The soli­tary life of the de­men­tia suf­ferer

It seems cruel that a per­son who has en­joyed vi­tal life, must en­dure this fi­nal state

The Hamilton Spectator - - COMMENT - PENNY GUMBERT

I never heard her raise her voice. Was it be­cause she was too shy to think she had a right to be loud and an­gry?

Maybe so, but more likely it was just be­cause she was kind-hearted. Her own child­hood didn’t pro­vide the best fod­der for de­vel­op­ing pa­tience, yet she did. As a mother of three she likely had lots of op­por­tu­ni­ties to shout but, no, that just wasn’t how she did things. With her friends and fam­ily she was gen­tle­ness topped up with gen­eros­ity. With the rest of the world she was mod­est, putting oth­ers first with a cheer­ful coun­te­nance, curly blond hair and a beau­ti­ful smile.

Her tal­ents were many. She ex­celled at school, es­pe­cially math, and her high school teach­ers tried to talk her out of quit­ting school to go to work, but back then in the 1940s that was what girls did. She never dis­ap­pointed a boss, es­pe­cially when it came to book­keep­ing. When she did some­thing she did it well, be it busi­ness de­mands, do­mes­tic chores or cre­ative arts. Her hus­band al­ways worked long hours, be­ing part of a fam­ily busi­ness, so it was she who wall­pa­pered and painted and dec­o­rated their home, then helped other fam­ily mem­bers when they were start­ing out. She sewed many of her own clothes, one out­fit I es­pe­cially re­mem­ber, a mid­night blue taffeta dress with a draped neck­line that made her look like Mar­i­lyn Mon­roe. She’d styled it first us­ing a ‘judy’. I’d never seen a dress form be­fore and she showed me how to ad­just the model to my di­men­sions. Two weeks later I re­ceived a sur­prise, two out­fits made by her. They fit per­fectly.

Her home was her haven, a nest for her fam­ily, where her nieces and neph­ews were wel­come and where she moved her mother in when the need arose. I never felt I had to knock on the door be­fore com­ing in to find gig­gling chil­dren, food be­ing sam­pled in the kitchen or fam­ily mem­bers gath­ered around the TV watch­ing soap op­eras. She used her busi­ness ac­u­men in the fam­ily busi­ness and later started her own busi­ness run­ning an an­tiques booth in a lo­cal flea mar­ket. Paint­ing as an art form rather than a decor tac­tic con­sumed her time too, her work re­flect­ing her gen­tle and bon­nie na­ture. This was a tal­ented, vi­brant and kind woman with lots of get-up-andgo who never did any­thing wrong.

Now she shouts. Loudly. She is re­ally an­gry. There is no smile, just a con­tin­ual frown of fear and, some­times, puz­zle­ment. Her hands are unoc­cu­pied un­less they’re try­ing to undo the belt that keeps her in the chair. She is in­car­cer­ated, with the in­sti­tu­tions’ hours for meals, ex­er­cise, and sleep rul­ing her life. She re­lies on oth­ers for the ba­sic ne­ces­si­ties of life, whether she likes them or not. Usu­ally not, go­ing by her mood. No in­ter­ests fill her days now, only the chair and a bed and long hall­ways. What was once a lovely woman now shouts ag­gres­sively us­ing swear words that shock and star­tle. She an­grily ques­tions our iden­tity when ap­proached. She has a rea­son. She must as­cer­tain first if we are ‘the en­emy’, part of the threat that be­lea­guers her ev­ery wak­ing hour. She is al­ways on the verge of tears un­til she suc­cumbs in deep sobs. Her slum­ber is deep, prob­a­bly drug­in­duced. This is not her. She isn’t who she was.

For most of their mar­ried life she and her hus­band and their chil­dren lived in a lovely lit­tle home with grapevines and toma­toes grow­ing in the back and two beau­ti­ful blue spruce in the front yard. Those spruce con­tin­ued to grow for more than 80 years, as did she, reach­ing to the sky with all man­ner of pos­si­bil­i­ties. Their trunks went on for­ever as the spruce nee­dles, way up high, tick­led the sky. Last month I drove by and the trees had been struck down by chain­saws. Over­all, the best so­lu­tion. The kind­est so­lu­tion.

Mean­while this most con­sid­er­ate of women, felled by de­men­tia, is trapped in a life nei­ther she, nor those who love her, would have cho­sen. She is to­tally out of her depth, as were her care­givers at home. Is this the an­swer? Re­ally? Why must she end her life serv­ing a sen­tence of soli­tary con­fine­ment, tor­tured by fear, drown­ing in de­spair and de­praved by con­fu­sion?

She de­serves as much as the spruce that once stood guard over her home. It would be the kind­est cut of all.

Penny Gumbert is a free­lance writer who lives in Stoney Creek. While the sub­jects of this com­men­tary are anony­mous, the story is true.

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Penny Gumbert writes of a de­men­tia vic­tim: ’Why must she end her life serv­ing a sen­tence of soli­tary con­fine­ment, tor­tured by fear, drown­ing in de­spair and de­praved by con­fu­sion?’

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