By Judith Graham November 7,
2019
For a
dozen years, Larry Bocchiere, 68, didn’t find it especially difficult to care
for his wife, Deborah, who struggled with breathing problems. But as her illness
took a downward turn, he became overwhelmed by stress.
“I was
constantly on guard for any change in her breathing. If she moved during the
night, I’d jump up and see if something was wrong,” he said recently in a phone
conversation. “It’s the kind of alertness to threat that a combat soldier
feels. I don’t think I got a good night’s sleep for five years. I gained 150
pounds.”
As her
chronic obstructive pulmonary disease worsened and heart failure set in,
Deborah was taking 24 medications each day and rushing to the hospital every
few weeks for emergency treatments.
“Toward
the end, I couldn’t stay in the same room with her for too long because I
couldn’t stand to watch her being so sick,” Bocchiere said. His wife died in
2013.
Marriages
are often shaken to the core when one spouse becomes sick or disabled and the
other takes on new responsibilities.
“You
have to rewrite the relationship’s expectations. And the longer you’ve been
married, the harder that is to do,” said Zachary White, an associate professor
of communications at Queens University of Charlotte. With Donna Thomson, he’s
the author of “The Unexpected Journey of Caring:
The Transformation From Loved One to Caregiver.”
Compared
to adult children who care for their parents, spouses perform more tasks and
assume greater physical and financial burdens when they become caregivers, an analysis of 168 studies shows. Symptoms of
depression as well as strains on relationships are more common.
Communication
often becomes problematic, as husbands and wives feel disoriented and uncertain
about how to respond to each other. Especially early on, illness tends to
“heighten emotion and short-circuit communication,” write Barbara Kivowitz and
Roanne Weisman in their book, “Love In The Time of Chronic
Illness: How to Fight the Sickness – Not Each Other.”
Both
women were cared for by their husbands (Kivowitz suffered from chronic pain;
Weisman had a stroke). “We were gobsmacked by how much illness took over the
relationship,” Kivowitz said earlier this year in a video presentation.
Complicating
these issues is isolation. “We often hear about family members who won’t get
involved or are overly critical of the well spouse but never pitch in or
visit,” said Robert Mastrogiovanni, 72, president of the Well
Spouse Association, which offers support groups to members. “And
then there are lifelong friends who drop out of the picture.”
Most of
the time (55%), older spouses are caregiving alone as husbands or wives come to
the end of their lives, without help from their children, other family members
or friends or paid home health aides, according to research published earlier this
year.
The
risk is that marriages will be undermined by illness and essential emotional
connections lost.
“The
well spouse can go from being a partner and a lover to a nurse and a caregiver,
which is an entirely different kind of relationship,” said Mastrogiovanni, who
cared for his wife, Kathleen. She had multiple sclerosis for 50 years before
she passed away last year.
Or
spouses can become distant as they struggle with feelings of loss, fear, and,
frequently, misunderstanding and anger.
“He
wouldn’t talk to me. He would seem like he was angry at me, but I didn’t really
understand,” said Terri Corcoran, 69, whose husband Vincent had Fragile-X
associated tremor/ataxia syndrome, a neurodegenerative disorder.
It took
five years for Vincent to get a diagnosis. During that time, Corcoran said, “I
felt like I married someone I didn’t know. It was devastating. It took me a
long time to realize his brain was impaired.”
How can
older couples navigate these challenges and protect their relationships – an
essential source of comfort and support – when illness strikes? Several experts
offered suggestions:
Reset
expectations. Couples need to face what is being lost as a result of illness
and, at the same time, focus on what remains intact.
Dr.
John Rolland, an adjunct professor of psychiatry at Northwestern University’s
Feinberg School of Medicine and author of “Helping Couples and Families
Navigate Illness and Disability: An Integrated Approach,” tells of a
couple in their early 70s he’s counselling. Both were working when the wife
started having symptoms of Parkinson’s disease five years ago.
In
retirement, the couple had planned to do a lot of biking, hiking and adventure
travel. Now her mobility is limited, he’s down in the dumps and tension has
invaded the relationship.
Rolland’s
advice: Figure out what you can do together and what each of you can do
separately. He helped them see that they can share some cherished activities –
reading books together and attending the theater – and add new ones, such as
cooking. And the husband can still go biking, without worrying about making his
wife feel bad, so long as they communicate openly about respecting each other’s
needs.
Divvy
up responsibilities. Couples need to retain a sense of balance in their
relationships, to the extent possible. Often this is threatened as one spouse
becomes less able to function and the other takes on more responsibilities.
Kivowitz
has a practical suggestion: Create a list of everything that needs to be done
in your household, then divide up tasks. If there are things that neither of
you wants to do, brainstorm ways to find help.
In her
video, she describes how she and her husband Richard did this. Kivowitz signed
up for laundry, meal preparation, keeping medical records in order, researching
her condition and arranging help at home. Richard took on grocery shopping,
getting medications, dealing with insurance, paying bills, financial planning
and working to keep the household afloat. Neither wanted to do housecleaning –
a task that could be given to someone else.
Include
the ill spouse. Avoid assigning the ill spouse to a passive role of being
“cared for.” To the extent possible, set boundaries around caregiving and maintain
reciprocity in the relationship.
Rolland
tells of a woman with polycystic kidney disease whose husband helped administer
home dialysis three times a week: “They would go into a room where all the
equipment was kept, and, when dialysis was over, close the door and focus on
being a couple.”
When
Mastrogiovanni retired from an accounting job with the government, he and his
wife bought a van with a ramp and travelled all over the country. When she
could no longer feed herself, they’d still go out to restaurants where he’d
feed her by hand – something the couple’s therapist had encouraged.
When
joint activities are no longer possible, just being with someone can express
closeness and solidarity.
Although
Corcoran’s husband couldn’t talk, she’d sit with him and talk to him about what
she was feeling: “He would put his arms around me, and I would say ‘I’m doing
the best I can. I know this isn’t your fault, but it’s really hard.’ And I
always ended up feeling better.”
Expand
your network. If friends and family members don’t seem to understand what
you’re going through, find people who do. Well and ill spouses may need to find
support in different places.
Bocchiere,
who’s chairman of the Well Spouse Association, said that when a spouse is
seriously ill, “we lose our best friend, our love, our future. But your
children, friends, relatives – they don’t get it.”
The
first time he went to one of the association’s support groups and listened to
other spouses tell their stories, “I was home,” he said.
Make
meaning. “At some point,” White said, “you have to be able to make
meaning of what you’re going through as a caregiver and incorporate this into a
new sense of identity.”
For
many people, meaning revolves around the notion of “fidelity” – commitment to
their spouse, their vows and the “we” of their relationship, he said.
Corcoran
converted to Catholicism the year that her husband was diagnosed and found
solace in her faith and her church. “I kept praying that our marriage would
have meaning,” she said.
Learning
that people from her church saw her marriage as “loving” gave a deep sense of
satisfaction. Ultimately, Corcoran came to understand “this is a cross my
husband and I were carrying together.”
Kivowitz
has observed a profound shift in herself and others, from “caregiving as a set
of daily responsibilities” to caregiving as an expression of compassion.
“Measure
success,” she said, “by how well you connect, love and feel loved.”
We’re
eager to hear from readers about questions you’d like answered, problems you’ve
been having with your care and advice you need in dealing with the health care
system. Visit khn.org/columnists
to submit your requests or tips.
Judith
Graham: khn.navigatingaging@gmail.com,
@judith_graham
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