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Posts tagged ‘memories’

The Calm after the Storm

I broke down in the supermarket the other day, in the greeting card aisle, looking at Rosh Hashanah cards. This will be the first year I observe Jewish High Holy Days without either of my parents. Just seeing the cards wishing peace and a healthy year to come tore me apart.

Other things unexpectedly lance my gut – the scent of coffee as both my parents could not face the day without a cup or two. The sight of the ocean as we’d lived near the Atlantic on the New Jersey shore or the Pacific in both Hawaii and California. The chirping, twittering sounds of birds as my dad ushered us through rain forests and woods, identifying avian species. The feel of hot wind against my skin, recalling the clutch of Alabama’s unforgiving broiling weather when I lived there as a kindergartner. Pierced constantly, I bleed all over the place.

I look at a pink blouse in Macy’s, thinking how much my mom would like it, maybe I should… then it comes back to me – no need to buy it for her. The same effect on spotting a new crossword puzzle book at CVS, solving puzzles together a favorite pastime when she was alive. The Alzheimer’s that held her in its long noose for so many years is finally over – she passed in late March. Still my emotional pain is ebbing – mom is no longer in the horrific physical pain that stalked the last year of her life, and that’s a good thing. My blood stanches.

I dreamed of my parents standing next to each other, gazing at the Pacific. Their last home was a condo that overlooked the ocean, nothing in front of their window but train rails along the beach and the swelling turquoise sea. My dad had one arm around my mom, the other around me, united again at last.

I know our dreams are personal manifestations of the world as we experience it, filtered through our sleeping subconscious mind. Still, I felt tranquil in that moment, knowing I had done everything I could to care for my ill mom in a way my dad could accept after he died nearly ten years ago. I believe in the survival of the soul – my dream might be a message from the world to come, from the sacred essence that survived the deaths of their corporeality.

Over the last decade, I’ve had a loving, supportive family holding me up. A son and daughter-in-law moved aside like cars in the way of a fire truck, allowing me respite with their two children. My grandchildren, who loved their great-grandmother, not realizing she was ill. She was their Gigi, and they accepted her quixotic inability to remember their names, always knowing she would shower them with kisses and hugs. My grandchildren softened the shredded edge of my worries with play, stories, and antics that allowed me serenity.

Another son and daughter-in-law, living far from us, knew when I needed a phone call. The cell tower network (we are so very fortunate to live in an era of global communication access) leap frogs hundreds of miles so I could contact our two youngest grandchildren. I listened to their baby talk until their babbling chatter over the years became words, then sentences, and finally full throttled conversations about dinosaurs, gymnastics class, and the funny bugs in the yard. To be immersed in such presence is a holy moment.

My husband put up with my despair and commiserated about the injustice of a disease that dismantled my mother’s social and logic skills. He endured me fuming about the legal, health, and financial worries that woke me in the middle of the night like lions hunting on African grasslands, the threat of attack imminent. A husband who visited his mother-in-law without a prompt from me, always with a fresh bouquet of blooms to remind her that she was someone important to him, even when she no longer had any idea who he was. He soothed me back to sleep.

Friends inflated a flotation jacket around me, keeping me from drowning. Some are people I’ve known forever, living near enough for a hug fest, others only close enough for a sobbing phone call late at night. My friends are a bulwark of ears and shoulders, one limb to turn my verbal outrage into sense, the other a net to catch my emotional free fall. Many are family members of other sufferers of Alzheimer’s. We are an alliance of wisdom and folk stories about how to limit the devastation of the disease, both the physical impact on those who are ill and the emotional toll that forces family into no man’s land. All of it is about loss, confusion, and righting a leaky craft. They remain steadfast for me as I do for them.

Alzheimer’s is a shipwreck foundered on alien shoals. But I am learning to jump ship, skip the waves, and wade in the shallows. To smile. To sleep through the night. To feel the consolation that my parents’ long journeys are over, that mine will be an easier trek each new day. There is laughter again, friendship, love, family, and calm after the storm.

 

Note: I’ve written a novel, Where Did Mama Go? about the devastation Alzheimer’s disease inflicts on families. It’s in the process of being edited, and then I’ll start querying for an agent to represent my work. My credentials for writing this story are eighteen years of assisting my mom through the labyrinth of this illness.

 

Image of California coastline courtesy of Pixabay

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To Grandmother’s House We Go

We’re trying to get to Grandmother’s House. We’re trying to take her home, even though she’s lost.

Those of us who love and care for our family members who suffer with Alzheimer’s disease know that when they say they want to go home, it’s unlikely to be the last place they lived. Because they probably can no longer remember that more recent place, and taking them there may instigate even more despair for everyone. Grasping their desires is a moon shot from making them content. They want to go back to when they were seven and felt safe with their parents; to when they were sixteen and flirting with independence; to when they were twenty-four and exploring young adulthood; to when they were thirty-two and involved with marriage, children, and mortgages; to when they were fifty-eight and celebrating the birth of a first grandchild, a  child’s marriage, another’s college graduation; to when they were sixty-four and enduring their final career years; to when they were seventy-eight and Alzheimer’s knocked down all the retirement ideas they ever thought possible. All of their life collapsed like a block tower that can’t be rebuilt.

The holiday season arrives wrought with expectations and memories that tangle our celebrations by not meeting our high hopes. No matter how much we declare not wanting presents, parties to attend, and over-the-top fashions, if we’re caring for someone who is ill, we’re likely to have our plans changed, our hopes derailed, and at least one event cut short by a crisis. Tears, anger, aggression, bathroom accidents, bathroom refusals, eating problems, repetitive motions and comments, sleepiness, anxiety, total confusion – they all show up like a beggar at our feet. It isn’t Grandmother’s fault. It can’t be, because someone ill with Alzheimer’s is no longer in charge. The disease is in charge – peculiar and heavy handed, blistering with fever and glittering with promises that can’t be kept. I hate you, they say, I love you. You must not love me or you wouldn’t leave me here. I want to go home. And we, the accused, we cringe and cry and dig our nails into our hearts. We have to leave you here at this assisted living residence because we no longer have the strength or skills to care for you “at home.” Their home, our home, someplace other than the residence where they reside – we can’t.

My friends and I discuss whether or not we’re bringing mom (or dad or our spouse) home for the Christmas Day gift exchange or lighting the Chanukah menorah. If we’ll instead replicate the event at the residence where they are cared for by professionals, then abide the guilt of the empty place at the table, the missing voice of the blessings. Can we enjoy the home celebration when they aren’t there, the absence painfully obvious but so much more sane because they aren’t? Will the rest of the family blame us for their inclusion or exclusion? Will extended family support our decision, knowing we’re crying either way?

We do what we can to reconstruct the holidays and celebrations of the times when we were younger and our loved ones were healthy. Some create second weddings so dad can be present because he couldn’t attend his daughter’s nuptials in Arizona. Others arrange for a caregiver to bring grandma to three hours on Christmas morning so she can see her great-grandchildren unwrap gifts. I’m facilitating a Chanukah dessert party at the place where my mom lives, for her, the other Jewish residents, and anyone who wants to stop by for a cookie.

We put together albums with name tags on the photos so our loved ones whose minds are drifting in and out of reality can identify their spouses, their kids, their closest friends. We collect mementos for the shelf in their room, things they can hold and turn in their hands – the carved shell from the anniversary trip to Hawaii, the bronze award for signing the most contracts twenty years ago, the lifetime membership pin for the service organization to which they’d devoted so many years of altruistic fervor.  We coax them to recall names even when they forget them ten seconds later. Even when they are our names. Even when it’s hopeless.

These are the waning years when their moon has left its natural orbit and traverses an alternate route through space. We try to fill their mutilated minds with lifelines and safety nets and touchstones, hoping for memories to be lastingly imprinted. But it is only on our memories they’ll survive, and we wearily know that too, the failures of all our efforts. My mom’s brain will continue to retract, to default to a younger and younger self as she seeks familiarity.

And I’ll find solace in my memories of the occasions when we all gathered to light candles and say blessings for the wealth of our lives. When Mom was well a very long time ago, when my dad was with us. We take our ill loved ones to Grandmother’s House wherever it might be, and there we wait, praying for a few moments of shared joy and the flicker of recognition that makes all the work worthwhile. See you at home, Mom, see you at home.

 

 

Note: I’ve written a novel about the devastation Alzheimer’s forces on families. It’s in the process of being edited, and then I’ll start querying for an agent to represent my work. My credentials for writing this story are sixteen years of assisting my mom through the labyrinth of this illness.

 

Image courtesy Pixabay