NEW YORK CITY
Spring 2013
In our twenty-one-year marriage, I had acted not just as B.’s husband and best friend but as her business partner. I did the negotiating, got the book contracts and magazine deals and product endorsements. Now I had a new role: caregiver.
I knew that hiring someone to help would make the most sense. I just didn’t want to do it. I couldn’t imagine a stranger in our Manhattan apartment, let alone our Sag Harbor house. I also felt no one could care better for B. than me. Which was true. But I hadn’t anticipated how all-consuming that new job would be as the months wore on. All you caregivers out there—you know what I mean. It’s hard.
For starters, I now did most of the house stuff: shopping and cooking, keeping the kitchen clean, and picking up after B. If I had meetings outside the apartment, I had to be sure B. would remember to eat while I was gone. Usually she didn’t.
A regular stop on my rounds was the B. Smith’s on Restaurant Row. The restaurant was sputtering but still going, in part because B. could still stop by and talk up the tables. Unfortunately, the B. Smith’s restaurant in Washington, D.C., had closed earlier in 2013. Despite the good business we were doing, the rent was just too high for a location in Union Station, elegant as the station’s restoration might be. As for our Sag Harbor site, it would last the summer of 2013, but I saw no way to justify keeping it through the next winter, a season when all Hamptons businesses struggle to stay alive. There, too, a high rent crimped our profits, and our biggest draw—B. herself—no longer felt able to talk up the summer crowd night after night.
In all three restaurants, B. had been my full-time partner. She was at best a part-time partner now, and in a very limited way. It was like having one hand tied behind my back. Thank God we had all those B. Smith products in Bed Bath & Beyond and a strong relationship with the company.
One of my largest frustrations had nothing to do with the business. B. was losing her intellectual curiosity. She couldn’t get through a book. Movies and plays and the rest of the arts were simply a blur to her now. That was hard for me. I like a woman who’s engaged with the world, who has opinions. If they’re different from my opinions, all the better. A sharp debate creates tension, and tension creates sexual desire. When B. and I started dating, we could spend the whole evening debating the war with Iraq—the first President Bush’s war—and let me tell you, the end of an evening like that was hot. I had to accept that that whole dynamic was pretty much gone, and not coming back.
Which is not to say that sex was gone from our marriage. It was just at a very different vibe.
At sixty-four, B. was still a beautiful woman—a world-class stunner, with that fabulous smile, perfect complexion, and gorgeous figure. You look at the picture on this book and tell me: Does she not look at least fifteen years younger than her age? The desire I felt for her when we met was all-consuming; I still felt desire for her now, but on B.’s side the passion was gone. She loved me, but in a distracted way. She cuddled, but that was about it. The lover I knew was gone, replaced by a new, more muted version of the woman I had married.
To be totally up front about it, I had my own issues. I was a veteran of prostate cancer. To the outside world, B. and I were as glamorous a couple as you could find. Privately we were struggling well before B.’s first memory lapse—before I even heard the word caregiver, much less knew what it involved. I got through the prostate surgery—the right way, which I won’t elaborate on here; that’s for another book—and I recovered, so as that scare eased, I was up for a little flirting from my wife, the kind that used to be as natural as breathing. We were still breathing, but flirting was just one of the many things we’d lost with Alzheimer’s.
Instead, I had to do all the initiating. B. was sweet and gentle—affectionate, too. Just not responsive. Quiet—I guess that’s the word that puts it best. Most of the time I resented the disease, but not always. Sometimes I resented B., too.
Now that we had the diagnosis, I tried viewing the physical side of our marriage in a new way. As a person with Alzheimer’s, B. lived more and more in the present. My challenge, as her husband and caregiver, was to immerse myself in the present tense with her. Not to expect her to remember what we’d planned for the day, or what we did the day before. Just to be there with her. And what in our day-to-day lives is more present tense than sex? In those moments of connection, all else is forgotten and falls away. How different, then, is making love when one of those two people has Alzheimer’s? Before and after—yes. Very different. But not in the act itself.
B. couldn’t join me in my world of past and future tense. But I could join her in her world, and make her happy there—and in so doing, make myself happy, too.
The doctors and therapists who work with Alzheimer’s caregivers have a phrase for this. Joining the journey. Your loved one with Alzheimer’s is on a journey you cannot block or prevent. You can’t even pull her aside for a while, trying to shake her into remembering what seems so obvious to you. All you can do is join the journey—to share with her each next moment of being, even as each next moment displaces the last. Making love, I’ve come to realize, is the ultimate in-the-moment experience for a couple coping with Alzheimer’s.
So is our time together after making love. That’s the one time left when we still converse with real intimacy. It’s when B.’s innermost feelings come out. It’s when she’ll say, “I know you love me, and I know you care, and I know I’m lucky to have you.”
I feel that same depth of intimacy for her, even knowing the person beside me isn’t quite the person she was. She’s still B. to me—still beautiful, with all that same physical topography I know so well, and the same taste of her lips, and same sweet smell of her I’ve known so long I can’t imagine not knowing it anymore.