Five years ago this month, we had a spring snowstorm, as is typical this time of year. I called my mother the next morning, worried that the housekeeper, Lorraine, wouldn’t be able to pull into the driveway. My dad was back East, visiting his brother, so my sister and I were keeping an eye on things. At that point, my mother was still in the “mild cognitive impairment” zone, and able to manage pretty well on her own. But how would she manage a foot of snow?
“Hi!” I chirp. “Lots of snow this morning! Did Lorraine have to park out on the street, or was she able to pull into the driveway?”
“Oh yes,” my mother replies. “I shoveled it myself.”
“Oh, you shoveled a path for her?”
“No. The whole driveway,” she says earnestly.
She’s not kidding. I’m incredulous. I cannot reconcile what I’m hearing with the math I’m doing in my head. The entire driveway is about 5,000 square feet with snow a foot deep. She is claiming to have personally shoveled 5,000 cubic feet of snow. Heavy, wet, moisture-laden, spring snow. If each cubic foot of wet snow weighs 10 pounds, she just lifted and moved 25 tons of snow.
“Really?” I ask. How can I not believe my own mother?
“Can you put Lorraine on the phone?”
“Hi Lorraine, is the driveway clear of snow?”
“Yes it is,” she says, in her redheaded Irish brogue. “It was clear when I got here.”
“Um, do you know who did it?”
“Well, your mother is convinced she did.”
This was early in my learning curve. Why would my mother say something that was not only false, but also impossible? Maybe it is possible?
I call my sister, Leslie, who lives 10 minutes away from our parents.
“Hey, did you know that Ma is claiming she shoveled the driveway?”
“Yup.” she confirms. “I called her earlier and that’s what she told me! In fact, Pancho and I went over there to check it out. Sure enough, it’s clean as a whistle.”
“Did she write a check to someone?”
“Nope, I looked. Nothing. And her wallet isn’t cleaned out.”
“Is the snow heavy, like it is here?”
“Yes, and Pancho almost had a heart attack clearing our tiny parking pad. Yet, she insists she did her whole driveway.”
We’re both mystified. Maybe she did, with secret super powers not yet revealed to us? Like small children, we’re still looking up to our Mommy.
I call her back. “Hey Ma, how do you feel?’
“Oh, I’m fine.”
“Are you sore at all? How’s your back?”
“No, I’m fine.”
“Who cleared the driveway?”
“Was it hard work? Was it heavy?”
“Oh no. it was fine.”
We know her short term memory is failing. And if she has no short term memory, how would she remember she shoveled the driveway?
Furthermore, she weighs 110 pounds soaking wet. She’s 78 years old. She’s still alive, still standing. C’mon! SHE DID NOT SHOVEL THAT SNOW!
Or did she?
Looking back, we cannot believe we fell for it, or even entertained the notion for a second.
But taking care of a loved one with dementia involves a learning curve. And we are way savvier now. We’ve learned that when she looks at a situation, lacking any memory of it, she comes to conclusions about what might’ve happened, and speaks authoritatively as if she knows, even though she doesn’t. So if I ask, “Did you see Marianne today?” she’ll search her memory, come up blank, and say, “No.” Then 10 minutes later, I’ll ask, “So did you enjoy your lunch with Marianne today?” And she’ll say, “Oh yes. It was fine.”
Part of our learning curve included testing her, just to see what she’d say when we’d inquire about her day. “Where did you go?” “What did you do?” She used to fill in the blanks, such as, “Over to her house” even though I knew full well that Marianne took her to a restaurant once a week. Then she started answering, “Huh, I can’t remember.” Any more, we don’t even ask. we just know what we know from talking to her caregivers, and I don’t burden my mother with questions she cannot answer with integrity. Instead we stay in the moment. We discuss what’s going on now… what we’re doing, what we’re observing.
You see, when someone starts losing his or her mind, your intact mind cannot grasp exactly what that means. You understand that memory, judgment, planning, word-finding, reasoning, conversational skills, and impulse control are increasingly impaired. But you need to witness these declines to wrap your own mind around the effect. You need time to learn how to navigate this foreign landscape. At first, it’s baffling when she asks you what’s for lunch for the fourth time in ten minutes. It boggles your mind, only because your mind remembers. You try to answer in ways that might be memorable to her. Of course, it’s no use, and depending on how good your own memory is, you eventually learn to answer over and over in various ways that are either efficient or highly entertaining to you, so that you can remain unruffled and approach dementia with equanimity… and so that you don’t blow your brains out.
You also adjust your perspective and your behavior to make your life easier. You don’t correct her, because she won’t remember or learn from it. It’ll only confuse or agitate her. You don’t blame her, you blame the dementia, because if her mind was intact, this wouldn’t be happening. If you want something done, you carry it out. If you don’t want interference, you do it on the sly. If you don’t want stuff to disappear, you tidy up because if you don’t, it’ll be squirreled away --or cast into the black hole we imagine in the back of her closet. You acquire realistic expectations, as this noticeably reduces your stress. You learn patience, as this benefits your blood pressure.
You also learn to dance with dementia. I f you don’t want a fuss, you don’t tell her she’s going to the dentist until you’re in the car and she’s inquiring, and then you only have to listen to the obsessive worries for 15 minutes instead of hours or days. You learn to cut her curly salt-and-pepper hair, to avoid a fruitless trip to the salon, where she looks in the big mirror and says, “I don’t want it any shorter” and you definitely aren’t getting your money’s worth when, as a result, the hairdresser can’t bear to cut off more than a millimeter. If she objects to something that must be done, you wait five minutes and try another tack, usually with success. You learn to use collaboration-inviting “fiblets” like, “You wanted me to remind you to brush your teeth,” whereupon she thanks you and does it happily. Or reassuring fiblets like “I’ll take you home later” even though she’s already there. You acquire a caregiving team and learn to delegate the load of supervising, managing, and nurturing this adult life hijacked by a dissolving brain.
You also learn to see the hilarity of this predicament. You get a kick out of her pointing to the same joke on the cheap mug at the thrift store, repeating it for the fifth time, still chuckling anew and asking, “Isn’t that funny?” You enjoy it when this straight-laced woman looks at the license plate of the car in front of you that reads “437 OGD” and she says with an evil cackle, “I wonder if they know their car is saying ‘Oh God Damn!’”Or you smile when she comes out of the air-conditioned house into the 100 degree summer heat to join you by the pool, sporting a turtleneck and sweats because when she got out of the shower, she felt cold. When she rejects your suggestion to put on shorts and a T-shirt, you wonder how long it will take her to decide for herself to change her outfit. And you thrill when she forgets her strict adherence to convention and appears wearing plaid shorts with a floral top. You admire how athletic she is in her 80’s, with badminton, volleyball, swimming, and tramping across fields, this talent revealed as she’s forgotten that “ladies don’t exert or perspire.” You're thankful that her self-awareness was first to go, and as far as she's concerned, she hasn't lost a single marble. And you appreciate that her wicked sense of humor is intact while you're both in stitches when you cheekily point out that she has put on her swimsuit backwards. For a disease with no treatment or cure, laughter is surely the best medicine.
Perhaps the most key lesson we learned was planted by a social worker who tested my mother about four years after her diagnosis of “mild cognitive impairment” and confirmed that we were entering dementia-land. “Just remember, whenever you ramp up care, you’ll never ramp it down.” In other words, dementia isn’t a temporary condition, where she’ll recover or get better. Nor is it normal development, where one continues to grow and learn. There is no forward progression, which our brains take for granted and are so very accustomed to. It is a degenerative condition. The person goes backward. And here we are 9 years after the initial diagnosis, slowly sliding into the “advanced stage of decline”. (Oxymoron, anyone?) For her, language is clearly disappearing, self-care is waning, and disorientation rules. Over the years, we’ve become accustomed to this “new normal” of regression, but lately I’m peering into a more sobering future where she won’t know what snow is, much less that she should go out and shovel the driveway.