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grouped in separate units within asuburban condo development . It looked reassuringly familiar from the outside , but visitors who stepped through the front door into the living room entered another world . Adozen well-tended seniors milled aimlessly , stared vacantly at the Hallmark movie on the giant TV screen , cuddled stuffed animals or played bingo with visitors . Cries of “ I want to go home !” were deflected by sympathetic but overworked staffers who knew that their default response , “ Your ride ’ s not till later ,” would beforgotten within minutes . Noone , including my dad , thought of the place as home . It was away station , and it was depressing to be there .
Over the following months , my dad started gazing into the distance , banging his fist on his thighs and angrily repeating the name of the street where he grew up , asiftrying to return to the place where he ’ dleft his true identity . Medicating him to be simultaneously calm and conscious was challenging , because chemical cocktails strong enough to soothe him tended to put him to sleep .
My mother sold her house , moved to alovely independent living community and settled my dad into the memory care unit down the hall . But the extra space , better food and manicured gardens outside his window didn ’ t lift his mood . If he wasn ’ t asleep , hewas scowling and muttering incoherently , a garbled protest against his fate .
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If he had known that the end of his life was going to be like this , would he have wanted his family to medicate him with sedatives and antipsychotics to the fullest extent , even if it hastened his death ? Would he have instructed usto withhold all medical interventions after , say , he could nolonger feed himself ? Could hehave told us that turning his head away from spoon feedings would mean he wanted nourishment to stop , and palliative care tobegin ? There ’ s no way ofknowing . Tobehonored , he would have had to have made his wishes known when he was mentally competent .
ADVANCE DIRECTIVES LIKE LIVING WILLS ARE ESSENTIAL
My dad did leave aliving will — a majority ofAmericans don ’ t give their loved ones any documented guidance about their end-of-life wishes — requesting that he not be intubated , put on aventilator or resuscitated after receiving aterminal diagnosis of six months or less to live . These stipulations made sense , but they only apply to seriously ill people in their final days . Alzheimer ’ sdisease is degenerative and irreversible , yet onaverage , takes three to eight years — even 20 — tokill its victims .
Formost people with AD , some of those years will hold moments of joy — being present at school graduations , weddings , births , retirements . Savoring a
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melting sunset or acreamy panna cotta is nothing to sneer at . But having a measure ofcontrol after dementia takes hold requires planning .( Many states now have Medical Aid in Dying Laws , but physician-assisted death is only an option for the terminally ill who are of sound mind when they make the decision .)
Iintend to tell my loved ones what Iwant face to face , onvideo and in a written advance directive I ’ ll download from my state government website or an advocacy group such as Compassion & Choices . Many of these forms present hypothetical scenarios users might not have thought of , such as whether they would want to take part in clinical trials or if , under certain circumstances , the directives should be revoked .
My father was alifelong subscriber to the local symphony , and when he had all his faculties , had often said that life was worth living “ as long as Ican listen to opera .” Inhis final months , though , it was apparent that having “ The Magic Flute ” playing on the radio and listening to it , which requires an attentiveness he no longer had , are two different things .
Iused to be in my father ’ s camp — believing that any sensual pleasure I could derive from hearing rock-and-roll or eating gelato made living worthwhile . But he showed me how those moments can ’ t compensate for the rest of aday ’ s 24 hours when they ’ re full of distress . I ’ m sorry he suffered , but I ’ m grateful for the lesson . n
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PROVIDED BY CINDY SCHWEICH HANDLER |
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30 2024 EDITION ( 201 ) HEALTH |