ELEVEN

NEW YORK CITY

Spring 2014

I jumped into our truck and headed uptown, having lost B. in traffic. The G-Wagen mystery was solved when I screeched into our building’s underground garage. There was the other black G-Wagen—some neighbor’s—its hood still warm. Apparently B. had thought it was ours, as had the garage attendant. Thank God she hadn’t smashed it up. But where was she? Not upstairs, as I quickly determined. Just gone.

I had a hunch that B. might be at the bar of the Ritz-Carlton hotel, just down Central Park South. It was a favorite of ours at the end of a working night. I found her there in a highly agitated state. As soon as she saw me, she dashed outside and started running—in heels—toward Columbus Circle. I ran after her, but lost her in the crowd—she was running that fast. At least her life was no longer at risk behind the wheel. Maybe blowing off steam was what she needed to do. So I gave up chasing her and went back in for a nightcap or two. I’m not proud of that decision, but then there’s a lot that I’m not proud of in my caregiver role. I’ll just say this: it’s the hardest job I’ve ever had.

Eventually I left the Ritz-Carlton, went upstairs to an empty apartment, and trusted to fate. It was too soon to report B. as a missing person; I didn’t know what else to do. At some point, hours later, I sensed B. sliding into the sheets beside me. I curled around her like I always do, and went back to sleep. When she woke up, she gave me a sunny if slightly groggy smile.

She had no memory of the night before.

—

Not long after that, we made the decision to sell our New York City apartment, with its wonderful thirty-fifth-floor view of Central Park, and move out to Sag Harbor full-time. We were agreed on that, for different reasons. I felt the city was becoming an unsafe place for B. I kept imagining strangers walking up to her on the street, recognizing her, hassling her, maybe even endangering her. Then, too, I didn’t trust her driving in the city. Anything could happen. Out in Sag Harbor, she could drive into town on quiet streets, not have taxis and panel vans veering in front of her.

It wasn’t a hard sell. B.’s city life had shrunk mostly to the apartment and walking Bishop in the park. She felt she’d be happier in Sag Harbor, and maybe she would. In the back of my mind, I worried that we might be doing a geographic, as they say in Alcoholics Anonymous: making a physical move with the hope of leaving the bad stuff behind. The bad stuff of Alzheimer’s wasn’t going to be left behind any more than moving will solve an addiction. But at least she’d be safe, in a beautiful setting.

The plan was a bit sketchy, but I figured I would come into Manhattan a day or two a week, do some business with our B. Smith licensees, and stop by the restaurant to shake the staff into shape.

We had decided, back in February, to go public by writing a book. We didn’t know where it would lead, but it felt like the right thing to do. So far, it was still a private undertaking: just us starting to write down what happened each day, and trying to make it a story that would resonate, both for those fighting their own Alzheimer’s wars—and for all those who knew and loved B. It was in June, as we were emptying the apartment and moving to Sag Harbor for good, that we took what felt like a much bigger step: coming out on television with the news of B.’s condition.

As it turned out, the CBS Sunday Morning show had been running a series called “The Longest Journey,” on the impact of Alzheimer’s on a growing number of older Americans. The host was Dr. Jon LaPook, who made us feel comfortable right away when he came to Sag Harbor with his crew.

B. was in the kitchen heating water for tea as the interview began. Not surprisingly, Dr. LaPook asked B. about cooking. “Do you remember the first dish you made?”

“Um, pineapple upside-down cake,” B. said. “I was probably about ten years old.”

For anyone in his television audience who didn’t know B. yet, Dr. LaPook mentioned her triumphs in the food and lifestyle category. “Some even thought she was on her way to becoming another Martha Stewart.”

That wasn’t the first time B. had been compared to Martha Stewart, and it wouldn’t be the last. We had mixed feelings about the comparison, but the truth was that both women excelled in the business of gracious living.

Gently, Dr. LaPook made his audience aware of where B. was at now. “Do you know the date today?” he asked her.

“No.”

“Do you know the month?”

“No.”

“How about the year?”

“No.”

“And what does that feel like?”

“I feel like crying,” B. said. “Things like that make me very sad.”

For the segment, Dr. LaPook interviewed Dr. Martin Goldstein at Mount Sinai. “We typically see Alzheimer’s as a disease of old age, of frail, weak people near the ends of their lives,” Dr. Goldstein said. “That’s not B. B. is bright, dynamic, active, energetic, engaged, eloquent. B. sharing her story can change the game in terms of how people see Alzheimer’s.”

The show’s producers wanted to know how I felt about B. getting Alzheimer’s. “She has it. We have it. We have to deal with it,” I said. “More people are going to have it. And you know what? If you don’t talk about it, you’re not going to make a difference.”

“Even with Alzheimer’s, I think that things are going to work out,” B. added as the piece ended. “I’m going to do my best to make it work out for me, and for as many people that I can possibly help, too.”

That got me. “I love you,” I said.

“I love you, too,” B. said. “I’m lucky to have you as my husband and best friend.”

“I’m lucky to have you, too.”

LESSONS LEARNED

KEEPING TRACK OF THE MEDS

Many well-functioning people in their sixties take a number of pills daily for various needs. Even with clear brains, they have to focus on getting the mix right. For a patient with early-stage Alzheimer’s, that soon becomes a daunting challenge. Yet, out of pride, mild-stage patients often insist on handling their drugs themselves—the way B. did. When they lose track of which drug to take when, they may give up and put the vials in some hiding place to deal with at a later time. Often, they forget where they hid them. Sometimes, as the disease worsens, they mistake their pills for candy.

In our household, pill confusion and loss caused a lot of WTF moments until Dana intervened. She kept the pills in a place only she knew; dispensed the pills herself; and watched to be sure that B. actually swallowed them.

A better solution, at least for the early stages, is a high-tech pill dispenser. Like a home-alarm system, it’s linked to a central office. When too few or too many pills are taken, an email or call is prompted. But for this to work, the dispenser has to be properly filled by the caregiver.

Ultimately, as the disease progresses, a home health-care worker is the best one to handle the allocation and administration of all drugs. But of course, that presumes a family dealing with Alzheimer’s can afford a health-care worker. Not all can.

HALLUCINATIONS

B.’s occasional sightings of shadowy figures in a corner of the room is an all-too-typical symptom among Alzheimer’s patients. Sometimes hallucinations arise from a patient’s need to make sense of a situation: a deliveryman she didn’t expect becomes a marauder. Often, a drug seems to provoke them: in B.’s case, the antidepressant Wellbutrin led directly to hallucinations, especially when overused; when the drug was removed from her daily intake, the hallucinations went away. Unfortunately, just removing or changing a patient’s drug regimen may not do the trick. If hallucinations persist, they may indicate increasing brain damage.

At that point, of course, a doctor should be consulted. But a caregiver can at least avoid exacerbating the situation by telling the patient that what she’s seeing isn’t real. That will only upset her further, since what she sees is real to her. Better to offer a soothing response: “I don’t see that, but I’m sorry you do.” Then, if possible, ease her into a different room or out for an errand; upon her return, with any luck, the hallucination will be gone.

PROFANITY

As Paula Spencer Scott notes in Surviving Alzheimer’s, a person never known for swearing is not now doing so by coincidence. It’s a new behavior, brought on by Alzheimer’s. “In dementia…there’s damage to the part of the brain’s processing centers involved in self-control,” Spencer observes. “The person becomes less able to regulate certain behaviors, including language.” Some Alzheimer’s patients will belch or pass gas loudly: the same mental governor on those actions, acquired in childhood, is no longer at work.

Gently asking the patient to refrain from harsh language or insults may work; if not, ignoring the language may help you both.

Often, this behavior is brought on by frustration on the patient’s part about something else altogether. Perhaps children at the table are talking too quickly for the patient to understand them; perhaps your talking on the phone stokes fears in your loved one that you are making arrangements to have her placed in an assisted-living home. Perhaps bathing or dressing has grown too daunting, and the loved one is venting in response. In B.’s case, I haven’t yet figured out what the trigger might be; fortunately, she hasn’t had too many episodes of profanity, and at the end of the day, given everything else we have to worry about, profanity is pretty far down the list. I mean, what the fuck, right?

CAREGIVER GUILT

Why does a caregiver who devotes so much of his time to a family member with Alzheimer’s always end up steeped in guilt?

For me, the guilt came, at the start, from letting my frustrations get the better of me. I adore my wife but I would lose my patience when she forgot what I told her an hour before. I knew I shouldn’t hold her to the standard of a healthy person, but I did—and felt guilty for that.

That’s one kind of guilt. Another is the guilt a caregiver feels at taking time for himself. When I feel the need to get away from B. for an hour or two—perhaps to meet a friend for drinks—I’m taking the guiltiest of pleasures. How dare I have any fun while B. is at home in a cloud of confusion?

At least I love my wife. Some caregivers struggle with the guilt of having conflicted feelings about the family member they’re tending: the spouse they no longer love as they once did; the parent, perhaps, who never stopped being hypercritical. The caregiver may resent the role fate has sentenced him to—and then feel guilty about that.

A loved one’s worsening condition stirs more guilt. If only the caregiver had done more! The prospect of putting her in a nursing home? That stirs guilt, too, especially if the loved one ever made the caregiver promise not to do so.

Guilt is, to some extent, unavoidable: it goes with the territory. One way to temper it is not to set the bar as a caretaker too high. Don’t feel you have to be perfect! And don’t punish yourself when you fall short of that self-imposed standard. Aim to be a pretty good caregiver, not a perfect one: B-plus is good enough. Heck, B-minus is just fine. The goal isn’t to do everything right. It’s to keep your household from falling apart. Pass/fail—that’s the standard I’ve learned to go by.

NAVIGATING EMOTIONAL LAND MINES

Caring for a loved one with Alzheimer’s is trying enough to make anyone feel like taking the “loved” out of “loved one” on a regular basis. It’s maddening—so much so that what caregivers tend to feel more than anything else is anger. I should know—I’ve had more blowups with B. than I could possibly count. But over the time it’s taken to write this book, I’ve done a better job of keeping my frustrations in check—enough even to offer a few thoughts to others going through this slow-motion ordeal.

ANGER

Anger is understandable. But it’s damaging to both caregiver and patient. If a person with Alzheimer’s insists on eating with his fingers, admonishing him to eat with a knife and fork will do no good. It won’t correct the way he’s eating; it will upset him and make him anxious, and it certainly will upset the caregiver. Correcting the loved one as if he’s rational is, itself, irrational. Letting the loved one’s behavior stir anger is irrational, too.

One instinct is to tamp down one’s frustrations and pretend they’ll go away. Another is to blow one’s stack. Better to try a middle course: recognizing the reality that your loved one has Alzheimer’s and can’t control herself, and just letting that anger go.

This is easier said than done. But for a caregiver, even changing the language he uses to express his feelings can start to temper them. In Coping with Alzheimer’s: A Caregiver’s Emotional Survival Guide, Rose Oliver and Frances A. Bock advise cutting out “must” and “should”—as in “he must stop eating like that,” or “she should stop acting like that with me.” Instead try “I would prefer that she not do that, but she might anyway.”

Instead of “She ruined my life,” try “My life has been changed as a result of her illness. So has hers. That’s our reality.”

Instead of anger, try channeling your feelings into disappointment and acceptance. As Oliver and Bock put it, “Why let the patient control your emotions?”

Guilt and anger lead, inevitably, to resentment. A caregiver resents the loved one who got sick and took over his life. If members of his family aren’t doing their share, he will all but certainly resent them for that. Just as likely, he resents friends who get to live the happy life he led himself, before Alzheimer’s knocked on the door.

SUPPORT GROUPS

These dark, grim sentiments go with the territory. But they can be confronted. Start by admitting them, and letting them out in constructive circumstances: with relatives, good friends, or, better yet, a support group where you can hear others vent, too. The one person to avoid sharing those dark feelings with is the patient. She can’t help being in her situation any more than you can help being there with her. Anger and resentment directed at her will only upset her and exacerbate the traits that are driving you crazy as it is.

So, about caregiver support groups? I’ll be honest: I haven’t attended a support group yet myself. I did look online for one out here in the Hamptons, but there wasn’t one nearby, and driving nearly an hour to get to one, while leaving B. at home, seemed counterproductive. There was no shortage of support groups in Manhattan, but that meant, of course, an even longer commute, now that we were in Sag Harbor—committing most of the day, in fact. This is a case, I would suggest, of do what I say, not what I do. I know that support groups can be enormously helpful. Not only do they give you perspective and insights on your day-to-day challenges as a caregiver; they also put you in touch with resources, from the local branch of the Alzheimer’s Association to homegrown groups. I hope you find one near enough to attend. As our own situation progresses, I have no doubt I’ll seek one out. For now, I’m relying on my doctors, my friends, and the occasional Dark ’n Stormy to take the edge off.

THE TRAP OF SELF-PITY

I’m the first to admit I feel sorry not just for B., but myself. No doubt about it, I’ve been dealt a rough hand.

B., of course, has been dealt a worse hand! So has your loved one. Focusing on that is one way to keep the self-pity in check. It also helps to be clear-eyed about your situation. It’s bad, all right. Really bad. But are you going to get through it? Yes. I can’t tell you how many times I’ve said, “I can’t stand this…I can’t go on…This is more than I can bear.” But I am standing it, I can go on, and as hard as it is, it’s not more than I can bear.

The point, as Oliver and Bock observe in Coping with Alzheimer’s, is that caregivers have the power to put a more positive spin on the thankless task they’ve drawn—one that makes them feel less miserable while they’re doing it. Instead of “I can’t stand this” or “I can’t believe it,” try “I wish this weren’t our situation, but it is, so there we are.” Practice makes…not perfect, but less painful.

This isn’t intolerable. It’s sad and challenging but ultimately bearable. That’s the emotional choice the caregiver can make. It’s his loved one who has no choice.