“I considered counselling. I had
trouble sleeping. I felt as if my
life had been taken away. I talk to
many friends honestly about my/
our situation. It is a case of when
to take the next step and, in the
time of COVID, where to go from
here. My husband and I were
already on lockdown,” she says,
“and now more so.”
Joan appreciates her friends’
advice about taking care of
herself. She volunteers as an
English tutor, which she finds
fulfilling, being a retired teacher.
“It’s super good,” she says.
Lynne’s husband
has now moved to
continuing care,
but for several
years she was
essentially his
nurse. He used a
walker, a lift chair, a
wheelchair for longer trips, and
eventually Lifeline to call 911 if
he fell and needed help to get up
when Lynne was not at home. He
was often moving about during
the night, which meant many
sleep interruptions for Lynne.
She did all the house and garden
chores, and when she went out,
she felt she had to “rush back.”
Lynne hired a home care
company so she could go to the Y
for exercise three times a week.
“It was okay at first,” she says,
“but then my husband didn’t
want them to help him, so it was
not worth the price.”
“There was so much
manoeuvring,” she says. “I coped
as well as I could.”
Ron Rhine, a past president
of ARTA, supported his wife
Kathleen through a long illness at
home and later in a nursing home
nearby for seven more years.
“It was hard to see her change,”
Ron’s son David says, “but he
didn’t let that deter him.”
“Mom was kind of the catalyst
in our home,” David says. “She
organized us and made things
work. She sacrificed her personal
life a lot for years and years, while
Dad, a gregarious person, was out
pursuing his career. So I think
he saw it as a small return to
take care of her in her declining
years.”
After Kathleen moved to
continuing care, Ron visited every
day, sometimes twice, helping
with meals and preparing for bed
in the evening.
When I first contacted Joanne,
we agreed that she didn’t really
qualify as a case study for my
story. Her 92-year-old partner is
still independent, and she says
they function as a team.
As we continued to talk,
though, Joanne mentioned that
she “doesn’t do her art” and
that they can no longer travel
together, nor does she travel
solo because her husband finds
it “painfully intrusive” to have
someone live with him while
she is away. Despite ongoing
losses, Joanne says she is
fortunate. “Life is rich in the
unconditional positive regard
Dan and I practice; in the deep
intellectual and emotional bonds
we maintain.”
Joanne says she has always
been puzzled by how and when
to apply the word “caregiver.” A
social worker she knows says that
some clients tell her not to use
the word; others say it is a badge
of honour. “Both my husband and
I are exhausted,” Joanne says,
“and he regrets deeply that more
and more responsibility rests on
my shoulders.”
Judy Kugel, a retired Harvard
professor whose
husband has
Parkinson’s,
writes a blog
about the joys and
challenges she
and her husband
are experiencing
(70-something.com/
the_70something_blog).
Kugel expresses Joanne’s thought
in another way:
We used to have a joke—
when one of us asked the other
to do some trivial task, the
other person would say, “What,
do I have to do everything
around here?”
Now, I do have to do
everything. If the situation
were reversed, Peter would do
more than everything.
Anita Jenkins is a retired
editor and writer who lives
in Edmonton. She, too, finds
herself a caregiver to her
husband.
news&views AUTUMN 2020 | 37