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July 16, 2007
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Before she disappeared
By Diana Bell / Journal staff writer
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Frank Fuerst took it upon himself to provide a resource that speaks about Alzheimer’s disease from the caregiver’s
perspective. |
MARTINSBURG — After devouring nearly 100 books on Alzheimer’s
disease during the 17 years he cared for his wife, Frank Fuerst set about writing one from the caregiver’s point of
view.
His book, “Alzheimer’s Care with Dignity” was published in May. The Warrenton, Va., resident
will speak about his experience and sign books at noon Tuesday at the Martinsburg-Berkeley County Public Library.
During
the time he spent caring for his wife, June, Fuerst didn’t even think about writing a book. He just started keeping
track of things, her behavior, what worked and what didn’t in her care, negative emotions, etc. “I took very meticulous
notes,” he says during a recent phone interview.
Fuerst also started reading books, buying a few. He estimates
that he probably read about 90 dealing with Alzheimer’s. “I had exhausted every source that there was,”
he says.
Most of the books were written by doctors, but “there was no one addressing the needs of a caregiver,”
Fuerst says. That is when he first started thinking about providing that resource.
At about the age of 50, Fuerst’s
wife was diagnosed with early-onset Alzheimer’s. The couple was married for 44 years at the time of her death in 2000.
“We
knew something was wrong,” he says about the time before the diagnosis. “I was very confused at the time and was
depressed,” Fuerst says. “I had a lot of emotions running through me.”
Before June’s diagnosis,
Fuerst says there were indications of “inexplicable behavior.”
He recalls one time when he asked June to
borrow her car for an important meeting. As he was getting ready inside the house, he heard the car motor running and saw
her pulling out of the garage. Fuerst says he ran out in his bare feet in the snow reminding her that he had asked to borrow
the car. “She looked at me very strangely,” he says.
Incidents like that at the time were “a rarity,”
Fuerst adds.
Then he noticed more obvious signs, like short-term memory loss. “She’d ask the same question
over and over and over again,” Fuerst says. While family tried to be patient with her, he says others could be rude
and teasing.
“Her judgment began to almost disappear,” Fuerst adds. For instance, she bought a very inexpensive
set of drinking glasses for a close friend’s daughter’s wedding. “That was not in her normal behavior,”
he says.
The third indication was a slowdown in physical activity. “She was always very active physically,”
Fuerst says. “She loved to take Jazzercise.” But the disease made her unable to follow the moves, he adds.
All
those things put together pointed to a problem.
“My children were tremendous catalysts,” he says.
Both
of their children became involved in their mother’s health care. “We all sat down together,” Fuerst says.
Their son and his wife contacted a neuropsychiatrist. “He was smart,” Fuerst says of the doctor. “He knew
not to confuse it with depression or menopause and he contacted other experts.”
June was observed by at least
three doctors, Fuerst says. And it was a process of elimination, ruling out physical and other mental problems. “They
finally called all the family in,” he says.
That was when June received her diagnosis.
“Back in
those days we hadn’t the faintest idea,” Fuerst says. Family members didn’t want to get into a big discussion
right then, but after that is when the process really began.
There was no way to confirm 100 percent that that’s
what she had, so June and the family got involved with the National Institutes of Health. “Because she was so young
and in perfect physical condition everyone wanted her,” Fuerst says.
She participated in research and drug testing
during about 14 years with the NIH.
Fuerst says he realized during the time he spent caring for his wife that he needed
to take care of himself first, dealing with negative emotions and feelings of inadequacy. “I couldn’t help her
until I got myself under control,” he says.
What really helped him through those difficult 17 years was the help
of respite care workers, Fuerst adds, calling them “one of the cornerstones of my survival.”
“I couldn’t
have done it without help,” he says.
Fuerst started off using respite very slowly. He tried to get live-in help
at first, mostly to keep June company when he couldn’t be there.
Once he took early retirement, he was able
to enjoy the companionship phase of the illness, where he spent time with his wife doing various activities.
Fuerst
first began to use day care as a way for him to get out of the house to do things like grocery shopping. And it gave June
a chance at social interaction. “It was good for both of us,” he says.
As her illness progressed, he used
day care about five hours a day, five days a week. But as Fuerst became more confident in his own abilities, he dropped off
her respite care. “I enjoyed being with her,” he says.
As her illness progressed even further, he began
to use overnight care. He desperately wanted to go to a family reunion out of town, and with overnight care he was able to
attend the function. Toward the end of her life, Fuerst was using overnight respite an average of five days a month.
“A
vast majority of caregivers would prefer to keep their family member at home as long as possible,” he says.
With
his book, Fuerst hopes to provide advice on how they can do that.
“My objectives would be to figure out a way
to improve the quality of life of someone who’s ill,” he says. “Doing whatever you can to help that person
and to help caregivers.”
Keys to dealing with a situation like his own are overcoming negative emotions and reconnecting
with your spirituality, he says.
In his book, he tries to provide answers to practical questions. “What I’m
really trying to do ... I want them to gain enough confidence in themselves.”
He wants to let people know that
they have the ability to take care of their loved one. It took him a long time before he became confident in his ability,
probably about five or six years before his wife’s death. “Those years should have been the hardest, and yet they
were the easiest,” Fuerst says.
“If my book could do that for other caregivers I would be totally satisfied,”
he adds.
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August 8, 2007
A death in the family, but without a funeral
By: George Rowand / Fauquier Times-Democrat
Anyone who has had a loved
one succumb to Alzheimer's disease understands that while the disease debilitates one, it affects many. Some have compared
it to having a death in the family, but without a funeral. Local resident Frank Fuerst understand all that because his wife
acquired the disease at the age of 40, and he was her caregiver.
"My wife had Alzheimer's for 17 years, and I'm really
the first person anybody knows about that cared for someone at home for that long," Fuerst said.
Now he's written a book: "Alzheimer's Care with Dignity."
"I
wrote what I knew about, which was, 'How do you get through something like that?'" he explained. "I read over 90 books about
Alzheimer's, but it was like looking for a needle in a haystack. When they would get to the point where they didn't have anything
else to say, they said, 'Put them in the nursing home.'"
No nursing home
Fuerst said that in the beginning,
he didn't know what was going on.
"I think it started when she was about
40, which is pretty young for Alzheimer's. She started doing some things that were out of character for her, and then our
children started noticing. She would ask questions over and over again, the same question. She would go to 7-Eleven for a
loaf of bread, and later, she would go back to 7-Eleven for a loaf of bread.
"Later," he continued, "she began to have physical coordination problems, and we had to get her to stop driving.
I called up our children and said, 'You've got to help,' because I didn't know what to do. My son said, 'I'll find a doctor
who can help, and he found one that was smart enough to tell the difference between Alzheimer's, depression and menopause,
and he got two other doctors involved."
The loss of control became apparent to his wife.
"I think
she was frightened," he said. "But later, she said a couple of times, 'You know, I think my brain is short-circuiting.' "
Fuerst had spent a career in marketing and education with IBM, and when his wife
got the disease, he took an early retirement and cared for her at home.
"I
put deadbolts on all the doors and windows to keep her in," he said.
Fuerst
said that they volunteered his wife for all the latest drugs and other therapies as they came along.
"She was one of their stars," he said. "She did everything... drug studies, everything, and finally,
we got worn out taking her into the city for the work."
Fuerst said that,
in the interest of science, they got his wife's mother involved.
"And
she's 92 and still living, so it was a multi-generational study."
Keep ahead
"I felt like we were always one step behind where
she was," Fuerst said. "I kept a daily journal and wrote in it everything that was going on.
"The book is designed to tell caregivers what to do at every stage," he continued. "It explains how
to handle the legal and financial concerns, how to handle the medical concerns, including such things as how to get them to
go to the dentist. It tell some of the products that worked for her and others that didn't, and it covers the day-to-day living
activities like bathing, dressing, eating and all the other activities that become challenges."
The long process left Fuerst philosophical.
"I
don't grieve for my wife's death," he said. "Grieve for the fact that she never had a chance to pass on her wisdom to the
grandkids.”
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‘Care With Dignity,’ Book Says
A long-time McLean resident writes a guide through challenges of Alzheimer’s disease.
By Matthew Swift, The Connection
Tuesday, April 22, 2008
For 17 years Frank Fuerst cared for his wife June who was diagnosed with Alzheimer’s disease. During this time Fuerst
developed ideas on how to care for his wife, take care of himself, and let his wife retain her dignity in a difficult situation.
Fuerst took his first-hand knowledge and experience and wrote "Alzheimer’s Care with Dignity," a guide for other people
in a similar situation.
Fuerst, who currently resides in Warrenton and lived in McLean during his wife’s illness, says his book is to help
those who are caring for people with not only Alzheimer’s, but other illnesses also. He wants people to know what to
expect and what to do in a situation that is emotionally and physically draining and demanding and feels his experience will
help. "Here is what you can expect and here are the lessons I learned," said Fuerst of his book. "The book is about all the
challenges and what were the solutions that we came up with."
IN 1974, Fuerst said his wife asked him to go house hunting, something she normally loved to do, but Fuerst at the time
didn’t think anything was amiss. "It’s abnormal only in retrospect," said Fuerst who thinks this was one of the
first signs of the disease. In the following years other things such as asking for help with math in her work as a paralegal
and mentioning that she wanted to go to school to study to become a paralegal again seemed normal at the time to Fuerst. When
he told his wife she had already gone to school, she mentioned how laws might be different in the D.C. area, so he didn’t
think much of it. In 1984, Fuerst and his family noticed the first obvious signs of the disease when his wife was becoming
more forgetful. At the time Fuerst wasn’t sure what was wrong and thought maybe his wife was depressed. After visiting
with numerous doctors and specialists, his wife was diagnosed with Alzheimer’s in 1987.
Soon after Fuerst retired and began caring for his wife. During this period he read numerous books on Alzheimer’s
and found that they were definitive guides or explained how to care for someone in the latter years of the disease, assuming
that the person with the illness would be in a nursing home at that point. Fuerst, like many other people, tried out nursing
homes and did not think they were right for his wife, so he was her caregiver throughout most of her illness. On occasion
she would go to a nursing home or have a professional come in to help out, but most of the time he was there up until his
wife’s death in 2000. During this period Fuerst began taking meticulous notes on what he was doing and what his wife
was doing and began compiling his notes for a book.
"I never met a caregiver that could understand what the doctors were talking about," said Fuerst about the technical language
doctor’s use. "I invented what I call the four phases of Alzheimer’s disease." The four phases — independent,
companionship, dependent, and final years — were created to help those dealing with a similar situation understand what
to expect and what to do during the duration of the illness in a way everyday people can understand. The "independent phase"
is when a person can still do things independently although Fuerst said he did many more chores that his wife normally took
care of. The "companionship phase" was the years Fuerst and his wife did many things together such as travelling and visiting
places. "Those are the years where we went out and had fun," said Fuerst. They travelled to Italy, the Pacific Northwest,
and ate at restaurants three times a week. The "dependent phase" is when Fuerst had to start helping with "activities of daily
living" such as bathing, feeding, and dressing. Fuerst said this phase lasted around five years with his wife. "That was the
very heavy duty kind of stuff." The last years, or "final years phase," are when his wife declined physically. During this
time his wife would have seizures and broke her hip and eventually could not climb the stairs.
Despite her decline mentally and physically, Fuerst feels that his wife was aware during most of the illness. "During the
early years she was very much aware," he said. "Later as she went through the imminent final stages, I believe that she was
still aware, but she couldn’t articulate it as much." About two years before she died, his wife seemed to snap out of
her state and began to speak and act normally for a few minutes. "I was stunned for about three days," said Fuerst.
IN THE BOOK, Fuerst addresses other issues involved with caring for someone with Alzheimer’s including emotions,
financial and legal issues, and prescription drugs. "A lot of it is a philosophy," said Fuerst on what he hopes readers will
learn. "You have to develop a philosophy on what to do for a person who is going downhill like this."
Since the book’s release, health care professionals from the Alzheimer’s Association, INOVA Fairfax Hospital,
and Georgetown University Medical School have universally praised Fuerst’s book as an excellent resource for caregivers.
"I’m just in awe of the book," said McLean resident and registered nurse Betty Yurkewitch. "He covered everything."
Fuerst continues to write and travels speaking to audiences about his book and the disease. "I tailor what I say to the
audience," he said about when he gives talks. "I won’t leave until every question is answered." Fuerst hopes his book
can be a guide for caregivers and that readers take note of one of the most important aspects of the book — letting
the person with the illness retain their dignity. "The direction I try to take … is maintaining the ability of the person
to be able to do things for as long as they possibly can," Fuerst said. "That’s how the name of my book came about …
I was able to do that for my wife."
Fuerst will be giving a talk and book signing at the Tysons Corner Border’s on April 29 at 7:30 p.m. For more information
on the book, visit www.dementiacaregiving.com.
©2008 Connection Newspapers. All Rights Reserved
7913 Westpark Dr. McLean, VA 22102 (703) 821-5050
Reprinted by permission of Connection Newspapers
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