SAG HARBOR
Winter 2014–2015
Last week I took action at last—on B.’s great mess of a clothes closet. I hired a young woman to come in and organize it. Now it looks as it once did: all the dresses neatly hung, the shoes in neat rows. It stuns me to see such order restored. It’s like going back in time. Now if only I could pay someone to do that for B.’s mind.
I hired that young woman while B. was still feeling contrite about wandering all night and scaring the bejesus out of everyone who loves her. I saw my chance and took it. Victory! Until B. came to inspect the difference. “I don’t need some stranger to tell me how to hang my clothes,” she huffed. “How dare she.”
I hadn’t expected anything different. Nor were my feelings hurt—not at this stage in the game. We caregivers know: not only does no good deed go unpunished, it gets forgotten, too! You don’t get a thank-you when a person has Alzheimer’s. You can’t expect them to appreciate all the things you do for them. They’ll rarely say thank you, because it’s not on their screen. Which is draining. At the end of the day, you want to be appreciated for what you do each day by the people who love you. That’s human. To know that is something you’ll never get…it’s hard. But still we go on, day after day, because really, what choice do we have?
No, that’s not quite true. Home-care help—that’s a choice. Until, you might say, it’s no longer a choice: you have to have it. B. and I are clearly to that point—beyond it, as far as our doctor is concerned. I keep interviewing prospects; B. keeps shooting them down. I know I should just bring someone in no matter what B. says. Somehow I just can’t do that. Not quite yet.
Christmas is coming, and for the first time in our twenty-two years together, we’ve gotten an artificial tree. We love the real ones, but I just realized we can’t take the chance. What if B. lights a candle beside the tree while I’m down at the beach walking Bishop? The whole house could go up in flames. I didn’t think this way before the Very Bad Night, but now I do: we’ve entered a new stage. Or maybe we entered it months ago and I just didn’t accept it.
In this new stage—Stage Five by the seven-stage model, Stage Two by the three-stage model—I not only can’t leave B. alone in the house for long, but I have to treat her the way I would a puppy. You love that puppy, but you know you can’t trust her on her own for a minute. Before you know it, your adorable puppy will pull the Christmas tree down.
This morning we worked together, putting the artificial branches into the metal pole trunk. It made for a good activity, and B. took pride in sticking in her share of branches. This afternoon we brought up the tree ornaments from the basement, cranked up the Nat King Cole Christmas album, and hung them on the tree. The ornaments have stories, going back as far as Everson, Pennsylvania. Last year B. recalled most of those stories. This year, not as many.
I know and accept that B. is now in midstage Alzheimer’s. Yet in so many ways she’s still B. Which is to say that so far, she doesn’t exhibit most of the symptoms associated with Stage Two—or Stage Five, whatever you want to call it. She’s still warm and affectionate most of the time; when she does get angry or agitated, it passes. She sticks to a healthy diet, takes long walks on the beach with Bishop, even goes to the gym now to work out with our trainer. Physically she’s still strong—powerful, even. Remember, this is a woman who walked the streets of Manhattan for seventeen hours—in high heels! Historically, standing armies moved twenty miles a day—that was as far as they could go before they got so tired they couldn’t fight. B. had to have gone at least that far that night and next day.
Typically, in the middle stages, other signs of difference—big signs—start to appear. B. hasn’t exhibited those yet. Loss of coordination—hand tremors, sloppier handwriting, trouble managing zippers or buttons, an unsteady walk? Not B. Trouble getting out of bed or a chair? No way. Trouble bathing or dressing? Not at all. Messy eating, trouble swallowing, hoarding of food in the bedroom? No, no, and no. Failure to recognize familiar faces? No more than the rest of us do. Clinging to her caregiver, following me around? If anything, the opposite! The symptoms she does have, worse at night—sundowning, as doctors call it? No, except…B. did wander off from that jitney at dusk. Some would call that sundowning.
I know the symptoms B. has—the short-term memory loss, the closet-rummaging and wanting to go “home,” and all the rest. I just want to believe that B. remains near the start of that middle stage. If so, she may have quite a few more years of relative mobility, human dignity, and simple pleasures. She may actually be happy much of that time—and if she’s happy, I can live with that. Assuming we get home-care help—and that’s just a matter of when, not if—maybe four days a week, I can envision a not-too-bad state of affairs where I go into the city two or three of those days for work while B. is cared for, and spend the rest of the week at home in what you might call harmony. Okay—maybe not three- or four-part harmony but a peaceful coexistence with the woman I love, whose spirit remains, to some extent, intact.
Of course, I may be in denial here: bargaining again with Alzheimer’s, a disease that is, I have come to see, completely merciless. Maybe it’s killing B.’s brain cells at a faster rate than expected, moving relentlessly toward her frontal lobes. Maybe she’s really somewhere in the middle of that middle-to-severe stage. Howard hasn’t said that exactly, but I know he’s troubled by those cognitive tests he gave B. not long ago.
Here’s why I think I’m not in denial: I know what happens in the final stage, and I know, barring some new drug’s miraculous arrival, that that’s where B. is heading. I didn’t think that a year ago. I thought we’d hang on until the new drug came along, and beat this thing after all. I’m still optimistic—but more for others than for us. The drugs will come, and a next generation may not have to endure this terrible ordeal. I just have to be realistic now about the chances of saving B.
Being realistic means more than expecting the situation to get worse. It means taking in the details of what will happen, and making appropriate plans.
In the late stage, as I now understand, amyloid plaques spread throughout the brain, like so many tombstones, accompanied by the so-called tau tangles associated with dead brain cells. The only part of the brain left intact is the strip of motor cortex and visual cortex. That’s why hospital-bound patients with end-stage Alzheimer’s do much walking and pacing: it’s the last thing they know how to do.
With the onset of the severe stage, a loved one loses the ability to communicate, along with the most basic social skills. That may bring on bursts of rage and profanity. It may bring violence, too, as a frustrated patient lashes out against her caregiver by smacking him. Just as likely, severe-stage Alzheimer’s may leave the patient docile or apathetic for long periods. She’s no longer capable of sequential thought, or of any tasks involving it: apathy is the giving up of her effort to think.
In the severe stage, language begins to fall away. The patient may not understand what you say; she may not have the words to respond. She may withdraw from social interactions. She may lose her sense of self. Now even long-term memory starts to fade.
A patient with severe-stage Alzheimer’s needs more than the company of a home-care worker. She needs help with basic functions: bathing, dressing, eating, and, eventually, what the literature discreetly calls toileting. Likely that means moving her into an assisted-living center, where she can get as much help as she needs.
Last to go are the senses and basic mobility. Talking gently and lovingly to a patient is helpful. So is touching her cheek and giving her a hug. These are gestures she likely still understands. Taking her into the sunshine, feeling a warm breeze, maybe watching a squirrel—these are the last of the simple pleasures to go.
At some point, a patient will lose even the ability to walk, and so become bedridden, as the motor and visual cortex go, too. Now the focus is on trying to keep her from developing pressure sores, on dealing with incontinence, on keeping her fed and hydrated. Let’s be blunt: in end-stage Alzheimer’s, the patient is basically immobile, incommunicative, and unresponsive, and death is imminent as one organ after another shuts down. The literature has only these words of comfort for a patient and her family at this stage. Remember, there is still a living spirit inside this diminished person, the spirit of someone you love.
So there: I see it. I see it all. But if, as we hope, B. remains near the start of that mid-to-severe stage, then we have six, maybe eight, maybe ten years left of midrange coping, and there’s a lot we can do with that.
First, as a family, we can spend more time together. B. loves it when Dana is with us, and Dana loves being with her mom. Now Dana brings Sansa, her puppy, and B. lights up as soon as she sees him. Bishop gets in on the hugs and kisses, too, and we spend hours at a time playing with the two of those dogs and watching them interact.
That’s the way we spent our Christmas, with a lot of Christmas joy, out here in Sag Harbor. The celebration started two days before, because that’s our wedding anniversary: our twenty-second. All those twenty-two years later, I’m still B.’s cut man in the corner, and to the extent she can be, she’s mine. I didn’t expect to be spending the holiday filling out B.’s Social Security and Medicare forms, but as Alzheimer’s-related tasks go, that’s a relatively happy one.
Meanwhile, I’m thrilled to report that B. and I have found—at last!—a home health-care worker we both like. Isabel’s from Ecuador, a lovely, joyous woman but not too young or attractive! Though she is, like B., beautiful inside and out. She’s got experience of the kind you want even as you wince at the thought: she comes to us having just cared for an Alzheimer’s patient who died. Well, that’s the reality. We might as well face it. I’m just so relieved that she and B. get along so well, and that she’s such an unobtrusive presence. We’re going to start by having her at the house three days a week and see how that goes. At the least, I’ll be able to go to the city for business without leaving B. on her own—a stage I know we reached some months ago, though we slid along in denial for too long after that. I can’t tell you how much better that feels: all that guilt and anxiety lifted from my shoulders. Facing reality doesn’t solve the problem. But it does make the reality easier to bear.