Friday, May 26, 2017

‘She held everything together’

Dementia is usually a languid condition, often meandering along for well beyond a decade. But there are exceptions, as Marissa Bresnahan can attest. Now a staffer at the Massachusetts-New Hampshire chapter of the Alzheimer’s Association, Marissa has witnessed her mom’s stark decline over the past four years. When Marissa and I discussed her mom, Tina, the portrait that Marissa depicted of her mother bordered on Supermom status. For three decades, she worked as a pharmaceutical representative. She raised five children, all boys, with the exception of Marissa. And her children-rearing went beyond her own kids.
“She was always taking other children into our home,” Marissa recalled. “She was very generous. There was constantly a gaggle of kids coming in and out of our house.” When I suggested that Tina had achieved Supermom status, Marissa agreed that the term was apt. “She was the nucleus of our family. And not only the family. She held everything together. Everyone loved Tina.”
Marissa was the first member of the family to notice that something was wrong. She was a freshman in college, and when she came home that Christmas, Tina had recently suffered a  pulmonary embolism. “It was a big deal. She was on blood thinners. I was really freaked out.” It was then that Marissa started noticing changes in Tina’s personality. “Maybe it took me to go away to college to see the change.” Marissa added: “She was always funny and had a mouth like a sailor, but now she started to be cruel and inappropriate in some of her comments. A stranger would walk by, and she would say, out loud, ‘that woman needs to lose weight.’ And, ‘How can she stand to be that fat?’” But everyone else in the family tended to attribute Tina’s problems to the embolism.
During Marissa’s remaining years in college, her mom’s condition steadily declined. Previously, Tina had had an astute sense of fashion. Now, for mysterious reasons, she was cutting her hair with a pair of kitchen scissors. “I said to my four brothers and my dad, “Mom’s acting like a crazy person.” But the brothers suggested that Marissa was overreacting. One of the brothers suggested that Tina was going through menopause. Marissa’s response: “I’m not going to blame this on gender roles.”
As is common with dementia, getting a diagnosis can take time. During her senior year in college, Marissa came down with mononucleosis, and Tina arrived with a bowl of  turkey meatballs. At that time, Marissa was not eating red meat, to set an example for her dad, who had been advised to eat more wisely. Tina was insulted that Marissa wouldn’t eat the meatballs. She chose to freeze them. Every day, her mother would call and ask, “Did you eat the meatballs? Did you eat the meatballs?” Even after Marissa ate the last of the meatballs, Tina kept asking about them.
At that time, Tina was still driving, but erratically, sometimes ignoring stop signs and traffic lights. The Bresnahan family is based in Pennsylvania, and during  a road trip to New York she drank  almost two bottles of wine—this for a woman who is only five-foot-one. She ended up vomiting on herself. She had no history of binge drinking. Around this same time, Marissa informed her brothers, “Mom’s acting like a crazy person.” But her brothers claimed that Marissa was just being mean. “And that I didn’t know what I was talking about.” One of the brothers suggested that Tina was going through menopause. Marissa rejected the notion.
Tina had had an MRI a few years earlier after a concussion, and in 2013 a new MRI scan had detected some shrinkage in her brain. This time, the diagnosis was much more ominous: frontotemporal dementia, a form of dementia that tends to be more severe than typical Alzheimer’s disease. Marissa happened to be living at her parents’ home at the time, and she was the only one available to drive her mom to the appointment. She recalls, “I wasn’t expecting much. I rolled out of bed in sweatpants.” Tina’s reaction was, “Okay, that’s good to know.”
During my conversation with Marissa, I suggested that she and her four brothers would be at low risk of following in their mother’s footsteps. One online source states that somewhere between 15 percent and 40 percent of frontotemporal dementia are based on a gene mutation. Does frontotemporal dementia run in families? In some cases, yes. For large families like the Bresnahans, there may be cause to be concerned. As Marissa put it, “Every time I forget something, it panics me.”
           But she shouldn’t. Few researchers are claiming a major breakthrough is just around the bend. But in a couple of decades? So long as research money, both public and private, keeps flowing in the service of curing the assorted forms of dementia, it seems plausible, even probable, that people now in their twenties will live to see Alzheimer’s become a managable disease.

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