Coping with Guilt over an Elder Care Decision
Last Updated: April 4, 2013
"When I first asked my mother to move her answer was a definite
'No!'" Lynn D. remembers. "To her leaving her home meant abandoning
her life, including the memory of her time with my father. Even
though I believe the change was absolutely for the best, I couldn't
force her to leave that memory. After all, it's been fifteen years
since my father died and I still miss him everyday. How could I do
that to her?
"Plus, my mother's mind is starting to fail her. Would moving
her into a new situation mean that she would lose all reminders of
my father? Was being this cruel a risk I was willing to take? I
even wrestled with whether I had my mother's best interest in mind
sometimes. I experienced constant confusion."
Lynn made the elder care decision to relocate her mother into
senior housing after an incident at the hospital.
"My mother had
fallen and broken her hip. She was sitting up in her bed when
she made a fist and pulled her hand back suddenly, her target the
unsuspecting medical aide who had called her 'honey.' 'Mother!' I
said firmly. She struck me instead.
"Stop!" Lynn recalls yelling, treating her mother more like
child than parent. "Just stop, mother. Now!"
Lynn held her mother's fist within her hand, uncertain if she
should let go.
"At this point," says Lynn, "my emotions felt unbearable. My
mother reacted physically to her frustrations with her situation,
her helplessness, her vulnerability. Ultimately, as my mother's
only child, I am going to own the brunt of her anger when her world
turns upside down. It is a role I'm used to but one that never
abates."
Lynn's mother is strong-willed and independent. But Lynn has
come to realize that her mother needs to be moved so that she can
receive better care, so she is
moving her from New York to Maine, where her mother will live
next door and receive full-time professional home health care. Lynn
knows that
relocating her mother from her home of fifty years is the right
thing to do, but it doesn't alleviate her feelings of remorse.
Every aspect of handling our aging parents' futures can provoke
tremendous ambivalence. We are often in denial about their
increased vulnerability as well as their reduced decision-making
abilities. We, as children, are suddenly placed in the role of
caring for our elderly parents, who for many until only
recently wereour caregivers. This exchange of roles not only
intensifies our parents' feelings of helplessness but also our own
confusion and guilt.
Marjorie W. feels that guilt everyday. A self-proclaimed
perfectionist who does not count patience among her traits, the
University of Washington medical researcher never experienced a
sense of calm when caring for her mother. Today, Marjorie looks
after her father in the later stages of his life, an experience she
enjoys.
"Dealing with my mother's
dementia, which came on so quickly, challenged every fiber of
who I am," Marjorie recalls. "My mother was a very sharp woman who
made me promise, after having dinner with a demented family member,
that I would never allow her to become like that. But I had no idea
how to deal with this demand once the dementia actually
started.
"Each time I would leave my mom, I was determined to be more
patient the next time I saw her. Then I would fall back into
frustration within minutes of seeing her again. This pattern would
repeat itself throughout my visits.
"One positive result occurred, however-after experiencing all of
the feelings of guilt with my mother's situation, I was clear
placing my father in an assisted-living situation was the right
thing to do. Because I had bound myself in guilt with my mother,
the questions surrounding my father's relocation were mostly
answered."
Marjorie's father first moved to an independent living
retirement community after his wife passed away. Once he sustained
multiple bone fractures in a fall, he moved into the adjacent nursing home.
"With my mother I felt like I was always failing, a concept that
is, frankly, very foreign to me in my professional and personal
worlds. I remember once, early on, I glanced over at her while I
was cooking for her and noticed that she appeared really lost. I
asked her what was wrong and she said, 'I don't have a role
anymore.'
"I said, 'of course you do, you're my mother.' But her comment
really stung."
Putting anyone into a new environment can be an uncomfortable
and even distressing experience. Suddenly, while at their most
vulnerable, we "ask" our parents to form new acquaintances, trust
new professional caregivers, navigate new schedules, and acclimate
to new environments. These demands will challenge them acutely,
while we, as children thrust into primary decision-making roles,
can only hope they'll make the best of the new situation.
According to Dr. Stephan Quentzel, Medical Director for
Psychiatry at the Institute for Urban Family Health in New York
City, Marjorie's and Lynn's feelings are typical of caregivers who
are faced with relocating their parents.
"There are plenty of factors that go into feeling guilty,"
Quentzel explains. "Emotions range from feeling inadequate to
feeling overly responsible.
"Most significantly, we want our parents to remain decision
makers and to be omniscient, to regain the sense of normalcy. We're
upset when we have to take over their roles. We feel guilty about
the role reversal. We assume moving them into assisted living
declares loudly and clearly that we can't handle taking care of
them.
"One way to address this situation is to anticipate it," he
suggests. "Enter into it with emotional health, whether as a result
of psychotherapy or some other methodology. Deal with issues before
they encumber our ability to deal with our parents. The better our
perspective, the better the outcome. Visiting assisted living
facilities with your parents early is one definite method to
keep them in the loop."
The "could-a, would-a, should-a" moments further add to our
guilty feelings, creating an emotional vicious cycle. We find
ourselves rethinking our elder care decision, replaying
conversations, wondering if we are doing the right thing. This
second-guessing can turn the already finite time we have to spend
with our parents into even more stressful and anxious
experiences.
"I constantly thought I should be with my mother," Marjorie
remembers. "Returning to work after an extended visit with her felt
like when I returned to my research after having a baby. My focus
was shot, I was unsatisfied on both the work and the caregiver
fronts."
"In our society," observes Quentzel, "we are used to making
informed decisions about what we buy, where we live, etc. Medicine
doesn't always provide perfect answers, plus we are asked to make
critical arrangements about someone other than ourselves."
Quentzel believes that this issue can also be anticipated. "Make
decisions with your parents while they are still at a place to make
such decisions. A comprehensive Living Will and Health Care Proxy
can ease the approaching situation for everyone. Proper health
insurance and financial preparation also alleviates areas of common
conflict."
When the topic is relocation into an assisted living community
or nursing home, an elder care decision with enormous financial and
lifestyle consequences, the anxiety level is further heightened.
Early planning can broaden the options, answer many of the initial
questions, and clarify some of the ambiguity, but the doubt and
uncertainty of how things will turn out remain.
"The paradox, of course, is that we want nothing more than to
ease our parents' pain and suffering, even to sacrifice our comfort
temporarily to improve their overall lives," Quentzel says. "And
yet, by its very nature, the desired outcome remains uncertain.
"Still, focusing on the small victories helps alleviate our
guilt. Small victories include excellent palliative care, creating
meaningful activities, even keeping our parents together for as
long as possible. Making an informed decision about assisted living
is a potentially huge step towards this goal."
"I discuss most of my life with my father," reflects Marjorie,
enlightened with the wisdom that comes from having gone through
this process once before. "I am much more patient with my father,
who is less complex psychologically than my mom. I am also
determined not to repeat the mistakes with him that I believe I
made with her."
"Empowering our parents is a priceless opportunity," Quentzel
agrees. "They remain keepers of the family, full of family history
and cultural knowledge. We craft their
legacy and add a bit of eternity when we communicate. They
appreciate the longevity of their family and their fear (and our
guilt) of being supplanted diminishes."
Moving our parents is never easy. We are faced with an elder
care decision that challenges our ideals of the parent-child
relationship, and the often narrow window in which to make these
decisions usually forces us to make momentous choices without
having every resource available to us. But we do the best we can
for them with what we have, and hopefully remember that our parents
once did the same for us.
"I'm told I am a very empathetic person," says Lynn, releasing a
long sigh. "Even so, I often block the most difficult times with my
mother. I try to maintain perspective about her condition and that
my moving her conveys her best interest at heart. Still, it is
never easy. In fact, I'd say it is extremely hard. But I know it is
for the best."
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