Tag Archives: aphasia

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.

Getting through somehow

My mother has vascular dementia, which renders her more and more aphasic, though in her case–so far–her “emotional tone” (as philosopher Arne Naess calls it) has remained intact. I visited my mother on a recent occasion when I wasn’t feeling my best and had had a week of less-than-good health. It was not a matter of duty. The time I spend with my mother is beautiful. But it had been a tough week. Let’s leave it at that.

We sat in her apartment in the assisted-living wing and arranged the flowers I’d brought. Then we spent 20 minutes in a kind of conversation, to which I’ve become accustomed, during which she tries to convey information about something she needs to have done. In this case, after much of the usual (really, rather humorous at times) confusion, I deciphered that she wanted some sweaters taken to the dry cleaner.

Such minutia. And yet, so difficult to get across, across that divide of language and cognition. The incredible concentration and effort it takes her just to dial a phone number to call her ailing sister. To tell the nurse aide that she needs more yogurt. Anything.

Then she surprised me. She pointed to my forehead and then to her own. “This,” she said. “Is wrong. For you. What?”

Was she reading a crease in my brow? I told her I had not been feeling great. She wanted to know, so I told her details, the way one tells one’s mother. Even though I am never sure quite how much gets through.

“Lie down. Take off the peaks.” By which she meant shoes. Why not comply? We both took off our shoes and spent the visit relaxing. We even indulged in a glass of wine because she loves to offer wine to her guests. Never mind it was 11 am. My mother has lost that rigid cognitive sense of time that the rest of us spend our lives obsessing over. There’s something valuable in that loss, though it is a loss.

She’s still teaching me things. Other ways to live with loss (my dad, her “normal” brain, mobility, words…).

~~

The next evening, she called me. She wanted to know how I was feeling. I’m 63 years old and my mother is 88, and she’s still worried about me.

I’m feeling loved.


Love is all you need

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.

How can it be

Another book about how to die, or how to think about dying: Roshi Joan Halifax’s Being with Dying–the subtitle includes compassion and fearlessness, two qualities Halifax explores using Buddhist approaches, such as meditations. While I like to read about meditations, meditation itself eludes me; I am “bad” at practicing, but authors like Halifax and Kabat-Zinn give me hope that even poor attempts at meditation can be useful in dealing with grief, stress, and anxiety. Death is the most normal thing in the world. How odd that we must teach ourselves how to “be with” it. How to keep from worrying ourselves to death about the most normal thing in the world. Worrying accomplishes so little.

When I was a college freshman, I interviewed my great-grandmother (born in 1884) for a cultural anthropology project. She talked about living on a small farm, nursing her 12-year-old son through the Spanish flu, baking and slaughtering and canning and drawing water–life before rural electrification. She said:

Times was hard, but times is always hard, and our lives were no harder than anybody else’s.

Orpha Ann Parrish Smith

Good to keep that in mind at present.

My temperament has always tended more melancholic than anxious; but in these days of covid, flu, and concerns about my bereaved and elderly mother, worried thoughts arrive, especially in the wee hours, especially as cases climb upward in my region and my mother’s assisted living center starts yet another lockdown. I try to imagine the changes the extreme elderly experience…I imagine her being ‘assisted’ by caring, gentle people she does not really know and with whom she can barely communicate due to anomia and aphasia, which makes her grief for my father truly inexpressible.

“I can’t say anymore what I say,” she tells me by phone. “On the wall, it says, what is it? Now?”

“The calendar? It’s Tuesday, Mom.”

“No, the other. The…weather. Season.”

“Oh. October. It’s October.”

“How is it? And I am trying…when was it? That he died?”

“August, Mom. August 25th.”

“Has it been since August? Was it August? Already? So many now. Many…pills. No, ice. Ices gone by. I don’t mean that. I said–“

“Many days, I know. Can it really be October already? And he’s been gone since the end of August. Summer.”

“25. 25 days, August, October. How can it be?” she asks; and I can tell, over the phone, that she is shaking her head slowly the way she does, wondering, surprised, how can it be…

There are times she says exactly the right thing.

How can it be? Something I might want to meditate upon.

Unsettled sentences

One of those unsettled-weather days…rain all night, cloudy mild morning. I weeded the vegetable patch and made note of bean sprouts and zucchini sprouts, pea blossoms and strawberry blossoms.

Then, more rain, so I worked on some housekeeping and writing tasks indoors. I wrote sentences and thought about the loss of syntax and vocabulary.

~

Eastern Bluebird-4299_Laurie Lawler_Texas_2013_GBBC_KKThe day warmed and brightened. I harvested spinach, found more weeding to do (it never ends), watched a pair of bluebirds perch like sentries and swoop toward their nest in the magnolia tree. Fast-moving clouds morphed and swashed overhead. We had a sunshower, and I had a flashback to one of our son’s earliest sentences.

We were indoors on a day very like this one–he was not yet two years old. I was nursing his infant sister while he perched on a chair and peered out the window.

“Sun out, rain coming down!” he said. Observant, expressive (communicative), and properly syntactical (though missing the to-be verbs). A moment of major language development!

Also, cute.

~

I cannot visit my mother, whose aphasia worsens by the week. It hurts me to listen as she struggles to get her point across, endeavors to employ expression which used to come so naturally. Loss of vocabulary and syntax: unsettled sentences.

~

A funnier anecdote about sentences: our daughter’s first full sentence likewise made an observation about the environment around her. She pointed to a corner of the rug and said, “Look–cat barf, Mama!”

We rarely lose that urge to get our point across. Let us be listeners.