Maybe We're All a Bit Demented
How dementia patients reveal the truth about the human condition
As some of you know, in mid-June my dad fell and suffered a traumatic brain injury. It’s more accurate to say he sustained multiple areas of hemorrhagic trauma throughout his brain. The extent of his injuries plus some pre-existing conditions meant that his recovery has been long, complicated, and limited. As a result, I’ve spent the past five months splitting time between Houston and Dallas. So many things have happened—all saturated with so much emotional intensity—that it’s been hard to catch my breath. Even the lulls in-between spurts of active caretaking or situational management have felt less like rest and more like time and space in which I can afford to take stock of how exhausted I am. Or afford to feel all the things like grief, pain, anger, anxiety, and dread mixed with joy, relief, and thankfulness.
During the weeks between June and August, my brother, my mom, and I meandered our way through various health-care settings: the Neuro ICU, the intermediate medicine unit, a skilled nursing facility, and a world-renowned rehab hospital. Each place came with its own set of rhythms, lumps, bumps, jolts, joys, and triumphs. If I wanted to, I could write thousands of words about how institution-centric and dehumanizing our health care system is. But I don’t want to. At this particular point in time, detailing the ways that dehumanizing systems are dehumanizing isn’t the best use of my time and energy. Neither is the activity that goes with it: proposing ways to transform—or its humbler version, to improve—such a system. It’s way above my pay grade anyway and well beyond where I fall on a potency spectrum that ranges from impotent to omnipotent.
What is within my pay grade and appropriate for where I fall on the potency spectrum is discerning how to walk with God, maintain hope, and love well within an earthly milieu that presents a steady stream of roadblocks to human flourishing. That’s where I intend to direct most of my energy during this season.
Readjusting Expectations
By mid-August, my dad’s care team at the world-renowned rehab hospital had appointed August 24th as his target discharge date. I arrived in Houston a couple of days ahead of time to get home-specific training from the physical and occupational therapists and to help my brother, David, get our parents’ house ready for Dad’s return. On the morning of the 24th, members of his care team who had worked with him for three weeks—the physical medicine/rehab doctor, the physical therapist, the occupational therapist, and the speech therapist—came into his hospital room one after another to give us final instructions and words of encouragement. Every one of them expressed optimism that he was ready. “Congratulations, Mr. Wu, you’re ready to go home!” Each time my dad responded with a big smile and a “Yeah!” It was like a pep rally. I almost expected confetti poppers to go off.
We were inclined to believe them, having seen him progress from being as limp as a noodle after the accident to being able to walk the halls with close supervision. Plus, we wanted to believe them because we were ready to be done with long commutes, expensive tolls, paying for parking, and the hospital environment in general. So we imbibed their enthusiasm and allowed it to quell our underlying misgivings. During the car ride home, my mom exhaled loudly and said, “Finally, our nightmare has ended.”
Yes, it occurred to me as soon as those words exited her mouth that it’s exactly the kind of thing someone says in a movie right before things go south.
Well… four hours after we arrived home, my mom spiked a fever of 102 degrees F accompanied by body aches and chills. We would eventually find out she had COVID, which she most likely caught from a friend who had given her rides to the hospital that week.
As for my dad, the reality was that even before the accident, he was at baseline what some might describe as neurodivergent. He had also for the two years leading up to the accident been exhibiting symptoms of progressive cognitive decline consistent with dementia. The traumatic brain injury exacerbated those symptoms and introduced new impairments in communication, reasoning, processing, impulse regulation, and judgment. But his body had been strong and healthy. He had no chronic illnesses and took no prescription medications. As a result, what we ended up seeing was a significant improvement in his physical mobility but far less recovery of his cognitive function. Once he got home, it became abundantly clear in a way that wasn’t obvious in the hospital that this mismatch had created a safety hazard. All the things that had kept him safe and clean in the hospital—an ever-present crew of nurses, nursing assistants, and housekeeping staff as well as bed alarms, chair alarms, and motion detector alarms—were suddenly gone. David and I discovered quickly that the two of us had to assume all those roles and functions.
Dad kept trying to get out of his wheelchair on his own during the day and trying to get out of bed at night (succeeding about 1 out of every 8 attempts). Even with us in the next room, he never thought to call out for assistance or use the call button we hung on a lanyard around his neck at night. Keeping him safe and clean translated to busy nights, a steady flow of laundry, and the kind of mental unraveling that happens after a prolonged period of hypervigilance and sleep deprivation. We hired private caregivers for 12 hours a day at $26/hour to give us some breathing room, but even that didn’t feel like enough. We were starting to realize that he probably needed 24-hour supervision and care.
I mentioned earlier that everyone at the rehab hospital had expressed optimism about my dad being ready to go home. But that’s not entirely true. The one exception was the neuropsychiatrist who had done a thorough neuropsychiatric assessment on him during his second week there. I never got to meet her, but David had talked to her extensively during Dad’s time in rehab. On Dad’s last day in the hospital, she had come in discretely during the hubbub, whispered to David that he could reach out to her as a resource any time, then disappeared like Batman. Looking back, that should have been a clue.
The ultra-clarifying event for us happened when Dad came down with COVID at the end of his first week home and ended up back in the hospital for nausea, vomiting, and dehydration. While I was worried about him and wanted him to recover, the most dominant thing I felt when the ambulance doors closed was relief that he would be under other people’s care for a few days. We had reached the end of our rope.
While Dad was in the hospital receiving treatment for COVID, David and I met with a senior living advisor named PJ (he’s probably an angel) to learn the landscape of elder care options.1 The learning curve on senior living and senior care options is steep for the uninitiated, so PJ’s knowledge and guidance ended up being a total life saver. Once we understood what our options were, things moved quickly. Within a two-day span, 1) we toured a dementia/memory care facility, 2) Dad was discharged home from the hospital after a surprisingly quick recovery, 3) we deliberated the memory care living option with Mom and Dad together, 4) we took them over to the place we had visited so they could have their own tour, 5) Dad underwent a full assessment by the wellness director there, and 6) he became a resident. David spent the first night there with him.
We moved him in fully over Labor Day weekend.
The Logic of Our Perceptions
During my dad’s first few days at the memory care facility, I was there for several hours a day, sometimes up to half the day, getting to know the staff and familiarizing myself with the procedures and routines there. I had never spent time in a place like that. To be honest, being surrounded by twenty-eight elderly people in various stages of dementia is not the most pleasant experience. It reminded me of the inpatient psych ward at the Veterans Administration hospital where I did part of my psychiatry rotation for PA2 school 25 years ago. But as I spent time just sitting with my dad, I started to see that it was actually quite different, primarily because the staff in memory care seemed less like clinicians doing a job and more like loving stewards shepherding a vulnerable, wander-prone flock. The caregivers were gentle, savvy, and resourceful when it came to de-escalating and redirecting people who were varying degrees of amnesiac, delusional, confused, belligerent, and uncooperative. I never observed any judgment, scolding, or exasperation while I was there—just example after example of unconditional acceptance of people who were all having a hard time and had lost their places outside those walls.
On my dad’s second day there, when most of the residents were gathered in the main activity center, one of the female residents, Loretta, went into great emotional distress. She was reliving an old memory as if it were the present. “Oh Jesus! Someone died last night!” she hollered. Esther, the nurse, tried to reassure her, “It’s going to be okay.” Unconvinced, Loretta continued, “It’s NOT okay! No one here gives a damn! You’re all gonna die too, you know!” After a few agitated movements, she was in danger of sliding out of her wheelchair. Esther called two of the caregivers over, “Come quickly!” The three of them lifted Loretta up and slid her bottom toward the back of the chair. She protested, “Ah! You’re hurting me!” to which Esther responded, “We’re helping you. You were about to fall out of your chair.” Loretta continued, “I don’t know why my daughter left me here!” Esther answered with a smile, “Because she loves you,” then picked up the fleece blanket that had fallen on the floor, laid it back over Loretta’s legs, and tucked the sides of it around her body. She calmed down, and a few minutes later, the entire incident was forgotten.
On Labor Day morning, I walked into Dad’s room to find two other residents, Lewis and Elaine, inside looking out the window. When I walked in, Louis greeted me enthusiastically.
Louis: Hey there! You’re just the person I was looking for.
Me: Oh yeah?
Louis: I’m supposed to pick up my son in a few minutes, but I don’t know where to pull my truck up. Can you point me in the right direction?
Me: I’m afraid I’m new here and don’t know my way around yet.
Louis: Ah, that’s alright. I’ll find someone who does. You have a great day now!
Me: Thanks! You too.
Later that day at lunch, Elaine walked up to me and mumbled, “There you are. I found you.” As one of the caregivers walked by, Elaine grabbed my hand and said to her, “I was looking for my sister and I just found her.” The caregiver answered, “That’s wonderful, Elaine. Come with me for a minute. It’s time to eat.”
A few weeks ago, when David was visiting our dad, he found himself in the middle of a comical group conversation with Dad, nurse Esther, and a couple of other residents.
Dad: My wife makes me a smoothie every day.
Stella: You’re married?
Dad: Yes
Stella: I didn’t know that. How long have you been married?
Dad: Over 100 years
Esther: Wow, what’s your secret, Mr. Wu?
Sandra (to the group): Aw, come on! You all don’t really believe what he’s saying, do you—that he’s been married over 100 years?
Dad (emphatically): Yes, over 100 years!
David: Dad, how old are you?
Dad: 82
Sandra: Well there you go. Does he really expect us to believe that he’s been married since he was twelve?
Sometimes when I ask my dad, “What did you to today?” his answer is a blend of actual events and a storyline from a movie he just watched in the activity room. Or something that happened three months ago. Recently, he insisted that his fellow resident Virginia was Dr. Chiu, my mom’s obstetrician from 1973.
Much to my surprise and delight, though, my dad has made friends and has even said that he’s happy in his new place. Yesterday, when my mom, my husband, my daughter, and I were visiting him, my mom asked him if he knew where he was. He answered, “世外桃源” (shì wài táo yuán), which means “The Peach Spring Beyond this world.” The phrase comes from a fable written by Tao Yuanming in 421 AD about a fisherman who discovers a village inhabited by descendants of refugees from the Qin Dynasty. It’s a paradise hidden from the rest of the world, absent of exploitation or oppression, and filled with peace, harmony, and contentment.
In all these examples, the dubious math, impaired reasoning, altered facial recognition skills, conflation of memories across the time-space continuum, and the blending of fantasy and reality are obvious to those who aren’t afflicted by dementia. But to the people operating under perceptions created by diseased brains, those things, as inaccurate as they are, are reality. We might say they’re “often wrong but never in doubt,” as the saying goes. But really, how different are the rest of us from the people in memory care compared to the God of the universe who alone sees everything as it truly is? Are we aware of how often we’re wrong but not in doubt? Probably not. What if the difference between those who’ve been deemed clinically demented and those who haven’t is primarily a matter of degrees?
We all draw conclusions and associations, we all base our sense of reality, on our perceptions of people, facts, events, and circumstances. Those perceptions create the internal logic we use to make sense of the world. However, those very perceptions are shaped by a combination of culture, language, personal experience, collective experience, memory (which is prone to inaccuracy, even among the healthy), civilizational history, and so much more. Should any of us dare claim that our perceptions are 100% congruent with God’s omnipotent and truly accurate understanding of all those things, or that our logic is equal to God’s?
It seems like the appropriate posture for creatures as limited as we are is humility toward one another and toward our Lord and Creator. Perhaps that means keeping in check any attitudes of certainty, especially when we feel most certain.
We highly recommend Oasis Senior Advisors to anyone in this situation. Our consultant, PJ, was a life line to us. He helped streamline what would otherwise have been an overwhelming search process.
physician assistant
Thank you for writing this, Judy. My dad is in mid-stage Alzheimer’s, so we’re not to the same stage as you yet. Still, the refocusing on the vast chasm between our knowledge and God’s as compared to the smaller gap between us and our fathers hit close to home.