Last Updated: April 22, 2015
Linda W's mother fell and broke her hip in May of 2005. The once
independent 92-year-old woman, whose husband had died forty-seven
years ago, could no longer live alone.
Fifty-nine-year-old Linda, who lives 15 minutes away in Kansas
City, had just four days to shift roles from self-exiled daughter
to daily caregiver and major decision-maker. Her immediate
obligation was to find an assisted living situation for a woman who
had never asked for help from anyone for anything. Her mother's
stern attitude magnified the pressure Linda felt. Given a two-week
reprieve when her mother was placed in a nursing home for rehabilitation, Linda
contacted Jeannie Darnell at A Place for Mom, who helped her locate
an appropriate assisted living home in their area. This was the
first difficult
elder care decision Linda had to make, though it is certainly
far from being the last.
Parent-Child Role Reversal
"My mother and I never enjoyed a 'get together for coffee' type
of intimacy," Linda confides. "We were all business. So this change
in our relationship remains monumental for both of us. I don't know
what I would have done without Jeannie Darnell, who checked in with
me everyday until we found the right fit."
Even though Linda's mother tells others that she likes her new
home, she will never admit as much to her only daughter.
"My mother fell victim to the Canadian Lottery Scam a few years
ago. I had to sue her to take control of her finances," Linda
recalls. "But moving
her out of her home of forty years, that's an entirely different
level of responsibility. I wonder if I'll ever be forgiven."
The Caregiving Sweet Spot
Like many children thrust into the role of caring for elderly
parents, Linda has struggled with boundaries. She visited "too
often" during the first year, returning home most days physically
and emotionally exhausted. Her mother never established close
friendships, preferring stubborn self-sufficiency to intimacy with
acquaintances. So Linda endured the brunt of her mother's
frustrations and resentments about losing her home, independence,
and ultimately, her ability to control the direction of her own
life.
"I lived in hell for the first year because I couldn't find the
balance," Linda recalls. "I would take a memento from the house to
cheer her up, and she would be outraged because the token confirmed
she was not going home. I know I shouldn't have told her that she
was never going home but sometimes I lose patience."
Even though her mother's personality exacerbated her own
feelings of frustration, Linda understands that her own reactions
are often unfounded and unfair.
"She'll insist that she needs a new toothbrush, implying that I
am not taking care of her. So I'll go to the vanity and pull out a
brand new one, one that's even still in its wrapper. I'll want to
scream, 'Look mom, it's right here, you're new toothbrush is right
here!'" Linda says. "But I know that my mother is fading. The truth
is I need to remember she is no longer independent physically or
mentally. It's a truth I don't like to admit."
According to Seattle geriatric internist Dr. Elizabeth Kiyasu,
watching our parents lose their independence is one of the most
challenging realities we face as our parents age.
"We've witnessed our parents' decision making our whole lives,
important decisions about us, their children, and themselves,"
Kiyasu explains. "Then their decision making becomes impaired and
we end up making those decisions for them. Even if we rarely doubt
ourselves when making decisions for our own children, making
decisions while caring for elderly parents remains inherently
ambiguous.
"Eating is a perfect example. If our child isn't eating we
simply insist that they eat for nutrition alone. But our parent's
refusal
to eat a complex conversation which often pits our hope to see
them healthy again against their determination to let go.
"The best thing to do is to make decisions that totally respect
their desires. But trying to predict those desires can be really
tough."
Learning about those desires requires candid conversations about
choices to be made. The sooner those conversations occur, the more
prepared the entire family will be. "You need to gauge whether your
parents understand the consequences of the decisions they are
making, regardless if those decisions involve medication, finance,
or advanced directives," Kiyasu says. (Kiyasu prefers "advanced
directives" to "living wills" because the situation with an aging
parent is rarely as objective as a living will forecasts at the
time it is written. A living will follows a standard format that
often complicates the actual situation. Advanced directives
presents a list of guidelines for a variety of circumstances.)
Handling Decision-Making
Linda's management of her mother's finances comes more easily.
When the court awarded her custody of her mother's estate after the
lottery scam incident, Linda assumed she'd inherited the job for
the rest of her mother's life.
"Linda's financial clarity alleviates one significant source of
stress for the child-caregiver," Kiyasu says. "She also established
Power of Attorney for her mother, another valuable change in their
legal relationship that I advocate for others in similar
situations."
Kiyasu stresses that there are individual nuances in every
parent-child relationship, however: "I recently heard about a
patient whose family kept their father's dialysis appointments even
though he had expressed a preference to eliminate them. It turns
out the children, who all worked, viewed the appointments as a form
of daycare for their father, while also improving and prolonging
his life.
"These decisions are never clear-cut for the children. We feel
guilty when we admit exhaustion, or that the demands of our
parents' care fall beyond our skill set. People don't realize they
can place their parent in a nursing home for a limited stay, or
that assisted living homes come in many different forms and
styles."
And because Linda was never close to her mother, her situation
has been especially challenging. "She can't rely upon a foundation
of intimacy with her mother," Kiyasu observes. "[And] now she is
propelled into a very intimate situation, essentially deciding the
course of her mother's life, without any prior directives."
Linda understands and accepts this burden. She perseveres,
visits her mother often and tries to maintain a positive outlook.
She likes having dinner with her mother on Sundays, because they
sit with a group of other women, women whose company she has come
to enjoy.
"I don't always know what to say to my own mother, because she
can be so uncooperative, so talking with these other women is a
nice break for me, as is hearing them say what a wonderful daughter
I am," Linda says. "To see my mother sitting there silently-when
she used to love taking cruises, traveling abroad, and
dancing-deeply saddens me."
Caring for elderly parents is never easy, though she knows that
it must be done. She reminds her mother to lock the door after she
leaves, to which she inevitably receives an ironic "thanks
mom."
Linda, whose lone brother moved away decades ago and rarely
visits, understands she is her mother's sole advocate. She works
hard to balance her own needs with her mother's. She's also come to
understand that the logical argument doesn't always succeed.
"My mother sits in a wheelchair all day because she refuses to
do physical therapy. The doctors tell her that with therapy she
would be able to walk again but she just wants to get up and walk
immediately or not walk at all. But I've stopped trying to convince
her. There's only so much I can do," admits Linda.
Linda continues to confront her challenges and to advise others
how to do so. She remains indebted to Jeannie Darnell at A Place
For Mom for guiding her through the initial relocation process, a
situation she found overwhelming at first. She also appreciates any
kind words of support, like those she receives from her maternal
aunt. Though often frustrated with her predicament, she says her
attitude is improving steadily as she becomes accustomed to her
role.
"I now know my mother is going to have good and bad days. I also
know my mother doesn't want to be mothered. Who would?" laughs
Linda. "And I believe my aunt when she tells me what a good job I
am doing."
"It's been very hard to make all of the decisions for another
adult," Linda concludes with a sigh, "But I am getting it done. And
getting it done is the right thing to do."
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