NEW YORK CITY/SAG HARBOR
Summer–Fall 2013
With the diagnosis we were, at least, through the WTF period. We knew what B. had, and we had drugs to deal with it. Well—not deal with it, but make it more tolerable. Only B. kept losing the drugs. “Did you take your medicine?” I would demand.
B. would hang her head. “No,” she would say in a small voice, “I can’t find it.”
About the sixth time that happened I blew up. “This is bullshit,” I said. It wasn’t the first time I lost my temper with B., and it wouldn’t be the last. I knew that B. couldn’t help losing the drugs. I knew I should be patient when she did. Holding a person with Alzheimer’s to the same standards of responsibility and remembering as everyone else is absurd, but it happens when the person in question is your spouse. One of the hardest lessons to learn about Alzheimer’s is that your loved one is only partly the person she once was. The disease is taking over, directing her behavior. When she does something that seems disrespectful, or sloppy, or when she lashes out, or simmers in silence, that’s not your loved one. That’s the disease.
Of course, you find yourself having the same expectations of her that you did before, and so you react accordingly. That’s the bullshit. I’m sure some caregivers can put aside those expectations right away. I’m sorry to say I wasn’t one of them. I vented at B., and then felt awful about it. In retrospect, I wish I’d reached out sooner for help. Instead I thought I could do it all myself. That, I’ve since learned, is an all-too-common syndrome for caregivers. Going it alone doesn’t make you a hero. It just wears you down, and burns you out, so that you can’t be the caregiver you need to be.
We had days when the drugs were misplaced; we had others when the drugs B. took seemed to make her hallucinate. One in particular—Wellbutrin, for depression—got her thinking there were shadowy figures in the corner. Wellbutrin agitated her, too—made her hostile and restless. Once she saw her mother and started talking to her, convinced that her mother was standing right in front of her. I’m not saying it was the drug’s fault, exactly: more than once, B. got hold of a vial of the stuff, forgot she’d taken a pill earlier that day, and took another, or maybe three. Finally, I snatched the responsibility of the drugs from her, put them in a safe, secret place, and dispensed them to her one by one. At least she was getting the right drugs at the proper dosage. But now, in addition to being her pharmacist, I was shopping for groceries, cooking every meal, cleaning up after, doing the laundry, not to mention being B.’s clothes consultant every time she got dressed. And all this on top of my day job! It isn’t easy asking for help when you’re a strong, black man from Bedford-Stuyvesant, brought up to fend for yourself. But ultimately, with Alzheimer’s, you have no choice.
Dana, our daughter, was the one who came to our rescue. In October 2013, she moved up from Washington, D.C., to live with us in Manhattan. She was twenty-seven, fully independent, years past living at home. She even had a boyfriend. But she could hear my frustration, and she knew how often B. was repeating herself. I don’t remember if I asked, or she volunteered. Her parents just needed her, and that was that. Together we were learning a hard lesson about Alzheimer’s: that it changes everyone’s plans. One person has the disease, but everyone in the family is affected. No one’s life is ever the same.
With Dana came her huge Italian mastiff, Bishop—so called because he’s mostly black with a white cross on his chest. If I had rolled my eyes at the thought of such a large dog for Dana in D.C., I rolled them no more. Bishop was a godsend. Overnight he became B.’s guard dog. Somehow he just sensed her vulnerability. He watched her every move, radiated love and devotion, and curled up beside her. For B., walking Bishop in Central Park became the high point of her day. If someone recognized her and came up to say hello, Bishop blocked her protectively. I felt sorry for any mugger who might think he had a vulnerable target in B. That mugger had another thing coming.
It was, like Rick says to the police chief at the end of Casablanca, the start of a beautiful friendship. B. loves Bishop as much as he loves her, and she’s his caregiver, too—so much so that after a month or so back in New York, Dana officially gave Bishop to B. Nothing could have made B. happier. And when you think about it, what could be better for a person with Alzheimer’s than a loving service dog? Not only do they share the joy of unconditional love: they’re partners in the present tense. Bishop is oblivious to B.’s memory lapses; and all that matters to her is that he’s there for her in the moment, always loving, never judging. The only problem with this beautiful friendship, I came to see, is that B. as Bishop’s self-appointed caregiver often forgets when she’s last fed him, and how much. Sometimes he gets two meals a day, sometimes four. We took to putting a can of sardines in with his chow: good for dogs as well as humans. So now he may get one can of sardines a day…or four. To my knowledge, he’s never complained.
Dana hadn’t imagined that at twenty-seven, she would be telling her parents what to do. By the time she moved back in, though, we were so frazzled that we needed her to do just that. She took control of the drugs: from then on, she hid them from both of us, and doled them out to B. as needed. I stopped blaming B. for losing them, and B. stopped getting upset when she did. Dana started doing a lot of the cooking, too: big one-pot meals with leftovers for the next day. Dana had grown up watching B. cook mouthwatering southern food, and had come to be a good cook herself. B. was still cooking, too, but sometimes she overseasoned her dishes, forgetting she’d seasoned them already. Sometimes, too, if I had meetings away from the apartment, B. might forget to eat. Now Dana was there to be sure she did.
Most important, Dana took over the B. Smith’s restaurant on West Forty-Sixth Street. Managing the restaurant was well beyond B. now; she struggled just to greet the guests a few nights a week and keep the place aglow. The first night Dana went down with her to see how she could help, she saw that a little part of B. was lost—a part Dana had thought she still had. Still, Dana tried to stay upbeat about it. At least B. still came to the restaurant: it was still B. Smith’s. And in so many essential ways, B. was still the parent she’d always been to Dana.
Like all families, ours had its own complicated dynamic. B. is Dana’s stepmother. Dana was five when B. entered her life, and what a happy miracle that was for Dana and me both. Her birth mother and I had divorced after a very volatile marriage, and Dana hadn’t seen much of Jocelyn after that, not on any regular basis. B. was the one who came to the games: field hockey and basketball, soccer and lacrosse; Dana was quite the jock. From her birth mother, Dana had inherited a slightly manic spirit, and her relationship with Jocelyn was contentious. B. was the great equalizer, as Dana put it: cool, calm, and collected, always gentle and solicitous.
The way Dana saw it, B. had managed her life, and now Dana was returning the favor. When someone in your family gets Alzheimer’s, we were learning, you have to start to think not just about managing them but about managing your own life in tandem with theirs: building in the time to be a daily caregiver, but also scheduling time off to replenish yourself and be able to help your loved one the next day.
One night we were talking about that after B. had gone to bed. I wasn’t good at the downtime part yet—taking time for myself, “managing” it into the schedule. Dana agreed. “You suck at it, Dad,” she told me. One thing about Dana: you get the truth every time. “But I’m not so great at it, either,” she added. “In all those books about Alzheimer’s they talk about ‘managing,’ like it’s managing a checkbook.” She shook her head. “I’ve come to hate that word managing.”
B. had outbursts now. That was entirely new. I was the one she blew up at. Invariably, Dana took her side. “Why are you egging her on?” she would exclaim. I wasn’t doing anything, I would protest, like a kid whose mother was on his case. I was just telling B. where her handbag was, or asking if she’d eaten anything yet that day.
“It’s not what you say, it’s how you say it,” Dana would say. “If I wasn’t your daughter, I might punch you.”
She was right. I kept trying to be patient and understanding, but irritation crept into my tone.
Just as out of character for B. were the mild profanities she sometimes used now. One day I had a friend take B. to her hairdresser in Sag Harbor. Historically in black communities, hairdressers worked out of their homes; there weren’t any storefront salons for women in the South—or North, for that matter, except in Harlem. Decades later, Sag Harbor’s black women still go to the hairdresser’s house, affluent as their families might be. They like the custom. Also, as in the Deep South, the hairdresser’s is where gossip flows.
B. didn’t know the women under the other hair dryers that day, but they knew her, and they noticed that this household name known for her sweetness and light was swearing like a sailor. Later, the girlfriend who had brought her to the hairdresser’s took her to lunch at a restaurant in Bridgehampton. B. was happy, animated—and using language that the friend had never heard her use before. Before Alzheimer’s, I was the one who did the cursing for the whole family. I’d never heard B. curse.
That’s a funny thing about Alzheimer’s, I was starting to realize: it makes you act in ways you never did before—both the person with it and the family living it. Every day is like the beginning of a new normal.
Here was another new aspect of B.: she started raiding the kitchen late at night for sugary snacks. She’d never done that before. Nor was she ever less than neat. Now I’d pad into the kitchen in the morning and see crumbs on the counter, an opened package of cereal, or an empty pint of ice cream. I told her how bad the sugar is for her: not just for all the obvious reasons, but for Alzheimer’s, too. She told me she was sorry and said it wouldn’t happen again, but I could tell she was just saying that. She didn’t even remember having the snack.