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.

The Dentist and The Mama by Devon Miller-Duggan

The Dentist and The Mama

It’s been a while since I wrote about the long road that is my/our care of my
mother. There hasn’t been much to talk about. She’s still here, still physically
sort of healthy, still drifting further into the wormhole of dementia. Still,
still, still. I’ve made some progress, behavior and neuroses-wise and am in a
state of improved patience and kindness, which feels good. It’s been hard being
the center of the world for someone who’s being gradually stripped away of all
of her most charming and engaging traits and left with all the lesser, more
passive-aggressive versions, but I have had several of things happen that have
made things easier on my heart and head. One is that I may have managed a bit of
growing up (still apparently possible at 61, thank God) courtesy of my
therapist, time, my daughters’ prodding and whatever mystery elements go into
whatever constitutes “peace” in a human heart. Another is that I had occasion to
watch a truly vile mother in action—someone actually pathological and
malicious—and it was a bit of a jolt to my self-pity. A third is probably that I
just ran through most of the anger. So I’m less dramatically fraught, which is a
relief to EVERYONE, except my mother who doesn’t actually register any
differences in my behavior since she sort has a goldfish memory these days.

Here she still is, all stubbornness, coy compensatory courtesy, and
I-have-to-tell-Devon-how-much-I-love-her-so-she-won’t-send-me-back-to-THAT-place.
Unless her great-grandson is around, at which point she’s close to alive, that’s
about it. Oh, and the truly terrible boredom. It’s awfully hard to alleviate the
boredom of someone who just can’t do so many of the things she used to
enjoy—really follow a narrative, walk on the beach, play cards, listen to music
(a couple of months ago, I put on “The Magic Flute” while I was working on
something in her apartment and she told me to “turn that shit off.” She used to
adore Mozart.) She is getting close to not being able to handle stairs at all,
and has taken to going outside onto the front walk 20 times some days to check
to see whether—well, I don’t exactly know what she’s checking on, but it’s a
little disconcerting how often she’s out there waiting when I get home from work
or errands.

Today we had to go to the dentist. My father was a dentist who worked on his own
family. The result of that is that we have phenomenal dental work and a bit of
PTSD (I use the term carefully) because being stuck in a dental chair with
someone who has gripes to grind while he does impeccable work on you is a weird
experience. A tooth he’d crowned about 40 years ago (he was pretty much the God
of Crown & Bridge, for those of you to whom that means anything) broke off above
the root, which, it turns out, has an abcess. So my mother, who has cared a
great deal about her appearance, is going to be without a lower front tooth,
because, at this stage, the major work involved in replacing that thing would be
much more traumatic than dealing with the bad root and letting the thing go.

Blah, blah, blah, teeth. I’m a dentist’s daughter. I could go on at much greater
length about this mess. It’s only relevant insofar as it will eat much of my
last week before the semester starts, especially when you fold in the podiatrist
appointment and the fact that she desperately needs new glasses. I have a pile
of want-to-do-it work and I am infinitely distractible, so this stuff eats much
bigger chunks out of my ability to focus than it should. The good news is that
I’m not mad (blessed progress). But I am wigged out by the thought of the
post-op antibiotics she’ll need—we’ve already been through one bout of C-Dif—and
by concern about how even the lightest of general anesthesias will muck with her
brain. So my not-angry-ness is manifesting itself in major grumbling about the
time, which is really grumbling about my not having any more control over this
shit than my mother does.

I read a sweet-natured meme on FB the other day that was a sort of how-to list
for communicating with Alzheimer’s patients. It boiled down to “never get
frustrated, never argue, never remind, never take anything personally.” All well
and good, and maybe useful for professional caregivers (many of whom are saints,
I swear), but it isn’t terribly realistic for caregivers who have histories with
the patients (in this case, only children on whom said parent has focused her
life rather more intently than is technically considered healthy). And it was
about Alzheimer’s, not whatever weird mix of age and long-term MS scarring my
mother is dealing with, which is different even if I couldn’t tell you how. I
know there are many people who find this stage in their parents’ lives contains
a kind of sacredness; people who can focus on the cycle-of-life parts and let
the grubby, infuriating parts slide beneath their armature of kindness and
generosity. I’m not that sort of human. Truth be told, I don’t even know if I
want to be, no matter how much I envy the serenity that would offer.

It’s not news to anyone that death, illness, family, and the infinite combos of
the three are one of the most emphatic and profound locations where we confront
our inability to control much of anything. Nor is it news that the only thing we
can control in these situations is our own behavior—when we’re lucky. It just
all sucks. For me, using the language of sacredness about it feels like a weird
form of denial. But then, I’m not the sort of person who uses terms like
“passed” for “died.” We bury the dead, properly, not our emotions and
experiences.

Whatever faults my mother has, my whining exhaustion should not be her elegy by Devon Miller-Duggan

Last week’s assignment in my Intro Poetry Writing class was an elaborately phrased prompt for an elegy (I cannot recommend the prompts in Challenges for the Delusional from Jane St. Press highly enough. I only use a couple of them in the course of the semester because the real reason I have my students buy the book is so that they can take the marvelous thing away from the class with them…). I don’t normally write with my students, which is kind of dumb. Or it’s a reality-based function of the kind of energies involved in teaching. Or, or, or… But I decided that the elegy was timely, at the very least, given that last week my mother came home from the rehab following her back-to-back life-threatening infections (septic pneumonia and c-dif). I’ve been doing a LOT of processing, emotionally since she was ambulanced into the hospital with the pneumonia 6 weeks ago.

Short background: my mother was diagnosed with MS and epilepsy 3 months after the birth of my (developmentally disabled) sister when I was 15. She’s 80 now and in remarkable shape (she was still driving more or less safely until a year ago). I have no other siblings. Except for the year she ran off to California with a couple of grifters (I swear.) in an interesting attempt to “not be a burden” to me, there hasn’t really be a year in which I didn’t spend some time taking care of my mother, even though she has been largely independent for most of it. She’s lived with us full time for the past 11 years.

There aren’t a lot of 80-year old MS patients out there, and the ones there are are in much worse shape than my mother. Which does not mean she’s in terrific shape. She’s frail, has really lousy balance, truly terrifying toenails, no appetite, and a pretty bad attitude. Her speech is impaired, but mostly functional. Her brain’s been sliding away really noticeably for a year now. Hearing’s iffy and interestingly selective. But she’s on no meds and her heart’s strong.

Here’s the thing. I am the core and focus of my mother’s life. Always have been. According to her, every major decision she’s ever made has been made in the context of me. Every. She stayed with my (toxic to/with/around her) father for me. She divorced my father for me. She took up with her long-time incompetent alcoholic boyfriend for me. She stayed with him for me. She moved with him to Cape Cod for me. She had my (sister against all medical logic because she believed she’d have another me. She moved into my house because I wanted her to (nothing to do with the fact that the aforementioned boyfriend drained her finances to the point where she couldn’t keep her house on the Cape…). I am her greatest accomplishment. Otherwise, according to her, her life is a long list of disappointments. She never got her novel published. Or her diet book. She never wrote her second novel. She never got to take enough classes. She never got to travel enough (several trips to Europe and various National Parks notwithstanding). She never got to marry the Great Love of her life (wouldn’t leave his wife). She never got to have a Ph. D. and teach teachers.

She has never understood that I don’t particularly want to be the focus and core of her life. Not fully. She understands, on some important, but subconscious level, that I can’t be an actual grown-up without some sort of separateness from her. But she doesn’t like it. I’ve spent decades having a semi-comic conversation with her about the definitions of passive-aggression and guilt-mongering. Makes me feel better. Rolls off her like water off a charmingly twinkly duck’s back. I love her to pieces, but not quite the way she loves me.

And it’s been a largely highly functional relationship. She’s, of course, generous to a fault, and funny and smart and tolerant of my occasional bouts of bitchery and bluntness. We have a kind of system that has worked pretty well for a long time.

But the past 6 weeks have just about broken me. The hospital was a nightmare—I stayed the first 4 nights to keep her from getting up and falling on her face repeatedly (the nurses couldn’t get there fast enough, even with a bed alarm—she’s weirdly fast for a wobbly 80-year old—as it was she did rip out her lines once…). The rehab was worse. Good rehab, great care, still the most depressing place I’ve ever been. Now she’s home and I’m functioning as her caregiver until we get all the home-health stuff settled and in place. I’m also teaching and caring several morning a week for our 3-year old grandson (a more joyous human never walked the planet) and trying to spend enough time with my brand new granddaughter (oh, yeah, my daughter was in labor for a week in the midst of all this—but she won and got her VBAC and a gorgeous 9.6 lb. baby). I’m tired in ways I have never been before, and angry with my mother (like she timed this on purpose…) for still being alive, for believing that she needs to stay alive because her love is so magical that it somehow sustains me and all the air around me (that’s not actually a very exaggerated version of things she has said), and for needing me so very, very, very much.

So I’m having a little trouble with the elegy. I’d like it to be about the absolute animal joy of my mother bodysurfing with her granddaughters on a beach on Cape Cod Bay one perfect summer day when the normally mild waves were just energized enough to be perfect for it. I’d like it to be about how, even now, when she looks at trees, she’s trying to figure out whether they’d be good to climb (she was a great tomboy as a kid). I’d like it to be about the ferociousness and generosity of her love for her family. About her playing Rummy with my husband most days and the two of them squabbling like siblings. About how, at Yosemite and Bryce and the North Rim of the Grand Canyon and Acadia and Zion, she thanked us over and over and kept saying “I’m going to remember this for the rest of my life!”

But right now, all I can think about when I wake in the morning is how, no matter what else the day holds or needs, it will be another day of begging her to eat and cleaning up her messes and having her ask me repeatedly “What do I do next?” and telling me—achingly and repeatedly—how very much she loves me. Another day of one knife in the heart after another. Another day of realizing that my love has limits, that it can be worn down, wrung out, drained off, and then telling myself that caring for her body is, right now, enough of whatever ultimately indefinable thing love is. And kind of loathing myself for whining. Whatever faults my mother has, my whining exhaustion should not be her elegy.
Last week’s assignment in my Intro Poetry Writing class was an elaborately phrased prompt for an elegy (I cannot recommend the prompts in Challenges for the Delusional from Jane St. Press highly enough. I only use a couple of them in the course of the semester because the real reason I have my students buy the book is so that they can take the marvelous thing away from the class with them…). I don’t normally write with my students, which is kind of dumb. Or it’s a reality-based function of the kind of energies involved in teaching. Or, or, or… But I decided that the elegy was timely, at the very least, given that last week my mother came home from the rehab following her back-to-back life-threatening infections (septic pneumonia and c-dif). I’ve been doing a LOT of processing, emotionally since she was ambulanced into the hospital with the pneumonia 6 weeks ago.

Short background: my mother was diagnosed with MS and epilepsy 3 months after the birth of my (developmentally disabled) sister when I was 15. She’s 80 now and in remarkable shape (she was still driving more or less safely until a year ago). I have no other siblings. Except for the year she ran off to California with a couple of grifters (I swear.) in an interesting attempt to “not be a burden” to me, there hasn’t really be a year in which I didn’t spend some time taking care of my mother, even though she has been largely independent for most of it. She’s lived with us full time for the past 11 years.

There aren’t a lot of 80-year old MS patients out there, and the ones there are are in much worse shape than my mother. Which does not mean she’s in terrific shape. She’s frail, has really lousy balance, truly terrifying toenails, no appetite, and a pretty bad attitude. Her speech is impaired, but mostly functional. Her brain’s been sliding away really noticeably for a year now. Hearing’s iffy and interestingly selective. But she’s on no meds and her heart’s strong.

Here’s the thing. I am the core and focus of my mother’s life. Always have been. According to her, every major decision she’s ever made has been made in the context of me. Every. She stayed with my (toxic to/with/around her) father for me. She divorced my father for me. She took up with her long-time incompetent alcoholic boyfriend for me. She stayed with him for me. She moved with him to Cape Cod for me. She had my (sister against all medical logic because she believed she’d have another me. She moved into my house because I wanted her to (nothing to do with the fact that the aforementioned boyfriend drained her finances to the point where she couldn’t keep her house on the Cape…). I am her greatest accomplishment. Otherwise, according to her, her life is a long list of disappointments. She never got her novel published. Or her diet book. She never wrote her second novel. She never got to take enough classes. She never got to travel enough (several trips to Europe and various National Parks notwithstanding). She never got to marry the Great Love of her life (wouldn’t leave his wife). She never got to have a Ph. D. and teach teachers.

She has never understood that I don’t particularly want to be the focus and core of her life. Not fully. She understands, on some important, but subconscious level, that I can’t be an actual grown-up without some sort of separateness from her. But she doesn’t like it. I’ve spent decades having a semi-comic conversation with her about the definitions of passive-aggression and guilt-mongering. Makes me feel better. Rolls off her like water off a charmingly twinkly duck’s back. I love her to pieces, but not quite the way she loves me.

And it’s been a largely highly functional relationship. She’s, of course, generous to a fault, and funny and smart and tolerant of my occasional bouts of bitchery and bluntness. We have a kind of system that has worked pretty well for a long time.

But the past 6 weeks have just about broken me. The hospital was a nightmare—I stayed the first 4 nights to keep her from getting up and falling on her face repeatedly (the nurses couldn’t get there fast enough, even with a bed alarm—she’s weirdly fast for a wobbly 80-year old—as it was she did rip out her lines once…). The rehab was worse. Good rehab, great care, still the most depressing place I’ve ever been. Now she’s home and I’m functioning as her caregiver until we get all the home-health stuff settled and in place. I’m also teaching and caring several morning a week for our 3-year old grandson (a more joyous human never walked the planet) and trying to spend enough time with my brand new granddaughter (oh, yeah, my daughter was in labor for a week in the midst of all this—but she won and got her VBAC and a gorgeous 9.6 lb. baby). I’m tired in ways I have never been before, and angry with my mother (like she timed this on purpose…) for still being alive, for believing that she needs to stay alive because her love is so magical that it somehow sustains me and all the air around me (that’s not actually a very exaggerated version of things she has said), and for needing me so very, very, very much.

So I’m having a little trouble with the elegy. I’d like it to be about the absolute animal joy of my mother bodysurfing with her granddaughters on a beach on Cape Cod Bay one perfect summer day when the normally mild waves were just energized enough to be perfect for it. I’d like it to be about how, even now, when she looks at trees, she’s trying to figure out whether they’d be good to climb (she was a great tomboy as a kid). I’d like it to be about the ferociousness and generosity of her love for her family. About her playing Rummy with my husband most days and the two of them squabbling like siblings. About how, at Yosemite and Bryce and the North Rim of the Grand Canyon and Acadia and Zion, she thanked us over and over and kept saying “I’m going to remember this for the rest of my life!”

But right now, all I can think about when I wake in the morning is how, no matter what else the day holds or needs, it will be another day of begging her to eat and cleaning up her messes and having her ask me repeatedly “What do I do next?” and telling me—achingly and repeatedly—how very much she loves me. Another day of one knife in the heart after another. Another day of realizing that my love has limits, that it can be worn down, wrung out, drained off, and then telling myself that caring for her body is, right now, enough of whatever ultimately indefinable thing love is. And kind of loathing myself for whining. Whatever faults my mother has, my whining exhaustion should not be her elegy.