NINETEEN

SAG HARBOR

Fall 2014

It’s October here in Sag Harbor, and the days are growing short. Over breakfast, B. will almost always ask me now: What should I do? I know she doesn’t mean to add to the stress of getting through these days, but she does. I feel responsible for coming up with a daily agenda for her—and there just isn’t that much to do, not when Alzheimer’s has encased you in its fog. I know from reading some of the books on Alzheimer’s that small, repetitive tasks can put a troubled mind at ease. I encourage B. to sort the coins she carries in that gold handbag. I get her loading and unloading the dishwasher. I know I sound like a prefeminist husband, but it pleases B. to be useful. Her favorite task is ironing: the sheets, pillowcases, and my shirts. She loves to see those linens and shirts military crisp. I keep my eye on that iron: I know that at some point, I’ll have to take it from her, and there’ll be no more ironing shirts. But as long as she can do it as well as she does, and as long as it pleases her, why not?

—

At our last office visit, our doctors, Sam Gandy and Martin Goldstein, told us new clinical trials were coming. B. would join at least one of those trials; we would take new pills and swallow another serving of hope. The problem is that B. hasn’t yet logged enough consistent time on Aricept, the drug she needs to take first. She has to take Aricept for three months before she becomes eligible for a trial.

I no longer think, as I did just a few months ago, that B. can turn this disease around by joining a new drug trial tomorrow and popping the pill that makes her well. I know the odds. No panacea is coming next year to a pharmacy near you—not for those, like B., who are well into the early stages of Alzheimer’s. The best hope we have for B. is a new drug that comes along soon enough to help alleviate her symptoms—better versions of the drugs we have now, which basically do nothing. Maybe in five years, other people in the mild stage will benefit from drugs that do more—drugs that “manage” the disease, as our doctors keep putting it, drugs that actually stop the disease from progressing. But how much these new drugs will “manage” Alzheimer’s, and by when, are questions that our doctors, as nice as they are, seem unable to answer.

To be honest, our doctors at Mount Sinai haven’t had much to tell us on any aspect of B.’s condition these last several months. She’s taking her pills; they seem to be managing her moods pretty well, better than if she weren’t on them; she hasn’t stayed consistently enough on Aricept to be eligible for trials; and…that’s about all the doctors have to say. It’s like a gun went off and the race began, and B. and I started circling the track. But then everyone in the stands just sort of went home, and we’re left going around and around with no one there to notice, much less tell us where the finish line is. We’re just on our own, passing time: Alzheimer’s time.

—

Last week, at a friend’s suggestion, I drove B. to a modest office in Southampton. Some Alzheimer’s groups are just focused on drug research; others are just focused on care. The Alzheimer’s Disease Resource Center (ADRC) has a foot in both camps. It’s also the only go-to group for Alzheimer’s on the east end of Long Island.

At the ADRC office, we met a broad-shouldered, forty-something woman with a booming voice and warm manner named Joan Motley, the office’s outreach coordinator. For any of you as old as I am, she reminded me a bit of Jo Anne Worley on Rowan and Martin’s Laugh-In. Joan heard me out for about half an hour and then held up a hand.

“Where do you think B. is now on the scale of the disease?” she asked.

“She’s mild stage,” I said, “but maybe it’s progressed a little.”

“I’m not hearing the ‘early’ anymore in what you’re saying,” Joan said. “I’m hearing the moderate. Within the three broad areas there are seven stages. I think you’re in Stage Five.”

“Stage Five, meaning what?”

With Stage Five, Joan explained, there is cognitive decline in the ability not just to remember, but to reason. “You’re still reasoning with B.,” Joan said, “expecting her to reason. You need to look at this in a different way. B. no longer has that ability.”

I felt bad having B. beside me, hearing such a blunt report. But what was to be gained by not telling her? Clearly, Joan had no hesitation about putting it out there.

“That’s hard, I know,” Joan said. “But it should take some of the weight off your shoulders. Because clearly you need help in caring for her—help for B., and time off for you.”

Joan turned to B. “Are you still driving a car?”

B. nodded. “I think I should be driving more,” she said with a little laugh, “but no one else thinks that. I’ve never had an accident. I drive to the store…”

Joan asked when B. had last driven.

“Actually about two months ago,” I said. I told Joan about the scary moment that night after dinner at the American Hotel. “She has a tough time initiating things now. She’ll get in the car but forget the key. She’ll go back for the key and forget she went to get it.”

“A lot of your perception has changed,” Joan told B. “And that affects driving. Your reaction times are not as sharp. It’s great you haven’t had an accident, but it’s no longer safe to go behind the wheel.”

The stories I’d shared—of B. losing her handbag and having clothes all over her closet—were all too typical, Joan said. She turned to B. “You worry about where you put things: it’s your stuff, what’s dear to you, and you want to remain in control. But it’s hard to keep track, and you get overwhelmed. You become a hoarder, not sure where anything is, but at least controlling the mess because it’s your closet.”

Now Joan turned back to me. “Dan, I’m going to speak very openly. You’re coasting. We have to put on the brakes. You’ve been in denial, and denial keeps us from moving forward. The fact is, you’ve done a really good job of pulling this together. But now it’s okay to get help. Until you do, your anger and frustration are just going to grow, and you’ll be too burned-out to give B. the help she needs.”

There was good news in this, Joan added, for both B. and me. Good news—right. Like it had been good news when B. was diagnosed with “mild-stage” Alzheimer’s. I’ll tell you what good news is, I thought. You tell me a cure is around the corner. That’s good news. But I refrained from saying that.

The good news for me was that with home-care help on a regular basis, I’d have some downtime—time to recharge. B. would be able to do many of the things she’d stopped doing because they overwhelmed her. Like cooking. “That passion for cooking is not lost,” Joan told her. “You just need someone next to you who can help. You’ll feel relieved; you won’t have to remember so much on your own.”

But Joan didn’t sugarcoat it. “Our challenges will become greater,” she said to B. “Now is the time to start bringing in assistance, and getting you adjusted to someone other than your husband. There will never be a right time for you to take on someone. But you need to realize that for your safety, there’s nothing but benefits in bringing someone in.”

At that, B. started to cry.

“I know it’s the pride,” Joan said, more gently now. “And you want to do everything yourself. You’re an extremely strong and confident person. But now it’s hard to do everything. It’s hard to invite a total stranger into your house, but you must.”

“If it’s the right person,” B. said again.

“You can start off slowly,” Joan said. “In particular, you want to target the days that Dan is in the city. There’s a lot of hours in the day that B. is unsafe. If there was something on the stove, or a stranger at the door…B. just can’t be left alone at home anymore.”

I heard that; I took it in. She was right. It was time. We’d just have to see if B. could take it in and accept it, too.

LESSONS LEARNED

WHAT SHOULD I BE DOING?

Patients with Alzheimer’s may be confused, but they know how sedentary they are. They wish they could be more active—and useful. Which is, of course, part of the longing to be who they were before Alzheimer’s. Finding small tasks for them to do, as I do with B., is the best therapy you can practice. If there are tasks where the two of you can work together—all the better. So far, B. and I still cook together; those are probably B.’s happiest moments.

THE STAGES OF ALZHEIMER’S

Doctors refer to both a three- and seven-stage model for the progression of Alzheimer’s. The three-stage model is, of course, simpler, but the seven-stage model allows for greater specificity on diagnostic tests. Here’s the three-stage model:

Stage One: Mild/Early

Short-term memory loss becomes apparent, especially in regard to recent conversations and events. The patient may ask questions repeatedly, and struggle in speech to find common words. Writing may become difficult. Hand-to-eye coordination may become somewhat impaired: handling silverware at the table, for example, may be a challenge. All these symptoms may bring on, or be accompanied by, mood swings and depression and/or apathy. Driving may also be an issue. Generally, Stage One lasts two to four years.

Stage Two: Moderate/Middle

Long-term memory loss becomes evident now, too; childhood recollections may fade, and the patient may have trouble recognizing family members and other familiar faces. General difficulty understanding current events, confusion about time, and loss of awareness of place, even of one’s own home. More dramatic mood swings and depressions, along with fits of anger and aggression; also uninhibited behavior. Sleeplessness is common; so is sleeping too much. Delusions may occur. Physical tremors and general slowness; difficulties in dressing and toileting. Generally, this stage lasts from two to ten years.

Stage Three: Severe/Late

Profound memory loss, inability to communicate and comprehend others. Needs round-the-clock help for all personal hygiene as well as to guard against falls. Issues with swallowing and incontinence. Delusions are common, even prevalent. At the end stage, the patient becomes immobile and unresponsive. Generally, it can last one to three years.

—

And here’s the seven-stage model:

Stage One: No impairment; memory and cognitive abilities appear normal.

Stage Two: Minor, often unnoticed memory lapses; indistinguishable from the normal memory issues of aging.

Stage Three: More difficulty finding words; the patient often becomes aware of this before others do, and tries to cover it up. Objects often misplaced. New facts hard to retain. Some mood swings and depression.

Stage Four: Increasing short-term memory loss; difficulty in completing sequential tasks like cooking and driving. Planning becomes difficult if not impossible, as do simple mathematical challenges, like balancing a checkbook or just keeping track of loose money. Greater mood swings and depression.

Stage Five: Early dementia/moderate Alzheimer’s. All symptoms are more pronounced now: more severe memory loss, including long-term memory loss, severe diminution in judgment and coordination; driving is a serious risk now.

Stage Six: Middle dementia/moderately severe Alzheimer’s. Oblivious to current events, little or no long-term memory. Home care needed for dressing, eating, and toileting. Agitation and delusions are common, especially in the late afternoon or early evening (“sundowning”). Failure to recognize family members; suspicion of others. Wandering is quite common.

Stage Seven: Late or severe dementia. Speech becomes limited. Difficulty walking and sitting. Round-the-clock home care needed. End-stage immobility and unresponsiveness.