FIRST PER­SON

Her de­men­tia-stricken mother’s fi­nal choice left Sheilah Spurr proud, not re­morse­ful, in the face of loss

The Globe and Mail (Alberta Edition) - - NEWS - Sheilah Spurr lives in Owen Sound, Ont.

Sheilah Spurr writes about her mother’s clar­ity of de­ci­sion that she was ready to go after fight­ing a long bat­tle with de­men­tia

My mother died early last year, after more than a decade of liv­ing with de­men­tia. She weath­ered it grace­fully, as she did most things in life. But the gift she gave me along this jour­ney to­gether, es­pe­cially at the end, is what makes me so proud to be her daugh­ter and has left me with­out re­morse and only deep ap­pre­ci­a­tion.

We all live and we all die. That is a cer­tainty. But what isn’t so cer­tain is that we will have the free­dom to make de­ci­sions about our qual­ity of life un­til the end.

I first took on the role of power of at­tor­ney for both of my par­ents’ phys­i­cal care eight years ago, when my fa­ther – who was my mother’s pri­mary care­giver, a role nec­es­sary be­cause of her de­men­tia – was hos­pi­tal­ized for 10 weeks.

My fa­ther was very ill and the hos­pi­tal health team told us he wouldn’t be able to re­turn home. We needed to look for spots in a re­tire­ment home for both of our par­ents. My sib­lings and I im­me­di­ately started to think about get­ting our child­hood home ready for an in­evitable sale and mak­ing pro­vi­sions to move my par­ents from their home in Burling­ton, Ont., to a re­tire­ment home 21⁄ hours away in my town of 2 Owen Sound, Ont., where I could keep an eye on them. But be­fore we could do any­thing – and with­out any warn­ing – my fa­ther dis­charged him­self from the hos­pi­tal, very weak and frail phys­i­cally, but res­o­lute and firm in his de­ci­sion to stay in his own home. So set was his re­solve that, al­though he loved his chil­dren un­re­servedly, he threat­ened to call his lawyers to thwart our at­tempts to up­root him and our mother. We were, in that mo­ment, his en­emy. We did the only thing we thought we could: We backed away and left them alone.

With the strangest of serendip­i­tous tim­ing, a bioethi­cist spoke at my work­place about the role of a POA dur­ing this same time pe­riod. He ex­plained that the role is not to act on what you feel is good for that per­son, but to act as they would if they were able to make those de­ci­sions them­selves – a sub­tle but im­por­tant dis­tinc­tion. It helped me feel bet­ter about not forc­ing my fa­ther to do what I wanted, and al­lowed me to view him with more un­der­stand­ing and ul­ti­mately more re­spect.

Un­ex­pect­edly, after just a few days at home, my dad saw the wis­dom of mov­ing to the re­tire­ment res­i­dence after all. I hoped he and my mom would de­cide to stay there, but after re­cu­per­at­ing for six weeks, they re­turned to their home. To all our sur­prise, they stayed there for an­other two years.

At that point, he started to suf­fer from min­istrokes. This time, we knew we needed to find out ex­actly what he wanted us to do about his de­clin­ing health. His wishes were clear and spe­cific. He said he did not want to go to the hos­pi­tal at any cost, al­though upon fur­ther ques­tion­ing we were able to gain more clar­ity on that point. For in­stance, if he were to have one of his strokes, he wanted to be left to lie on the couch with a tea­spoon of honey. This is not what I would want to do in that sit­u­a­tion, but it was his choice. On the other hand, if he were to fall and break a bone, then he would will­ingly go. With clear di­rec­tion, we were able to fol­low his wishes, of­fer­ing him the re­spect that comes with be­ing loved, val­ued and heard. Three weeks later, he passed away.

After my fa­ther died, de­ci­sions re­gard­ing my mother’s care fell mainly to me. Peo­ple with de­men­tia even­tu­ally be­come in­ca­pable of car­ing for them­selves in ways that are safe and healthy. I wanted to make sure she was both of those things, but I also looked for signs that she was still en­joy­ing her­self. My goal wasn’t to put her in bub­ble wrap, keep­ing her alive but away from life’s plea­sures. She couldn’t ar­tic­u­late her wishes the way my dad did, but if I watched and lis­tened with open­ness and re­cep­tiv­ity, she was loud and clear. When she moved into a new long-term care home, I paid at­ten­tion. I saw her not only set­tle into the fa­cil­ity, but thrive. She showed me she was happy.

In her last year of life, she slowed down. Ini­tially, I would play board games with her, try­ing to draw out the joie de vivre I had seen be­fore. She would hu­mour me for a while, then just tune out. But I un­der­stood that my mom was com­fort­able, which be­came my main fo­cus. I re­sisted the im­pulse to ca­jole her or as­sert more in­ter­ven­tion to en­gage her. I re­al­ized she was nat­u­rally re­ced­ing from life. I re­call more than a few times sit­ting with her, watch­ing cars go by, when she would turn to me and shrug her shoul­ders, as if to say, “Is that all there is? Now what?”

Her “now what” sen­ti­ment be­came more ap­par­ent. She didn’t look de­pressed or anx­ious, but she did look re­solved. Even­tu­ally, she wasn’t eat­ing or drink­ing much. I re­sisted the urge to send her to the hos­pi­tal to get re­hy­drated, an op­tion that was sug­gested to me. I didn’t try to push her to eat, ei­ther. She con­veyed my ef­forts would be in vain any­way when she de­clined ice cream, a food she pre­vi­ously de­voured in large quan­ti­ties.

In­stead, she just said, you have it. That was her gift to me. Not the ice cream, but the clar­ity of her de­ci­sion, even in her de­men­tia, that she was ready to go. I knew she loved me, and I loved her enough to re­ally lis­ten to her. She slipped away peace­fully, in her own time, in her own way. And I let her.

Her ‘now what’ sen­ti­ment be­came more ap­par­ent. She didn’t look de­pressed or anx­ious, but she did look re­solved.

IL­LUS­TRA­TION BY RACHEL WADA

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