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  • Writer's pictureDonna Marie Vuilleumier

When It's All So New

As Dixie’s retirement papers were filed, she and Greg began planning in more detail for the extra time they would soon have together. Plans to travel around the country to visit family and friends who were now spread out, and the available time for them to join the town summer band had begun to be made when Greg retired nearly two years earlier. Now the calendar was being filled in for road trips, trains and flight over the next few years. The summer concerts rehearsal and performance schedule was posted on the refrigerator. They had always wanted to take a cooking class together but never seemed to have time for it. Now this too was a plan for next winter.

            With almost two weeks left at the insurance agency, Dixie left one evening for the very familiar commute home. Greg had dinner made so that they would eat shortly after 6pm; the same routine they had since he had retired. 6:15, 6:30, no Dixie. She always silenced her phone while driving so Greg did not try to call. Instead, he tried to remember if she said she had errands or plans with friends after work, but nothing came to mind. 6:45, still no Dixie. Finally, a distraught Dixie pulled into the driveway just before 7pm. Tearfully she explained to Greg that she had gotten lost on the way home. She was driving her everyday commute and suddenly she did not know where she was, or how to get home. The area looked familiar as she drove around trying to find her way but the more she drove instead took her back to her office. This second commute home was successful.

            Greg thought about the recent changes he had seen in his wife: more and more trouble with word finding, occasionally repeating comments or memories she had said only a few minutes prior, and being disorganized in ways that were out of character for her. He had dismissed these as being distracted by her upcoming retirement, but getting lost on a commute she had taken for almost two full decades was more than a distraction. Over the next few days, he reached out to her friends, co-workers, and her boss to see if they had seen changes in her. Each of them had seen similar changes and had the same thoughts about retirement as excitement and anxiety. All were shocked by her experience of becoming lost on the way home.

            Greg and Dixie quickly made an appointment with her PCP, and soon after met with a neurologist for cognitive tests and functional assessments. Dixie was diagnosed as being in the early stages of dementia, probably Alzheimer’s. Hearing the doctor’s words immediately reminded Greg of the previous winter storm when a large tree limb had fallen across his parked car and shattered the windshield into a pattern of cracks and chips and long branch lines. What had been solid and trustworthy was suddenly shattered—his windshield, and now their future. All of their hopes, plans and expectations were cracked, broken, shattered. They would not be life partners as they had been. He would be a care partner, and someday a care giver and Dixie a care receiver.

            They found local supports through her doctors, their pastor, and a friend whose mother had been diagnosed a few years earlier. They knew of people, of families, impacted by dementia but it had not yet been through close relationships. They knew they had so much to learn. Together they created a plan, using this early time to plan and prepare as best they could for what was expected ahead of them.

            Counseling was the first step as they grieved the loss of what they had worked for, dreamed of, and the anger they felt. Greg was angry at God for allowing this to happen, angry at himself for not seeing or acting sooner. Dixie was angry at her mind and body for failing her in this way. Each felt mocked by the plans they had been making, although those plans soon became a saving grace. While what had been anticipated with joy and excitement would not be fully what they had dreamed, it was also not as suddenly ripped away as they feared.

            The mantra they soon learned for this time was they together they were care partners. Dixie was encouraged to do what she could do herself, as long as she could, while Greg had a bird’s-eye view to step in when needed and step back when not. The counseling was an important help as they learned the steps of this new dance as they together moved with the changing rhythm and tempo of their lives.

            On the advice of their counselor and encouragement from their support group, they kept their retirement plans and made some changes as needed. Dixie’s clarinet not only had a place in the band with Greg’s saxophone, playing an instrument helped to support her memory and thinking skills. In this early stage, Dixie’s delight and ability in playing were essentially unchanged, unless she was tired so that her concentration and attention were off. They began to prepare for the future when her music as a part of the band would be stilled, yet playing at home was a longer-term happiness.

            They enjoyed the cooking class and soon signed up for another as a part of making the most of this time together. Perhaps a third one may also happen.

            The travel plans were the hardest adjustment as they let go of the plans for long distance trips to unfamiliar places. Instead, they downsized to shorter travels with only direct flights or easy road trips, a less active itinerary and with more flexibility overall. Some of the plans to visit became having friends and family visit them.

            Knowing that this early stage gave them time—time to make the most of now and time to prepare—they focused as best as possible on ‘could’ more than ‘could not.’ Sometimes on a stretch of good days it seemed as though dementia was not a part of their lives at all, but then it suddenly intruded in moments, in days, of confusion or mood swings when Dixie was detached, lost or frustrated. Greg, as a care partner, watched for these. He joined a caregivers support group to help him as his vigilance could be exhausting. He shared with this close circle that although there were still so many good days, living at “the starting line and waiting for the race to begin,” was emotionally tiring.

            As much as possible they kept the same daily routine for meals and personal care. Late morning they played their instruments, sometimes solo for each other, sometimes as a duet. Weather permitting, they walked a loop trail at a nearby park. They started doing small puzzles together. They remained active in their church choir and regularly attended worship. Dixie did not renew her term on the Trustees as that work required more than she could now comfortably do. Greg stepped down from the Lions Club as he wanted to be with Dixie in the evenings.

            A large wipe-off calendar helped track to-do lists, visitors, appointments and medication times. Each morning Greg would lay out two outfits for Dixie to choose which to wear. ‘This One or That One,’ soon was not only about what to wear, but for meal choices, activities, and timing. Dixie had always preferred to dress casually and that was helpful now. Greg bought a shower chair for Dixie to become used to having before she needed it and Greg’s assistance.

            Time completely changed for them. Used to being clock watchers having a full go-go-go schedule, time shifted not only by their retirements and fewer commitments, but by Dixie’s day. The day’s plan might go as hoped for, yet there was always the possibility of a change if she was tired or having an off day.

            They met with a financial planner and an elder attorney to make decisions for both of their futures. They set up their advanced directives for end-of-life, their memorial services and burial plans. As they began this process Greg had thought it be focused on Dixie, but he quickly realized he was planning for the possibility that he would need care that she could not provide, or he may pass away first.

            A project that they both enjoyed was writing Dixie’s life story. They had been together for decades, so the memories flowed. Dixie earliest memories were some of her favorites to tell. Telling one often prompted another. They wrote about not only the joys, successes and accomplishments, but also about times, of struggle, grief, pain and loss. Greg created a list of Dixie’s favorite things, as well as her least favorites and her pet peeves. Whoever would join him as a caregiver in the future would have the opportunity to know Dixie the person, not just Dixie the dementia patient.

            They began to call these early years of the dementia journey ‘three time zones.’ They lived in the present moment with more meaning and clarity, yet they also looked into the past to plan for the future.

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