One man explains how Alzheimer’s disease came to overtake his wife and reconcile his marriage.
Written by John Mascheroni, with Mervyn Kaufman.
It was a marital crisis that had been heating up for many months. Looking back, I can’t properly describe the anguish and raging arguments that preceded our visit to a Manhattan neurologist. But I do remember the times when I’d break down trying to convince my wife, Sarina, of my passionate concern, only to have her insist that I was just trying to get rid of her, that I didn’t love her anymore, that there must be someone else in my life. Then, finally, one evening, she exclaimed, “Go ahead, make the appointment. I’m sick of having you tell me I’m always forgetting things.”
It took only a few minutes for the physician to conclude, “Your husband is right, I’m afraid. You are showing signs of memory loss.”
Our sympathetic doctor quickly arranged for Sarina to see another specialist and undergo additional tests that ultimately confirmed his diagnosis: Alzheimer’s. He then reassured us that this wasting disease, a form of dementia, is not imminently terminal but likely to progress over time.
How much time? Not even he could say. As we were told repeatedly, “Every patient is different.” Since then, as the disease has progressed, our lives, but not our relationship or mutual devotion, have gradually changed, and I have been the principal caregiver.
I don’t recall when I first called her Sarina, after spotting her riding the subway to and from New York City’s High School of Music and Art, all those many years ago. But over a period of months, I began focusing on that pretty girl who traveled back and forth with me every day and turned out to be in the same freshman class.
Was it love at first sight? Probably not, for either of us, though I know I was dazzled by her outgoing personality as well as her good looks. She, in turn, may for some reason have been attracted to the awkward boy who always seemed to be holding back. We never talked about it, but little more than two years after graduating she said “yes” when I raised the subject of marriage. She rarely says “yes” now, or “no”; mainly, she shakes her head.
In an effort to get her to verbalize instead of just making gestures, I’ll often press her a bit: “Tell me what you said. I don’t understand.” Finally, she’ll come around and answer yes or no. I know I can’t just give up and be content with a nod of her head. I know her brain must be stimulated, like a muscle being flexed. Now and then, when she doesn’t respond to a question or command, I’ll revert to Italian, and somehow—perhaps because that was her first language—it registers and she’ll answer back.
Today, despite more than a decade of dealing with her illness, Sarina can still drink and swallow and, with effort, walk on her own.
I usually cut up her food, though, as she is unable to handle a knife.
I’ll place the fork in her hand so she can bring food to her mouth, which, when experiencing a tremor, she’ll do with some effort now.
Generally, Sarina is content and in amazingly good health despite her dementia. I’m happy to say she has manifested none of the classic Alzheimer’s symptoms—bouts of paranoia, fear, or insecurity—thus remaining a phenomenon and puzzlement to her physician. He’s always been frank and unwavering, insisting that though he can prescribe various medications, there’s nothing current that will actually slow, or reverse, her illness.
“What you do,” he assures me, “is far more important.” So I stay alert, making sure to be tuned in to Sarina’s evolving condition and trying to compensate, but not over-compensate, in whatever ways I can. For example, I now have to assist her more at mealtimes. She’ll usually start off eating on her own, then kind of stop. I’ll restart the process by spearing food for her, but I always hand her the fork so she’ll keep feeding herself. Her eye-hand coordination remains generally excellent; she can still pick up a cup and handle a wineglass. However, if she has trouble getting out of a chair, I won’t pull her up; I’ll just hold her hand until she musters enough leverage to get up on her own. I’m determined to maintain my wife’s dignity, her level of self-esteem and, as much as possible, her physical well-being.
“The more we learn, the less we know about Alzheimer’s,” one of our doctor’s colleagues told me. It’s certain, of course, that the disease initially attacks the portion of the brain known as the hippocampus, ultimately curtailing the brain’s capacity to store information. Accumulated plaque is what destroys neurons, plus all other circuits in the brain. In simple terms, it’s as though wires have been cut; that’s what causes memory loss. Sad but true, nobody seems to know why the disease strikes some people and not others; also, there is no known method to prevent, let alone cure, the illness.
Although Sarina takes all of her meds readily, her ability to swallow has diminished somewhat, so it’s become my job to encourage her and provide appropriate assistance—in the morning, right after breakfast, then again after dinner. Swallowing pills whole is no longer possible for her because of the danger of pulmonary aspiration (which could lead to fatal pneumonia), so I grind them up and empty the vials into a small bowl. Then I mix in berry-flavored yogurt or sometimes applesauce and slowly spoon-feed her.
Music is something Sarina has loved since childhood and still responds to emphatically. She and I have long subscribed to Sirius Radio, which has a station, “Siriusly Sinatra,” that plays vintage Frank Sinatra recordings continuously. When I tune in to it, she will often start humming, and, once in a while, if she recognizes the tune she’ll actually sing a few words, along with Sinatra. She definitely remembers songs, some of the lyrics as well as the melodies, and she’ll often rise to her feet and move to the rhythm. She loves to get up and dance.
Where moving to music is concerned, Sarina has never been inhibited. Part of what brought us together long ago was our mutual love of dancing. Sometimes she’ll want to dance when I’m cooking a meal and we can’t, of course. But if I happen to be involved in making two dishes, there might be time for me to take a break, take her hand and move out on the floor. She’s a bit awkward now when she tries to stay in rhythm with me, but I’ve learned to wait till she steps out and then get in step with her. She used to be more capable, of course, but I don’t go out of my way to make it easy for her.
When I look at her today, despite the many changes her illness has brought on, I see the same person I’ve known since we were both 15. She was emotional then, as now; in expressing her feelings, she never holds back. One night, when she was sitting in the kitchen as I was making dinner, out of nowhere I heard her say, “I love you,” taking me completely by surprise.
“You’re so patient and calm!” a friend once exclaimed. I had to smile, of course, as, in truth, there are rare times when I just lose it. I remember one night when Sarina got up right after we’d both gone to bed. I found her pacing the floor (she couldn’t leave the bedroom, as I always lock the door with a key). I brought her back to bed, got in beside her, and pulled up the covers. Soon she popped out again. This happened repeatedly until we were both exhausted but still couldn’t sleep.
That’s when my frustration and rage reached fever pitch and I physically threw her into the bed, shouting: “Stay there. Don’t move. Don’t get up anymore!” But of course she did, again and again, each time becoming more agitated. To calm her down, I gave her a mild sedative, and she was soon fast asleep. When I finally crawled into bed beside her, I tried to sleep but stayed awake most of the night, feeling remorseful and deeply sorry for having been so out of control.
The next morning, still overcome with regret, I climbed out of bed, went around to her side and, as usual, said, “Good morning, Sarina.” She opened her eyes, gave me a big, wide grin and a hug, as though nothing negative had occurred.
She didn’t remember.