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.  

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.” 

 Jerry did not move to the new facility-- he lost his battle with Alzheimer’s at the end of last summer.  His family and friends gathered for a final farewell and celebrated the man they knew, whose spirit was greater than any disease and whose life will not soon be forgotten.

Image courtesy Creative Commons