Laura & Evan: Facing Alzheimer’s as Newlyweds and New Parents
On a brisk December Saturday in 2007, Laura and Evan
celebrated their wedding surrounded by a warm gathering of family and
friends. The couple had known each other
for years, so when Jerry, the father of the groom, gave an improvised speech at
the reception, he talked about how happy he was to join these two families. He traded his cowboy boots and grey suit for
a tuxedo to mark this special occasion. Over
six feet tall, Jerry was a commanding force as he whisked Laura around the dance
floor.
Conceptions of
“family” took on a completely new dimension when, less than two years later,
Jerry was diagnosed with Alzheimer’s disease. He had been divorced from Evan’s
mother for several years, and his adult son and daughter from a previous
marriage lived several states away. The
newlyweds—both recent college graduates—Laura with degrees in speech pathology,
and Evan in construction management — were suddenly Jerry’s primary caregivers
in the midst of starting their own careers.
Evan introduced
Laura to his dad when the teenaged couple first began dating in high school.
Jerry lived outside of their central Nebraska town, on a wide-open lot that
gave him room to breathe. Laura was
intimidated at first but came to know Jerry as a kind, generous man who did
what he could to help people. She
remembered that, several years later when Evan relocated to Colorado for an
internship and Laura continued her classes, Jerry called often to make sure she
was doing okay. “I remember at one point
he would call me on a monthly basis just to say, ‘hey,’ and see if I needed anything,
even though my parents lived in town,” Laura says. “He was just a good-natured, help-out kind of
guy.”
Jerry had a long
family history of Alzheimer’s and dementia.
He started showing signs well before the diagnosis. He quit his job with the county in 2009 after
admitting to Evan that it was becoming more than he could manage. Evan’s older half-sister and half-brother
lived several states away and already had their own obligations.
Both disconcerting and practical, Jerry had been waiting
for it to happen, especially after losing his brother and mother to the
disease. He initiated the doctor
evaluation himself. At the age of 61,
Jerry was officially given the diagnosis of Early-Onset Alzheimer’s. By that time, Laura and Evan moved to Colorado
Springs to begin their careers. Their
first step began almost immediately: applying to get Jerry qualified for social
security disability. They felt lucky to
be approved in the first round, mostly due to the official diagnosis of
Alzheimer’s from a doctor.
The young couple had no idea that Jerry’s
insurance had lapsed since he quit his job.
More problematic, not only was Jerry on a fixed income, he was too young
to qualify for Medicare. He just went
without insurance for a few years. Almost overnight, Evan and Laura were in
charge of paying all of Jerry’s bills, making sure he had groceries, and regularly
checking on his wellbeing. As Jerry’s
mental state continued to deteriorate, Evan moved him to Colorado to keep an
eye on him.
At first, Jerry was
very forthcoming about his prognosis. He
did everything he could to set up a joint checking account and transfer his
financial responsibilities to Evan and Laura.
When they moved him into an age-restricted apartment in Colorado
Springs, Jerry sidled right up to the apartment manager and stated, “I have
Alzheimer’s!” He seemed willing to share
this information with everyone. He accepted a limited-account ATM card to
withdraw some cash to go dancing on weekends (which he loved) or go to coffee
in the mornings. However, knowing his
overall balance stressed him out, so the bank began sending statements only to
Evan and Laura.
Adding to their
stress was the constant uncertainty of how long Jerry’s retirement fund would
last. They hoped that it would stretch
until the time that Jerry would need to be placed in a nursing home after a
spenddown to qualify him for Medicaid. After
several tense years for Laura and Evan, Jerry He finally received early
qualification for Medicare at the age of 63 because he had been on disability
for 2 years.
“But that was a nerve-racking two years,” Laura admits. Jerry stayed in his own apartment in Colorado
for a year, and then he moved with the young couple to Kansas for a year. A new job and the opportunity to be closer to
family, friends, and familiar spaces brought them back to their hometown in Nebraska,
where they continue to reside.
Upon moving back, Laura and Evan found Jerry an
independent apartment, and then they decided to find a place with a fixed
income. They turned to the Agency on Aging,
who were a definite lifeline.
As far as advice for people thrown into similar
situations, Laura admits that she doesn’t have a lot of advice. “We made some decisions about finances based
on discussions with other relatives on how to make Jerry’s finances last….
Working with the Medicare forms and offices is lengthy and confusing and
frustrating, to be honest. The Agency on
Aging knew the age limits and state specifications.” Jerry was assigned a caseworker who followed
up with Laura and Evan to make sure the paperwork was on track and they were
aware of the deadlines.
Getting Jerry settled back in his hometown was just the
first of many major life adjustments. As
the disease progressed, so did his interaction with the local police. When he got in accidents or the neighbors
called to complain, he showed a card that included his name, the fact that he
had Alzheimer’s, and how to reach Evan and Laura.
One evening, Jerry burned popcorn in the microwave. He called Evan to let him know that he had broken
it, and Evan calmly replied that they would get him a new one in the
morning. In the middle of the night,
Jerry woke to the lingering smell of burnt popcorn and believed that there was
a fire (having forgot about the smell).
He ran up and down the building, banging on doors and yelling for
residents to get out.
Like most caregivers for dementia patients, Laura and
Evan faced increasingly longer days as they took on more and more
responsibilities for Jerry. Jerry repeatedly
called Evan, often 15-20 times a day, as Evan was trying to run his own small
business. The calls came day and night,
and the couple was never sure if what Jerry said was real or something that
Jerry believed was real. In addition,
they now had their own children—two girls under the age of 4.
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| Halloween 2011. Photo courtesy Laura Moody |
Dedicating so much time and energy toward the
destructive effects of Alzheimer’s made Laura realize that they had to mature
in very different ways than their peers, and as they became caregivers for two
toddlers and a 64-year-old Baby Boomer, Laura also felt the collective
isolation of these competing life experiences.
This transition became increasingly difficult for Jerry
as well, especially when confronting the loss of his independence. “He really
started to resent us, more specifically Evan, for making decisions for him,” Laura
explains. He questioned why they wouldn’t let him drive or have his money or
live where he wanted to live.
Finally, Jerry wound up rear-ending another car at a
stop sign. Though his car sustained all
the damage, Evan told him that his insurance company wouldn’t insure him
anymore, so he could not drive — not true, but it helped shift Jerry’s
frustration from Evan to the situation.
After Evan talked to the police five times in one month,
“It was obvious that what we had going wasn’t working anymore,” Laura notes. They moved Jerry into an assisted living, and
very quickly his resentment grew. “He
had hallucinations about people coming into his apartment, and one day he was
moving all his stuff out and he thought that his daughter was standing next to
him. But it was the nurse.” Laura admits that wrenching realization, “Was
another eye-opening moment where he had never not known who everyone
was.”
The new living arrangements did provide Laura and Evan
with some peace. Jerry’s calls dropped
dramatically to one a day, just to say “hey, how are you doing,” and then often
none. Evan made sure to call him once a day to check in.
As the family dynamics continued to change, Evan’s older
brother, Jeremey, switched jobs so he was in Iowa once a month and could spend
one weekend in Nebraska to spend time with Jerry and ease some of the stress
for Evan and Laura.
After five months, Jerry moved to the memory care wing
of his facility. Though his mental
abilities had noticeably deteriorated, physically he was in great health. Jerry repeatedly tried to move his furniture
out of his room, thinking that he was moving.
His care home really struggled with this, and Laura asked why this had
not been a problem for other residents before Jerry. “But, I’m sure most of them, we assume, were
80-year old women who don’t have the physical ability to move all their
furniture. And, 66-year-old Jerry has
all that ability to easily move
furniture,” Laura says.
A common misconception about people with Alzheimer’s is
that they just lose their memories and forgot who they are. This is true, but so much more is lost. One of the major losses for Jerry was his
ability to problem solve. “When he lost his remote,” Laura explains, “it must
mean someone took it…. No amount of logical explanation would work.”
He got so anxious about people stealing his possessions
and his money that he had three major medication changes in the course of a few
months. Finally, his new medications
created a complete personality change.
He was calmer, less anxious and not as depressed. The confusion
continued to be a constant presence, but the extreme agitation and
hallucinations seemed at bay.
Jerry enjoyed spending time with family a few times a
week. Jeremy got laid off from his job
and decided to switch careers so he could move to Nebraska and spend as much
time with his father as he could. It was
a steep learning curve as he took Jerry to doctor appointments and
shopping. Watching Jeremy experience the
myriad conundrums associated with the disease, Laura really understood just how
much she and Evan had experienced over the years.
“When we first
got started, I thought ‘I wish somebody would just give us a list of what we
should do when this happens so that people had some guidance,’ because we no
idea where to start. It was this big
huge ocean. We had no clue. But now, having been through it, I don’t know
if there is a place to start because it varies so much based on so many
different factors. It just stinks,”
Laura said.
Thankfully, there were still occcasions when Jerry’s
personality came through to interrupt the tension of reality. On one particular
evening, Jeremy brought Jerry to the house, where Evan was grilling
chicken. As the meal got started,
everyone seemed to notice that Jerry was devouring
the chicken. Evan said, “Dad, do you
like the chicken? Is it good?”
Jerry looked up from his plate and said, “Well, I’m
eating it, aren’t I?”
Stunned silence filled the room. Then, everyone erupted with laughter as
Jerry’s humor came back for that precious moment.
As the pace of Jerry’s caregiving changed in the
assisted living, Evan and Laura faced other new commitments: they built their
own house in the country, and Laura gave birth to twin boys.
Jerry began calling Evan “Jeremy,” and Evan enjoyed it
as long as he could. Eventually, Jerry couldn’t
recognize any family members, though he became skilled at giving the “knowing
look.” When the twins were born, Evan
brought Jerry to the hospital to see his only grandsons, though Evan knew that
it wouldn’t mean anything to him. But it
did mean a lot to everyone else, and they took photos of Jerry with the babies
so the boys (when they get older) could have visual evidence of their
connection to Jerry.
Jerry spent much of his time walking, even as his
cognition deteriorated. Since the
diagnoses, he walked so much he slimmed down from 300 pounds to 150. During his third year in the memory care
wing, Jerry’s new challenge was keeping his balance. He fell several times in as many months, and finally
he broke his hip.
He went to the local regional hospital for surgery and
recovery. Hospitals can be distressing
already, but when patients are also dealing with dementia, a whole new set of
challenges have to be taken into account.
Because of his Alzheimer’s, Jerry needed constant one-on-one care. The nursing staff was not equipped for this,
and they were so uncomfortable doing this kind of care that Evan, Jeremy, and
their sister (who flew in to help) took shifts at the hospital so someone was
always with Jerry until he could be placed in a skilled nursing home. Unfortunately, there were no openings in any
facilities in a 50-mile radius. He was
moved to two “homes” over a short time, including one geriatric/psychiatric
facility in Beloit, Kansas. Once his hip
healed, he returned to the memory unit.
Jerry was then labeled a “fall risk” and was required to
move to another care center. However,
there are were still no openings for skilled care and memory needs in the
county. He was on the list for a new
facility in a town 30 miles away, and his family was hopeful that he would be
able to move within a few months.
In the midst of Jerry’s slow transformation, Laura and
Evan’s two daughters and twin sons have been growing up with a limited sense of
Jerry and who he used to be. Laura notes
that they have chosen to be very honest with the kids about what was going
on. She explains that dealing with the
disease is, “Part of our life that is happening, and it definitely affects us.”
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| Image courtesy Creative Commons |
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