On the Sunday I am describing, I was responsible for assisting with the liturgy at my field site. It would be the first time that I and another seminary classmate would be conducting the Sunday service without the presence of our chaplain supervisors. Given my context and background, you can imagine that I approached this task with mixed emotions. I relished the idea of ministering to the needs of older adults, God’s dear ones who deserved to end their lives with dignity. At the same time I harbored all these unpacked feelings about privilege and racism and wealth, having been on the “victim” end of all three. To complicate matters, I was a stranger in a setting that enjoyed firmly rooted norms and traditions based on privilege, some of which I would never know or understand. I questioned whether or not I would be able to serve God’s people without letting my feelings get in the way. But there was no time to worry about such things, for the worship service was about to begin.

As usual, I was the only Black person in the room as the residents processed into the space we had designated as sacred. In wheelchairs and walkers they came. With canes and by foot they ambled into the room and took their seats in a posture of expectancy. Confident as they entered the space, they knew the liturgical routines far better than I did. After all, my teammate and I were members of the 25th class of chaplain interns, while many of the residents had lived there for 30 years or more. They were the veterans, the faithful ones. They came into the worship service because they wanted to praise the Savior. They came at the urgings of the Holy Spirit. They came because their faith told them this was the right thing to do. 

It dawned on me as I watched them that I, too, had come for many of the same reasons. I had a hunch that some of these people had suffered through challenges, sorrows, and pain, just as I had suffered. I imagined that they, at one time or another, had sought shelter from the storms of life, just as I was seeking refuge. And I believed that they loved God with their whole heart, just like me. Was their pain black? Was their suffering white? Was it rich? Was it poor? Was their love as red-hot as the blood of Jesus? Rather than burden ourselves with the weight of all those questions, we closed our eyes in reverence and set aside our social and economic differences at least for that brief 25-minute interval when we became one in the spirit and, in doing so, held racism at bay.
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