Laugh, Cry, Live

Pondering the emotional side of life, beginning to end.

Monday Morning Dementia: Part Two

How my mother was found and our sanity saved.

Last month, my mother entered the advanced stages of dementia with a flourish.

Her descent has been so gradual over the past ten years, we haven’t been able to pinpoint when her mild cognitive impairment turned into mild dementia and then moderate dementia. But she clearly crossed the threshold into advanced dementia when she tried to "go home" by driving away from home. Using Herculean strength to open the garage door, the luck of finding the key in my dad's car, and calling on the ingrained habit of turning on the ignition (even after not having driven in 5 years), she experienced one last burst of executive function to actually go on a road trip. Ostensibly to Ohio. Where “home” is.

Here, we pick up where the last blog post left off...

Shortly after my mother blew out of there, Housekeeper heads for the kitchen. But where’s Ma? Housekeeper, already spooked by the earlier driveway encounter, searches high and low, inside and out, even looking in closets. In a panic, Housekeeper calls my cell phone. It goes to voice mail, which I don't listen to for more than an hour later. (It’s my day off. I’m sleeping in, okay? Gosh!)

So Housekeeper calls my sister, who lives just 10 minutes away. And here’s where the perfect storm slowly fades into a light breeze, misty clouds, sunshine, flowers, rainbows, and bunnies.

My sister is a school teacher, but has the day off due to a district-wide spring holiday.

She is just lacing up to go for a cell-phone-free run, but fortuitously still at home, she answers her phone.

Housekeeper is distraught.  My sister, with her usual equanimity, says, “No worries. I’ll just come over and go for my run on all the regular walking routes we take with my mother!” My sister’s husband, who didn’t have to be at work till noon, joins her. They set off in different directions. Housekeeper stays at the house in case Ma returns. My sister calls and leaves me a message of this plan.

By the time I wake up-- and, by the way, I've dutifully listened to these messages before I even get out of bed-- my sister is already back at the house, having run 2 miles. I call her immediately, and my first question is, “Have you checked the garage?”

She replies, “Yes, of course. But the garage door is down, nothing amiss.”

“Are both cars in there?” I inquire.

“The Jeep isn’t here," she reports, apparently unconcerned. "Daddy must’ve put it somewhere else before he left town.” (In my sister's defense, sometimes my dad does leave it at the mechanic's, or in the barn where he stores the RV.)

“Um, no," I tell her. "Daddy left the Jeep in the garage.”

“Wait," she says incredulously. "Do you think Ma lifted the garage door, backed the car out, pulled the garage door down, and then drove away? This is a woman who can’t figure out how to make herself a peanut butter sandwich!”

We consider the improbability of it all, and simultaneously reconsider whether she may have actually shoveled 25 tons of wet snow a few years back.

As Care Coordinator and Big Sister, I hatch a plan. What’s my mother’s most familiar, routine route traveled by car?

She’s been going to the Thrift Shop to volunteer, every Tuesday afternoon for ten years. Even though she’s had a caregiver drive her there for the past five, it was one of the last places we let her drive herself, and this route might still maintain a rut in her brain. So I call them first.

“Um, this might sound strange, but have you seen my mother today? She’s driven off in the car, and we wonder if she might’ve turned up there. And could you also check the parking lot?”

Nope. Zero. Zilch. Nada.

My next option is non-emergency police. When I explain that my demented mother has absconded with the family car, unsupervised, they transfer me to the sheriff dispatcher.

“Is this where I report a missing person with dementia?”

“Yup. This is the place. It happens all the time.”

This nonchalance is reassuring. We aren’t the only family so irresponsible and clueless as to lose Grandma.

They take the required info. Looking back, I’m unreasonably, insanely optimistic that they will soon find her, in a hunt that essentially amounts to finding a tiny needle in an enormous field of haystacks.

Apparently, I'm having a premonition. Or I’m insanely optimistic and lucky. After I hang up from the sheriff dispatcher, I leave a cryptic message with the Monday afternoon/evening caregiver, and then my phone rings. It's the Housekeeper reporting that my mother has been found fifty (50!) miles away, at a security checkpoint for a remote satellite facility, and she is being transported to a local Emergency Room for safe-keeping. I call the hospital and they assure me that she’s arrived and all is well. They’ll feed her lunch, and we can come get her any time it's convenient. Ha! How about next week?!

So essentially, I had three minutes of suspense between reporting a missing needle and getting word that the needle has been located in a particular haystack that quickly identifies and returns needles to their rightful places. The quick discovery and efficient rescue is almost anticlimactic. I adore anticlimactic.

I call my sister and we agree that I should be the one to collect my wayward mother, as the hospital only 20 miles from my house. But first I’ll take a luxuriously long, hot shower. Then I'll carefully pick out a fun and accessorized outfit, get dressed, and eat a decent breakfast before heading out. My mother can just cool her heels, for all she’s put us through. Well I guess my sister had a good run and I got to sleep in, but still. We've been put through the wringer!

In fact, I’m too anxious to linger in the shower. I throw on comfy sweats and grab just a small cup of cereal to eat in the car. I could take a route where the speed limit is 55, or I can meander down miles of Broadway, with its frequent stoplights through various districts of shops, warehouses, old neighborhoods, and highway junctions. My frazzled brain would be a better driver at 30mph than 55. So I take my sweet time. After about 40 minutes, I find the Emergency Entrance, park my car, and go inside. They all know who I am, and give me paperwork, which I sign as Medical Power of Attorney. The clerk at the admissions desk is SO happy I have Medical Power of Attorney. I congratulate myself on my foresight, even though my blindness is what put us here. I acquire security clearance and they direct me toward room 23. I peek in.

My mother is wearing the requisite hospital gown, with sticky snaps on her chest, indicating they did some fancy (and expensive) checking of vital signs. She’s eaten most of a pineapple fruit cup but only half of the turkey sandwich served. I notice she neglected to insert the lettuce or tomato provided, much less add the mayo or mustard.

She can’t finish making a sandwich to save her life, but she can drive cross-country and live to tell.

She sees me and brightens,"There you are! What took you so long?”

“What took me so long? What the heck are you doing here?”

“Oh, you know.” She is the master of vague replies that conceal her condition, which she will forever deny. She used to say, “I have all my marbles. I don’t know why people think I don’t.” We’d write down helpful reminders and put them in useful places, and she’d look at them and say “Well, I know that. Harrumph.” She’d then throw them away and promptly forget what she was supposed to remember.

But her lack of self-awareness is a blessing. She isn’t frustrated or depressed by her condition, because she has never acknowledged it. And we've seen no reason to insist that she face it. Plus, she'd never been particularly self-aware throughout her life. Why on earth would we insist she acquire this ability now? And how could she, now that she's become A Bear of Very Little Brain.

In addition, she is what’s termed “pleasantly demented". She is kind and funny, which has always been her basic nature. She has never liked being told what to do, but we can humor her into anything. Plus she is active, her health is excellent, she takes no medication, and as a result, she is easy to spend time with. Our three hired caregivers swear this is the Best Gig Ever. Except now we all sit on pins and needles, knowing she could wander off if we don’t pay close attention to her whereabouts and her sense of orientation. Once burned, twice shy.

In my next post, I’ll write about how we were treated in the Emergency Room, and explore Relationship-Centered Care, which is the kind of support families need from first responders and hospital staff.

Deborah L. Davis, Ph.D., is a developmental psychologist and author of 6 books, including one about perinatal hospice titled A Gift of Time.

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