Out of the Shadows

This year’s Academy Awards made it official. Alzheimer’s disease has gone mainstream. When Julianne Moore picked up the Best Actress statuette for her performance in Still Alice, it was the evening’s second nod to art made from the tragedy of Alzheimer’s. “So many people with this disease feel isolated and marginalized,” she said in the acceptance speech for her role as a professor stricken with early-onset Alzheimer’s. “One of the wonderful things about movies is it makes us feel seen and not alone.”

Before Moore received her golden hardware, country singer Tim McGraw delivered an emotional performance of the Oscar-nominated song “I’m Not Gonna Miss You,” from the documentary on Glen Campbell about the ravages of Alzheimer’s. He wrote it when he still understood that eventually he would not remember his loved ones or recognize their distress as they watched him descend into oblivion. The family chose McGrath as Campbell’s stand-in – with his disease at Stage 6, he could no longer perform.

It reminded me of the time, back in the 1970s, when the taboos surrounding breast cancer were shattered. The effect of then First Lady Betty Ford speaking publicly about her 1974 mastectomy was transformational. Soon after, NBC correspondent Betty Rollin wrote the ground-breaking breast cancer memoir First You Cry. Suddenly, everyone was talking about something that had only been whispered. It opened the way not just for awareness and understanding but also for more research and better treatments and ultimately huge gains in survival.

The hope is that the new openness about Alzheimer’s will bring the same kind of progress. And those who suffer from it are not the only ones needing help. According to the Alzheimer Society of Canada, for every patient there are two or more family members providing personal care. In economic terms, it adds up to 444 million unpaid hours of work, or $11 billion in lost income and 230,000 full-time jobs.

The emotional damage is harder to tally. But caregivers – often elderly themselves – are stressed, stretched and exhausted by the escalating needs of their loved ones. It seems like a relentless grind, but journalist Joan Sutton gives us the more positive side in The Alzheimer’s Diary. She cared for her husband of 33 years, Oscar Straus, for seven years before his death from the disease, and her view of her role underpins her attitude.

“I use the word caregiver now but I don’t think I ever applied that to myself,” she told me. “It was just a continuation of the marriage vows, in sickness and in health.” She has a particular view of what she calls the parallel universe of Alzheimer’s: “the one who forgets and the one who is forgotten.”

Rather than focusing on the pain of being in the latter group, she found strength in the memories, even as they receded from her
husband’s consciousness.

I would have expected her to be relieved when Oscar finally passed away. Sutton herself expected that. It marked the end of a very difficult and lengthy process. She had spent every day with him for all that time as their world became narrower and narrower. Instead, the emotions she was left with were quite different. “I was rootless. I had no purpose … I missed the caregiving. I missed getting up every day and knowing that I was useful and needed.”

Nearly two years later, she is still grappling with the emptiness and the grief. But she says she feels fortunate knowing that taking care of her husband is the one thing in life she did really well.

To me, that sounds strange coming from an accomplished career woman – particularly one who became successful at a time when it was much more difficult for women. But Sutton sees that time as her finest hour. “It is a joy to me to know that, and that is what I call the beauty in the duty.” http://credit-n.ru/offers-zaim/vashi-dengi-zaim.html http://credit-n.ru/credit-card-single-tinkoff-platinum.html http://credit-n.ru/offers-zaim/denga-zaimy-nalichnimi.html

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