weekly assignment as a hospice volunteer was
to provide relief for Joan, who cared for her
father 24/7. For the last month, I noticed an
uneasiness between them. I wasn't alarmed since
I often saw less than pleasant interactions
between overworked family caregivers and loved
be back in one hour,” Joan said.
a problem,” I responded.
father sat in his wheelchair engulfed in a cloud
of cigarette smoke, watching the TV.
“Don’t forget my cigarettes, like
you did last week,” he said. Despite having
lung cancer, he chain-smoked, and I would be
inhaling carcinogens for the next sixty minutes—the
limit of my lungs’ endurance.
Joan didn’t return after one-and-a-half
hours, I thought traffic delayed her, or maybe
she wasn’t able to find some items. After
three hours and no Joan, I called the hospice.
under no obligation to stay,” the volunteer
manager said. “But if you wish to stay,
remained, breathed shallowly and waited for
her return. Joan arrived two hours later looking
distraught and carrying a few bags.
sure took long enough,” her father grumbled,
still fixating on the television screen. “You
got my smokes?”
In the kitchen, away from her father’s
hearing, she tearfully confessed to the most
painful decision she ever made--she wouldn't
return when she left to buy groceries. After
crossing the Golden Gate Bridge and leaving
San Francisco behind, guilt turned her around.
would return and care for an emotionally abusive
The decisions we grapple with as caregivers
involve choices between self-interest and the
interest of our loved ones. Most of the choices
aren’t difficult. Missing a movie or a
party can’t compare with taking care of
the needs of a husband with Alzheimer’s.
But often the choices are more dramatic, as
it was for Joan. She assumed the role of caregiver
for a dying father despite years of emotional
abuse, criticism, and ingratitude. She gave
up her life to care for a unappreciative and
my eight years as a hospice volunteer and twelve
years as a caregiver counselor, I watched people
struggle choosing between continuing to provide
care or stepping back. Most decisions were gut-wrenching,
pitting the caregiver’s needs with those
of a loved one.
would be easier if a simple checklist existed
of guidelines for knowing when to pull back
or leave. The “one-size-fits-all”
approach to caregiving doesn’t work, whether
the template involves something as straight-forward
as stress-reduction or as significant as when
to withdraw from a caregiving role.
You Can Ask Yourself
There are no simple answers, but below are four
questions my clients asked themselves when they
chose to remain as a family caregiver or withdraw.
Think of these questions as guideposts you can
use when deciding whether to minimize your involvement
or return to a difficult situation.
Am I Staying Because of Guilt?
Guilt is one of the most manipulative emotions
we experience and one of the most destructive.
A “wrong decision” can result in
self-inflicted punishment that can last for
years or forever. Rarely does the person who
acted from guilt experience anything positive
about the decision. The most difficult question
involving guilt is whether the present or past
love for the person can justify the sacrifices
required for caregiving.
Parts of My Identity am I Willing to Sacrifice?
Intensive or long-term caregiving involves sacrificing
a part of one’s identity. The sacrifice
can be minimal as when a loving husband gives
up unimportant outdoor activities to care for
his invalid wife. Or significant as it was for
Joan who quit a promising job and severed social
relationships to care for her father.
Can I Do to Decrease the Negative Aspects of
Caregiving? Disappointment and anger
can result when trying to lead one’s life
as if nothing changed. How often did you say,
“If only he weren’t ill I could……”.
Accepting the role of a caregiver may involve
finding new ways of meeting one’s needs.
Bird watching replaced a husband’s joy
that came from fishing with his wife. They observed
birds together in her wheelchair strolling through
the neighborhood and from her bed close to the
end of her life.
Caregiving Help Me Grow? The impetus
for growth often involves discomfort; something
endemic to the fluctuations found with illness
and the emotions it generates. Caregiving involves
balancing your needs with those of a loved one.
Few endeavors have such a great potential for
discomfort on one side, and personal growth
on the other.
About What You Should Feel
press, movies, and television often idealize
caregivers, placing them on pedestals while
ignoring their needs and frailties. Accepting
what one should feel as a caregiver often is
at odds with what one does feel. Honestly answering
the above four questions may help you with a
painful decision many caregivers face: When
is it time to pull back?