For the past couple of months, my mother has become increasingly disoriented and wonders how she’s going to get home.
The mind-blowing twist is this: More often than not, when she’s worried about getting home, she’s already there. Inside her own house. Surrounded by decades of familiarity.
At first, I would point to family photographs, and ask her “Why do you suppose this house has pictures of you?”
I was looking for, “Oh, that’s right! This IS my home!”
Instead I got, “That’s strange. I have no idea why.”
My next tactic was to take her to her bedroom where she sleeps at night and retreats during the day when she wants time to herself. It’s her nest. But when she is disoriented, it’s as unfamiliar as Mars. One time, trying to coax her to get ready for bed, she kept insisting that she needed to go home first. So I pulled out her pajamas, hoping for a glimmer of recognition that this was her bedroom.
She brightened, “Oh good! I need to take those with me!”
Then I pointed to the big stuffed bear she likes to sleep with.
“Hey, your bear is already on your bed, waiting for you,” I said cheerily.
Her rejoinder: “Oh! I’d better take him too!”
Score: Mother 2; Me 0.
Since then, we’ve all learned to avoid reasoning and instead reassure her. We say stuff like, “Let’s have supper here. Then I’ll take you home.” By the time supper is over, she’s forgotten the supposed plan and “going home” may not come up again for a few days. If it comes up at bedtime, we might say, “We’re spending the night here, and we’ll go home in the morning.”
Not only does this reassure her, it shows respect for her wish or concern. We resist trying to talk her out of it or discounting it by reasoning with her. We’ve learned that reasoning never works with someone whose ability to reason has faded.
Yes, these are little white lies, euphemistically called “fiblets
” in the land of dementia caregiving. The fiblet is a valuable tool-- a kindness that addresses concerns, calms nerves, and helps the person with dementia feel safe and connected with the caregiver. And the memory-impaired are never disappointed by these faux promises, because they never remember them. What does stick is the feeling of warmth and respect.
With my mother's increasing disorientation, we also decided to ramp up care to make it easier for my father to lead his full and active life. Except for an hour or two in the morning when my mother is most “with it”, someone was present to help her feel safe and oriented-- and to assist with the activities of daily living.
And then, on a recent Monday morning, she got into the car and drove away. (We took her car keys away five years ago!) How could this happen? It was a perfect storm of disorientation and mishaps, resulting in what will go down in infamy as The Excellent Adventure.
Here are the seven elements that triggered her escape:
- Out of Routine: On Mondays, my dad has a social breakfast. He makes sure my mother has her breakfast and the morning newspaper before he leaves, and the longtime weekly housekeeper arrives soon after. But on this Monday morning, my dad was out of town and my mother had slept in, so she was outside getting the paper herself just as the housekeeper arrived. The housekeeper reported, “I opened my trunk to get my supplies, and your mother appeared next to me, out of nowhere! That was strange.” After exchanging pleasantries, they went inside together. The housekeeper headed for the back bathroom, satisfied that my mother had headed for the kitchen with the paper. But unbeknownst to anyone, my mother was too disoriented to settle down with the paper, much less eat the pre-made breakfast that awaited her.
- Low Blood Sugar: Not having eaten yet, my mother’s blood sugar was especially low. The brain requires blood sugar in order to think straight and make good decisions. Being on the fence between moderate and severe dementia, my mother's brain is already running on a tiny fraction of the pistons issued at the factory. Running on empty as well is particularly not recommended.
- Agitation: The housekeeper’s presence also threw a monkey wrench into the works. In fact, I had observed my mother’s increasing agitation when housekeeping was going on around her. She’d told me (in so many words) that she needed to leave as she was in the way of this person, who surely must live here, because who in their right mind would clean someone else’s house? Unfortunately, no one was there to calm her on this Monday.
- Poor Planning: As my mother’s care coordinator and having witnessed her agitation, I’d been coaching the housekeeper on reorienting my mother as needed. I had also told the Monday afternoon/evening caregiver that we might need her to arrive in the morning, overlapping with the housekeeper instead of them tag-teaming. And once again, hello, if I’m wondering about ramping up care, this means I should have done it last week. Instead, care fell short of need.
- Precautions Failed: Apparently, after parting ways with the housekeeper, my mother went through the kitchen and straight into the garage. At a whisker over 5 feet tall, fit as a fiddle, and apparently strong as an ox, she lifted the thick wooden two-and-a- half-car garage door. Her determination foiled our long-term safeguard of disabling the electric garage door opener, which was done 5 years ago as a precaution when we took away her driving privileges after a “driving assessment”. This test clearly demonstrated that she was incapable of multi-tasking to the degree required to safely operate a motor vehicle on public byways. When my dad is out of town, we’ve bolted the garage door shut as an extra precaution. But not this time.
- Assumptions Made: As another safeguard, we’ve made a practice of hiding all the car keys in The Secret Place, lest my mother get the urge to “drive somewhere”. For several years now, she hasn’t even expressed the desire to drive—until last October, when she came inside the house, breathlessly waking my dad from a nap, saying, “I need to go somewhere, and I can’t get that thing to go!” My dad had left the car on the driveway, keys on the console, so we began to assume that my mother had become truly incapable of figuring out how to drive. So on this fateful Monday, were the car keys hidden in The Secret Place? Nope.
- Underestimating Risk: Wandering is a well-known facet of dementia, the result of confusion and disorientation even in familiar places. But only 60% of people with dementia wander away and get lost. Naively, we thought my mother would be one of the 40% due to her cautious nature and her continuing desire to do what she should be doing. We never suspected that I'm supposed to be home could override her cautiousness.
So when my mother, disoriented and unsupervised, climbed into the driver's seat of the Jeep Cherokee, she struck gold. With luck, ingrained habit, and rare executive function, she found the car key, inserted it into the ignition, got the engine started, backed out of the garage, put the car in "Park", got out of the car, lowered the garage door, got back into the car, and drove off.... toward "home".
The housekeeper, at the far end of the house with water running, heard nothing of this Excellent Launch.
This perfect storm was a collision of oversights, improbable events, and numerous coincidences, whose whole was undoubtedly greater than the sum of its parts. Whipping my mother into a frenzy, this perfect storm enabled her to recall long-dormant habits and abilities. It put her behind the wheel of heavy machinery and it shoved her out onto blue highways full of oncoming traffic, multiple lanes, merging cars, and traffic signals, with speed limits high and low, winding through settlements large and small, rural and urban. Her first move out of the quiet neighborhood was one that puts the rest of us on edge: Turning left onto a 50 mph two-lane highway with limited visibility.
To be continued later this week…