To Tell or Not To Tell: Grief and Dementia by Devon Miller-Duggan

My mother’s younger sister is dying of lung cancer. My mother doesn’t know and I hope, won’t, even after I take her downstate to see her sister on Monday. We, my aunt and I, have agreed that my mother knowing will serve no purpose. “Knowing” is a relative term in my mother’s case, because her dementia has progressed fairly far. The last death she “knew” about was her favorite cousin’s death 2 years ago. Several weeks ago, she asked me why she hadn’t heard from her cousin at Christmas this year and could I call to see if A____ was okay. When I explained that A had been dead for two years, my mother re-grieved her death. It was awful for both of us. For her because grief is awful. For me because one feature of my mother’s dementia is her increasing conviction that I have magical powers and can make everything in her life okay, if only I would stay with her for most of the waking hours of the day. If you’ve ever thought you wanted someone to think the sun rises and sets over you, don’t. Don’t want that. Because, trust me, there is not enough of you to fill that level of need. Or even to want to.

So I am keeping things from my mother. She doesn’t know that her post-divorce significant guy of 25 years (until she moved in with us 14 years ago because his drinking was out of control) died recently. She doesn’t know that my much younger sister is finishing up chemo for ovarian cancer. God forbid my sister should go down to her cancer, but if she does, God forbid my mother finds out. If I can manage things so that she doesn’t have to process any of this anguish she’s truly not capable of processing, then when she does die and goes to heaven, she’s likely to spend her first chunk of time there being surprised as all get out by who she runs into.

My elder daughter says (bless her) that my carrying these secrets is a mitzvah. I think it’s the best that I can do to protect my mother from pain she is not capable of processing, but I’m also pretty clear that it’s a matter of protecting myself from her desperate conviction that I can make it right. Whether that amounts to a mitzvah, I don’t know. At least it’s a word I can stand hearing. People are super-nice to you when they find out you have a parent with dementia living with you. They tell and tell and tell you, out of the utter generosity of their big hearts, what a wonderful thing you are doing, what a good daughter you are. The worst is people who have done the same gig with one of their parents who tell you that it was the best thing they ever did, how sacred the time was. It makes me feel broken, mean-spirited, bitchy. Because this is very definitely not the best part of my relationship with my mother. And I am more tired than full of love. But tired, broken, bitchy people can manage mitzvahs.

To mix religions, this business of secret-keeping mostly reminds me of one of the lines from the General Confession in the 1662 Book of Common Prayer (Episcopalian, for those who don’t speak the lingo). It’s talking about sin, which is not this secret-keeping. Still, the words sum up what this feels like: “… The remembrance of them is grievous unto us; The burden of them is intolerable.” The only thing that would be worse, and of this I am sure, would be telling her.

NOTE: Since I wrote this, my aunt has died. I’ve never seen cancer progress so quickly. The funeral my aunt planned in detail was lovely and full of graces and gifts. She’s been talking to her younger daughter steadily since her death (the women on that side of my family, well, we’re a little unusual…) and is full of joy and relief. I changed my mind and was going to tell my mother so she could go to her sister’s funeral. I thought I was settled with that. Then I changed it back again after talking to many of the folks I respect most. She’s been unsettled, and I wouldn’t be surprised to discover that she “knows” without knowing, which is not something I can control for. But she hasn’t grieved, or cycled in and out of brute knowing. For the moment, I think this is right. For the moment, this feels like I am acting out of love.

A letter to my younger self by Ursula Moeller

URSULA: LATIN FOR LITTLE SHE BEAR

Ah, little she-bear. Would it have been different for you at that difficult time in 1947? Different if I could have told you that eventually you would fit in, feel a sense of belonging, feel true-blue American? That youʼd learn soon enough to change your innocent babushka-style wearing of your head scarf, learn to drape it far back on your head mimicking the other girls? That soon you would lose you British accent and vocabulary and start sounding more like your friends? That finally Mum would let you dump your scuffed British sandals for the ubiquitous saddle shoes the other girls wore and eventually a buy you a pair of penny loafers?
Even then in your loneliness you gathered strength from connections with new friends, an unlikely trio. First and foremost Granny, Mumʼs mother, she who had mailed the family wartime care packages from the US to England. How you had looked forward to them. You demanded the cooling skin that formed on the top of the Royal Vanilla Pudding. Your tongue caressed it before swallowing. Granny, who made you feel special and grownup at age nine, took you seriously with a combination of love and loving discipline, told you that your posture was perfect and your glossy auburn hair braided in neat plaits was lovely.
Then there was Shorty, hired by Dad to plant corn in the empty lot behind our house, who always took time out to chat. Resting a worn boot on his spade, he spun
American yarns that fascinated you, took time to answer your many questions, never seemed hurried.
! Third was the neighborʼs full-sized collie, Lady, who wandered into the yard as though she sensed your losses and lay quietly to be petted for as long as you needed. Lying full length alongside her, you admired her knowing brown eyes and thrust your hands deep in her soft fur to fill your empty places. When you were given puppy Nico a year later, your love for him recalled this early connection with Lady.
I remember how seriously you took your list of British words versus American ones tacked up on your closet door: lorry/truck, sweets/candies, torch/flashlight. Next to it was your list of homonyms: bear/bare, nose/knows, see/sea. You added new ones with delight, and both lists grew to many pages. Seems like it was the start of your life- long interest in words and their meaning.
! In the long run your transition time made you value the old as well as the new, helped you figure out who you were to become and to like that person.

Letter to My Younger Self by Michelle Holland

           
Dear eleven-year old me,
At eleven, you are unchained, loud.  I loved your long lectures on God and the beauty of spiders that you gave from the crook of the old apple tree on the hill behind the house, expounding to the sky and leaves.  No audience.  And the books you wrote created a whole bookcase of stapled-together stories with illustrated, construction-paper covers.  No workshops, no instructions.  You didn’t need a publisher, or an online presence.  Let me return to follow the creek with you, that bordered our property, over the fence to the cow fields and a forested lot where the small stream curved into an oblivion you never pursued.
Soon enough you will realize that hand-me-downs from your cousins, no matter how well they fit, and how brilliant the colors of old hip-slung jeans were, they set you apart from those other girls who shopped for clothes, and had bedrooms fringed with puffy pink and posters of Davey Jones and Donny Osmond on the walls. 
Cherish that old leather baseball glove that you share with your brothers, the one always behind the radiator, where you dig it out, grab a bat from the porch, and take off for Hoag’s field in late spring to play pick-up baseball with the older kids.  Because you field well, and don’t flinch at pitches, you are always picked to play on one team or the other.  At eleven, you take this for granted, and just play. 
Stay eleven.  Somehow.  You can write poetry, love songs, and sing them to an audience of birds.  And at eleven, you don’t know your father is an alcoholic; you don’t know that it will take twenty years for your parents to pay off your grandmother’s hospital bills; you don’t know that the gardens that always need weeding, grow the food that your parents will not have to spend money on at the grocery store, and you don’t know that you are poor, or that it matters.
At eleven, the days you spend at your Aunt Dot’s camp with your cousins is magic.  There are inner tubes to float on, hotdogs and chips and potato salad and your Mimére’s chocolate cake.  Later on you will hear your aunts and uncles say that your parents don’t have a pot to piss in or a window to throw it out of.  All you know is that a clean pair of underwear and an undershirt is all you need to call a bathing suit, and the ability to dog paddle, and you, too, can run and leap off the dock trying to land as close to your thrown inner tube as possible. 
At eleven you can be oblivious.  The joy you feel is unadulterated and unselfconscious.  You kept that for me.  Bottled up like the glow worms that I know you collect in a jar, then let go all at once into the darkness.  You did that for me.  Thank you.

Letter To My Younger Self by Judy Katz-Levine

Letter To My Younger Self

I did not expect this much of a deepening. Remembered myself, you, me,
as a girl with athletic agility, feet double-stepping as dad tossed
balls across the lawn, grounders he called “pepper”. Later on he told me
everyone is unique – not only the famous. I had a health problem – and
my mother saved my life – taking me to the children’s hospital in
Philadelphia – remember that. And swimming at the Jersey shore, waves
cresting and my mother’s face glistening and tan. The long talks with
her echoed in my dialogues now with my son. Playing tennis with mom –
she always won! What energy. Hard to keep up with her. The two brothers
teasing each other – tossing the tennis balls to the younger brother,
teaching him. Then he’d become a pro. Driving the older into NYC to
music school – so he could learn to write Broadway musicals. And my
God did he. And the lessons with the flute teacher – how she told me to
sing. I did not expect to marry. I married a man with an inventor’s
mind, a mind with my grandfather’s gift for invention. Did not expect
to give birth. Have a son. And each loss, the loss of my dad, my
mother, the loss of my grandfather when I was 4, after seeing the
merging oneness of forsythia, left me as a deepening well. The laps of
breast stroke, Australian crawl, I swim at the lake, mirror of the
water, show you, my young self, lost at a pool, found by my aunt; people
have been good to me. You. Found myself in written texts/poems,
improvisational jazz, meditation. Strong enough now, to integrate an
accumulation of waves of losses, or peaks created by writing the poems,
blowing flute at the jam sessions, the little gigs, the big ones,
binding with the loved faces, deep enough to be there for my friends in
this life who are still riding waves. For myself. I’m still doing the
footwork in the dunes. Want you to know.

Judy Katz-Levine

Holocaust Memorial and Town Hall, Slovakia, by Andrew Katz

This short powerful piece was written by my brother-in-law. I’ve known him for almost forty years and I always had some idea of his family’s story, but this brought it home.

***

Holocaust Memorial and Town Hall in the square of Bardejov, Republic of Slovakia. My mother and grandparents abandoned their home here as the Nazis solidified their control of Czechoslovakia in 1938. Owing to the wisdom of my grandmother, who prevailed upon my grandfather to leave town when they did (just in the nick of time), my family is not memorialized as most of the Jews of Bardejov. Though I could find no direct evidence of their life in Bardejov, my presence here, and that of our sons back in the US, affirms the long and growing legacy of their lives.

Andrew Katz

Letter To My Younger Self by Clyde Long

Dearest Clyde,

I write to you from seventeen years past your drop dead date. Turns out you will not replicate Dad’s fate. You will not strand three sons, you will live on and on and you will need to live life with the assumption of living. Your loss gives you the terrible wonderful chance to salvage the fatherhood that you missed as a boy. Recall the shame of a dad not there, the struggle of a mother to replace the impossible to replace. All this can build a strength you have, a scar of wisdom beyond your years more and more as the years pass. Not to death dwell, but those fears and worries that Mom has — turns out she’s right. I wish she weren’t.

Thousands of forks in the road will lead you to where I am now. Whatever else you do, be sure to ask out that cute girl from the La Raza party you met first week of classes.

Measuring a Lifetime by Janice Willard

Measuring a Lifetime

When I visited my parents at the Hallmark Senior Living Center they appeared suspiciously conspiratorial. They giggled together on a sofa, secretly sharing the mail as though it were a spicy French postcard. He pointed excitedly to an image on a color brochure.

“There, that one! I love the flowing curls.” Her small head delicately balanced on frail shoulders instinctively responded with a dismissive shrug. He took her hand and smiled.

He was not the kind of man who ogled women, but he always noticed their hair. One of his earliest depression era memories was collecting a quarter from neighbors who came for a shave, hair cut or perm from his parents who proudly displayed their barbering licenses on the living room wall.

He told me last week that he didn’t know what to think of all Mother’s abrupt changes in mood and attire. She was always a conservative dresser but now she relished layering her arms and neck with gaudy jewelry she got from neighbor’s apartment sales. She insisted on wearing flamboyant decorative headgear. Some days it was a frilly hat or a boa scarf, but mostly she found lots of headbands and managed to weave them through her hair. He was bothered by the chaotic look of it. I told him maybe she wanted to secure her brain, hold it together, keep it safe from the insidious forces she didn’t understand and couldn’t control.

She suddenly spoke as she turned a page. “Here’s the one for me, the June Cleaver, but in brown with just a light splash of graying around the sides.” I tried to envision her wearing a multi colored Cher mane or a pert Audrey Hepburn brown bob. Her blue tinted white locks were all I’d ever known.

She couldn’t remember how to style her own hair, a simple ritual slowly erased from her memory blackboard. He felt shame not being able to afford help with her personal care.

He read out loud the directions for ordering the $29.98 lifetime guaranteed, professionally styled Hairpiece of the Stars.

“Measure the head from the crown around and from the top to bottom, recording both diameter and circumference.” After sharing a confused look, she slowly got out a faded yellow measuring tape from a woven sewing basket under a chair. This was once her grandmother’s, the same one she used to create perfectly identical dresses every Easter for her four daughters.

They began to measure around her head, then top to bottom. They were both mathematically challenged with limited education. Fading eyesight and diminished memory made it extremely difficult to handle the limp, cloth tape.

After many frustrating attempts, they dropped the brochure and gaily began to measure each other’s heads and necks, arms and backs, and even their faces and smiles. I watched them play, entwined with golden streams of a shared lifetime, dancing a rhythm of careless laughter. A spontaneous yellow swirl measured each precious moment because that was what they had.

Devon Miller-Duggan Contemplates The Black Dog of Depression

Sick Leave

A friend posted on FB today about how wretchedly sick she is. A bunch of folks (students, friends, grandson) have gotten flu this year in spite of having had their shots (proving what they always tell you, which is that the vaccines aren’t 100% protection). Not only do these people feel that staying home is the right thing to do, all the humans with whom they don’t share their viruses are rightly grateful. Flu is a disease, right? You get to be guiltlessly sick and are urged to take care of yourself.

Depression is a disease, too, right? It’s not, in epidemiological terms, contagious. But it is an illness, a system failure, and it makes you as miserable as flu, though not as non-functional. I can’t count the number of people I know who just keep going while depressed. There is no vaccine, but there are medications. Many are convinced that taking medication is a surrender, a failure of character, even people who wouldn’t think of condemning other depressives for doing so.

And the blessed truth about anti-depressants is that they are not “happy pills.” They’re maintenance drugs for a disease that is frequently chronic. Of course, anti-virals for flu are also not perfect. But when you recover from flu, you are not only “better,” you are immune to that particular strain. When anti-depressants function, they mean that you can live and function, which is a powerful kind of “better.” But there is no immunity, and circumstances can override whatever drug(s) had been keeping your difficult balance.

All of which is saying that my difficult balance is not working today. And that, in an act of ferocious rebellion for my Puritan self, I decided to skip a committee meeting at church this evening because I am sick, not with flu, but at heart. I wouldn’t be guilty if I’d stayed home with the flu or a nasty cold, but I will be about this. Maybe not. There are lots of chunks of my life where I don’t have the option of staying home when the Black Dog is eating me alive, and I am mordantly aware of how good I am at faking sanity/health. But just for tonight, I need a sense of agency. I need to choose to stay cocooned where I won’t be watching myself fake my way through time with people and loathing myself for it.

Why so Black-Dog-ridden? Stress, anxiety overload, and a sense of having no agency. The “no agency” thing is different from hopelessness. The two issues over which I have no agency are both subject to hope: my mother’s anguished existence (in my house) will end (hopefully before the stress of it kills me), and I will wake up one morning not praying both that she did not wake and that the day will be a good one for her. Other than promise her that she can be here until the end (many of you are familiar with the long, unhappy story of the attempt to have her live elsewhere, but if you’re not, trust me, it’s not an option). My job situation might improve (though I have many reasons not to succumb to hope—and it’s funny how knowing you shouldn’t waste energy on either worry or hope doesn’t help the brain keep crap secret from your heart). A couple of heavy rejections haven’t helped, but they’re not the drivers here, just more negative noise in a metal-band-chorus of anguished discombobulation and aggressively paradoxical emotions. I have Bach playing on Pandora as I write. Usually, it takes relatively little Bach to convince me that everything will be okay. Today, it just makes me want to cry. But so do Joni Mitchell, Bill Evans, Steeleye Span, and The Chieftans, which pretty much covers my range.

Lots of things do help—writing, walking, being in the classroom, being with my kids and grandkids. Many parts of my life are highly privileged, lushly interesting, and as secure as anyone’s can be, not to mention full of love and friendship and all that stuff that is supposed to make me feel better. And they do. But I always have to come home to my mother, I am likely to always be an adjunct, and my brain chemistry is ALWAYS going to be frangible.

Some of this is genetic predisposition. I have a family tree full of depressives, alchoholics (who doesn’t?), epileptics, migraineurs, and psychics. As nearly as I can understand it, that genetic quirk can be tripped by trauma. Another person with different genetic structures could live my exact life and not be so bedeviled. But me and my genetic imprint, including a tendency to live in my head, we gave birth to mucked up brain chemistry that decades of therapy, several attempts at yoga, a remarkable marriage and family, lots of education and work I love, as well as a metric ton of hard work on my part have not dislodged the chemistry. I just understand all the traumas and their tangled tributaries VERY well.

There are several lists/memes floating around the internet containing things NOT to say to your depressive friends, so I won’t reiterate them here. But let me be clear: I am intensely grateful for my life. And I live much of it in pain. I am exactly the same as someone with intractable post-surgical pain who keeps going. It’s just that she can show you scars. Neither of us is a hero (in my definition, heroes save other people, or provide extraordinary succor in extraordinary circumstances—think Malala Yousefzai or Januscz Korchak), or put themselves in harm’s way for others. Many days are good, most are mixed-but-do-able. But some are like trying to climb mountains with a knife in my heart and huge black mastiffs fastened to both ankles. Yes, it’s a pretty dramatic image. Tough.

I’m a lousy Christian, though I work a little at being a better one. This is only relevant insofar as I need to say that prayer gets me nowhere. I don’t feel singled out for un-love in this, just kind of interested and a little baffled. In my experience, when The Divine wants me to hear, it thumps me pretty hard on the head/heart, but otherwise we pretty much leave each other alone. I think I’d probably have this slightly odd relationship to the Universe even if I were not a depressive. Maybe not. No way to know. I do know that I grew up with an acute sense of having to EARN everything good in my life and that that is, in some cultural way, connected to the overwhelmingly Protestant ethic that runs like an aquifer under everything in American life, or at least in WASP-American life. I believe in Grace (which, by definition, cannot be earned) abstractly and concretely, but none of this changes my cellular conviction that there is something keeping my hands around my throat.

So today the Black Dogs were exercising their jaw muscles, and the knife was turning around and around. Sure, there were triggers, but it’s not like the triggers (my mother was intentionally cruel to one of my daughters, and the stress of the not-knowing about my career path has just hit one of its periodic boiling points) are new, these just happened to coincide with the dogs being hungry. And so I’m going to be Not Okay and stay home from a meeting that doesn’t actually need me. Maybe even a couple of meetings. Maybe the dogs will go to sleep for a bit if I don’t feel like 47 people are asking me for things while I’m just trying to breathe. And I will get through another day. Because that’s what we do, those of us who live with the Black Dogs. We get through.

Some of us recite the chorus of Leonard Cohen’s “Anthem” to ourselves. Sometimes it helps:

Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in.