For the more than 40 million Americans now caring for elderly family members,
the word “stress” takes on a whole new meaning. While for most of us stress
comes in the form of work, financial, or time pressures that come and go in
waves, for family caregivers stress is unrelenting and inescapable. That’s the
picture that emerges from a survey of caregivers conducted by Caring.com in
July, 2015. According to these data, four out of ten caregivers spend more than
30 hours a week on caregiving tasks, and caregivers are shouldering a wide range
of responsibilities for aging loved ones, from shopping and cooking to bathing
and dressing. It’s an enormous job, and one that comes at a high cost, affecting
caregivers’ personal lives, emotionally, socially, and financially.
These impacts include:
1. Emotional Stress
Fear, anxiety, and guilt are a
caregiver’s constant companions, says Ann Cason, a geriatric care manager in
Portland, Oregon. “You’re spending an enormous amount of emotional energy all
the time worrying,” says Cason. And long-distance caregivers don’t have it any
easier than those who are just a quick drive away. “No matter what’s going on,
you visualize that your parent is having a hard time, and you feel guilty that
you’re not there,” Cason says. “And if you’re flying back and forth all the
time, that’s disruptive and stressful, too.” What takes the biggest, toll, Cason
says, is the feeling of not being in control. “It’s a feeling of helplessness –
anything can happen and you have to be ready.” For those providing live-in care,
the pressure of having to be on-call all the time can be overwhelming, Cason
says. “It’s claustrophobic.”
2. The Stress of Never-Enough-Time
“I never feel like I’m
able to give Mom enough time and attention,” says Liz Joyce of Hummelstown,
Pennsylvania, who cares for her 80-year-old mother. Like many other caregivers,
Liz has children (she’s a mother of four!) and feels torn between the needs of
both generations. For example, she says, “Don’t ever try to take an 80-year-old
with a walker to the grocery store while babysitting an infant. First of all,
you can't fit a stroller and a walker in the car at the same time, and second of
all, nobody's happy after about 10 minutes.” The constant juggling act leaves
her feeling like she’s always neglecting somebody or something, Liz says.
“My life came to a screeching halt when Mom moved in,” says Camilla White of
Huntsville, Alabama, who moved her mother, Lillian, into her home when dementia
and a series of falls made it unsafe for Lillian to remain in the family home. A
peek into Camilla’s daily schedule paints a daunting picture of what it takes to
juggle caregiving while holding a full-time job. “I got up at 4 a.m. to get
ready, then I had to wake mom up at 5 and help her get dressed,” Camilla says.
“I’d have breakfast on the table by 5:30, then get her in the car and take her
to the Alzheimer’s Center so I could be at work by 8 a.m. I had to pick her up
by 4:30, but I couldn’t always get there, so I’d have to ask the girls from the
Center to take her home and sit with her until I could be there.”
Camilla’s only break from caregiving was a couple of hours on Saturday
mornings, when she had an in-home caregiver come in so she could take an
exercise class. Her social life? Nonexistent. “It was a very regimented life,
and it showed. People at work would look at me and say `You’re looking rough.’
It took its toll,” Camilla says. Eventually it became clear that a better
situation had to be found, and Lillian moved into an assisted living community.
“I’m still there for her, but I can get my life back together,” Camilla
says.
3. Family Conflicts While we’d like to think parents are
always grateful for the care their adult children provide, that’s not always the
case, which can lead to conflict. For example, caregivers may become concerned
that a parent’s living situation isn’t safe, while a parent insists everything’s
fine. “Children are always worried about their parents’ safety and the parents
are always worried about preserving their independence,” says Cason. The
resulting tug-of-war isn’t always pleasant.
Even more commonly, sibling relationships become strained by caregiving,
particularly over differing perspectives on what parents need. “If the siblings
aren’t involved, they think that if mom or dad is in a senior living facility,
then there’s nothing to do,” says Janet Gruber of Florida, who cares for her
89-year-old father, Delbert. “It’s an emotional roller coaster for the family,
especially if the siblings aren’t in accordance or aren’t helping at the same
rate.”
4. Financial Stress Finances are a leading cause of stress
for Americans today, and that stress is multiplied for caregivers. Half of
respondents to this year’s survey reported spending more than $5,000 on
caregiving expenses in the past year. For a significant number of families,
caregiving expenses run sky high. Almost 10 percent of the caregivers surveyed
were spending more than $50,000 a year to care for a loved one, while another 12
percent were spending between $20,000 and $50,000. Over time, many families
exhaust their resources. “Financially we’re about at rock bottom right now,”
says Florida retiree Janet Gruber, 67. “I may have to quit work and bring Dad
home, but then I worry about what happens to Dad if something happens to me and
my husband.”
5. Health issues
All this stress can put an enormous strain on caregivers’ health. Many
Caring.com survey respondents report experiencing medical problems that may be
exacerbated by stress, including high blood pressure, depression, arthritis, and
other types of chronic pain. Almost 40 percent of those surveyed reported
suffering from sleep problems. And many feel that the stress of caring an
elderly parent, spouse or other loved one is causing them to age faster
themselves.
6. Living Arrangements Play a Role in Caregiver Stress
Whether an aging parent lives with an adult child, independently, or in a senior
living community plays a significant role in the amount of physical and
emotional stress caregivers experience, Caring.com’s survey found. In the15
percent of families surveyed in which the parent continues to live in their own
home, 38 percent of caregivers worried about the safety and health of their
loved ones, and 27 percent were concerned about the burden of supporting the
parent’s independence on other family members. Only a quarter of these seniors
were able to live without some form of in-home care, often at significant cost
to the family. In terms of satisfaction, only 24 percent of families were happy
with this situation, while a third were dissatisfied.
More than 60 percent of the caregivers surveyed had a parent living with
them, and in these families stresses were particularly high. Only 23 percent of
those caring for an elderly parent in the home were satisfied with their
situation, while 44 percent were unhappy. Perhaps not surprisingly, caregivers
whose loved ones lived in a senior living community felt most at ease,
particularly because they were saved from the constant worry that their parent
was lonely or in danger.
Liz Joyce is still haunted by the memory of how her mother suffered a stroke
while living by herself 25 miles away. “It was a nightmare realizing that
something was amiss and racing out to her apartment to find her in the middle of
a stroke, and it was terrifying for her, too,” Joyce says. “I worry SO much less
about falls, about people taking advantage of her (or worse), and about her
social opportunities.”
If there’s one constant that caregivers can count on as their loved ones age,
it’s change, as caregivers are called on over and over to meet their parents’
evolving needs. And overcoming those ever-increasing challenges takes a high
toll in stress, fatigue, and personal sacrifice, as evidenced by Caring.com’s 2015 survey
results. Today’s family caregivers bring enormous dedication and creativity
to the job of helping their loved ones age safely and in good health, but they
need help. The hope is that as the number of Americans caring for an elderly
loved one rises, the resources available to support those caregivers grow, too.
