Chapter Eleven
Oh My God, We're Old!
How did it happen? When? I look across at him, see the years written on his face, and think, He's still cute. An odd word for a man who's six feet tall and weighs 180 pounds, but it's the word that comes to mind. I think back almost a half century ago and try to remember, What was the word I thought when I first met him? Not "cute," certainly, but I'm not sure. Handsome, maybe, big, strong, smart, kind. A hero, a veteran of the Abraham Lincoln Brigade in the first war against fascism: the Spanish Civil War. I remember the evening clearly: July 1061, a party at a friend's house, lots of talk about racial politics in that year when the first freedom riders set forth to test the new laws banning segregation in interstate travel and an Alabama mob set fire to the bus they were on. Opinions flew back and forth, people disagreed, but we two were on the same page, always in agreement.
That's how it began, the initial cement our long history of po-litical commitment and activism, shared even though we'd spent most of our lives until then a continent apart, and still lived in different cities. I had been recently divorced; his wife had died four years earlier. We were young—well, younger. I was thirty-six; he was forty-four, older and wiser, it seemed to me then, filling the space, perhaps, of the father I never knew. The years ahead
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seemed endless as they do at the beginning of a love affair when anything and everything seems possible; the love of my life, his as well, he says.
Now, here we are. It seems we were young, vigorous, active, then one day we got old. I know it's not true, of course, that it's a process that has been ongoing, that we've been moving toward old age for some years, fighting it when we could, accommodating it when we couldn't. Still, it remained an abstraction, something out there in some future that wasn't really ours, something that happens to someone else, to those old people we see around town who don't look like us.
I send an e-mail to an eighty-three-year-old friend whose body has punctured her denial in recent years, and ask: "How do we know when we're old? When does that knowledge come?"
"There are small steps from one level of recognition to the next," she replies. "But we're in constant denial so that whatever age we're at isn't really old yet. Then the steps become leaps, and they come more frequently and are harder to ignore. Still, even with all the stuff I've suffered recently, physical problems that set off my fear that I'd one day be helpless and dependent on my children, it was still one day; it wasn't now. Then, a couple of weeks ago I was diagnosed with spinal stenosis, a degenerative disease of the spine. Tfwr feels like NOW.
"So when did I know I was old. I feel like saying, I've known time after time that I was growing older, but if there is a moment of knowing I'm actually old that I couldn't deny, it came with visible signs that my bones were deserting me."
But how do you know when there's nothing so dramatic to hammer the reality home? You live with someone, see him every day, but you don't see, not really. Sure, sometimes you catch a glimpse, a thought floats through your mind: He (oo/cs tired, older. But it slips by before you really register it. You don't want to notice, much like the children of aging parents who awaken with a
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start to the reality they, avoided before. Then one day, you look across the room, and it's like an epiphany: He's old. It's something like striding along the street, catching a glimpse of yourself in a brightly polished shop window and being surprised at what you see. Is that really me? Do I look like that? That old?
"I hear die incredulity about aging echoed by elderly people who seem to be truly bewildered by their forced residency inside their bodies made strangers by time," writes the geriatrician Kate Scanneil. "Somehow, unannounced and unceremoniously, old age has snuck into their experience of themselves."1
Perhaps it's unconscious denial, perhaps a willing suspension of knowledge, probably a little of both. I read once that someone said, "Inside every seventy-five-year-old is a thirty-five-year-old asking, What happened?" I wrote the comment oft, thinking it was glib, telling myself that I know very well what happened. But it's not true. For old age tiptoes in on silent feet, taking a little here, a little there, none of it big enough to get our full attention, until one day, it's there, and we're left wondering, What happened? When?
"It's like it happened suddenly," explains a seventy-eight-year-old woman who can't get around very well anymore, "One day you're saying, 'I feel great,' the next you're limping around. I mean, I know it wasn't sudden; I had aches and pains for a long time, but I was doing fine. Then one day, 1 was getting on the bus, and I couldn't climb the steps. My legs just wouldn't push me up. That was the beginning; that's when I really knew I was old."
Not that she doesn't still remind a listener that she's "not finished yet"—a remark that conveys her ambivalent relationship to the knowledge she now claims to accept. For while she can no longer look away from the truth for long, she also can't hold onto it ail the time. One moment, she's old; she knows it, feels it; an hour later she can still be surprised when she has to push herself up her front steps with the aid of a cane.
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I remember how often my mother, then well into her eighties, would go to the doctor to demand a cure for the fact that she couldn't walk as far and as fast as she had in the past. I'd remind her how old she was, tell her it was normal, but it was easier to blame the doctor for neglect or insensitivity than to confront the truth of her deteriorating body.
Now that I'm here, I wonder how different 1 am. I know better than to expect medical miracles, but I also know how hard it is to come to terms with old age, to understand that those words, and all they stand for, mean me. It isn't that I don't know I'm getting old, don't think about it, fret about it, talk about it. But there's a big difference between getting old and being old.
We see the signs, the markers physical and mental, small aches at first, then bigger ones, moments when memory fails, what we laughingly call "senior moments" as we try to push the significance away. And there are the passing years themselves, the birthdays that have special significance: sixty-five, when a Medicare card drops on your desk,2 sevenry-five, when you realize you've lived three-quarters of a century.
"Seventy-five doesn't make sense," says a woman whose birthday just passed. "How is it possible that I've lived so long, three-quarters of a century? 1 know it's true, but I keep thinking, it can't be me. I don't remember living that long."
For me it was eighty. I wasn't surprised that I'd lived so long, although because I've traveled so far and my life has changed so dramatically since my childhood and early adulthood, those years seem like a hazy dream, as if they were lived by someone else. The surprise for me was how profoundly something shifted inside me, how quickly a new and unwelcome definition of myself emerged.
Nothing changed, not physically, not mentally, not yet, but I knew it was coming, knew decline was inevitable. I'm eighty years old! I've crossed the line into old age. I couldn't get the words out of
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my head; I'm not sure I wanted to, still don't. It's as if they're the reminders I need to protect against the unpleasant blows I know await me. Not that it has worked. When 1 notice now that I tire more readily, that I can't walk five miles with ease anymore, that my fingers on the keyboard seem often to have a will of their own, acceptance and denial fight it out inside me as if I'd never said those words to myself.
Five years ago a psychiatrist examined my husband and declared, "Early stage Alzheimer's." Was this the moment I knew he was old? In hindsight, maybe. At the time, though, I was too frightened to think about young or old; all I could think was, Not that, not Alzheimer's, anything but that.
It's probably everybody's worst nightmare these days, and for good reason, since, as we continue to live longer and longer, it's increasingly likely that the dread will become a reality. Alzheimer's currently strikes between 4.2 and 5.8 million Americans, a number the Alzheimer's Foundation of America projects will rise to 16 million by mid-century. One in ten persons over sixty-five and nearly half of those over eighty-five currently suffer from the disease.3 Add to these statistics other forms of dementia not specifically counted as Alzheimer's, and it's a formidable problem for society, for the individuals who suffer it, and not least, for their families.
We went fot the consultation because I'd been noticing lapses that seemed more than those "senior moments" we laughed about. So what did 1 expect? Expect? Want? There's a difference. I expected the diagnosis, but didn't want it, wouldn't accept it, and pretty soon, I'd rationalized it away. I've seen Alzheimer's; this isn't it, I told myself. It can't be; he's still doing many of the things he used to do, just not so efficiently. So what if he forgets? So what if he, who was the executive chef for his four restaurants, can't cook so well anymore? He's eighty-five years old. Leave it alone.
I wasn't wholly wrong, because a few months later a review by
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specialists at the University of California's Memory Clinic challenged the Alzheimer's diagnosis and labeled it age-related memory impairment (ARMI, an apt acronym for the war between consciousness and oblivion that goes on in the brain). I asked how this is different from Alzheimer's and they explained that the personality changes that come with Alzheimer's are unlikely with ARMI. "Unlikely, or won't happen?" "We can't say for sure." "Is it a precursor to Alzheimer's?" "It could be, but we don't know enough to say anything definitively." I kept asking questions until I finally got it: even the experts don't know enough to answer them with any certainty. Still, it made us feel better to get that hated word off the table, and we left feeling somewhat lighter, more optimistic.
In the first years after the diagnosis, I'd watch my husband, looking to see something, to get some clue, something to help me understand and accept this thing that, bit by bit, was taking over our lives. But there was nothing to see—a slip here, a lapse of judgment there, inattentiveness, withdrawal, nothing dramatic, nothing that couldn't be written off to mood or simply to normal aging. That's what makes these cognitive failures so frustratingly hard to accept.
"I don't know, maybe the worst part of dealing with Alzheimer's is that it takes such a long time to believe it," says a seventy-six-year-old woman whose husband died of the disease a year ago. "It's not like when somebody has a heart attack; you know they're sick. But Alzheimer's, well, my husband seemed okay for years; I mean, if you saw him, you'd think he was fine. You'd have to be around for a while to know something was wrong."
How do you make yourself believe it when there's no straight line moving in a single direction, no stable place you can count on, when symptoms that are here today are gone tomorrow, only to reappear the day after?
Friends and family often didn't make it any easier. They'd see
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my husband for a couple of hours, take me aside, and say, sotto voce, "He seems fine tome." "Maybe you're making too much of this." Words that momentarily reassured me but also left me feeling lonely and questioning myself even more than before. Am I the only one -who sees what's happening? Is there something the matter with me? Am I seeing things that aren't there? Making it worse than it is?
The internal dialogue, the fight 1 had with myself then—still have at times—was maddening. I'd get upset, angry at what fate had dealt us, irrational anger sometimes directed at him, because anger, which suggests there's something he could do about it if only he'd try harder, is easier, safer than acknowledging that he can't.
The literature on Alzheimer's and other forms of memory impairment tell you that these are all "normal" caretaker responses. But it didn't feel normal, certainly didn't feel right or kind. So I'd gather myself up, move into denial mode, and tell myself I was making more of it than needs to be, denial that was helped along by my husband's refusal to believe what was happening to him. Each time he couldn't manage something on his computer, he'd get angry and insist the problem was mine. "You don't teach me, you just do it," he'd shout about something I'd already explained to him a hundred times. Each time I took over some household function that was formerly his, he'd complain that I was overreacting. "I can do it; it's just not the way you like it done," he'd insist angrily. Leaving me to wonder: Is he right? Am J being too quick to jump in? How can 1 do this to this man who prides himself so on his competence? How can I be so sure?
Then I discovered that our checking account, which he had always managed, was a mess because he hadn't balanced it in many months. Who have you been kidding? a voice inside me demanded. Did you have to wait for something like this to believe what yon see? What else will it take? He asks the same question ten min-
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utes after you've already answered it, has trouble tracking a film or a play, forgets a TV show an hour after he's watched it, can't find words to express the ideas I know (think? wish?) still live in his head. These aren't just small lapses anymore; this is different: different, get it through your head, accept it, live with it.
Yes, but it's not always like that, the voice of denial still insists occasionally. He manages some parts of life, goes where he has to by bus, works on the culinary dictionary that has engaged him for the last several years. Sometimes he can even track and remember; sometimes he even reminds me to do something I said I wanted to do but forgot. But it gets harder and harder to avoid knowing what I know.
Talk to anyone who's living with ARMI or Alzheimer's and you'll hear the same tale of the struggle between denial and acceptance, between love and rage. It's easy to pass judgment, but until you've lived with it, you can't know the exasperation, the downright desperation, that can overwhelm any caretaker.
A friend whose husband needs care around the clock calls to say, "I don't know how much longer I can do this without wanting to kill him or myself." We talk, we swap stories, we cry, we laugh, we console each other. I remind myself that I have a lot less to complain about than she does; she reminds herself that most of the time she can still be loving, still look at her husband and see something of the man he used to be. In the end, we hang up relieved—relieved that we can speak the unspeakable to each other, relieved that we're able for a moment at least to feel that we're not monsters but humans who are being pushed to the limits of our ability to cope.
"I couldn't do it anymore; it was too much; I just couldn't do it," cries a seventy-seven-year-old man who had been the primary caretaker for his wife for seven years before he put her into a nursing home. "It wasn't so bad in the beginning but I have to admit, even then I was angry at her a lot. I mean, it wasn't like she was
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sick or something; she'd seem okay, then she wasn't. How could she suddenly forget how to cook one day? I used to think, maybe she's just getting back at me for something, or she's just mad because I didn't help out enough all those years. Later, when she became crazy and would scream and carry on, that was the worst. You know, you give up so much to take care of her and all you get is a raving lunatic.
"1 know it wasn't her fault, but it's still..." His words trail off as he fights back tears, then, "My daughter and I went to one of those support groups for a while. 1 guess it helped a little, but then, I couldn't leave her, and to tell you the truth, I got tired of listening to the others. It's not like anybody can do anything; the damn thing goes on and on, and pretty soon it's like there's someone else sleeping in your bed."
"After taking care of her all that time, what made you decide to put her into a nursing home?" 1 ask.
He's quiet for a while, then shaking his head, "I don't know exactly. It was after she got really bad and was so angry. She didn't really know me by then, so it seemed more okay. By that time, 1 didn't even get angry anymore. It was like, What's the use? I just accepted that she was gone, just like they kept saying you have to do in the support group." He stares off into space for a moment, then continues, "It seems like I gave up hope she'd ever come back to me, and that's when 1 knew I couldn't do it anymore."
He sits for a long time, sad, lonely, saying nothing, pulling at my heartstrings while, at the same time, I can't help thinking that he's among the lucky ones who can say, "I couldn't do it anymore" and buy the care his wife needs. Most people don't have that choice. They just go on putting one foot in front of the other, doing what they have to do, dealing with their feelings as best they can. Which isn't to say they always do it well, as the stories of elder abuse tell us.4 Or they strip themselves clean financially to meet Medicaid's requirement that they "spend down" all the
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patients' assets, except for a couple of thousand dollars of burial money, before being eligible for public care. Interesting, isn't it? Our government doesn't allow the necessary resources for living, but you can keep enough money to put yourself in the ground after you're dead.
Is it different, easier to grasp, when the body fails instead of the brain? I've watched others struggle with failing body parts, with cancer, a heart attack, a stroke, and it seems to me easier to accept. How do you deny someone had a heart attack? Or that she's lying in a hospital bed, felled by a stroke? These are fright-eningly real, there for anyone who would look. But the mind, when something goes amiss in the mind, there's nothing visible, nothing obvious to hold on to against the denial that comes so quickly into play.
I ask a friend whose husband died of prostate cancer. I see her pain as she returns to that time, now six years ago, watch her push past it and begin to speak.
"The physical changes often come as a crisis and make an immediate change in your life; it's unmistakable. You can't slough it off when they tell you your husband has advanced prostate cancer. You do what you have to do, but you know it's a death sentence. With the mind you really don't know where to draw the line between what's normal and what's not. We've been forgetting words for a very long time, so it's hard to measure. How much forgetting constitutes a major change? With the physical stuff, the line is drawn for you; you can't not know it."
True, we can't deny the major physical crises, but as she speaks, I find myself thinking about the smaller changes that are so common as we age and wondering if it's so for them as well. Most of us are pretty good at stepping around those, at finding ways to live with them, to overcome them, even to tell ourselves it doesn't matter. Still, it's different, I think. We know we're hurt-
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ing; a wife, husband, partner sees the signs: the limp, the pain, the shortness of breath.
Often we can do something about these things. Surgery gives us a new hip, exercise and analgesics control our back pain. When I notice that my heart is pounding and my breath is short after climbing up the hill to my house, I tell myself that it's not just my age, that 1 stopped walking up the hills because it began to get difficult and now I'm caught in a loop that's common to all of us. Something gets hatd so you stop doing it; you stopped doing it, and it becomes harder still.
If you're fifty, you go back to the gym, promise yourself you'll work out more regularly, which you do, until the next lapse and the next reminder from your body. Yes, I know some eighty-year-olds do that, too, but for me, one of the blessings of getting old was giving myself permission to end my twenty-five-year affair with the machines at the gym. (I don't worry about cholesterol anymore either, but, alas, haven't yet mastered the vanity that keeps me counting calories.) Not that I've become sedentary; I just don't feel obliged to pump iron and walk the treadmill so assiduously. Instead, I walk the streets of this beautiful city in which I'm lucky enough to live, and when I find myself huffing and puffing up a hill I walked with ease a year ago, I plan an exercise program: every day, no matter what else I do, I'll climb a couple of hills—two at first until I get comfortable, then three, then four. I have no illusions that I'll ever again make it from the Bay to the top of Nob Hill, a formidable climb at any age. But this much I can do, this much allows me to say, Okay, I'm old but it's not over yet.
It's different with an ailment of the brain, even a relatively moderate one like my husband still has. A person suffering the early stages of mental incapacity usually can't let himself know it, indeed refuses to know it until well past the time when he has a
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choice about knowing; To this day, my husband still complains to our daughter, "Mom makes me worse than I am."
But even when we know, there are no solutions that work very well: not the medications that can cost a thousand dollars a month and more, not the memory exercises the patient is instructed to do, not the lists he's urged to keep, not the notes a caretaker is expected to write. What good is a note of instruction if the person can't follow it? Or remember to look at it? That's the very definition of memory loss: we don't know what we can't remember.
I put a casserole in the oven before I leave the house to meet a friend for a late-afternoon glass of wine, giving my husband clear instructions, verbal and written, to turn the oven to 350 degrees at six o'clock. Some days he can do it; on this one 1 come home at seven to a ggo-degree oven and a ruined dinner. "I got confused," he says, as I struggle to contain my frustration. He was a chef. How could he not know the oven was too hot?
He doesn't, of course. My head knows that, but something inside me continues to rebel against knowing what I know. I can't know. Why? I'm not sure. Maybe because if I do, I'll give up on him, and that would be even worse than the self-hatred I feel when 1 act out my anger.
A friend, reading these words before publication, notes in the manuscript's margin, "But maybe if you do, you could work toward a less tortured acceptance." I think about that and wonder if it's true, wonder if those people who achieve "a less tortured acceptance" don't feel the loss as keenly as I do because they never had the relationship, the level of communication, understanding, and companionship my husband and I had. Is that unfair to others, a rationalization to justify my unruly feelings? How do I know? Can we ever really know what goes on inside another? More to the point, can we ever be absolutely certain about what motivates our own behavior and the feelings that undergird it?
Oh My God, Were Old!
What I do know is that old age comes like a revelation one moment and slips away the next. We move from knowledge to denial and back again in a flash. Ambivalence rules. Part of me knows I'm old, another says Not yet.
Something happens: I trip, fall, and get up shaken, not just because I've bloodied my nose but because I have a new awareness of my vulnerability. Old people fall a lot. A couple of hours later, at home, calmer, the bleeding stopped, the humiliation I felt as I lay on the street with people gathering to help fades. Denial sets in: it's no big deal, anyone can trip.
If it's not the body, it's the mind. I walk to my desk for something and forget what I was after. It happens once, it's a blip on my consciousness, twice in a couple of hours, it's a neon sign. It doesn't happen again for a while, the sign fades to a blip.
I get an e-mail from a seventy-six-year-old friend who, after writing about the difficulties of caring for her seriously ill husband, goes on to count up the positive aspects of old age: the freedom, the ability finally to do what you want to do, the time for yourself, for reflection—all the things that can, indeed, make old age a positive time of life. I write back, "How can you talk about being free or doing what you want when you say you can't find a moment for yourself because Jack needs so much care?" "Yes, that's true," she replies at once, "but that's not age-related, that's Jack-related."
I understand what she's saying. If he weren't ill, if caring for him didn't take so much time and energy, so much of her life, this would be a good time. But it's also denial, because this is what old age is about—a steady erosion, more for some than for others, it's true, but inevitable as we continue to expand our lifespan beyond what the body and mind can sustain.