Tag Archives: dementia

Life-shifts

This week marks one of those “big birthdays”–my mother turns 90. The birthday feels bittersweet; for, in many ways, I have been in the process of “losing” my mother since her diagnosis of vascular dementia in 2017.

Or is it that she is losing? Losing cognition, a sense of time, the words to say…anything at all. She has not yet lost a sense of emotional self, though I know that if her body doesn’t give out first, that will eventually occur. I’ve been through this before, with my mother-in-law. Helping people navigate dementia is a challenging task.

Therefore, as I celebrate her birthday, I also celebrate the goodness of the people (nurses, CNAs) who assist her daily at her skilled-nursing apartment, the social worker who visits with her and brings her mail, the acquaintances who smile and greet her even though they know there cannot be conversation (of any meaningful sort). The doctors and nurse practitioners who find ways to communicate with her about how she feels physically. It cannot be easy, even with someone as even-tempered and pleasant as my mother continues to be.

A funny thing about my mom. When she was my age, we used to tease her and my dad about “getting old.” She’d toss our teasing aside by insisting, “You’re not old ’til you’re 90!” Even with a few health issues, she and my father continued to be curious about the world and the people in it, traveling, going to parties, trying new things (cross-country skiing, Thai cuisine, activities with grandchildren). About 8 years ago, when my dad was ill with cancer and meningitis and going in and out of the ICU, Mom said she felt old. We retorted, “But Mom! You’re not old ’til you’re 90!”

Now she really is 90. Bless her good kind heart. ❤

~

February 26th is just another day, another year–and at this point, my mother has very little sense of time. It is likely that my mother’s life-shifts are in the past, and the next shift (there’s no escaping it) will be death; but who can tell? My mother’s ninetieth feels like a huge shift in my life as her daughter, as an adult, as a mother to grown people, and as a writer in the world. Why this is so, I can’t say. It’s certainly something I’ll be reflecting on often in the coming years, and the reflections emerge in my writing. As I work on revising the poems I’ve drafted in the past 5 years, the topics of aging, mortality, aphasia, and memory keep showing up. Things I can consider myself fortunate, perhaps, to be preoccupied with, rather than being forced into confronting a natural disaster (Pakistan, Turkey, Syria, and others) or war (Ukraine, Syria, and other regions).

Here’s part of a poem I’ve been wrestling with lately.

                       ... --I would untangle
my mother's mind if I could be let access to its
recesses, but those stay hidden like the life in hedge
and meadow, in the woody undergrowth,
unknowns twisted together, impenetrable.
...

How fortunate for me that my mother is not far away, is well-housed and safely cared-for, and has had a long, creative, fruitful life to celebrate this weekend. Nonetheless, the grief inheres. The hardest shift? I miss the person she has been all my life until recently. And yet: here she is. Herself, more impenetrable than ever. And loved.

~

Mom at about my current age–ca. 1998 or ’99.

The right words

Due to mini-strokes and constriction of the blood flow in her brain, my mother has developed the same form of cognitive decline that my mother-in-law had: vascular dementia. In both cases, aphasia ravaged their speech as their conditions worsened. My partner’s stepmother also had aphasia due to stroke, so I have now witnessed the condition up close among three women who had very different backgrounds and personalities. As aphasia presents most noticeably as a loss of verbal expression (talk about being at a loss for words!), the condition fascinates me (a person who loves words).

And devastates me. My mother had never been “good at words” the way my father was, but she was a compassionate listener and often could find the right things to say when my glib and witty friends and family members could not. I recall many times when she would ask to talk to me alone and express something she’d been keeping to herself and reflecting upon, waiting until she could “say it the right way.” Now, she can say almost nothing “the right way.” Rain becomes snow; snow becomes green; hat becomes clark; tomato becomes red; table becomes place…and even these are unreliable substitutes, likely to change from one conversation to the next. The pronoun she has vanished from her lexicon. Her vocabulary is little better than a five-year-old’s, and she inadvertently invents words that are essentially meaningless while trying to convey meaning.

She can still read, a little, and slowly. A few months ago, I gave her a book by Eloise Klein Healy, Another Phase. Healy, a well-known poet, was stricken with Wernicke’s aphasia and–with a devoted speech therapist’s help–regained the ability to compose poetry again, though the work she now produces reflects her profoundly-changed expressive abilities. My mother was pleased that she could read the book and that Healy could make poems even with aphasia. And Mom understood the poems–had memorized a few image-lines that she liked. This stunned me–memory’s often wrecked by vascular dementia, or so we are led to believe. But my mother has a good memory. She merely has extremely limited verbal expressiveness–an inability to locate the right word, and a loss of numeracy and literacy. Alas, the result means she cannot make her ideas and thoughts known to others. Isolating.

The pandemic lockdowns at her assisted living campus, my father’s death after 62 years of marriage, her gradual hearing loss, her inability to drive or go shopping–all of these led to further isolation. And isolation, of course, worsens the dementia.

Now that the lockdowns have been lifted, my family members are spending as much time as we can visiting her. One Best Beloved drove her to the church she has been attending by Zoom, now that in-person services have resumed. This past holiday weekend, I picked her up at her apartment and drove her back to my house. Due to my dad’s ill health and the pandemic, it has been over two years since she was here; but for 25 years, she and my father drove here many, many times. It was heartwarming to watch her as she relished returning to a familiar and much-loved place, which also happen to be my house and yard.

She kept saying, “This is so good. This is so, so good!” We’d arranged a mini-gathering for lunch, and there was tasty food and lively conversation all around her. She doesn’t seem to feel frustrated at not being able to join in the dinner chat; I think she was glad just to listen. After awhile, her vocabulary even expanded a bit. She said, “This is fun!” and “This is so great!” in addition to repeating how the day was so good. The joy was palpable.

(I am reading about joy just now, as it happens–a book by Douglas Abrams, Archbishop Desmond Tutu, and the Dalai Lama called The Book of Joy. More on that another time, perhaps.)

After lunch, some dessert, and a brief nap, my beloved mom admitted it was probably time for her to return to her apartment. I drove her home, and the ride back was full of comfort and ease and quiet companionship such as I haven’t felt with my mother during the past couple of difficult years, though it’s been there my whole life. I was helping her out of the car when she said, “That was wonderful. Let’s do that again!” Two sentences in perfect grammar, and a boost in vocabulary from good to wonderful.

“Only connect.” I don’t think E.M. Forster was referring to aphasia or to isolation in Howard’s End, but the phrase suits today’s post. Human connection matters. Indeed, it’s wonderful.

Conferencing, distance

Rather at the last minute, I found out that West Chester University’s Poetry Center was hosting a virtual conference during National Poetry Month. Previous WCU poetry conferences have been in person, and often in June; I used to attend when I had the time and money, since I can drive to West Chester in about an hour. For years, my full-time job has interfered. This time, the fee was low and the panelists and readers were people whose work I enjoy. While I could not attend all of the sessions or enroll in a 3-day workshop, I could at least “zoom in” to many of the events.

I’m glad I did. But before I write about this year’s conference, a brief history of my experience at past WCU Poetry conferences.

Initially, the conference poets focused on formal poetry: writing in forms, meters, and employing rhyme at a time when the major forces in U.S. poetry leaned more toward free verse. Dana Gioia was one of the co-founders, and the conference brought in such writers as Anthony Hecht, David Mason, Rachel Hadas, Marilyn Nelson, Richard Wilbur, Molly Peacock, and Timothy Steele…to name just a few (I haven’t forgotten the others, I just cannot list them all!). If you’re not familiar with them, Google their names and locate some of their poems; their work is considered “formal.” By some. The term itself is rather fraught. I’ll skip that argument for now.

It took considerable bravery on my part to participate in the conference the first time I attended, because I was writing mostly free verse, was not an academic, and was more or less acclimated to being a not-very-ambitious stay-at-home mother. I’d started my MFA program, however, and told my advisor that I wanted to learn the things I’d missed concerning historical patterns of poetry. I loved and grew up with rhymed and metered poems but had no idea how to create them. Hence: the WCU conference, which happened to be near enough that I could get away and back for four days and not have to do too much re-scheduling to accommodate my kids, pets, garden, and spouse.

Frankly, I was intimidated. The poets were all so…accomplished. Most were college professors, many were critics, lots of them had written books–lots of books–and even many of the people attending had won prizes and had significant publications. They were keenly and frighteningly “smart” folks, well-read and well-traveled. But after awhile, I felt more at ease. Sam Gwynn, Molly Peacock, and David Mason were hilarious. Rachel Hadas demonstrated intense and generous listening, and was so kind. And I learned so much (and bought so many books…) that I attended at least four more WCU conferences. Then I got too busy.

The Poetry Center and the conference have changed directorship a few times. For awhile, the late (and wonderful) Kim Bridgford, who later established the Poetry by the Sea Conference, was at the helm; currently, the Center’s guided by Cherise Pollard, who came up with the theme that drove this year’s panels and workshops: The Healing Power of Empathy. Healing and empathy are qualities we need when times are hard and seas are rough. It’s important to remember that healing requires change. It’s a change-state verb. Sometimes those changes feel uncomfortable, painful–and empathy can help, as long as we employ it in an active way (empathy as a change-state).

I managed to draft a sonnet in 15 minutes, thanks to Molly Peacock, and heard some new-to-me voices in poetry, and listened to poets who are deeply engaged in the work and art of poetry discuss their processes, enthuse over their influences, and say what drives their curiosity. I found kindred writers who are, like me, endeavoring to put voice to people with dementia and express the grief we experience as our Best Beloveds lose personality, language, ego-consciousness.

Lesley Wheeler shared the writing prompts her panel put together on her blog, here; she and her four co-panelists (see blog) reflected on feeling across distance, another apropos topic in the current times. It seems we can and do find methods to be human together, even when we are apart. I think of all the letters I wrote when I was in college, and afterward, as I moved around the eastern USA, changed addresses, and tried to keep my friends and family informed as to who I was and what my interests were. In my attic, there are boxes of correspondence written in the days before email. Many of them are now letters from ghosts. Words I will never hear again from living mouths, but a way we kept “in touch” despite, and over, distance. And still do.

Lacunae

With some encouragement from friends and colleagues, and with some trepidation, I am posting for the next few weeks some unfinished poem drafts and some poems from my Red Queen Hypothesis manuscript. That’s the plan, anyway. Plans, especially creative writing plans, seem often to go awry.

Given that my last two posts concern how we tell stories and what interrupts us from our narratives, I present herewith a draft of a poem concerning just that. I experiment here with gaps in form; I think of erasure poems (see Dave Bonta’s erasure poems on Via Negativa or Tracy K. Smith’s “Declaration”) though this is not one–the “erasure” here is internal, a series of neurological gaps and stutters.

I don’t know if the poem works as is, could use more tweaking and re-arrangement, or is so confusing as to be far off-base. Perhaps that depends upon the reader.

~

 

Lacunae

Writing self

Among the students I have tutored over the years was a young woman recovering from a traumatic brain injury. Writing was difficult for her on several levels. Reading on the screen or page tired her eyes and made it hard to focus; while using voice-activated software helped for that part of the writing issue, it did not resolve her larger cognitive loss: she found she could no longer tell a story. The ability to tie together research, concepts, and chronological moments to compose a logical narrative evaded her.

As we worked together, I learned how writing can restore the self. She began to reflect, through writing, on her process and her memories and to tether things together on the page so that they “made sense” to me–her sounding board. When something made sense to me, she would re-read it and decide if it reflected what it was she had been trying to say. Gradually, she felt more restored to herself, a slightly altered-by-trauma self, but a cohesive self who could tell a story again.

~

When I tutor students who are multilingual, particularly if they are fairly new immigrants here, I find that writing plays a similar role in reflecting or re-creating a self. These students learn to work and write using American English as their mode of persuasive communication, and in the process they develop as people who live in the United States and who consciously employ those terms, phrases, writing techniques, and concepts. They are much more conscious than “native” speakers about the fact that they are using Americanisms and writing in an American style; what they end up with is a self that they can deploy when necessary in American society.

~

Brain diseases, strokes, and dementia dismantle the story-telling ability. Whether we use the metaphor of braiding, warp & weft, or nuts & bolts, we mean that story has structure–and in dementia, structure comes undone. With that structural demise all too often comes the unraveling of the self. Each gap weakens the links that give us our own story-made self and leaves the human bereft of that consciousness we rely upon for being. The person whose brain has stopped constructing self stories is no less human, physically; but the self–that sentient, much-valued ego–disappears.

When I am with a hospice patient whose mind has stopped composing narratives, I see that the narrative of pain and envy and sorrow seems to depart. Is there a story that contains only peace? Could that even be a human story?

I don’t know what to make of all of this.

IMG_5015

Sometimes, I wish I had the peace and confidence of a house cat.

Dementia, fears, & mirrors

Dementia: the very idea raises fears about the loss of control, loss of beloved memories, loss of self. Is a person who is deep into dementia still sentient, still conscious? If we lose our ability to connect with who we are–let alone with other people–have we misplaced whatever it is we call consciousness, or mind?

Yet no one who has interacted with a person who has dementia would say the person has no consciousness. It is, instead, an altered consciousness: sometimes a loss of ego or sense of self in the world, or the disintegration of social or emotional “filters,” or a series of cognitive gaps that collapse into fugue, fears, or blankness. There are people who lose everything but the distant past, and people who lose everything but the present moment. Dementia has many causes and takes many forms. We do not understand it, and that creates fear.

Of the things I fear that are actually not unlikely to occur, dementia–more than death–unsettles my equilibrium. I have watched it unfold among a number of people, uniquely and inexorably each time, devastating to the loved ones of the person who has become ill and frustrating beyond measure to the victim.

I try to avoid the word victim when describing illness, but there it appears.

Personhood, consciousness, rationality, emotionality, familiarity, habits and the framework of the person’s life erode while the person goes through the usual day; nothing stays usual. Sometimes all that remains are useless habits, physical tics, fragmented phrases that no longer convey social information.

Because I struggle with the concept of mind, because I read philosophy concerning mind and neuro-psychological texts about human consciousness, because I am a writer and feel passionate about human expression and interconnectedness and how we originated the tools of speech, metaphor, storytelling narrative and writing, the loss of sentience that dementia seems to bring represents the deepest kind of loss.

How do you face your fear?

~

How about in a mirror? Through a glass, darkly…*

Through some sort of glass–of which there are so many varieties, a huge number of which I encountered recently at the Corning Museum of Glass in Corning, NY. It is worth the trip to western New York state to experience this gallery of art glass, collection of glassware spanning 35 centuries, interactive exhibits on the development of such commercial and scientific glass innovations such as Pyrex, tempered glass, shatterproof and mirrored and flexible glass, fiber-optic glass, telescope mirrors and lenses, silicon chips, and bottle-making equipment. The huge museum, established as an in-house exhibit in the Corning Glass headquarters in 1951, has had several major architectural upgrades and expansions from 1980 to 2015 (and suffered a disastrous flood in 1972).

We can face fear through changes in our perspective, I think.

inverted

photo by David Sloan

~

*1 Corinthians 13:12, King James Version: “For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.”