Making Rounds and Oscar (2010) (12 page)

Tears came to Frank's eyes. They streamed down his face and he wiped them away with the back of his shirtsleeve.

"Hopefully, she'll start eating soon, Frank. In the meantime, we will continue to give her intravenous fluids and try to feed her what we can. We just have to hope for the best."

"But if that doesn't work?" he asked. The desperation was back.

I looked at him and tried to think of something positive to say. My face must have said it all. Frank started to sob.

I crossed the room and grabbed a box of tissues. I handed them to Frank and sat back down again. He took one and dabbed at his face.

"Doctor, I'm not ready for her to go," he said after a brief silence.

"I know you love her greatly, Frank. Unfortunately, this is how it happens. This is how patients with dementia eventually die."

Frank looked up at me and again began to cry.

I put my hand on his shoulder but there was nothing more to say.

CHAPTER FIFTEEN

"If there is one spot of sun spilling onto the floor, a cat will find it and soak it up."

J. A. MCINTOSH

MOST MORNINGS I OPERATE ON AUTOPILOT. I GET OUT OF
bed, jump in the shower, and get dressed without giving any of it much thought. I use the time to plan my day, figure out whether I can stop to eat breakfast, decide where I need to go and what I need to do. It's the way most of us begin our day, relying on routine and the body to know what it needs to do while we scheme and dream.

As I watched my two children learn to walk, bathe, and feed themselves, I thought of how difficult these activities are to master. Walking doesn't begin with that first step. It begins with an awkward roll, followed by an excited crawl, then a grasp for a chair leg, and more than a few bumps and bruises before that first momentous and life-changing step. Then of course there's no stopping them.

We spend the first few years of our lives learning how to do these core activities and then we move on, never giving them another thought. For most of our lives we accept the ability to take care of ourselves as a given--until a health care issue robs us or a loved one of these primal skills. When that health care issue is dementia, we wonder if we'll ever take anything for granted again.

As the dementia patient unlearns how to perform the basic functions of life, we quickly find out just how difficult it is to bathe a 189-pound man who offers no assistance. We learn that the very act of transferring someone onto the toilet can become a multiperson job. We also discover just how much patience is required to painstakingly feed a parent who has lost all vestiges of her appetite--or even an understanding of what to do with a spoon.

It's at the middle stages of dementia--when patients gradually begin to lose the ability to care for themselves independently--that they and their families begin to fall through the cracks of our health care system. Some seek assistance from worthy organizations such as the Alzheimer's Association. Others look to friends or family with previous experience. They may seek information and support from a variety of sources--but rarely do they get it from the doctor.

Unfortunately, our health care system is built largely on a model of diagnosis and treatment. As medical students and young doctors we learn to assimilate signs and symptoms of disease, attach a label or name to it, and then suggest treatment courses based on the particular diagnosis. What do you do, though, when there are no medications to give or no surgeries to perform?

What do you do when there is no cure?

"HOW DID I THINK IT WOULD END?"

Joan Scheer was sitting in her kitchen. I watched as she nervously stroked her hair and her brown eyes became watery. I had seen a lot of people crying since I embarked on this listening tour and I had to keep reminding myself that it was intended to be cathartic--perhaps even good for them. But it didn't make me feel any better. "I suppose I thought my husband would go on the way he was." Joan's daughter, Robin, passed her a tissue. "I knew he had dementia but I thought that things wouldn't change, that each morning I would continue to drive him to his adult day care center, where they would care for him until four o'clock. Then he'd come home and I'd feed him dinner, watch TV, and then we'd go to bed. I suppose I thought that we would keep this routine going until one day when he would die of old age. I guess I was naive, but I just didn't expect it to end the way it did."

The way it ended with Lawrence Scheer is the way it ends with most of the patients on Steere House's third floor. Mr. Scheer died at the nursing home, dutifully accompanied by Oscar, after a prolonged battle with Alzheimer's dementia. The last years of Larry's life were not kind. He began to wander at home, particularly at night, and eventually fell down the stairs. In the hospital, he seemed to deteriorate overnight. He became nonverbal and delirious, pulling his cast off three times before being strapped to the bed for his own protection. He was transferred from one nursing home to another before landing at Steere House. There, he continued to unlearn everything until, in the end, he could no longer walk, talk, or even recognize his family. He ultimately died from pneumonia.

"You know, I wish the doctors had told me what to expect."

"What do you mean?" I asked.

"They really didn't tell me anything about the disease or what it would do to my husband." She smiled at me through the tears. "You know how I found out how long a patient with Alzheimer's lives after they are diagnosed?"

I shook my head.

"My husband told me!"

She laughed at the absurdity of it.

"About a year or two after he was diagnosed, we were at a friend's house for dinner. It turned out he also had dementia and they had a book about Alzheimer's lying around on their coffee table. He started reading it. I came into the room and saw him sitting there with the book turned over on his lap. I asked him what he was doing and he told me point blank that he had about six more years to live."

Now she was the one shaking her head.

"He held up the book to show me and I was horrified! I raced over to Larry and took it from him. He looked at me and, very matter-of-fact, told me that based on his age at diagnosis, he had about seven to nine years--and that he had already lived for two of those years."

"But your doctors hadn't said anything about life expectancy to either of you?"

Joan leaned back in her chair. "Well, the doctors were always good with labeling. They would tell me that Larry had an Alzheimer's-type variant, but none of them ever sat me down and said, 'Your husband has dementia and here is what is going to happen to him step by step, year by year.' Instead, they would hold an X-ray in the air and talk to me about tangles and plaques as if I had been in medical school along with them. The X-rays didn't mean anything to me."

Unfortunately, I hear this all the time. I appreciate that physicians are trying to share information with patients and their families, but there are better ways of helping them cope with the disease.

Joan played with a napkin as she considered her next statement. It was as if she was sending a message through me. "I just wish there were more people in the medical community who could help guide you through the day-in and day-out aspects of living with someone with dementia."

"IT'S ALL ABOUT FUNCTION,"
a lecturer said in a class at medical school many years ago.

She paused for emphasis and looked out at the future physicians assembled before her.

"In medicine, doctors often make the mistake of pursuing diagnoses. I'm here to tell you that the name of the disease doesn't matter. It may seem important to us as physicians and many patients may think it's important, but I can guarantee you that in most cases it's irrelevant. Do you think a patient really cares if he has progressive supranuclear palsy, Alzheimer's, Pick's disease, or Lewy body dementia?"

Someone in the front row raised his hand. "But aren't all of these things important to know?"

"To the physician, they're very important," she said. "They're the language we use to convey information to one another. They help us define an illness and talk to each other about it. It's not nearly as important to the patient."

"But don't people want to know what they are up against?" the student asked in follow-up. He was one of those students who seemed to think he would get extra credit for challenging the professor.

"Absolutely. Patients like to know what's causing their discomfort or their disability. The fear of the unknown is always worse than fear attributed to something. In the end, though, it's more about the discomfort or the disability than the name or label."

She paused again for emphasis. "People care mostly about whether a disease will change the way they live.
Will I die from my disease? Will I be able to walk or care for myself? Will I be able to care for my husband, wife, or children? Will it hurt?
This is what patients care about most."

She was right, of course. When a car runs you over, you don't much care about the make or model.

"
THERE ARE TIMES
when I'm so ashamed at how I handled things," Joan said to me. "I just wish I had known more." She looked at her daughter for moral support.

"I think you have to learn it for yourself," Robin added. "There are times when I think we both failed my father."

"How so?" I asked.

"We just didn't know how to deal with him," Robin said. "Sometimes we'd get so frustrated and impatient with him. Other times, we'd just get angry over trivial things. For example, there was a point in his disease where he forgot how to put the key in the door."

"Or fasten his seat belt!" her mother interjected.

"Right! Every time we'd go for a drive, my father would ask me to show him how to buckle his seat belt and I would go over it with him in painstaking detail, like I was teaching a young child how to do it for the first time. But he never got it. I'd get so angry with him that he couldn't do it rather than just accepting the fact that you can't teach something to someone who is 'unlearning' everything. Ultimately, I had to figure this out for myself. Perhaps every caregiver does."

Now Robin was getting upset. As the memories returned, so did the guilt. They had tried so hard--done so much--but they still regretted how they'd dealt with some of the day-today issues. The guilt is as natural as the frustration. I can only imagine the anger and irritation of constantly confronting a college-educated man who can't figure out how to button his shirt or turn on the television. You
would
get angry.

"Why can't you do this anymore? A child could do it." The difference is that a child is learning. A patient with Alzheimer's is, as Robin said, "unlearning."

Like so many others in similar situations, Joan and Robin had fallen into the trap of remembering the person who
was
rather than the person who
is,
the person with the dementia. When this fact hits home, when they realize they're looking for someone who isn't there anymore, the caregiver feels guilty for having been irritated.

"If only I could have had more patience or been more understanding with him!" family members say to me. "He wasn't doing it on purpose."

"So many people have trouble knowing exactly what to do," I said to the Scheers, trying to relieve some of the burden. "Every caregiver experiences the same thing, the guilt associated with getting angry. It's ultimately something you can't possibly control."

Robin nodded, but I doubted she heard anything I had said. Intellectually, people often know that there's nothing else they can do for a parent or spouse with dementia, but it doesn't make the guilt go away. She continued her story. "I think the worst thing is that even after he was in the nursing home, I had so much trouble getting into the frame of mind just to see him. I would go to see my father, the father who had raised me, and get nothing back in return. You don't get feedback. I mean, how do you talk to someone who doesn't respond?"

Once again, the question was rhetorical. Still, I tried to answer. "I guess you do the best you can," I said. "There's value in just being there, even if you don't get the feedback you're looking for."

Joan reached over into her bag and pulled out a piece of paper. "I used to refer to this when my husband was alive and I would get angry or frustrated. It's from
Saturday
, a novel by Ian McEwan. This is what going to the nursing home was like for me: 'It's like taking flowers to a graveside--the true business is with the past.'"

We talked for another thirty minutes, covering many aspects of Larry's illness. I felt almost guilty about transitioning the conversation to address the real reason for my visit. Thankfully, when Oscar's name came up the Scheer family didn't seem to mind. For the first time since we had begun talking, Joan even smiled.

"You know," Robin began, "we really thought Oscar had missed the boat with my father. He was in the final stages of dying and we still hadn't seen him once. Not one visit.

"We had heard about his exploits in the past from others and we were really confused. To pass the time, my mother and I went looking for him and found him in the opposite hallway sitting with another patient. He looked real anxious. I remember my mother addressed Oscar and told him he was not doing his job. A little while after we returned to my father's room, Oscar suddenly raced into the room as if the clock had just started to strike twelve."

"Like Cinderella racing out of the ball," Joan added.

"It was only later that we learned another patient was dying on the other side of the unit," Robin said. "Oscar stayed with the other patient until he was gone. Then he raced over!"

A look of awe had fallen over Robin's face. Across the table, Joan seemed to share in the amazement of what they had witnessed.

"Oscar allowed me to pick him up briefly and then jumped off my lap and went right over to Dad. A few hours later, my father died."

Robin started to laugh. "Funny thing is that an hour or so before my father died, a hospice nurse came in to do her assessment. When she was finished, she suggested that we take a break. 'Your father still has time,' she told us. Mom and I both looked at each other, but neither of us wanted to go. We figured we should take our cue from Oscar. It was a good thing, too, because he was right. Had Oscar not been there at the end, we might have listened to the nurse and missed being there when he died."

"It's not that we trusted the cat more than the nurse," Joan said. "Not, exactly. It was...well, there was just something about Oscar. He seemed so convinced of what he was doing. He was so clear in his intention and his dedication."

Robin summed it up: "This beautiful creature was sending us a sign. It would have been wrong to ignore it."

"
A DOCTOR CAN GIVE
you a label but it's not about that. There's nothing in the name. You want to know how to deal with the disease, what it's going to do to you."