There Are No Operating Instructions for Alzheimer’s
If your dad has Alzheimer’s, you may not be as lucky as Geri Bogan
Zielinski was. A director of real estate services at Educational
Testing Service, Zielinski has a very understanding boss – as well as
a support system including her mother, brother, and 12 aunts and
uncles (her father was 1 of 13), who were able to help with her
father’s care. But even with all the support in the world, it was
exceedingly difficult for Zielinski to watch her dad, whom she
remembers as “a very strong, Irish Catholic man of the house kind of
guy,” deteriorate into someone who needed to be taken care of all the
time. “That was not where he would have pictured himself,” she says.
He died in January of this year.
Zielinski grew up in Flemington, where her father was a builder with
his own business. She says he was very athletic and enjoyed golfing
and other sports. She remembers how he used to be competitive with her
brother, always rough-housing or challenging him with “I’ll race you
to the corner.” It struck Zielinski as odd that such a healthy person
as her father would be stricken with Alzheimer’s, but of course “this
disease doesn’t work that way,” she says.
After her father retired, her parents moved to Florida, where the
earliest signs of diminished function appeared, when her father was in
his late 60s. He was working part-time for a company as a carpenter
and began having difficulty remembering what people had asked him to
do. For a while he would write notes to himself but eventually the
company had to let him go, which Zielinski says was devastating for
him.
Although her father loved Florida, her parents decided to move back to
New Jersey to a retirement village in Whiting not far from the Tom’s
River area where Zielinski lives. “I think in his heart of hearts he
knew something was wrong,” she says.
When things started to change with her dad, she says, “you didn’t
realize it at first, but in hindsight, things fall into place.” She
remembers, for example, going food shopping with her parents when they
would come to visit. “He’d put groceries back in the cart (at the
checkout) without putting them into the bag,” she says. “That’s the
brain starting to go backwards.”
The disease progressed, inexorably and brutally, over a period of 10
years until he died. “When they came back here, he drove the moving
truck,” she says, but after that, he stopped driving. “It was getting
to the point where he couldn’t remember how to get back to where he
had started.” He tried again to do part-time work but his memory
problems made it impossible.
The next problem was her mom, who was suffering from the stress and
responsibility of being her father’s primary caregiver and eventually
got sick. “It was very difficult for her,” Zielinski says. “As
compassionate as you want to be, when he repeats the same question
over and over…” She leaves the sentence hanging. “She was determined
to take care of him but because she saw it was taking a toll on her,
she realized she needed help.”
Zielinski says: “I needed to understand what my mother’s limits were
and convey them to her. I was concerned that I was going to lose two
parents rather than one.”
Both Zielinski and her brother became involved in Alzheimer’s
charities. Zielinski has been involved with the Alzheimer’s
Association’s Memory Walks for two-and-a-half years. This year she is
a team captain and co-chair of the Central Regional Walk Committee for
the event at ETS, which takes place on Sunday, October 15. The
three-mile, noncompetitive walk will include entertainment,
celebrities, food, and prizes. Registration is at 9 a.m., and the walk
will start at 10a.m. Zeilinski will be marching with her family team,
the Bogan Brigade, to help raise money to support programs and
services for the more than 350,000 New Jerseyans and their families
affected by Alzheimer’s.
No decision is easy when Alzheimer’s strikes a family, and Zielinski
says in this situation families always feel like they are walking a
thin line. “It’s a feeling of desperation,” she explains, “not knowing
the disease and what to expect, trying to do what you can, and trying
not to do the wrong thing.” In the end, she put her father in daycare
while her mother was in the hospital. Although some families choose to
keep their loved one at home, she says, that’s a tough decision too.
“Once they get incontinent, it’s not a baby, it’s an adult you’re
trying to take care of.”
The daycare ran from 8:30 a.m. to 3:30 p.m. but because Zielinski
already lives an hour from her job at ETS, she couldn’t just pop over
any time to help out. “I called my dad’s brothers and sisters and
said, `I need to go to work,’” and they all took shifts to do `dad
watch,’” especially while her mom was hospitalized. “It’s good to have
a big family,” she says, and adds that “it was fortunate to have a
boss who was accommodating and understanding.”
Although the daycare provided her mother with some respite, when her
dad was home, he would wander, and he was incontinent. “It got to the
point where he needed watching 24 hours a day,” Zielinski says,
because his rational facilities simply weren’t functioning. He might,
for example, brush his teeth with shaving cream or shave with
toothpaste.
As her father’s care got more difficult – with deleterious effects on
Zielinski’s mother – his deterioration pushed them to another decision
point: whether to move him to a nursing home. Zielinski and her
brother still felt it was ultimately their mother’s decision.
Eventually they placed him in Manchester Manor in Whiting, where he
stayed for three years. The nursing home turned out to be phenomenal,
a lucky break for the family, and Zielinski’s mother still maintains a
relationship with it.
“The nursing home was a big step,” says Zielinski. “My mother did not
want to do that but realized it wasn’t something she could handle and
continue to handle without jeopardizing her own health.”
Sadly, the saving grace was that her father didn’t know he was going
into a nursing home. “We made it sound like he was going on vacation,”
she says, “and he was thrilled.” Her mother visited every day, and
Zielinski a couple times a week.
At first, the visits were difficult for her mother, because when she
went, he cried, because he recognized her. By a year or two before he
died, Zielinski’s father couldn’t remember people, although he
remembered her mother the longest, and, she adds, “every once in a
while we would get a spark.” But mostly, he was unintelligible. With
some hesitation, she says, “It’s probably better when they don’t know
you. The more they forget, the easier it is for you in certain
respects.”
As Alzheimer’s eats away at a person’s brain, the memory goes first,
then speech, and finally the person’s organs. “Once it got that bad,”
she says, “he starting going in and out of the hospital, with
pneumonia and other problems.”
The last decision that the family had to make was to take her father
off life support. Luckily, they were all on the same page, although it
was difficult. “But knowing the kind of person he was to start out
with,” says Zielinski, “we knew this wasn’t where he wanted to end
up.”
Both Zielinski and her brother continue to be active in Alzheimer’s
fundraising. Her brother’s company, Grotto Engineering in Clark, held
a golf outing that raised $10,000. Her brother planned the event with
his boss, who also has Alzheimer’s in the family.
Zielinski says it’s key to find good support after a diagnosis of
Alzheimer’s. In the beginning, Zielinski says she got help from social
services in Ocean County. She hadn’t known about the Alzheimer’s
Association and all the services it provides, including a 24-hour
toll-free telephone helpline, education and training programs, support
groups, and respite care assistance for caregivers. The association
also supports research on the disease, and Zielinski, who now has an
uncle with Alzheimer’s, says it is “hopeful to know that in the future
they may find a cure.”
Zielinski herself has been moving toward her own future, even though
her father was not able to celebrate the changes in her life with her.
Although she had graduated from Mercer County Community College in
1969, she always wanted to get her bachelor’s degree and finally did
in 2005 through an online program with Pierce College in Philadelphia.
She earned a bachelors of science in business administration and real
estate management. She also got married again the same year and has a
30-year-old son and stepchildren who are 18 and 16.
Zielinski’s advice to people who are dealing with Alzheimer’s is to
learn as much as they can about the disease, understand what their own
limits are, and reach out to social services, including the
Alzheimer’s Association, “to find out what kind of assistance you can
get and how to best help yourself and your loved one.”
The sad thing is that there is always guilt involved, even after the
relative with Alzheimer’s has died. “You’re always asking yourself,
What could you have done better?” she says, even while realizing that
the answer is probably “nothing,” since you do everything you can
possibly do without taking a serious toll on yourself.
But when it’s all over, she says, you also feel relief at not going
back and forth to the hospital, with a patient who can’t talk, can’t
swallow, and if you’re not there, can’t tell the health professionals
what is right or wrong. “Where is the value of life, the quality of
life?” Zielinski asks, and then answers her own question. “There isn’t
any.”
Memory Walk, Sunday, October 15, 8:30 a.m., Alzheimer’s Association,
Educational Testing Service, Rosedale Road. Proceeds to benefit the
Alzheimer’s Association’s programs. No registration fee. Register
online. Walk begins at 10 a.m. For more information contact the
Alzheimer’s Association, Greater New Jersey Chapter, at 609-514-1180
or visit www.alznj.org.
