Missing Mom

From October 2016, when I had no real idea where dementia would take us

She’s on the phone with me when suddenly, “A burglar! Help!”
She pauses.
“Is it? Maybe it’s an airplane, wait.”
She wanders off, never hanging up the phone.
I wait one minute, two, more, listening to her putter around her apartment talking to herself, then whisper into the phone, “I miss you, Mom.”

I knew she couldn’t hear me.

Each day she gets more confused, more easily frightened. Overwhelmed by too much information, too many choices, too much sensory input in the supermarket, her clothes closet, or the refrigerator. She is frightened by the world outside her apartment, by a storm in Haiti – even though we live in New York.

She used to be fearless in that way where you afraid of things, but you don’t let it stop you. With literally no sense of direction, she went anywhere, all the time, despite worrying she’d never find her way there. Or home. This was before GPS technology or cell phones. Even before MapQuest and printed out directions.

If there was an underdog, a wrong, or a lost soul, she would defend them, right things, or bring them home to feed them. I was three the first time I saw her get arrested for civil disobedience.

She read everything, absorbed political news, supported our family of three and held her own in all kinds of discussions with all kinds of folks, despite having little more than a high school education.

After she retired, she studied opera and politics, reiki and tarot, and everything else she could find the time for.

She had had a more active social life in her 70s than I did in my 20s. Holiday dinners for more than two dozen people with multiple courses and days and days of cooking. The Moosewood Cookbook and vegetarian decades. Night-time square dancing at Jones Beach. Camping. Hiking. Elder hostels. Season tickets to dance companies and theaters. Every sculpture garden within a three or four hour drive.

Part of that is still there, but less each day.

Today, she doesn’t remember how to cook mushrooms and onions. Can’t remember that frozen chopped onions even exist. Has to be reminded to use syrup on pancakes, not blackstrap molasses, although one can see how that connection was made. Will use spiced apple cider in her dry cereal if there is no milk, and yes, I’m sure she’s not the only one who’s done that, but still.

She cannot see well, finally confessing there’s a great black blob in her vision when she wakes up. She thinks of it as her friend and it follows her around for a few minutes each morning. We begin treatments to save her sight: injections in her eye to treat wet macular degeneration. She worries, that if it works, she’ll lose another friend.

She cannot hear well despite the hearing aids. So we’re off to an ENT, head of that department at the hospital.

She is aging and shrinking and confused and we see the head man in the geriatric medicine department of the hospital.

Post-nasal drip, sinus infections, ear infections that I have to convince her she’s suffered from her entire life, that these are not new.

She has a dermatologist (who has caught four skin cancers), a surgeon (who specializes in skin cancer), a plastic surgeon (for repairs post-skin cancer surgeries), another surgeon who specializes in breast cancer, an oncologist, a heart man, a gastroenterologist (who she refuses to see), a thyroid specialist, a gerontologist, a podiatrist, an orthopedic specialist, a retina specialist, a neurologist (past tense: we both hated him), a hematologist, a gynecological nurse practitioner, and a clinical psychologist.

Each time we speak she tells me how her black cat won’t eat anything. That the calico won’t drink water from anything but a glass on the bathroom sink that she gets up in the middle of the night to refill with fresh water, and sit in the bathroom while the cat drinks so it doesn’t have to be in the dark, alone.

How she never leaves the house without the keys, even if the door is unlocked. How she leaves the door unlocked during the day, and at night if she’s feeling poorly, so someone can get to her. How the cats change the settings on her computer, the radio, the TV, the microwave, her phone. How all the air conditioners–including the one in the car–broke at the exact same time.

She saves the boxes and labels of food she likes and those she doesn’t. But cannot remember which is which, or keep the piles separate.

Chicken, cut up in chunks and saved in Tupperware becomes chicken salad, but she doesn’t know what to do with a fully-cooked uncut roast chicken that is still chicken-shaped, so she lets it stay until it is inedible rather than ask. Fire and smoke alarms are unfamiliar, annoying noises and so she justs leaves the room and plays solitaire on her computer. Sometimes, when the phone rings, she doesn’t recognize that sound either, and ignores it.

I’m grateful to be here, to be sober, to be grown enough to do for her what needs doing to make a world where she feels safe, where choices are few and simple. I’m grateful for our time and a small selfish part of me enjoys how much Mom relies on me and at the same time, I miss the Mom she used to be.

A wild and only child, my behavior had her carrying around a Rolodex card with all my tattoos listed on it, so she could identify my body when they found me dead in the gutter. It was a valid concern at that time. Now she has that same list, but the concern is who will take care of her if I die?