Taking Care of Mom
How to cope when your parent can't
My mother is 92. She's 2000 miles away. I'm an only child. These are just three of the myriad factors in what's become an increasingly complex equation for me, the daughter of an aging parent. And while I have to deal with my mother virtually on my own, I share the dilemma with millions: the baby-boom generation, uneasily coming to late middle age ourselves, turning into the caretakers of our elders. Both groups exist in numbers unprecedented in human history.
According to the official census of 2000, the U.S. is an aging society: The number of older adults -- that is, 65 and up -- in 1990 was 35 million, or 12.4 percent of the population; 10 years later those numbers were 53 million and 16.4 percent. In 2030 -- pause for a moment to think what age you'll be then -- 20 percent of us will be "older." One-fifth of the population.
Vermont's State Plan on Aging indicates the 45-to-64-year-old age group is the fastest-growing segment of residents; more than 80 percent of elders live in rural areas, where services are fewer and incomes are lower. Pause for another moment to contemplate the health-care implications. Unless some better solutions come down the pike in the next couple decades, the challenges of 2030 will make Medicare's incomprehensible prescription-drug law of 2005 look like child's play.
Statistics aside, the basic truth is that no one is getting any younger. But by the delicately vague term "aging," we usually mean the stage of a person's life that is marked by physical and/or mental deterioration, loss of independence, and negotiating the slippery terrain of insurance, financial issues and, sometimes, serious illness. And it's the stage of life when one has to give some thought to death.
Nothing is more natural, or inevitable, than mortality, yet growing old is an unpopular subject. In fact, few things disturb us more. It's bad enough to look in the mirror one day, notice a new wrinkle and wonder, How the hell did that get there? Is there anything I can do to make it go away? The answer to the latter question is no, and that's just really a bummer. But to me, what's far worse is realizing my parent (I'm using singular because my father died many years ago) is going downhill fast.
How to prepare for that? Nowhere in my college or graduate education did I learn what to do when my mother burst into tears during a discussion about giving up her home. Or how to be patient when she began losing her vocabulary, or couldn't find her doctor's office, or asked me the same question four times during a 15-minute phone conversation. Nor did anyone tell me how to handle the emotions that would accompany seeing my mother fall and break her hip, get whisked away by EMTs, have emergency surgery on Christmas Eve, learn to use a walker. Learn to rely on me.
And I was a psych major.
We should all have required courses in gerontology. Then at least we might not be shocked and scared when the parent who once seemed strong and smart and capable . . . isn't. We might get some pointers on easing into the caretaker role, not to mention our own advancing years. But for most people that didn't, and doesn't, happen. That's why elder-care agencies, organizations such as AARP, and any number of websites offer scads of remedial advice about dealing with an aging parent. Having entered this realm with my head in the sand, my advice is: Learn as much as you can before you get there. Your mom and dad are only fortysomething? Never mind. Talk to them now, when you can still make jokes about debilitation and dying.
"Caregiving usually begins incrementally," says Jeanne Kern, who last month in Waterbury gave a talk entitled "Planning for the Future: You and Your Aging Parent." Kern is the coordinator of the family caregiver support program at the Barre-based Central Vermont Council on Aging. She's been giving talks of this nature for the past two years. At 48, Kern is not yet dealing with dependent parents herself, though when and if she does, like me she'll be a long-distance caregiver -- her folks live in western New York. But unlike me, she's ahead of the curve regarding what steps to take. The top three sources of anxiety about aging parents, Kern says, are "what type of help they may require, what resources are out there, and finances -- will they be adequate to meet the parent's needs?"
In Vermont, Kern explains, five agencies on aging serve different parts of the state. And that doesn't count nonprofits such as the Visiting Nurses Association, private home health-care providers and other service organizations (see sidebar). "One thing many people who are now doing significant caregiving say is, 'I wish I'd known about that before; I didn't realize all those resources are out there,'" Kern says. "It would be nice to tap into it sooner."
Kern is right about the incremental thing; aging sort of sneaks up on you. Especially if your parents are in reasonably good health. So whether they live in a different state or right next door, those first "symptoms" can come as a surprise. For some it's blatantly, cruelly physical, such as a stroke or heart attack. My mom drove into a bank.
It took her weeks to admit it to me. Seems that she thought the car was in reverse when she stepped on the gas; the car jumped a curb and plowed into the bank's large front window, surely scaring the bejesus out of whoever sat on the other side. Luckily, no one was hurt, but the ensuing brouhaha -- shattered glass, ambulance, police -- was pretty embarrassing for her. At least I assume it was. To me she just said, "Well, I never did that before!"
No, mom, you didn't. And please don't do it again.You'd think that would have been enough to get her license revoked, but no. The next year, when she turned 88, I took her to get her license renewed, and was appalled and relieved in equal measures that the DMV handed it over without so much as an eye exam. If she didn't have a car, my mom's life -- including her all-important volunteer work -- would have begun to tumble in on itself. She lives in a suburb of a large Midwestern city, where people drive to everything. Mass transit and cab service are virtually nonexistent.
Last spring, my mother moved into an independent living facility -- which, thankfully, she actually likes -- and began to literally tumble. After her third fall, she gave in to the walker and grew dependent on it. She's terrified of falling again. This from a woman who only months before refused to use the cane I bought her because, she would snort, "Canes are for old people!"
Last fall, my mom lost her car keys. Her only car keys. She thought she'd flung them when she fell on the concrete parking lot outside her garage. Because no one saw her, she had to crawl back into the building; she didn't think about the keys until much later. On my next visit, I checked everywhere, outdoors and in. Nothing. I told her it was a sign from the universe that she was supposed to stop driving. She just laughed. But she hasn't driven since.
This summer during another visit, I went to a local car dealer, paid for some replacement keys, and called up an old high school friend who runs an auto-body shop. Because he used to plow my mom's driveway for free, without being asked, I thought we should give him the car, and to my surprise my mom agreed. When Tracy came and we unlocked the car with the new keys, I found the original ones inside on the floor. By that time my mother had become convinced the cleaning lady had stolen her keys, among other things. When I asked her why the cleaning lady had not then also stolen the car, she had no answer.
Since then, my mom's paranoia has increased, and so has her forgetfulness. I don't mean the absent-minded, where-did-I-put-my-purse kind of forgetting, but gaping holes in her memory. According to her doctor it is not Alzheimer's. Kern suggests that taking prescription drugs over a period of time might result in memory problems. My mom only takes two, but still. I'll have to ask the doctor about this. In any event, with her memory loss has come confusion. It takes longer to get her to understand something, and if she's convinced of the contrary, no amount of logic can come to the rescue.
At first I found this irritating; I'm not the most patient person, nor did I want to accept that my formerly intelligent mother simply could not see reason. In phone conversations I would tell her when she repeated herself, as if that would make a difference. When she complained about a "crazy cousin" of my father's who likes to call her and talk in circles, I told her she was getting like that, herself. OK, that was mean. Kern politely reminds me that we should treat our elders as we would like to be treated ourselves. Yes.
Not long ago, something happened to make me a lot nicer, and sadder. I was visiting my mom and, while quietly reading in the living room one evening, she suddenly began to tell me about an old bank account that she simply had to close one of these days, because she'd dreamed that her husband was taking money from it. Then dream and reality completely merged and she began to get agitated. I said, gently, "Mom, I don't think you still have that bank account; I've never seen any statements from them."
She retorted, "Well, maybe they just don't send me one."
I asked, "Well, when did you last make a deposit in that account?"
She said, "Oh, about '55."
"Mom, that was 50 years ago. I think you closed that a long time ago."
Did that make some kind of sense? Did she realize her brain was playing tricks? I'll never know. All she said was, "Oh."
I have become more patient with my mother since she first drove into the bank. I still feel guilty being so far away. But I have learned a lot: how to find renovators and real estate agents in another state; whom to call for emergencies and how to talk to insurance agents and doctors; how to get power of attorney; how to invest my mother's money for her; how to choose the right senior-living facility and, when she needs it, home health-care assistance. I know about broken hips and hearing aids and orthopedic shoes and walkers and physical therapy. I know all the gossip among the ladies at her dinner table.
What I don't know is where my mom went, or even who she was before the words that might enlighten me disappeared. I know she loves me, and I guess that will have to do.
But even now, I am not ready for the inevitable end. I mean that literally: I have not yet mustered the courage to ask my mom where she wants to be buried, what mortuary, what kind of service she'd like. She's got a will, but those things aren't covered in it. "I think you just make the opportunity for her, sort of nose around to the topic," Kern advises sensibly. "Let her know you're open to talking about it."
Sure. She'll probably just tell me death is for old people.