And her husband, the man she depended on for so many years. For so many. The man she combed her hair for and put on lipstick for every night before he came home for so many years. He is so mightily compromised now. She must make the decisions, balance the checkbook, cook, clean, remind him to take his medication, remind him of practically everything. If she goes out without him, she worries about him. Has he fallen? Has he come out into the hall looking for her? At night, she must suffer through his restlessness, his talking out loud. It’s as though someone wheeled a shiny new ten-speed to her door and said, “Hey, you eighty-eight-year-old woman who never learned to ride a bike! How about hopping up on this one?” And it is not an invitation. It is a directive. There she sits, high up on an uncomfortable seat, leaning toward the handlebars, disoriented, frightened, ill-prepared and without choice: she must pedal forward into whatever is ahead. It comes to me that when she says she is “waiting for the other shoe to drop,” she means that the landscape she is riding through is ever shifting, ever worsening. Surely some end will soon be reached, one way or another, and whatever it is, it will be fearsome and ugly.
And there is this: my father has left her before he has left her. What is a woman to do with this? Fall to her knees and weep? She would be justified in doing so. Square her chin and toughen up while at the same time offering limitless compassion? That would be nice, but it’s impossible. She finds herself living in anger and despair. Hating the man she loves. And we don’t help, we children, with the way we side with one of them, then the other; and now it is his turn to have us on his side, and we are vilifying her because when we have someone to blame, all of this is less painful for us. In a way, she is taking care of us more than she ever did before, at the same time that she is taking care of him. Or trying to. However much we may condemn her, she is trying to take care of him. She has to. On Monday and Tuesday and Wednesday. At nine o’clock, ten o’clock, eleven. Right now, all the time, she has to.
* * *
In the morning, my parents, my sister, and I went to the VA Hospital, a vast institution with a maze of hallways and signs everywhere to help people find where they need to go. It was another gray and rainy day, cold out, no comfort there. My father had two appointments: first, he needed to be evaluated mentally; then he needed to be fitted with a walker, which my mother found disgusting. More than once, she has said that my father’s difficulty in ambulation has to do with his lack of will: he doesn’t need to drag his feet that way. She walks ahead of him to convey her displeasure at what she sees as his deliberate lack of cooperation.
We were all put into a room, and when the doctor came in, he explained that he would be doing some more in-depth testing on my dad, and that he would also like to hear from each of us. He asked my mother a series of questions about my father: how long it had been since she had noticed changes in his mentation, how they manifested, had my father’s delusions ever included him, say, talking to the people he “saw” when they were back in the old place. “No,” she said, he never talked back to them. Did he ever have to be reminded to take care of himself—to keep himself cleaned and groomed? My mother shook her head and looked at her lap and said, “No.” And when she denied that he needed help with these things, I felt that for one moment, at least, she had moved back to his side.
I thought of the Old Spice my father always used to wear, the way he would not come into the kitchen until he was shaved and his hair combed. He might still be in his bathrobe, but the lapels would be lying flat, and he would be groomed. He would, in fact, be better groomed than his wife and his younger daughter (me), we two women who did not bother to comb our hair or wash our faces before plunking down at the kitchen table for that first delicious cup of coffee.
The doctor asked about how well my father walked and my mother said disdainfully, “I’d say it was more of a shuffle.” And I wanted to reach behind my father’s back to where she sat on his other side and pinch her.
When it was my sister’s turn to talk, she mentioned that my dad had gotten significantly weaker. That his other doctor had said his heart murmur now sounded like a snowblower. The doctor looked for confirmation of this in the chart and noted that my father’s congestive heart failure and aortic valve stenosis were new. Yes, my sister said, those were new. And when she said this, it was as though she made a blanket of the air, and drew herself into it for comfort. The way she spoke was both gentle and defensive. She told the doctor she thought my father had begun to change after he developed macular degeneration and hearing loss. His world got a lot smaller when he couldn’t read the paper or hear the news or drive anywhere anymore. Implicit in this was: What do you think would happen to you if you were so deprived?
When it was my turn, I said that my concern was that my father get the best care possible and that we find a way to give my mother the support she needs, physical and mental.
All this time, in the midst of us, my father sat in his wheelchair, erect and as dignified as he could be. His hat was on his head with the bill centered exactly in the middle of his forehead; his hands were folded in his lap. All of us blabbing about him and him not saying one word to clarify or to defend himself in any way. If I had been my dad and my wife had said I shuffled, in that arch way, I’d have given her a look, at least. He did not react defensively to anything anyone said. He sat still, letting us talk.
Then it was his turn. The doctor asked him if he was having any trouble with his memory. “Yeah, I am,” my dad said, but he did not quantify or qualify; he just told the truth, which he always does. He will not lie. Ever. “Is your memory loss causing any problems?” the doctor asked, and my dad said yes, it was causing a lot of arguments between him and his wife.
The doctor asked him if he knew the date. A moment, and then my father gave the correct day. The month? He got it right. The season? “It’s supposed to be spring,” my dad said, and I hoped the doctor would understand that my dad was referring to the fact that it had actually snowed last night. How about the year? the doctor asked, and my dad hesitated, then chuckled. “Haven’t thought about that for a while,” he said, and the doctor sat still, waiting. Finally, “Eleven,” my dad said. “Two thousand eleven,” and I actually felt my heart jump up in joy.
“Do you read the paper or listen to the news?” the doctor asked, and my dad said sometimes. “There’s been a lot in the news lately about Japan,” the doctor said, referring to the earthquake and tsunami. “Do you know what’s going on in Japan?”
“Well, I believe they got some water there,” my dad said.
“Any injuries?” the doctor asked.
“I assume so,” my dad said.
“What caused the water problem?” the doctor asked, and my dad said he didn’t know.
“What’s going on in Libya?” the doctor asked, and my father said, “I don’t know.”
I thought, Didn’t you just hear what my sister said? Our dad can’t hear well—he doesn’t hear the news. And I didn’t believe he and my mother talked about the news. I thought, I’ll bet if you asked “normal” people what was going on in Libya, a large percentage of them wouldn’t be able to answer. Sad but true.
The doctor said he was going to give my dad some tests now, okay? Okay, my dad said, most agreeably, but I felt my guard go up. The doctor said, “I’m going to give you three words, and I want you to try to remember them. The words are: village, heaven, and finger.” He repeated the words, then asked my dad to say them back, which he did. They talked a bit more and then the doctor said, “What were the three words?” My dad sat still. Finally, the doctor said, “One of the words started with an f, like Frank.” Silence. Finally, my dad shrugged and offered the doctor his upturned palms. “Lost it,” he said.
“Was it friendly, finger, or frankfurter?” the doctor asked, and my dad said immediately, “Finger!” This happened many times. Just that way. My dad never remembered until it was multiple choice. But
he did remember then.
My father was asked to count backward from one hundred by sevens, and he did very well. Better than my sister or my mother or I could have.
He asked my dad to draw a clock. My dad can hardly see to write, but I watched him make a rather small circle. He wrote in the twelve, three, six, and nine, and then squeezed in the other numbers. It was hard for him to do; the circle he drew was small, his vision is so compromised, and it’s not easy to draw and write when a paper is being held up before you. “Now make the clock read 11:10,” the doctor said, and my dad did that more or less correctly—it was hard to do because the numbers were smashed together a bit. But he did it. And the doctor did not say, “Very good.” But I did, inside.
The doctor took my dad out in the hall to check his balance and to watch him walk. He brought him back in and sat him down and asked him to look up and down, left and right. He looked in my dad’s mouth. He tested his peripheral vision.
When the doctor had finished testing, he sat back in his chair and said to my dad, “I understand that what you were diagnosed with before was mild cognitive disorder. But I would say you have early Alzheimer’s disease. It’s all semantics, really, but I would say you have that.”
I thought two things right away. One was Don’t you say that about my dad. The other was Oh my God, how will my mother manage this? My sister was sitting next to me, and later I learned that the two things she was feeling were this: Well, I hope Mom’s happy now. She got her diagnosis. The other was So what? His heart disease will kill him before his Alzheimer’s will. Mostly, though, like me, she got a new layer of ache inside.
Any questions before you leave? the doctor asked. He had told us that my dad would have to come back again, and that we would need a family conference to best decide how to care for my parents. He had said in unequivocal terms that my mother could not live in their old house anymore—not with my dad, not without him. So there went my mother’s escape hatch.
I didn’t like this doctor very much. I didn’t think he was the most compassionate of men. I didn’t see any signs that he had much of a sense of humor. He didn’t seem particularly sensitive to the fact that my father was embarrassed by his failings, and that he had been subjected to difficult testing in front of an audience, not only of family members, but also a doctor in training, who sat on a little stool at the back and seemed to have trouble staying interested in what was going on before him. Late night last night? I wanted to ask him.
Did we have any questions? the doctor wanted to know. I did have some questions. They were:
How about I test you, buster? Can you make chicken paprikash without a recipe and speak German fluently? Could you have fought in two wars? Could you bury an eight-month-old daughter? Can you sew a straight seam by hand and whistle like a bird and sing ba-ba-ba-boo like Bing Crosby? Could you have gone back to school as an adult and excelled in trigonometry? Are you able to be nonjudgmental? Could you stay married to the same woman for sixty-eight years?
“No,” I said. “No questions.”
Later that night, I attended a dinner and did a reading for a fundraiser, and I brought my mother and sister along with me. My nephew, Jeff, stayed with my father. After the reading, I went up to the apartment with my mother and sat chatting with her and my father. I felt a kind of desperation: I was leaving the next morning, this would be the last time I saw them for a while, and there were things I felt needed to be resolved. I made my way into the question of how it was going there, really. Again, my father said he liked it there. Again, my mother talked about how there were too many old people. Oh, she knew she was old herself, she said, but she didn’t want to be around all those other old people. My father laughed and said, Well, he did. He liked being around people his own age; he didn’t want to be around “teenagers, with their rock and roll.” He said, “This is my idea of retirement, just relaxing a little.”
“Well, that’s where I disagree with you,” my mother said. “I think if you just sit around all the time, you get old.”
I told my mother that from my vantage point, she didn’t really seem to be trying. If she wanted to see other people, she could go to the church that the bus will take her to, to the mall that is close by. Young children play on the playground attached to her building, and if she wanted to, she could volunteer to read to the kids. There is a college campus across the street she can walk to, where concerts are given that she could attend if she felt like it. She could go to the public library and wander the stacks, and then treat herself to a scone and tea.
I told her that she seemed full of criticism, full of complaint. “When your new neighbors moved in and I asked you about them, all you told me is that she was on a walker and he used a cane. What about the people behind the walker and the cane? What bothers you so much about seeing a walker or a wheelchair?”
“Well,” she said, “to be honest, I might be in one myself one day. Why do I have to see it before it happens?”
“But if you get to know people using such things, their equipment disappears. You concentrate on the personality, not the assistive device.”
She shrugged.
“You seem so angry all the time,” I told her. “But you’re the one who wanted to come here!”
“I didn’t realize it would be like this,” she said. “It’s like a morgue around here.”
“But you still have a lot you’re interested in,” I said. “You have a lot of joy inside.”
“Not anymore,” she said, bitterly.
So much was taken from my mother when her sister died, and she still has not had time to properly grieve her. But now I said, “What if you had died and Tish had lived? She would have mourned you, but she would have gone on with her life. She would have stayed involved in her children’s and her grandchildren’s lives. She would have been giving dinners for people all the time; she was a very giving person.”
My mother raised her chin. “So what you’re saying is that I’m not a giving person.”
I hesitated, then said, “I think you could be a little more giving.”
Silence.
“I know it’s been hard,” I said. “I know it’s not perfect here. But like the doctor suggested today, it’s safe here—you really couldn’t stay in the house. And I think you need to try some things, to just…Have you tried the book club?”
“No,” she said, and gestured with her thumb at my father. “I can’t leave him.”
My father spoke up, and his voice was gentle. “I don’t need a babysitter. That’s what this amounts to. When Jeff stayed with me tonight, he didn’t have to do anything for me—he read and watched television. I don’t need someone to be with me.” He thought for a minute, then said, “I guess it’s so if anything happens…”
“Right,” I said. “But how about if Mom went to the book club in the library, and you came down and sat in the lobby?”
Silence.
I thought about how my father had wanted to go down to dinner, and my mother wouldn’t go. “Would you be willing to try breakfast one day a week with Dad?” I asked my mom.
She made some sign of reluctant agreement.
“What about tomorrow?” I said. “Just go one day a week.”
“Can’t do it tomorrow. Tomorrow the physical therapist comes.”
“Mom,” I said. “The therapist is coming at ten. Breakfast is from seven to nine. That’s just some baloney excuse you’re handing me.”
She agreed that it was. “But he sleeps in, in the morning!” she said. “I can’t get him up!”
“That’s not true,” he said. “I’m awake in the morning. I lie there because there’s nothing to get up for.”
My mother’s mouth was set in a straight line. I told her, “You know, this is the man who jumped into the ocean to get a letter from you.” It’s true. During World War II, my father was on the deck of the sh
ip he was stationed to and he opened a letter from my mother, which blew out of his hand. He jumped right into the ocean to retrieve it. When he told me that, I couldn’t believe it. “Wasn’t that awfully dangerous?” I asked. “Yeah,” he said. “I guess I didn’t really think about it.”
“It seems to me,” I told my mother, “that for you to go down to breakfast one day a week with him is not so much of a sacrifice.”
At one point in the conversation, my mother said of my father, “Do you think he knows what the doctor said today?”
I looked at my father. “Dad? Did you understand what the doctor said today?”
He turned his blue eyes on me, What’s that?
“You know when you got tested today?”
“Yeah.”
“You…you know how you have some memory problems?”
“Right.”
“So…you took the test, and in some areas you did really well. The numbers, for example, you did better than any of us could have. But in other areas, you seem not to be doing as well. Your memory. But I just want to say that to me, you seem generally better. You’re perfectly clear on the phone. Your lungs are better, you were walking really well with the walker. You seem to be in pretty good shape, really.”
“I feel good,” he said, and hope flew around the room and collided with denial.
I took my leave soon afterward, and when I embraced my mother, I said, “I’m sorry I yelled at you.”
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