ONE DAY IN EARLY JANUARY 2010, I carried a cup of green tea into my home office in East Boston and sat down to pay some bills. A light snow was falling, and my dogs, a shepherd mix and a blue-eyed border collie, trailed along behind me and flopped on the Oriental rug. A pretty ordinary day, until I logged on to my bank’s website and my heart dropped. In the “Balance” column, beside an account I held jointly with my mother, was a line that should have read something like “$8,000.00.” Instead I saw “$0.00.”
I didn’t need to wonder what had happened. I didn’t even consider the possibility of a bank error or question whether the automatic deposit made on the first of each month had been held up. I didn’t ask myself if it could be a case of identity theft, because I already knew that in a manner of speaking, it was.
Seeing that row of zeros was the moment that finally opened my eyes to my mother’s Alzheimer’s disease.
In retrospect, it had taken me long enough. At 86, she had been showing signs for several years, though, I suddenly realized, I’d been blind to them; perhaps as part of my ongoing battle against my own aging, I’d steadfastly refused to view her as anything but the strong, independent woman I’d always known her to be.
The first time I was forced to confront her weakening state was in 2004, when we were spending a week at my cottage in the White Mountains. We had gone to Jackson for lunch, and I thought she’d like to visit the swimming hole. She had been a lifeguard in college and had always been a strong swimmer, not to mention a star softball and basketball player on her school teams.
I skipped down the rocks ahead of her, urging her to hurry up.
“I can’t,” she said, her voice quavering as she shuffled along, looking for something to hold onto. “Elizabeth, I’m old!”
Two young men helped her down a small incline, but she remained uncomfortable beside the slippery rocks and rushing water. “Fine,” I said, annoyed by her fear, and took her shopping instead.
I don’t defend my insensitivity, except to say that denial is a powerful thing.
I see now that I encountered it time and again over the next few years. Like when I visited her house in Buffalo and found 14 bottles of shampoo and 12 of laundry detergent; when she reported that my cousin was getting divorced after 20 years of marriage and responded to my questions about it with “I didn’t ask” or “I wasn’t paying attention” — phrases that were increasingly peppering the conversation of this former gossip queen; when, as I drove from her friend’s house on the Cape back to Boston, she kept nagging me to stop for gas , saying it so many times that I finally blew up at her. Of course, every time she said it, I now know, she had thought it was an original idea.
Inwardly freaking out about the missing money, I called her and calmly asked what had happened to it. She admitted, after much cajoling, that she had wired it piecemeal, by Western Union, to a “nice” man in Jamaica who’d told her she’d won $450,000 and needed only to send a small fee to “release the funds.”
Later, when I recounted this story, a friend unthinkingly said, “I always wondered what kind of idiot would fall for that stuff.” The answer, of course, is an elderly woman with dementia who tells herself “I must know this person, he knows my name” when a stranger calls, and who feels good when he asks about the daughter she bragged about yesterday during another phone call she can’t remember. My mother was vulnerable to anyone who would strike up a conversation, because despite her busy social calendar — which I thought meant everything was fine — she was lonely; she didn’t recall having talked to her sister an hour before or gone to her bridge club that afternoon or taken her morning walk to visit neighbors with her two waddling pugs.
Like most adult children of elderly parents, I didn’t think to pry, and when I did ask questions on our daily phone calls, she covered up to put me off the scent. She didn’t want to bother me.
THERE’S NO WAY to quantify how many older people feel the same way — particularly, as in our case, when their kids live far from “home” and have for many years. But most can’t conceal their deficits for long, because eventually something tips off family members that it’s time to get more involved.
Research done in 2010 by MetLife found that a quarter of working adults — mainly baby boomers — provide personal care and/or financial assistance to at least one parent. The stress of this is relentless, caused by a never-ending cycle of early mornings, sleepless nights, cleaning up bathroom accidents, tending to falls, getting yelled at or even hit, visits to the local police station when the parent goes wandering or to the hospital when she’s in pain but can’t explain where it hurts. And, perhaps most wearing, constant repetition.
An actual sample conversation:
“When is church?”
“Church is on Sunday. Today’s Wednesday.”
“Oh. OK. But don’t we have to go to church today?”
“No, church is on Sunday. Today’s Wednesday.”
“OK.” Pause. “Well, I think I’ll get ready for church.”
Caregivers heal more slowly and have weaker immune systems; they’re more likely to be depressed or have chronic medical conditions; they may lack concentration and often withdraw from social activities; they may overreact to others’ words and actions, gain or lose significant weight, cry a lot, drink too much, or abuse drugs. They also have more financial problems. The MetLife study found that lost wages total almost $90,000 for male caregivers and $143,000 for female; add to that the decrease of $144,000 and $131,000, respectively, in Social Security benefits and a conservative $50,000 for both sexes from their pensions.
Though I am lucky that I work from home, I took a pretty big financial hit when I decided to move to Buffalo, where I would have a better support system of family ties and decades-old friendships than I had in Boston. First, I had to buy a house; my mother had been renting since she sold our waterfront family home after my father’s death in 1995. I found a lovely 100-year-old double that allows me some privacy but needed costly renovations (tick another box in the “stress” column), which basically wiped out what little savings I had.
Second, my income has fallen by almost two-thirds, in large part because I simply haven’t had enough time to work. That situation improved a bit in May when my mother started going to adult day care Monday through Friday, but the cost for my newfound “freedom” is $23,000 a year, not counting the times I have to pay someone to stay with her because I’m traveling on assignment. And I still spend four to six hours a day cooking for her, cleaning her apartment, doing her laundry, or just sitting with her while she watches TV or dozes off.
If I’d seen my mother’s confusion earlier and insisted on taking more control, I might have saved her — and, ultimately, myself, because I’m an only child and would have inherited anything left over after her care was paid for — a few hundred thousand dollars. When I got power of attorney and looked back into her checkbooks, I found she had been giving away $1,000 to $2,000 a month for at least six years, and possibly since my father died. Most of it went to scam charities that sent her so much mail that it stacked an inch or two high every day. (It was apparently through a “sucker” list compiled from response cards to one of these that the Jamaican crook got hold of her.)
In addition to the hundreds of checks she had written for small amounts — $25 here, $100 there, allegedly for veterans, homeless people, children, or animals — she had also run up $100,000 in credit card bills, borrowed $35,000 against her life insurance policy, and failed to pay the IRS for three years. Where all that money (along with my father’s circa-1950s Les Paul guitar) went is still a mystery. There was also the emotional toll when she learned the windfall she was expecting from Jamaica would never come, and the stress it put on me when the damage control began in the form of almost daily battles with banks, lawyers, utilities, creditors, and my mother herself, who, until I could rearrange our two lives into one household in the same city, still had access to her accounts. For a while she went to the bank two or three times a day, telling them I was stealing from her and trying to withdraw her monthly pension so she could hide it in a coffee can that would later get thrown away.
QUIT WHINING, MANY WILL SAY. She took care of you for years when you were a child. To which I reply: Not quite the same thing.
People often liken caring for an elderly parent to raising a child, but anyone who’s done both will tell you there’s no comparison. Though children may be willful, they are not generally intransigent. If necessary, they can be picked up and carried to where they need to be. Their diapers are much smaller.
Most important, children give you hope. No matter how bad a day it is, you know that in six months or a year — or tomorrow — things will get easier. You can look forward to milestones like high school graduation, perhaps a wedding day, and family dinners with someone who, with any luck, will grow to be a friend. With aging parents, the milestones mark each decline, and that ray of light does not get any brighter.