what happens when you don't know what's happening?
to mark the end of alzheimer's awareness month, healthing.ca's nicholas sokic remembers his grandmother, elizabeth o'brien, who passed away in 2017.
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as alzheimer’s awareness month wraps up, healthing.ca’s nicholas sokic remembers his grandmother, elizabeth, who passed away from alzheimer’s. about six years ago, i visited my grandmother at the westbury long term care home in etobicoke, ontario. i had read about how music can positively impact dementia patients, and so i had brought along my ipod loaded with johnny cash and elvis presley songs from her era.with my mom watching expectantly, i queued up some songs and pressed play. i, at least, was expecting a miracle cure. we asked if she knew who we were.“no.”we were crushed. but, she continued, pointing to her head.“i don’t know who you are in here.”then, she pointed to her heart.“…but i know who you are in here.”a flicker. brief, bright, then gone. when your loved one is suffering from alzheimer’s you take what you can get.elizabeth o’brien was born on july 28th, 1923 and died on november 25th, 2017. in between her birth and death, she was adopted by a soldier and a nurse, grew up on a farm in nova scotia, moved to ontario and went back to school to become a nurse herself. she was twice widowed, raised five children, nine grandchildren and eleven great-grandchildren.her battle with alzheimer’s disease robbed her of those memories, the stories and growth that go with them as well as any chance the rest of us had to ask her. a long time before her actual passing, she lost the ability to regale with tales of her visits to ireland or of the grandfather i never knew.in some ways, illness carries with it a heaping of humble pie, a reminder of our tenuous existence. you could, for example, choose to take from your diagnosis a reminder of the value of every day. it could otherwise be noted that you faced death with a brave retrospective. not so with alzheimer’s, a disease that isn’t content to just take your dignity, but, through a series of increasingly larger thefts, your agency as well.there is no journey, only a descent, because there is no ‘you.’
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elizabeth with my grandfather milton (left) and her brother-in-law father john o’brien (right) sometime in the ’50s.
by the time i was in the tenth grade, we had moved elizabeth out of her apartment and into my aunt’s. i spent many fridays looking after her just to give my aunt some free time.we watched i love lucy on dvd over and over. during bits of levity, we would talk about how school was going. a few times, she tossed on a jacket and left, either saying she had to go see her dad or that it was time for her to go to work. she would usually make it to the next block before i was able to convince her to return.according to the alzheimer’s society of canada, january is alzheimer’s awareness month. my family is, unfortunately, acutely aware. elizabeth was just one of the over 564,000 in canada that are living with the disease, but that number doesn’t include the families, friends and caregivers on whom it takes just as significant a toll.i wasn’t with elizabeth when she died. the last time i saw her was a week prior, when i was told to come home from university because “it’d be any day now.” at this point, she had forgotten how to swallow, and had an oxygen tank hooked up to her room at westbury.since elizabeth couldn’t talk, my sister, mom and i took turns holding her hand and doing the talking for her as she fell in and out of sleep. once, before drifting off, she squeezed my hand with her characteristically iron grip and looked right at me. during that particular sleep, she had stopped breathing, and we all thought that was all there would be. when elizabeth’s chest rose again, we were relieved to be given more time with whatever was left of my grandmother.was that squeeze and that look a final moment of clarity? elizabeth trying to communicate what she could no longer do in words? probably not. but for me and, i suspect, many others, it’s comforting to believe.more information on alzheimer’s and dementia can be found here.
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