That Damned Alzheimers

by Eileen Pedersen, Trail, BC

The phone rings. “Mom’s doctor said she shouldn’t be driving; we canceled her car insurance.” I scream inside: she’s not that bad!! She just had a little accident…it could happen to anyone! But it is not my decision–she is my sister, not my mother. She was so proud of that car and loved to drive, –like a bat out of hell sometimes. And now she is losing her independence—the first major blow. It feels like the beginning of the end.

Her name is Lilliana; it’s 2014 and she’s my 79 year old sister. I’m heart-broken. I love my sister so much and we’ve become especially close the last 6 years. Her daughters invite me to be part of her care team. I’m determined to advocate for her happiness and well being.

Lil begins to attend a local facility’s “day program”. Eventually she needs help getting ready and I take my turn sleeping at her house. We talk, do puzzles, watch TV, or play her cds. I no longer ask if she wants her regular evening snack because I don’t want to give her the opportunity to say No. I just bring it to her and she eats it, mostly. I don’t ask if she’d like water. I hand it to her and she drinks. In the morning I sneak her meds out of the kitchen cupboard when she’s in the bathroom. I learn to gently suggest, cajole, and humour her into taking her pills and making her own breakfast until she no longer can: “I have one bowl of porridge, one fried egg, two toasts and coffee every morning” she tells everyone. I give her false choices just to have her make decisions and engage with me: “Do you want two toasts or three, Lil? “THREE??!! ARE YOU KIDDING?” “Well, you never know….you might be trying to gain weight!… Do you want the yolk soft or hard? Which jacket are you going to wear today?”

I soften my bossiness by speaking in Italian, swear words included, with the pronounced accent and lilt reminiscent of our family and Italian friends. She laughs and responds in kind. We sing ridiculous Italian ditties from childhood and we belt out traditional songs with our sister. Wednesdays I drive us to the facility’s dances. We’re from lively Northern Italian stock and we love a good time. We’re last to leave the dance floor. On weekends we take long walks and chat with the old Italian ladies out gardening. Gotta keep her working those muscles. Her name goes on the list for long term residential care. I hope the day never comes.

Maybe we can reverse this disease that’s ravaging this resilient stubborn pretty woman who raised five daughters. Who sewed and knitted for everyone. Who ran a deli business for five years, and read mystery novels and mafia histories. Who applied to a Chicago address to be a detective when she was 11. Who sang hit parade songs with me when she was 17….’an old cowpoke was riding out one dark and windy night…’ Who loves her home and having a houseful.

In 2008 she lost one daughter to cancer. Her husband died six months later. Lil is crushed. We all are. As she begins to adjust, she streamlines her yard—gets rid of all the grape plants and covers half the garden plot with grass, replaces the 1970s shag carpet (moss green) with hardwood, and reupholsters her 1960s chesterfield. ‘But Lil…it’s over 50 years old!” She will not be moved: “You don’t find couches like that anymore!!” She absolutely refuses to even paint the drabby brown wall paneling. No amount of ribbing makes a difference.

Lil enjoys these changes for a few short years. Watching her slowly slip away is heart wrenching. “Something’s wrong,” she says when the words won’t come. “It’s frustrating aye Lil?” I empathize and try and find the words for her. I respond to her repetitive stories as if freshly hearing them. “It’s not her fault. Don’t tell her ‘you already said that’. Let’s be thankful she’s still telling them.” We learn new ways of being with her….no sisterly bickering or mother-daughter conflicts. The quality of her remaining life comes into focus more and more.

The dreaded phone call finally comes: “There’s a room for her at the facility”. My heart sinks. I know it’s the best place for her because she now needs almost constant supervision. I anticipate her resistance at sleeping in a strange room, in a strange bed. We decorate her “apartment” with familiar family photos and afghans. We bring her cds and cd player. Her favourite books and magazines. We lie to her and tell her it’s only for a couple of days.

She returns to her house one night for a big family dinner and sleeps in her own bed. That was the last time. Once, she escapes the facility and is found heading towards town, probably going home.

She stops mentioning her home. We ensure she eats well and receives physiotherapy for her legs. She creates beautiful art and sings her Italian heart out with a “paisana” (friend) when we get them going. Now we push her wheelchair around the dance floor. She becomes quieter and gradually loses interest in activities. And one morning, February 17, 2019, our beloved Lilliana does not wake up. Her room fills with family. We sit with her for hours and tell stories. We don’t want to leave. But we do.

Last November, a medicine woman relayed a message to me from Lil: “Tell her I’m fine and not to worry about me. I’ll show her the ropes when she gets here”. I laugh and cry….sounds just like her.

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