“Why am I here?” she asks. “I’m sorry to be such a burden to you. I should go back to Japan.”
For the last seven decades my mother-in-law, Kimiko (“Kimi”), has lived in the United States. Her father was a career diplomat, stationed in Japanese-occupied Manchuria when she was born in 1926.
“Families take care of their own. You’re not a burden, you’re a blessing.” Sometimes with linguistic coaching from my husband I’ll use the Japanese word, shiawase. It’s a word I can’t seem to remember on my own. She thanks me and is content for the next 45 seconds, until the litany starts again. She told me the other day that this place, our house — her house of 50 years — is a prison, and I’m the only nice person in it. Sometimes she kisses my hands.
Kimi, who has mid- to late-stage Alzheimer’s, had been in an assisted living facility for two years. Last week another resident found her wandering outside at 5:00 a.m. The powers-that-be informed us that 24-hour monitoring would require an immediate extra $4,000 a month, private pay, which is too rich for our blood. The facility’s partner nursing home would cost $12,000 a month. Kimi is both ambulatory and sweet-spirited. We knew that even if we could afford the nursing home, it would leach out the last of her vibrancy. We took her home the next day.
I keep her array of medications in a 14-compartment dispenser, and hide my own bush league meds in the drawer with my checkbook. My husband, clinging to the old ways, keeps his meds on the lazy Susan where they’ve always been. He’s allowed. A light sleeper, he awakens whenever she gets up to go to the bathroom, every 15 minutes from bedtime until about 4:00 a.m. when she finally achieves REM sleep. She is a pale ghost floating through the hall, the unfortunate embodiment of his recurring nightmare in which a murderous phantom looms over his bed. She isn’t completely incontinent, but the brain function that modulates the feeling of a full bladder is defunct, so she always feels she has to void. Like many others with dementia, she is obsessed with tissues. She goes through a roll of toilet paper a day — oh, to own Costco stock — and stashes Kleenex, napkins, and paper towels in pockets, shoes, newspapers.
At dusk she falls victim to Sundowners Syndrome, an onset of depression and anxiety that breeds chaos from her usual confusion. She forgets that her husband Harry died three years ago, and weeps when I tell her. “Nobody told me! Everybody is keeping things from me. When my son gets home I’m going to strangle him,” she cries, and pantomimes same. She demands to know whether “all the old people” are dead, and then decides to share the bad news with her mother, who died in 1998. She picks up the phone and stares at it. I figure she probably won’t call Guam, and let her continue. She is so angry that her beleaguered brain actually regurgitates the phone number for her parents’ Manhattan apartment. Dialing, she reaches one of her two sisters, Mari and Mio, who still live there. They have a brief conversation in opaque Japanese. Mari phones the next morning to thank me for taking care of her sister. “I just wanted to make sure you were O.K.,” she says.
Now my job search has become more urgent than ever. “You need to work for your self-respect, and to get out of the house,” says my husband, who knows that if I continue as a full-time caregiver I’ll eat my liver out. My least favorite state of being is reactive mode, and with an Alzheimer’s patient that’s my wholesale existence. Will she or won’t she? What if she does, or what if she doesn’t? Our placid and deliberate aide, Coreen, who comes in three days a week, stands unknowingly between my overcompensating cheerfulness and utter litost, a Czech concept defined by Milan Kundera as “a state of torment created by the sudden sight of one’s own misery.”
When I find a job I’ll put the money towards two extra days of aide time. Anything left over will go to my son’s medical insurance (he lives half of the year with his father), household expenses, and, if the ha’pennies permit, my daily Starbucks grande five-pump chai latte. Soon we’ll have spent down the hard-scrabbled savings that Harry left for Kimi’s care. For him, the extravagant amount we pay for basic Alzheimer’s needs would have been a shock. A veteran of starvation during the war, he would insist, “There is a god in every grain of rice.” Waste was unthinkable. Now, only when she is down to the meagre scrapings of bequeathed funds will Kimi become Medicaid eligible. My husband watches the dwindling tally with dismay. For him, there is a god in every cent of savings spent.
Sometimes Kimi is sassy. As we sorted through her accumulation of designer handbags and gloves from the ‘40s and ‘50s, I rhapsodized on how delightful it must have been to get all dressed up and go out to a fancy dinner with her husband. Or, I teased her, maybe with a boyfriend. “Takes too much time,” she scoffed. She can also be an adorable little presence, as cute (Japanese kawaii) as a human Hello Kitty. That evening, as I cooked dinner for her — sautéed chicken in mushroom sauce and vegetables, the kind of meal I’d never bother to make for myself — she announced, “I wish I could help you. But I don’t want to.” I hugged her, and thanked Jesus and Buddha and the Norns for the gift I had been given: a mother-in-law who retains her sweet but honest soul, even as her memories decompose into dust.