"Invisible second patients"

 Most people know about this, but may not be aware of the extent or severity of the problem...

"Not long after his wife was diagnosed with Alzheimer’s disease, Tom Lee picked up a book on caregiving, one of the many he’d devour in those early, frightening weeks, when the future felt suddenly impossible to imagine. Amid all the information and advice, he read a line that stopped him cold. “It said, make sure you take care of yourself, and leave at least 15 minutes to yourself every day,” he remembers. “I thought, 15 minutes? Are you kidding me? That’s not even enough time to open a book. When I read that, I really started to wonder what I was in for.”

He first noticed something was wrong in 2017, when Antoinette was 69. She started repeating questions and sometimes struggled to grasp complex ideas. For years, she’d done the couple’s taxes, but that fall, for the first time, she had trouble with the calculations. “I sat down with her, and we went over it a dozen times,” Lee says. “And she just couldn’t get it.” By the following summer, they had a diagnosis.

Six and a half years later, she is in what doctors refer to as mid-stage Alzheimer’s. “That’s when things start to really fall apart,” he says. Patients begin forgetting who they are and where they live. They become moody, withdrawn, combative. As their sleep and circadian rhythms unravel, patients sometimes stay up all night, requiring their caregivers to stay up, too. Routine tasks such as getting dressed become difficult without help, and speech gets more confused. “Toni went through a period where about two-thirds of her words were uninterpretable,” Lee says. “They were words she made up, and she would rhyme things as she spoke.” These days, almost nothing she says makes sense. “You ask her if she’s hungry, and ‘no’ could very well mean ‘yes.’” This middle period is also when patients begin to wander, or fall. One day last summer, Antoinette walked away while Lee was out watering tomatoes in the garden. He found her a quarter-mile down the road, talking to a neighbor’s mailbox.

“As a caregiver, you watch bit by bit as your time slips away,” he says, “and then one day you look up and realize that things you once took for granted, like finding an hour to read or listen to music or go for a run—all that’s gone. You become totally absorbed in caring for this person, making sure they are safe and secure and that their basic human needs are met.”

Across the country, there are more than 11 million people like Tom Lee: unpaid caregivers for someone with dementia. Usually, that someone is a family member or a loved one—the burden falls disproportionately on women—and the majority of caregivers spend one to three years in that role. Often they spend many more.

They are all part of an accelerating crisis. Nearly seven million Americans over 65 have Alzheimer’s, the most common cause of dementia. As the population ages, that number is growing—to a projected 13 million by 2050...

I have been a caregiver in similar circumstances (and the same precepts would apply to families who have children with special needs).   The difficulties are intense and unavoidable, and they push you to the boundaries of your compassion.  The discussion excerpted above continues at length in the most recent issue of Harvard Magazine. 

I will add that in my opinion, the people who have the power to effect changes in the system (executives in businesses, state and national congresspeople) tend to be wealthy and are able to turf these caregiving responsibilites on to paid helpers, and they have very little personal incentive to enact meaningful changes in the status quo.