Karl, eighty-nine, was a rebel against old age, and it
Be Not Afraid Caring
Chapter 16
Caring
Karl, eighty-nine, was a rebel against old age, and it didn't make caring for him easy. He could get upset with you when you didn't let him walk alone (it wasn't safe), or when he couldn't hear what you were saying (he was nearly deaf). Still, everyone loved him dearly. When his nurse pushed him through the neighborhood in his wheelchair, people stopped what they were doing to come over and say hello. Children left their play and ran over, showing him dandelions, shaking his hand, telling him their secrets. "Ja, Ja," he would say happily, in his thick German accent, though he didn't understand a word. Teenagers loved him too, because despite his age, he was "with it." He read the papers and knew what was going on, and he was keenly interested in what they were reading and what they thought about current events.
Karl never took the love that he received for granted. Given his rocky childhood, which opened with the
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death of his mother and ended when he ran away from his violently abusive father, that wasn't surprising. What was remarkable was the way his own gruff exterior fell away as he approached the final days of
his life. Sometimes, on being tucked into bed, he would even apologize to his caregivers (who included children and grandchildren) for having been abrupt earlier in the day. "I am sorry I was angry. Please forgive me." He died peacefully at ninety, surrounded by his family and by Irma, his wife of almost seventy years.
At first glance Karl's old age seems ordinary enough – a picture-perfect example of how life ought to be in the so-called golden years. But while every elderly person deserves the care that he was fortunate to enjoy, most do not in fact receive it. Sadly, the most common scenario involves confinement and fear, an eternally flickering television set to ward off loneliness and silence, and – despite Social Security – more poverty than any other age group in the population.
Only two or three generations ago, many people lived out their lives in one place. They raised their children, grew old, and died in their homes, surrounded by family and friends and church. In most sectors of society today – marked as it is by mobility and rootlessness – the sense of belonging to a particular community has been lost. Nowadays, for whatever reason, aging parents often lose what few close
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connections they have with their children by mid-life and enter old age in loneliness.
A young woman I know says that in the nursing home where she used to work, it was not unusual for a dying
client's family to instruct the staff not to call during the night. "Don't call me while I'm sleeping," one man told her when she called to say that his father might die during the night. "Give me a ring in the morning, if you have to."
Such callousness may be extreme, but its causes are pervasive: estrangement, isolation, and long periods of physical separation. After visiting the United States in the mid-1990s, Mother Teresa spoke of her shock at seeing how our country tends to warehouse its elderly. While noting that in one place she visited, they seemed to have no material lack – food, medicine, nurses, comfortable furniture, entertainment, and the like – she also described their bored, blank stares and their gaping mouths, their resignation, and the way some kept glancing toward the door. "Sister told me," she said, "that this is the way it is nearly every day. They are waiting, hoping that a son or daughter will come to visit them. They are hurt because they have been forgotten."
The plight of the institutionalized elderly seems simple enough to pinpoint, but it has many deep-going roots and defies a simple solution. Talk to anyone with
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an aging parent, especially one who is no longer capable of living independently, and the complexity of the issue will quickly become clear. No one wants their mother or father to die unloved, in an unkempt, impersonal
environment, but when you add up the commitments that keep a working adult tied down from dawn to dusk, it's perfectly understandable why so few find it possible to provide long-term home care for their parents. Most lack money, time, space, or energy – if not all four.
Aging at home isn't all roses either, especially for people who live alone. And even when circumstances allow a family to care for a loved one in their own house, there are numerous challenges, as Joan – an acquaintance with a bedridden father – confesses:
For someone who's never experienced it firsthand, it's
hard to imagine what actually transpires in a household
when a member becomes terminally ill. I don't live at
home – I have my own house and family – but I spend
time with my father whenever I can, and it has given me
some idea of just what caring means.
There was no exact moment when Dad crossed from
being merely old and sick with pneumonia to being
"terminal" – it happened only gradually. Days of illness
stretched into weeks, and then months, and though we
were always wondering when he'd turn a corner, he
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didn't. He'd start to pick up, but then his fever would
recur and send him on the next round of antibiotics.
Finally we realized that things had gone on far too
long, and arranged for home nursing care twenty-four
hours a day. He declined rapidly, weakening to the point
where his doctor told him it might be the end. Our minds
struggled to grasp what was happening. Where were the
intimate moments of farewell I'd imagined to be part of
a death? Privacy seemed a thing of the past, and I chafed
under the need to relate to an ever-present nurse. How
could I tell Dad in words how much he'd meant to me?
And wouldn't that be admitting the truth of what his
doctor had said? I shed my tears in private.
We groped to adjust, as relationships in our family
kaleidoscoped dizzily. There was Mom's role reversal:
before, Dad had always looked out for her; now he
depended on her to look after him. A hospital bed in a
separate room replaced the bed they'd shared for fifty-
odd years, and everywhere you turned were spittoons,
oxygen wires, glasses of water sporting straws, and
dishes of barely-touched food.
With doctor's appointments, blood tests, bed changes,
and baths, there seemed few hours of the day where
Dad could be truly peaceful. And besides these outer
distractions, he was constantly short of breath. Comfort
eluded him, and he was always fussing with sheets,
pillows, and leg positions. Nothing I could do seemed
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to relieve him, and it was a rare respite when Dad could
slip into anything deeper than a restless doze.
Dad did not die. He hung on, but recovery has not
been quick to follow. Though physically somewhat
stronger now, he still requires 24-hour care, and his
once keen interest in life has been hard to rekindle. His
doctor's repeated assurances that recovery will come
with time have begun to sound empty.
Before his illness, Dad was always used to being in
control of his life. Now it's just a small world, but he's still
very much in charge: if you want to take him for a ride,
it's too cold; if his nurse disappears for a few moments,
he watches the clock for his return; if it's three in the
morning and he thinks it's time for his morning shower,
it's impossible to get him back to sleep. One day I tried
to put lotion on his dry, scaly skin. "Too greasy," he said,
so I put the bottle away. As time goes on, I've had to
come to terms with being unable to undo his pain, and
to trust that my presence will somehow convey what I
cannot accomplish through actions…
Joan feels privileged to help care for her father. But she admits that she does feel hopelessly inadequate at times, and she is certain that without the bonds of love that keep a family together, the unavoidable tensions would soon create cracks, if not deep fissures.
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Given the challenges that arise in such situations, it is easy to see why families who start out caring for someone at home often end up turning to a nursing home or hospice. That is nothing to be ashamed of:
anyone who has cared for someone with a chronic condition knows that eventually it takes a toll. Yet just as the most menial chore can become a privilege, if performed with love, so too, a difficult decision can be made bearable if it is made with compassion and sensitivity.
Tragically, both are often lacking, or present only in words, and the result is that many elderly people feel unwanted and abandoned. Is it any wonder that large numbers feel they are a burden on their families; that many who retire soon tire of living, and that it is no longer taboo, but commonplace, to speak of a terminally ill person's "right" to die? How many people would fight for such a thing, if they were guaranteed a right to decent end-of-life care – a right to be loved?
An article recently sent to me from England quotes a doctor who excused himself from charges of physicianassisted suicide by claiming, "It could have taken another week before she died, and I needed the bed." In this country, too, such incidents are no longer unheard of. This is especially tragic when one considers how much every elderly person has to give, no matter how frail, incapacitated, or disoriented he is. Even a senile
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person can contribute something by his presence, if those around him have the patience and humility to receive it.
As a schoolboy in the Paraguayan village where I grew up, I used to help Bernard in the stables where he worked. Bernard had a way with horses and seemed strong as an ox – reason enough to make him one of my boyhood heroes. Decades later, as a seventy-fiveyear old, I got to know him again in a very different way. Once a gifted man with a wide variety of interests (aside from his affinity with animals, he was an avid gardener with an impressive knowledge of chemistry and biology), he was now suffering the first ravages of Alzheimer's disease and slowly, irreversibly losing all his skills and faculties.
As Bernard's illness progressed, his frustration grew: he lost his ability to do simple things like make tea; his sense of direction failed him; he had no idea what day it was, or what time. Soon he could not even communicate his most basic needs – though one only had to read his eyes to feel his pain. Toward the end he could no longer recognize his own family – not even Eileen, his wife of fifty years. But Bernard never lost his smile – a broad, slow grin that lit up his face as if something happy had just dawned on him. And he never lost his love for
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children. In fact, he saved his last smile for a baby a neighbor brought by.
Like Bernard, my mother-in-law, Margrit, was completely incapacitated by the time she died: she
suffered from Lou Gehrig's disease for the last thirteen years of her life; for eight of those she was basically bedridden.
Blessed with eleven children, and more than sixty grandchildren, Margrit was a tireless worker who had a knack for getting things done. She was a talented woman too, as was obvious to anyone who heard her direct a choir or lead an orchestra (she had studied the violin at a prestigious European conservatory). Still, when I think of her, I think of the German saying, "quiet waters run deep." In contrast to her husband, an animated talker, she was so unassuming that when asked for her opinion on something, she was known to smile and say only, "I'm listening." But it was not because she was timid. In fact, there was a confidence and sureness about her that spoke louder than words.
To me, Margrit's last years highlight the significance of caring for the elderly, and not just in the sense of helping or nursing them, but in learning to be attentive to the gifts they give back. While another musician might have lamented the erosion of her skills, she did not; on the contrary, she meekly accepted her limits. Eventually she became so frail that she could speak
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only with great effort. She could no longer do anything for herself. But she still took visitors' hands in her own faltering clasp; and she still spoke to them, even if silently, with her loving gaze. And, as she whispered to
a nurse one day, "I can still pray." Through all this, she reminded us that in contrast to the proud achievements of youth, there is something about the simplicity of love that time can never destroy.
No matter the age or condition of a dying person, I believe that every one possesses a spark of such love. It may be hidden, or hard to find. But if we truly care, we will not give up looking for it. And once we have uncovered it, we will fan it into flame and nurture it until the end.