*
*
He has his pull-ups on.
I’ve shaved him. (It’s fun.)
He’s got just one hearing aid.
Lost the other one.
He’s had his breakfast,
taken his pills
brushed his teeth.
*
“Where are we?” he says.
I tell him again.
*
“I’ll be here when you get home,”
I say.
“You don’t need to call me.
You’re safe.”
*
I send him out to the van.
Watch him climb in
wipe away familiar tears
like a mother.
*
*
Gait apraxia.
Two new words have sneaked into our house.
Commonly seen in vascular dementia,
gait apraxia
is that shuffling walk
as if feet are stuck to the floor.
*
The neurologist tossed the two words
into the air, casually,
but I caught them phonetically
in my notebook
and looked them up later.
*
No cues or modeling or suggestions help.
He can’t change how he moves,
so says Sciencedirect.com
We go for walks, and he shuffles along
behind me.
*
Before gait apraxia came in the door,
I would say,
“This isn’t exercise! Walk faster!”
“I can walk you into the ground,”
he’d reply,
lagging further behind.
*
Gait apraxia isn’t alone
in taking up residence.
We have anxiety
wringing its hands in the corner.
We have incontinence in paper diapers,
hanging around the bathroom.
But table manners left for the south,
forgetting to close the door.
*
*
Sometimes
doing the same thing every morning is safe and familiar.
Sometimes
saying the same thing every day is like putting on a lead coat.
Sometimes
returning dirty dishes to be rewashed, I wonder, “Is it worth it?”
Sometimes
I am mean and impatient and full of guilt.
Sometimes
I see that I live in great comfort.
Sometimes
I think evil thoughts.
Sometimes
his warm hands on my feet are all I have.
*
*
They say, put him in memory care.
You need to, they say, it’s too hard.
You have no freedom. We see your misery.
*
Someone recommends a place.
Her friend’s sister is a resident there.
I make an appointment for a tour.
*
A long driveway, wide trim lawn, a pond.
a ten-gallon fish tank burbles in the lobby.
The walls need paint.
Brown streaks the bathroom door.
A peek into a private room:
all roses and chintz and lace curtains.
*
An Asian man sits alone in the dining room,
behind a transparent plastic screen.
His expression is blank, distant.
Two men slump in the TV room.
Two women play Scrabble.
*
A walnut-faced Italian woman in a wheelchair,
fingers like roots, complains,
I didn’t have my breakfast!
A bit of egg sticks to her pants.
She says, I wish I were dead.
Where do I go now?
*
The walls leak loneliness.
They are all waiting.
Will someone who loves me come?
Does anyone know me now?
Who remembers my story?
Will tomorrow be the same as today?
*
*
*
Not long ago, I was listening to a podcast when this phrase, ambiguous loss, came up. I’d heard it before but had forgotten that such a predicament had been identified and given a name. Now here I am, six years into caring for my husband with vascular dementia, still struggling with the same ambiguity and loss.
For those unfamiliar with the term, “ambiguous loss” first appeared in the work of psychologist Dr. Pauline Boss. “Ambiguous loss can freeze the grief process.” says Dr. Boss, “People can’t get over it, they can’t move forward, they’re frozen in place.” ( https://www.wellandgood.com/how-to-deal-with-ambiguous-loss/)
Boss first studied families whose members were pilots missing in action during the 1970s Vietnam War. Ambiguous grief could occur when a family member was physically absent but psychologically present, in cases of military MIAs, divorce, desertion, or miscarriage.
The same ambiguous loss may occur when the member is physically present, but psychologically absent, as with chronic mental illness, dementia, traumatic brain injury, or addiction.
These days, my husband is unrecognizable as the man I met eighteen years ago. I try to recall his personality, his presence, and way of being in the world from that time, and I can’t form a clear picture. He is present in body, slower but still healthy for his seventy-four years. Except he needs so much guidance, so much supervision, so much of my mental energy.
I have passed through many emotions in six years. For a long time, I was enraged. My imagined future, the travels, the freedom of movement, the solitude so necessary for an introvert like myself, evaporated like a puddle after rain. I grieved for those losses, too, and the companion I no longer had.
Only recently, I realized that there were some bright sparks in this life his illness has imposed on me. I can work on my creative projects with little interference. I’ve established a daily routine that works for me, making only two meals for us each day. We have our regular activities with friends. Despite the burdens, these adaptations lighten my load.
Boss recommends ways to cope with ambiguous loss. I’ve done all of them.
Here they are:
Five tips for coping with ambiguous loss:
Are you a caregiver? Have you any additional tips for those of us dealing with ambiguous loss? Send me a comment.
*
In the pantheon of Hindu gods, Hanuman is the deity with a monkey body. He is the devoted servant of Ram (Rama), an incarnation of Vishnu. Vishnu (if you’re following this) is one of the main deities of Hinduism. As part of the Hindu trinity (Trimurti), Vishnu is the Preserver, Brahma being the Creator, and Shiva, the Destroyer. Rama, as Ramachandra, is the seventh incarnation of Vishnu, the embodiment of chivalry and virtue. And Hanuman is Rama’s servant.
Why am I writing about Hanuman? In the legends that recount Rama’s heroic adventures, Hanuman plays a significant role. His devotion and service to his lord is unwavering. In a peculiar way, Hanuman serves as a model for me in my daily struggles to care for one man with dementia, my husband of almost eighteen years.
Perhaps Hanuman’s most famous heroics appear in the Ramayana, an epic tale of good versus evil. The demon Ravana kidnaps Sita, Rama’s wife. Hanuman discovers where Ravana has hidden Sita and tells Rama. In the ensuing battle between Rama and Ravana, Hanuman destroys several demons and then brings Rama’s brother back to life. Hanuman is the ultimate devotee, willing to risk everything to serve Rama.
I am no Hanuman. Surely the monkey god never gripes about his situation. We never hear him say, “This is not the life I would have chosen,” or “When do I get some me time?” or “I need a break!” Unlike me, Hanuman never complains. He probably never has a bad day.
He is, however, someone to emulate.
In the morning, while I do yoga, I like to listen to Krishna Das’s album Flow of Grace. This is a collection of six versions of the Hanuman Chalisa, a devotional chant to Hanuman. Here’s one to listen to:
https://www.youtube.com/watch?v=IJGV9h2AZ0s
Though I am far from embodying a model caregiver, I look to Hanuman as a reminder that service to others is a virtue.
Once
you put on a jacket when it was cold
you took a shower before you got dressed
you made your own breakfast
you knew which shoes to wear.
Once
you built shelves
you repaired the washing machine
and the lawn mower
you fixed the muffler on my car
with a soup can.
Once
you commuted to your office
to help people
you had things to do.
Once
you were someone
I didn’t have to remember.
Tonight I am exhausted from remembering.
From being the memory.
It started at 5:00 yesterday evening.
I made us dinner.
He was not to supposed to eat after 6:00 pm,
preparing for today’s endoscopy.
No food after 6,
no liquids after midnight.
I put tape across the refrigerator door.
I wrote NO FOOD on the tape.
I brought him into my sacred space
so I could make sure he didn’t eat.
He sat on the day bed and did crossword puzzles.
I painted with watercolors.
After a while, he got up.
Where are you going? I asked.
Twice.
“To get a snack.”
Again
I explained that food was forbidden.
He was NOT happy.
I wasn’t about to stay awake all night
to keep him from drinking water.
I just hoped it wouldn’t matter.
No breakfast made him grumpy.
More explanations about the endoscopy.
He sat in my workroom
while I wrote a blog post and sewed.
The morning dragged.
Finally we drove to Kingston.
We were early.
They were 45 minutes late.
“We have a line of colonoscopies,” she explained.
I laughed at the image.
He wanted me to come with him—
the man who insists he’s not anxious.
They said no.
Not enough space to maintain social distancing.
I sat in the car.
Waiting.
Listening to an audiobook
because I forgot my handwork and my iPad.
Someone came out to get me.
“He’s sitting up in the chair,” she said.
He was woozy.
“What did they do?”
I explained again.
“What’s this?”
He showed me the green tape on his arm.
This man who is so big in my sight
because he takes up so much
of my thoughts and care and energy—
this man suddenly looked small
and muddled,
dwarfed
by the oversized recliner chair.
Sometimes caregiving for a person with dementia becomes so difficult and absurd that the only possible response is— laugh.
Yesterday, I was cleaning out files. The box of paper to be recycled was overflowing. My husband wandered upstairs to check in.
“Can I do anything to help you?” he asked, as he often does. (I am blessed with a sweet-tempered, cooperative demented person, not like some caregivers who deal with belligerence.)
“Well, yes,” I answered. “I need a large garbage bag for these papers.”
“Where are the bags?” he asked. (Are you paying attention? Most spouses would know where to find the garbage bags.)
I told him, “In the cabinet to the left of the sink. They’re in a box under the medium sized bags.” I illustrated the size spreading my arms. “About this big.”
He turned to go on his errand. Stopped. “What am I getting?”
“A large garbage bag.”
“Where are they?”
I told him again. (By this time, I’m already thinking I should go get the bag myself. But he wants so badly to be helpful.)
He made little grunts as he went downstairs–his arthritic knees complaining.
He was gone a while. I moved on to thinning out the notes pinned to my bulletin board.
He came back holding—
three packages of snacks!!
Chip Ahoys. Cheddar rice cakes. Fig Newtons.
“Is this what you wanted?” he asked.
I looked at the snacks. I looked at his face. This dear man, who tries so hard, who vehemently denies his condition. (“I don’t believe it,” he says.)
What could I do? I laughed and hugged him hard and long.
Then I took the snacks and went downstairs to get the garbage bag.
Caregiving is challenging. That’s why I value my caregiver group. We Zoom twice a month. These are the women who understand. Who often can offer resources to assist with a problem.
Here are two excellent resources for caregivers:
Ulster County Office for the Aging 845-340-3456
1003 Development Court, Kingston, NY 12401
Alzheimer’s Association
800-272-3900
Tangled Magic 