Visions, Trips, and Crowded Rooms (18 page)

CHAPTER SEVEN

T
HE
J
OURNEY OF
THE
D
YING—A
T
RIP
OF A
L
IFETIME

“I have a long journey to take,
and must bid the company farewell.”
— final words of Sir Walter Raleigh

The second commonly shared deathbed experience is getting
ready for a “trip.” This is nicely illustrated in Mark’s story:

Mark, who was one of my patients, was always the head of the family, a take-charge kind of guy. From coaching the kids’ baseball games when they were young to running his own company, he was prepared. During his long battle with cancer, he played an active role with his physician in deciding which chemotherapy treatment was right for him. When he realized that he wasn’t getting better, he quickly changed the agenda and started planning for his death. He made sure that his family was aware of his wishes and even walked his loving wife through the details of his funeral arrangements.

When he became bedbound, the family spent time sharing old memories and telling Mark that he was a wonderful father and husband. As the long days went by, he began sleeping more and more. He’d wake up and ask for water, but he always shook his head no if they asked him if he was in pain. Hours before his death, his opened his eyes wide and asked his wife, “Is everything ready?”

Not knowing what to say, she responded, “Mark, we’re all here.”

“Are my bags packed?”

“What bags, dear?”

“The bags for my trip—it’s almost time to go.”

His wife attributed his confusion to his pain medication. She was unaware that her husband, like so many others close to death, was overcome by a need to prepare for an impending journey.

This phenomenon isn’t new or unusual. In many people’s
final hours, they regard their impending death as an actual physical
voyage—that is, they don’t really associate it with dying. I’ve
never heard my patients say, “I have to pack my bags for my trip
into death!” In their minds, the transition is still associated with
life. Even though dying is the trip of a lifetime, that connection
just isn’t made.

Most individuals don’t realize that this sense of taking a
journey is actually a part of the history of end-of-life care. In fact,
during the Middle Ages, a hospice was actually a way station
where people could find a safe haven, a small oasis while on the
road. Travelers were afforded the opportunity to rest and reenergize
before they resumed their long, wearisome treks to unknown destinations.
Those who were truly at death’s door were also welcomed
and provided with bedding, food, and companionship. While we
don’t tend to think about the origin of our modern-day hospices,
the archetype remains embedded in our subconsciousness—the act
of dying may be the rest we need before our final journey.

This phenomenon can take many forms for an individual. For
some, it may be about packing their bags and getting their tickets,
while for others it’s all in preparing themselves “to go.” Certain
diseases, such as terminal cancer, have a very clear trajectory,
with peaks and valleys and a predictable decline at the end. Other
illness, such as heart and lung diseases, may have periods of compromised
health and then sudden death. The way in which we die
definitely impacts how we prepare for the journey. This brings to
mind another patient of mine:

Arthur was an active man in his late 50s who had lived with lung disease for the last decade of his life. In the past few weeks, he’d been feeling fatigued and was using his oxygen more and more while staying close to home. One morning, however, he woke up with a burst of energy, showered, shaved, and put on his favorite suit and tie. When he called a couple of friends to pick him up for breakfast, they were surprised to see him so dressed up. They asked if anything special was going on, and he replied, “I woke up feeling good and just had a sense that today is going to be different.”

They all enjoyed a great breakfast, and Arthur’s friends were glad to see him up and about. When he returned home, he felt like taking a nap. He hung up his suit jacket neatly, lay down on his bed, and then died.

Arthur’s friends weren’t too shocked by his death since they’d been expecting it. At first they were taken off guard by the way he’d meticulously groomed himself for breakfast, but later they acknowledged that some folks wear sweats on airplanes and some wear suits. Arthur was clearly the latter: he made sure that he looked neat and put together for his final trip.

To us, these “trips” may seem to be all about leaving, but for
the dying, they may be more about arriving. This chapter gives us
more insight into such stories.

T
HE
B
OAT IS AT THE
P
IER

by Anita

As a social worker in a major hospital, my job is to listen to my patients’ experiences, identify their resources, and help direct them through the complex medical system. I’d like to share a story about Felicia, who was in her 80s and dying of congestive heart failure. An attractive woman with long gray hair, she was a homemaker who had raised her children, who now had children of their own. Her husband had worked in the oil fields and provided well for the family.

Felicia had been a lively, energetic woman for most of her life, and she’d suffered from few illnesses. When she was diagnosed with heart disease, she played it down, sure that her doctors were overreacting.

I’d rarely seen this woman sick or even tired, so although her condition worsened, she remained in denial for as long as possible. It was easy to do so, since Felicia could easily conceal the few health problems she was experiencing. But soon she couldn’t hide it anymore, since simply breathing was getting harder every day. When Felicia started to feel fatigued, her daughter, Carole, took her to a health-food store and bought vitamins, protein drinks, and raw foods. Felicia indulged her by taking all of it, but nothing restored her energy and sense of wellbeing.

Over a period of six months, Felicia stopped going out with friends, preferring to just talk on the phone. But as time went by, her breathing became even more labored. She’d have to pause at inappropriate times in a conversation in order to inhale, and her friends and family started to worry. Felicia became incredibly frustrated because instead of listening to what she was saying, they were listening to her breathing and could only talk about her illness. She once told her friend Joan: “I’m having trouble catching my breath—I know that. Now can we get past that and just talk?”

Shortly thereafter, Felicia stopped taking calls altogether because it was so frustrating and tiring. Carole was concerned because her mom had always been a social butterfly, and her life was once all about playing bridge and going to the movies with friends. But all that stopped.

A few months later, Felicia stopped talking completely, not because her hearing was diminishing or that she just didn’t want to, but because even the simple act of speaking exhausted her beyond belief. When it was clear to everyone that she was very close to dying, her family gathered and took turns watching over her. I was there to provide them with whatever assistance I could. She continued her silence until one day she suddenly sat up, very primlike, and waved at her daughter to look toward where she was pointing.

“Don’t you see them?” Felicia asked. Her voice sounded clear as a bell, and her breathing was steady and even for the first time in many months.

“See who?”

“I see a dock; and there are your dad, grandmother, grandfather, and uncle.”

Felicia’s brother had died many years ago, when he was in his 20s; her husband had died of a heart attack when he was in his 70s, about a decade previously.

“I still don’t see them,” Carole said.

“Well, they’re all there!” her mother exclaimed. “They’re standing on the dock, waiting for me to come across.” She paused, and then spoke directly to those she was gazing upon:

“There’s no boat at the dock. How can I get to you?”

Carole had no clue how to answer her. I didn’t know what to say myself, but I did know that Felicia’s question wasn’t for us and that she’d find the answer when the time came.

The following day, Felicia quietly uttered, “The boat is finally at the pier.” Those were her last words. In the end, she died peacefully.

T
HE
R
IGHT
B
US

by Gwen

I work at an institute that primarily helps people with disabilities live normal lives. One of the clients who grew up under our care was a spirited young woman named Sharon who wanted to help others. A kind soul and a dynamic presence, we often asked her to speak on behalf of people with disabilities who deserved equal access and treatment without discrimination.

Sharon’s challenge was an intellectual disability; unable to care for her, her parents had her institutionalized in a large mental hospital as a child. By that, I mean she was labeled as “mentally retarded,” but at the time, it was a catchall phrase for many conditions that had no mandatory education attached or accurate testing to distinguish one disability from the other.

Sharon was transferred to a group home, but eventually she was able to live on her own in an apartment. She had diabetes throughout most of her life, and by the time she reached her 40s, it was getting quite serious and debilitating.

As she was nearing her final days, she began to talk about waiting for a bus (Although she wasn’t able to drive, this remarkable woman was very independent and took the bus wherever she needed to go.)

Sharon was confined to her bed due to the complications from diabetes, and she began talking more and more about the bus she was waiting for. Because of her intellectual disability, her family and friends assumed that she was confused or hallucinating and discounted her, even though she was never on any pain medication.