My sister, Elizabeth, arrived on the shuttle bus from San Francisco Airport (SFO) in early February. Her trip from Wisconsin had been planned as a “sister holiday,” a kind of staycation in California away from the dull, grey of the midwestern winter. But during her visit she would attempt to rescue me from myself. I’d begun a downward spiral from which I would not emerge for over a year. I was angry and depressed.
Where did my support system go?
Maddie and Trent had just moved into a place of their own. Lincoln was 10 months old and crawling around. He would be walking soon. The tiny, two-story ADU no longer met their needs. And I couldn’t conceive of switching houses with them as had been our original plan. Robert would have been bewildered by the change. He would have attempted to enter the main house at all hours of the day and night. He’d never understand why he wasn’t allowed to do so.
In the ADU we would never have any physical separation from each other. Our house was small. It was already hard for me to be in the same 1,080-square-foot space with Robert for hours on end. I couldn’t fathom ever having a moment of private contemplation in the ADU. I’d never enjoy any solitary puttering. Solitary puttering is the thirst-quenching elixir of the introvert’s soul. I would die.
Hardly a vacation
I picked up Elizabeth at the airport shuttle drop-off and made haste to return home before Robert got into any trouble. With the kids moved out, Elizabeth would stay in the ADU. The unit was quiet and well-appointed. I’d begun the process of outfitting it as a furnished rental but hadn’t yet listed it.
Robert was irritating to be around at this stage. He talked almost incessantly but didn’t connect with anyone around him. He would interrupt a conversation or a television show to tell a joke he’d told dozens of times before. Robert lived entirely in the world in his head. At any given moment we might find him chuckling at a story only he was privy to.
Worsening behavior
Elizabeth and I are not patient people. I could see her grow weary, and annoyed with Robert’s constant interrupts. For example, during an episode of Grey’s Anatomy, he laughed and waved for our attention. I paused the playback as I had done several times before. Elizabeth directed her gaze at Robert and said, “Can we watch the show now?” He stared at her blankly with his expressionless, blue eyes, paused for a moment, and then resumed his private reverie.
With the kids gone, I was rudderless. My lively, purposeful life of helping care for Lincoln was gone. The baby bouncer had been removed, and quilts laid down for Lincoln’s play area had been washed and put away. The wiggly infant tree-gazing days were over. Midday, naptime tete-a-tetes with Maddie had ended. While I had the distraction of growing life around me, Robert’s care had been merely part of the mix. But now his care was the totality of my life. His needs were becoming more difficult to manage. This stark reality was sinking in. The yawning days of my life stretched out in unrelenting monotony.
An impossible situation
I could not live a full and vibrant life, the life that would keep me healthy and sane, unless I moved Robert to a care home. Elizabeth understood I had made the tentative choice to move him, but could see I was equivocating in my decision. Wasn’t I duty-bound to persevere in his care? After a few days as my shadow, Elizabeth said without rancor or emotion, “Sharon, this is an impossible situation. You cannot spend four hours a day getting him dressed, and the rest of the day interacting with his nonsensical outbursts. You have to move him.”
Elizabeth gently suggested my focus shift to finding a placement that would let Robert live his best possible life, however limited that life might be.
Being mortal
The year before, on the recommendation of a friend, I read Atul Gawande’s book Being Mortal: Medicine and What Matters in the End. In the book, Dr. Gawande argues for a rethinking of care for the terminally ill. Rather than focus on physical survival at any cost, we should instead ask the patient, the person, what they want at the end of their life. After reading, I better understood which questions were the most important. I had to forget about keeping Robert’s physical body alive for its own sake and think only of what Robert, the person, would want for the last years of his life.
What was important to Robert in his life now? How would our kids and I remain part of his life in a meaningful way, even though he wouldn’t be living at home? What were his priorities? What would make him happy?
What did he want?
But while the book provided a framework for evaluating potential care homes, end-of-life questions are difficult to answer for a person with dementia. By the time we arrived at this point in our marriage, Robert was over four years into his disease process. If there was ever a period during which he might have understood the nature of his illness, that time had passed. He was oblivious to his disease and this made evaluating a care home from his perspective more difficult. I could rely on what I knew of Robert, the man, and how he had lived his life.
This is a lesson I’d revisit over and over again as Robert’s needs changed.
Elizabeth set up appointments at two memory care homes. We would get a sitter for Robert and tour the homes the following afternoon.
To be continued…