SIXTEEN

NEW YORK CITY

Fall 2014

One day in October, we came into the city to take a next step in getting B.’s story out to the public: an appearance on The Dr. Oz Show. We got up at 7 a.m., which is rare now for B. I asked her if she knew where we were going today. She did! I guess I’d told her enough times that it stuck. That made us both feel good.

As we left for the studio, B. looked like a million bucks, in black pants and a short jacket and heels. She looked even better after the makeup crew did their usual thing. Honestly, you wouldn’t have guessed she was a day over forty—and one damned beautiful forty-year-old woman at that.

The Dr. Oz Show is what they call live to tape: they try to film it without any redos. The live audience gave us a warm welcome, and then we all settled in to watch a short video clip that the show had made when visiting us out in Sag Harbor. B. was asked how she felt these days. “When you’re used to doing a lot of things at one time it feels like the air has been taken out,” she told the camera, “and you’re not quite the lady you were.”

“Anyone who thinks this is a walk in the park—it’s not,” I said to the interviewer. “You’re expecting what you had, but you don’t have what you had. But you still have her.”

Then the lights came up and the crowd gave us a hand, and Dr. Oz started asking us questions. He wanted to know how B. was feeling.

“I feel very good,” B. said. “I have been working out a little bit, cooking a little bit, doing things with the family and the family dog. Trying to keep our life going forward on the same plane that it always has been.”

“She has always been very independent,” I chimed in, “a person who figures out how to do things regardless. She could wear a gown, go downstairs, cook, sing, and go upstairs. She was gracious and you knew it wasn’t a façade.”

Dr. Oz asked a question I was hoping he’d ask. “Why do African Americans have twice the incidence of Alzheimer’s?”

“More diabetes, more heart disease—and they’re hesitant to get help,” I replied. That was an issue I planned to beat a lot more loudly as this journey unfolded.

When the interview was over, B. stayed and interacted with the audience. An elderly Italian lady came up and embraced her, kissing her again and again. Dr. Oz and I shared a look, and laughed. I knew what he was thinking. It was what I was thinking, too. You can’t fake the warmth that B. has about people, even people she’s never met before. And they can sense that right away.

Being out in Sag Harbor on our own, it’s easy to forget how many people love B., but they do. Oh boy, do they. Soon we would learn just how much.

LESSONS LEARNED

RUMMAGING

B.’s daily sorting through her clothes closet is the most common form of what Alzheimer’s counselors call rummaging. It can happen with silverware and kitchen goods, garages full of tools, and basements full of bric-a-brac. The rummager rarely finds what he may have started looking for; the rummaging becomes an end in itself: repetitive behavior that may arise from boredom, lack of exercise, vulnerability, or a need to feel useful.

Not infrequently, rummaging can lead to hoarding. The person with Alzheimer’s may start collecting old newspapers or magazines—month after month after month—or start hiding something of value, like the jewelry that I gave B. Unfortunately, hoarders may forget their hiding places.

In Surviving Alzheimer’s, Paula Spencer Scott suggests looking for “triggers.” “Does the behavior begin or increase when your loved one is tired or in the company of new people? Is there too much background noise? Could it be related to being left alone or not having anything to do?”

Acceptance is the best approach—with an eye toward what, perhaps, the rummager is expressing on a deeper level by her actions. There is, after all, nothing harmful about rummaging or hoarding, unless something dangerous like guns or sharp knives is involved. Hugs and love can provide the assurance a person with Alzheimer’s needs to break the pattern; finding a more constructive task for the person to do can also help. The fact is, most patients with Alzheimer’s just want to be useful, as they once were.

If the behavior persists, a caregiver may want to consider moving the objects: driving those old newspapers and magazines to the dump. I’ve found with B. that that can break the cycle.

B.’s ever-accumulating piles of clothes in her closet have finally driven me to action. I couldn’t bring myself to tell the sort of white lie that caregivers often do: removing the objects in question when the patient is asleep, and later reporting they’re in storage somewhere. Instead I’ve managed to persuade her to put a lot of her clothes in storage—for real—and I take her with me when I bring them to the storage unit.

GOING HOME

At first, B.’s talk of going home to Everson, Pennsylvania, both startled and hurt me. B.’s parents were long dead. So was one of her three brothers; a second lived in Texas, while the third, who did live in Everson, had not been close with B. for years. Aside from her late brother’s wife, and her cousin Randy, she had almost no one to visit down there. Gradually, I came to see that “going home” is more a state of mind for B. than a physical place. So jarring and disruptive is Alzheimer’s that patients often long for the place where they remember being happy and confident, where life seemed to stretch on forever. That B. had few family members to visit left may not have entered her mind.

As with all behavioral changes that come with Alzheimer’s, a caregiver should look for what might be the “trigger” for the yen to “go home.” Maybe the patient feels disoriented by a new home or day care center. Possibly she feels anxious and depressed—and home, not surprisingly, seems the antidote to all those dark feelings. A caregiver’s first reaction is usually to use reason. “This is your home,” he may say. But reason plays no part in these disease-provoked behaviors.

You could try to take the patient on a short drive, perhaps for a restaurant meal, then declare, upon returning, “We’re home!” Another idea is to break out old photograph albums and let the loved one connect visually with her sense of home. Paula Spencer Scott has pretty unsentimental advice for the more ambitious caregiver. “Don’t bend over backward making a ‘Trip to Bountiful’ reunion visit to a home place,” she writes. “Remember, someone with dementia rarely means home literally….While such a trip can be fun (if she’s physically capable), you have to brace for the possibility that even a visit to an intact old home won’t satisfy the longing that’s been expressed. If the place is gone or altered, even if your loved one can remember it, she may be even more confused.”

EMOTIONAL UPS AND DOWNS

These are very common as incidents of forgetfulness grow more noticeable and severe. A task that becomes challenging, with too many steps—like cooking—may overwhelm the patient and lead to upset or anger: what doctors call a catastrophic reaction, because it’s disproportionate to the situation at hand. Flare-ups and crying jags may just seem signs of a new irritation with one’s spouse, as they did with B. and me. A related disorder, pseudobulbar affect (PBA), sometime tied to Alzheimer’s, sometimes to a stroke or head injury, may provoke racking sobs intermittently all day.

The sooner these outbursts can be recognized as disease symptoms, the better. An aware caregiver can try to avoid “trigger” situations: assisting with tasks that have grown complex, helping the loved one complete a point in conversation, above all remaining gentle, and patient. A soothing tone works wonders; a shoulder rub never hurts. One caregiver in Paula Spencer Scott’s book reported showing old comedy films every night, from Charlie Chaplin and Abbott and Costello to the Marx Brothers. “When my mother was laughing, she didn’t cry. It was like turning the spigot off for a while.”

CLOSING OFF FRIENDS

When B. closes doors, she isn’t just pushing her family away. She’s isolating herself from friends—in her case, quite a few very close friends she’s had for decades. I do think she’s self-conscious now, in a way she never was. She doesn’t want to put herself in a situation where she can’t keep up her end of the conversation. Nor does she want to see pity in the eyes of people who’ve loved and admired her for years. I think, too, that some of her friends aren’t sure how to act, especially when B. fails to return a message. Should they assume she just forgot they called, and keep trying her, even at the risk of seeming intrusive? Or should they take her silence as a signal that she’d rather not talk to them now?

I’m not sure there’s one simple answer. I do know B. has times now of wanting to be alone. I’ve also seen her listen to messages and decline to call back. Maybe in an hour she’s forgotten that friend called, but her initial reaction is often to push that friend away—or so it seems.

To be perfectly honest, though, I may be part of the problem. I’ve got so much to juggle, between caretaking B. and trying to keep the business going, that I may not be as good a message relayer as I should be. And maybe I should be pushing B. harder to see her friends, even setting up social visits for her.

I do know this: along with diet and exercise, socializing is one of the essential measures that doctors recommend for anyone with Alzheimer’s. One recent study of eight hundred men and women, all seventy-five and older, showed that those who were more active, physically and mentally—and more socially engaged—were less likely to develop any form of dementia. Bridge clubs, dinner parties—and yes, for God’s sake, shuffleboard!

Or, for that matter, music. The other night I saw a very moving report on PBS about a retired businessman in his early seventies who has Alzheimer’s. His memory is shot, but he hasn’t lost his chops at the piano. I mean, this guy can play. So once a week or so, he joins a group of fellow musicians—all of them impressive at their instruments, all of them struggling with some form of dementia. Playing standards together makes them happy; it may also be keeping their brains from deteriorating at the rate they otherwise might. What really got me was the trio of high school musicians who sit in with them—not out of pity, or for extracurricular credit, but just for fun.

Here’s the bottom line: a healthy diet and physical exercise without social interaction on a regular basis won’t be as effective in helping keep those brain cells alive.