SILVER SPRING, Md. — This is a love story multiplied by 34 million.
It is the story of all those family caregivers who put their own needs on hold
to care for a parent, grandparent or spouse — caregivers such as Tobi Suarez
of Silver Spring, who is watching her husband’s slow descent into Alzheimer’s
disease.
“I don’t know who this man is, but I know that I love him dearly,” she
whispers.
Tobi is one of more than 34 million unpaid caregivers who provide care to
someone age 18 and older, according to the CDC.
Tobi’s husband, Ralph Suarez, is in some ways familiar; in others, totally
different. The smile is the same, but the memory loss and confusion of
Alzheimer’s is taking hold.
“I know that I can’t stop taking care of him, so we take care of each other,”
she says, adding that their life is now moment to moment as they shuttle from
doctor to doctor, and she tries her best to find a job that will let her
balance work and home obligations.
It wasn’t supposed to happen this way. Ralph Suarez still has a youthful
twinkle in his eyes and an easy grin. His wife is familiar with sharing
everything with him, but these days she is turning to others for support as
she struggles with the biggest challenge of her life.
Tobi and Ralph Suarez. (WTOP/Paula Wolfson)
Almost half the family caregivers in the U.S. are helping a loved one who has
Alzheimer’s or dementia. George Vradenburg, head of the advocacy group UsAgainstAlzheimer’s, says,
“You do it not out of a sense of self-sacrifice; you do it out of a sense of
love.”
Vradenburg says caregiving puts an enormous burden on a person. Studies have shown caregivers are less likely to tend to
their own health, and more likely to suffer depression and anxiety.
The typical caregiver, according to government statistics, is a middle-aged woman with some
college experience who is helping her mother — a woman such as Diane Johnson,
of Bethesda.
“A caregiver can’t take care of anybody if they don’t take care of
themselves,” says Johnson, whose mother has dementia.
Johnson says she hit rock bottom about three years ago.
“I would put my head down on my desk and just start crying. … I didn’t know
what to do.”
A friend handed her a phone number and urged her to call Sister Kathy Weber,
the coordinator for the Caregiver Resource Center at Holy Cross Health. In a
room at the Center — a few blocks from Holy Cross Hospital, in Silver Spring
— Johnson found the support she needed.
“What she and the support group has done for me was to save my life,” says
Johnson.
They gave her a place to unwind, to share her dilemma, to laugh and to cry.
It is the oldest and largest caregiver support program in the area, with seven
separate groups meeting each week and a demand for more. Weber — known to
the caregivers simply as “Sister Kathy” — says the goal is to give caregivers
a better life, adding that they have to take care of themselves in order to
take better care of their loved ones.
Sit in a room with the caregivers during a session and the stories come thick
and fast. There are knowing looks, shared tears, even a giggle or two.
Olivia Gray, of Riverdale Park, Maryland, talks about her spouse, Karen, who
is battling a brain disorder marked by forgetfulness, loss of balance and
disorientation.
“I didn’t know how much I was grieving,” she admits, noting that the group has
taught her how to deal with loss and accept the situation.
Suzanne Stevenson, of Silver Spring, seamlessly picks up the train of thought,
saying she finds comfort in the group. All agree she faces the hardest
struggle — her husband has Alzheimer’s; her disabled daughter who needs
constant care; and her mother is frail.
The caregivers in the support group interact like old friends, or perhaps
soldiers who are comrades in arms. To Tobi Suarez, the closeness fills a
growing void: “Being in this group with all of this support and friendship and
love and togetherness has helped me to understand something I will never
really understand,” she says.
When their time together ends, Suarez hugs the other caregivers and walks to
the door. Her husband is sitting outside, smiling and just a bit puzzled.
She gently strokes the side of his face and they leave — as always —
together.
Follow @WTOP on Twitter and WTOP on Facebook.
