While some people may want to go out with a flourish, most of us say we want to
die quietly, with dignity. A dignified death usually means not having to
experience unreasonable life-saving or life-preserving efforts without our
explicit consent. Sometimes our precautions and best-laid plans work;
unfortunately sometimes they don’t. As a registered nurse and as a family member, I have been a part of both
situations, and that is where this true story begins.
My husband’s step-mother, Jean, lived in Great Britain before she married DeWitt, my
father-in-law, when she was in her forties. Despite her voluntary immigration
to the Colonies, Jean remained British to the core. At the same time she
embraced all American holidays with great enthusiasm, something everyone who
knew her found delightful. In our family there were two certainties connected
to holidays with Jean. One was she would try to cook an American-style meal and
the other was she would sing at the drop of a hat—and she would do both very badly.
A Christmas Eve family tradition developed around watching the modern film
version of Little Lord Fauntleroy. “As the villagers and gentry of 19th century England gathered in their little
church for services, they sang the Anglican hymn, “Bless my Soul, the King of Heaven.” Jean always chimed in loudly singing off key and off beat, to the great
amusement of all her adopted family.
Jean and DeWitt lived near Charleston, S.C., in their retirement until a wasting
illness robbed DeWitt of his independence and of his opportunity to live out
his life in the country which he fiercely loved. In 1986, Jean determined that
he could get better end-of-life care under the British National Health Plan,
for which she was still eligible in her home country, and they boarded a plane
bound for the U.K. DeWitt came off the plane behind the wheel of his motorized
scooter, tooting the bike horn that Jean had attached to the handlebar. The
couple settled into a first floor flat in the village of Seaton near Jean’s earlier home of Sidmouth on the coast of eastern Devon.
While DeWitt was still somewhat mobile, Jean would often load his scooter into
their motor car and take them off for a morning coffee or an afternoon
Devonshire cream tea in a neighboring village, helping DeWitt maneuver the
scooter along the narrow cobblestone streets and sidewalks, scowling and
grumbling if anyone dared block their way with another vehicle. She always wore
classic English garb—tweed skirts and jumpers in cool weather; Liberty prints or Laura Ashleys on
warmer days.
Three years after they moved to England DeWitt died as expected in his bed in
the front room of their flat, attended by home nurses and neighbors. We had
visited them six months earlier but none of his immediate family could be there
at the end. By all reports, it was a “good death.”
Pat and Jim, their next-door neighbors, were unfailing in their kindness to
DeWitt during his decline and later to Jean, who had developed Parkinson’s disease during DeWitt’s final years. Never much of a driver even when she was healthy, Jean was a true
menace on the road once the Parkinson’s had stolen her reflexes. She gave up her motor car and replaced it with DeWitt’s motorized scooter, which Pat and Jim regarded as infinitely more dangerous
than the car. They watched in dismay as she would scoot up and down the village
streets, completely disregarding all roadway courtesies and rules. If Jean
couldn’t make it into a shopkeeper’s store, she parked in his doorway and tooted the horn until someone came out to
attend to her.
When we visited Jean in Seaton a few years after DeWitt’s death, we missed seeing Pat coming and going next door and we were surprised
to hear she had died.
“What did she die of?” I asked.
“She died from what everyone dies of,” was Jean’s response. No matter how many times and how many ways we asked the question, we
always got the same answer.
If I looked out the plate glass window in the front room of Jean’s flat, across the esplanade, turning my head to the right along the horizon of
the English Channel towards the chalky cliffs to the west, I could see a little
of Beer Road, just as it made its ascent from the beachfront of Seaton to the
bluff town of Beer. The scene was a favorite of painters, among them Jean, who
had captured it in water colors and in charcoals. While living in the
Charleston area, she frequently hung her water colors of Rainbow Row and the
Gullah women on the fence at St. Phillip’s Church during Spoleto and other arts shows, and she did the same with her
paintings at local art shows in Seaton.
The Big House on Beer Road
My husband and I had once walked up Beer Road. Trekking is a national sport in
England and almost every roadway is crossed by public footpaths. We followed
one such trail leading off the road to the right into a wide garden which swept
up against a stately manse. Elderly residents in wheelchairs accompanied by
family members were enjoying tea and sherry in the garden. We enjoyed sitting
there for a while as we recovered our energy from the steep climb. On another
occasion when we were
riding in a car up Beer Road we wound slowly then suddenly descended sharply
until just around the bend to the left emerged the front of the same estate—Check House, so named from the checkerboard pattern of the tile work over the
front entrance. I used to think if I ever had to be in a nursing home in the
south of England, Check House would be the one I’d want. The building has obviously stood at this juncture for most of the past
century and additions have been made upwards and alongside, but none have
interfered with the beautiful gardens that spread from the back of the house to
the bluff.
Jean put up a good fight to stay in her flat, once locking herself inside and
phoning the local constable to complain that her family was forcing her to
leave it, but eventually she had no other choice. She moved to Check House,
taking with her what she could and leaving the rest behind in her flat in
Seaton.
On our next visit to England to visit Jean some three years later, we arrived at
Gatwick Airport tired from our transatlantic journey. Beer is about three hours
by car from Gatwick so we spent the night with Jean’s brother, John, and his wife who lived near the airport. Before we set off on
Friday morning, they warned us her condition had deteriorated quite a bit, but
they also told us that a few months earlier she had reveled in the party thrown
in honor of her eightieth birthday.
Jean was sleeping on her bed when we walked in, her thick curly hair smudged
with grey and framing her thin face. Arrayed on a table next to her bed was a
stack of some fifteen or twenty of her colorful wide brim hats. Standing at the
base of the table were her water colors and brushes. On the wall above her bed
hung one of her recent paintings of the entrance to Check House with every tile
exactly aligned and every pillar upright and even.
I looked out her window across the garden to the vast openness of the English
Channel. Because of the foliage I couldn’t quite see all the way back to the esplanade in Seaton, but I could imagine the
scene. The 2 o’clock tea trolley arrived, waking Jean, and we were offered pots of English tea
and/or small glasses of sherry. Jean opted for tea and I chose sherry for
myself. The staff member helped her into her chair.
In the years that had passed since we had last seen her, she had experienced
many of the ravages of Parkinsonism, most notably the onset of tardive
dyskinesia, commonly known as TD, a side effect of the anti-Parkinson’s medicine, which kept her body in almost constant motion. Hands and arms
waving, legs and feet dancing in random, useless movements, Jean was almost
completely unable to keep herself seated in the chair. Every few minutes she
would slide to the floor and I would help her back into her chair. Despite
this, she stayed true to her persona, costumed in a Laura Ashley red print
dress, with her pearls at the neckline and wearing the oversized wristwatch she
had worn all her life. Her hair had always been her best feature—naturally thick and curly—and today was no exception. Cut shorter than usual at her jaw line, it still
fell forward into her face as she glided off the chair again, and I made a
mental note to purchase a hair scrunchy for her.
I glanced at the Check House painting.
How, I wondered, could she have done this work with such precision when she
cannot even raise her teacup to her mouth?
The nurse who had entered the room noted my puzzled look and told me that Jean
painted almost every day and never with any TD symptoms.
Amazing, I thought.
