Too little, too late?

I am walking down Palisade Avenue, passing the Hebrew Home on the right, and descending the hill when I notice the street is newly paved, the line down the center a freshly painted yellow. I haven’t been here on foot in over a year, with Covid preventing all visits to nursing homes (except drive-in visits). Riverdale must have made some improvements during my time away, and now that real nursing home visits are finally allowed again, I can see them. I don’t care; I just want to see my mom. But I’m half an hour early, and so I’m walking to kill time. It’s too cold to stand still; I tried that already and started to shiver. Walking is the best thing to do when you’re early and it’s cold.

I’m still outside when my phone starts to make a noise. I take it out of my pocket and notice that the caller is my mom. Well, that’s actually not true. It’s one of her aides making a FaceTime call on her behalf, the only “visits” I’ve had with my mom where I can actually see her face since the start of this pandemic. I answer, even though I’m hooded and masked and certainly unrecognizable to her, and just 15 minutes and several yards away from seeing her in person.

“I’m outside getting ready to come in for a visit,“ I say to the aide. I can’t see the aide; she is out of sight, but I know she is there, and she can hear me. I can see my mom, but she is looking off into space.

“Then I guess we’ll see you in a few minutes,” the aide says.

“Sounds good,” I say. We hang up.

I walk back up the hill and get to the front gate, but I’m still 10 minutes early, and they won’t let me in. Our visit lasts only 45 minutes, and who knows how long it will take for me to get to the meeting location. Chances are good that my visit will be truncated, but they are strict with the rules.

“Just wait right here, Miss,” a security guard says.

I move to the spot he points to, and I’m cold again. I think about the visit. I’m deep in my own head when the security guard comes back to take my temperature and to do a health screening. Have I traveled outside the country? Been exposed to anyone with Covid? Had any symptoms? No, no, and no.

A few minutes later he asks me to follow as he walks me onto the campus. There’s a car driving alongside us; he is leading them in for a visit as well, and we walk through the parking lot, over a hill, around the building, into another lot, and up to an entrance. He stops and tells the people in the car to leave their vehicle in this area. Then he leads me to another entrance, and I go in. The room alongside the Winter Garden Theatre, where I will be seeing my mom, is nearly empty, with just a few pairs of chairs sprinkled around the room with many feet between them. An old woman wearing a mask, her hair gray and somewhat stringy, sits in a wheelchair close to the entrance. When she sees me, she says something to me, and so I look at her, but I don’t know her. I walk past her and sit down in the center of the room, across from a chair maybe 6 feet away from mine and several yards away from the other sets of chairs. Just as I take off my coat, the people from the car walk through the door. It’s a woman in her early 60s with someone who appears to be her husband, around the same age, with a slight build and short gray hair like mine.

“Hi, Mom!” the woman says. The man is trailing behind her.

“Oh, I thought he was you,” says the old woman in the wheelchair, gesturing in my direction. She’s not the first person to think I am a man. They all look at me, and our eyes smile at this case of mistaken identity, and then the couple wheels the old woman over to a table where they all sit 6 feet apart, their masks firmly fitted onto their faces, and they begin to talk. The topic is the old woman’s general unhappiness.

“How’s the food?” asks the man.

“Not so good today,” says the woman in the wheelchair. It isn’t even lunchtime, so breakfast must really have sucked. She adds that the people who care for her are not nice, do not even know how to say hello.

I stop paying attention, let the sounds of their voices fade as I wait for the arrival of my mom. It feels like it’s taking a long time, but I know it really isn’t. I’m just anxious to see her. And I’m conscious of what little time we have together.

Soon a masked aide is wheeling my masked mom into the room, and she is muttering under the mask. I see her and I wave; I say hi; I am very excited. She starts to cry under the mask, and she continues muttering when she gets closer to me. I ask the aide if I can sit close to her, and he nods his head tentatively as if he is not sure, but I don’t worry because we have both been vaccinated. I move in and I hug her and put my hands over hers, and she is crying. She feels and looks very different from the way she used to look. There is very little flesh on her bones, and she seems shriveled. Her skin has more wrinkles and brown spots than I remembered. Her hair is dirty and long and combed down so that it almost sticks to her head.

None of this matters.

“I love you, Mom,” I say. “I love you.” I say it again and again, and she cries.

“Can we take our masks off?” I ask a security guard standing close by. “We are both vaccinated.”

“Which vaccine did you get?” he asks.

“Moderna,” I say.

“Did you get the second shot?”

“Yes,” I say. “A while ago.”

He nods his head, and I take off my mask and then my mom’s mask, and I hug her again. She starts to mutter again.

I look at her. She’s missing two of her front teeth, which I had already noticed during our FaceTime visits over the previous year. But in person, it somehow seems worse.

“Good,” she says. “Good.” Then she points down at her feet. She’s wearing a pair of black, patent leather shoes with bows on them, not her own shoes, at least not originally. I’ve never seen those shoes before. And they are certainly not a pair of shoes that the staff would let her wear if she were walking. It simply wouldn’t be safe. It’s clear that she spends all of her time, when not in bed or on the toilet, in a wheelchair.

She keeps pointing down at her shoes, leaning her body in that direction.

“Those are very nice shoes!” I say.

She nods her head quickly but keeps gesturing in that direction.

“What’s wrong?” I ask. She has an angry look on her face.

“Let’s go!” she says. She mutters more and wrings her hands in frustration. It looks like she is trying to get up.

“No, Mom,” I say. “We have to stay here.”

Her face turns into a scowl. 

At just that moment, the security guard throws open the door to the patio, just 10 feet away from us, letting in a blast of cold air that goes right through my bones, and I can only imagine, even more harshly through hers.

“No!!!” she screams. She is waving her hands around.

I panic.   

“Do you have to open the door?” I ask.

The security guard nods. It’s a safety measure.

“Can we move?” I ask, the panic rising in my voice as my mom starts to yell more.

“I’ll get her a blanket,” he says, moving too slowly in my opinion, and when he returns, he is draping a white scratchy towel-like thing around her, and she is still saying no.

“Can we move as far away from the door as possible?” I ask. He wheels her to the other end of the room, and I follow. I thank him.

“Are you still cold?” I ask my mom. “You can put on my coat.”

I drape it over the front of her, but the coat itself is cold, having been out in the weather all morning. Still, I want to offer her as much protection as I can. She lets it sit there for a second, and then her scowl returns. She puts her hands on the coat, and they look more wrinkly and gnarled than ever. She finds the label inside the coat and starts to pull on it, as if it bothers her, as if she finds it uncomfortable.

“All this crap!” She says. “No!”

I guess at the meaning of what she is saying. She can’t speak very well, but it’s not that difficult to understand that she doesn’t want the coat. I take it away and put it on my chair, which I have carried over from the other side of the room along with my backpack and a bag I brought with gifts for her. Inside is a stuffed animal and a bag of Hershey‘s kisses.

“I got you something,” I say, and I reach for the soft brown teddy bear and hand it to her. She looks at it, and the scowl comes back.

“Ugh! Yuck!“ she says. This is not what she wants, not at all. I take it back. 

“Let’s, let’s, let’s, let’s,” she says. “Oh, oh, oh, oh!” Her hands are in fists, and she is shaking them.

“Why don’t we… No!” she says. “You!” She puts her two fists together and hits me.

I look at her and she stares back at me, her eyes daring me to do something. They’re angry. I am quiet. I take a breath to calm myself.

I let a minute pass.

“I brought you chocolate, Mom,” I say. “Why don’t you have some?” I tear open the bag of Hershey‘s kisses and take one out and try to put it into her hand, but she won’t take it. She is saying something, but I can’t make any sense of it, and so I unwrap the candy and bring it to her lips, but she will not open her mouth.

“Try it, Mom. It’s good.” I’ve got the kiss next to her mouth, and she is shaking her head, but finally she opens her mouth and takes a tiny bite. She bites the tip off, and her expression returns to the now familiar scowl, and I don’t understand it because she loves chocolate. Then she takes her tongue and moves the tiny piece further into her mouth, and her face relaxes, and I think finally she will succumb to its sweetness, it’s creaminess. But she simply sucks for a second and swallows and when I offer her more, she closes her mouth against it. She shakes her head more firmly than ever, and I am left holding a melting piece of chocolate and a tiny piece of tin foil in the palm of my hand.

“It’s awful! It’s cold here!” She’s trying to get up again and I tell her we have to stay here.

“Oh, you!” She is angry, furious, shaking her hands, yelling, getting ready to pounce on me like an animal who feels threatened.

“Go, go! Get out of here!” she says, and she is pushing me away with her hands. She is growling, and for one moment I remember the other family in the room, wondering what they are thinking about us, but I let that thought exit my brain as quickly as it entered. It really doesn’t matter.

Still, I don’t know what to do.

“OK, Mom,” I say. “I’ll go.”

And then she stops and looks at me, and she says, “NO!”

“You don’t want me to go?”

“No!” she says. And she starts to cry.

“You always…” she says. “You don’t. You don’t!”

I come close again, and I try to hug her.

“I am so sorry I’ve been away for so long,” I say. I don’t know if she realizes this, that it’s been nearly a year since we’ve seen each other. It seems that maybe she does realize it, on some level. I keep hugging her.

“Yeah, yeah,” she says. “Why?”

“Well, Mom, I couldn’t come. We… we…” How to explain a global pandemic to a late stage Alzheimer’s patient? How to explain social distancing? “We were all sick,” I say.

“Oh, yeah, right,” she says, and she’s shaking her head, her tone telling me she doesn’t believe a word.

I settle back into my chair. There is quiet and calm for a moment.

“Come on!” she says, yet again. Her yell is low and deep, and the anger is almost palpable. She kicks me.

“I hate you!” she says. “I hate you!”

I look at her. I don’t say anything.

I still have the chocolate candy in my hand, and I walk to the corner of the room where there’s a garbage can. I throw it out.

I stand there for a moment, looking at the wall.

I come back to my chair and sit down across from her. I have nothing to give her that she wants.

I point to her shoes.

“How pretty!” I say. “They’re so nice.”

She looks at them and nods. A slight smile creeps into her face. I’ll take it, but I won’t bank on it. In this visit, this stage of her disease, everything goes one nanosecond at a time. it can all change within the blink of an eye.

I take her hand and I look at her nails. They are long, not cared for. There’s dirt underneath them. I sniff her skin, and it smells old. This moment lasts for just a few seconds, and then it all starts again.

“You’re… powerful … hateful.” Almost under her breath. Not even looking at me.

“I want to go home,” she says. She pounces on me again, hits me again.

“You will, very soon,” I say. Our visit will soon be over, and I am relieved. I hate to admit this, but the end can’t come quickly enough for me at this point. And yet, leaving her will make me sad.

“Here, Mom,” I say, handing her the teddy bear again.

“No!” she says. She doesn’t want the damn thing.

“Well then, hit him,” I say. “Hit him!”

So she takes the soft furry bear and tries to strangle him with her arthritic hands. But she can’t really do it. She can’t even strangle the bear.

She puts her head in her hands and cries. It’s a frustrated cry.

I sit there and I give up on trying to comfort her. She doesn’t want me. She wants what I can’t give her. I can’t take her away from this place; I can’t take her home; I can’t save her. I can’t even understand her. But maybe I understand her all too well. She is furious with me for not visiting her for so long. And she somehow seems to know that once again I will be leaving without her, just as I have after every visit for the last decade since I have put her in this lonely place. I abandoned her to a world without the love of her family, without the familiarity of home. She may not be able to speak very well anymore, but she can still make her disappointment very clear.

She is looking down at her lap when the aide approaches us.

“It’s time for the visit to end,” he says.

I reach again for the teddy bear, which I have returned to the chair next to me.

“Here, Mom,” I say, handing him to her. “Why don’t you take him?”

She sneers, but I drop him into her lap anyway.

“He’s soft,” I say. “Touch him.”

She puts her hands on his fur and nods.

“Isn’t he cute?” I ask.

She looks at him and appraises him.

“Yeah,” she says, tentatively. There’s none of the wonder in her face that she used to have, none of the excitement. But at least she’s not scowling.

“Take these, too,” I say, and I put the bag of Hershey‘s kisses next to her on the wheelchair, wedged between her hip and the arm of the chair. She barely notices they are there, which is good.

I get up and hug her. She doesn’t really respond.

She is muttering again when the aide wheels her away.

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Mourning

Victoria drove me to the Hebrew Home yesterday for what they call a drive-in visit. Nursing homes in New York don’t let you visit in person, not since early March, not since the city started to shut down. A couple of weeks after my last real visit, schools closed for in-person learning. And around the same time, restaurants and retail outlets and offices, and practically every place else, closed. The world, it seems, closed, even if that’s not actually true.

This is our second drive-in visit. The first was at the beginning of the summer, around the time the Hebrew Home started to offer this creative way for people to see their loved ones in more or less the same physical space. They have this glassed-in lobby area, or a little vestibule between two sets of glass doors, where they bring the resident. You stay in your car, maybe 10 or 15 feet away, and you both have speakers, the kind you get at a drive-in theater. You get fifteen minutes to talk to each other, and then you drive away.

And as we drove away, I wept. It’s nearly impossible to talk to my mother anymore. She barely knows where she is or what is happening around her, and I can hardly understand most of what she says. She mumbles, she says things that don’t make sense to me, that seem to have a place only in her own mind, and she utters words that I’ve never heard before. And getting this all through a set of speakers makes it even harder to hear and to comprehend.

And for at least part of the time, she looks off into the distance, not at me, pointing at things that might be there, might not be there. It’s hard to tell.

There were moments, though, when she looked at me, and she smiled with what I recognized as love and happiness over seeing me. I don’t know if I’m right, if what she really saw was me, or if I was someone else in her mind. But I’ve seen that look so many times over the years — when I came home for weekends while in college, or when I visited her after moving away, or even, sometimes, when I was still in high school and she would greet me in the kitchen in the morning. It was a look of love and light and appreciation for a child who means the world to you.

Because I did mean the world to her. I think I only realize that now.

At one point during our visit, she looked over and pointed to me. She said, “It’s Bill!” That’s my father’s name, and her brother’s. I don’t know which one she meant. I couldn’t understand what she said after. And then her gaze shifted away, and she was looking off into the distance, mumbling.

I don’t know if the drive-in visit is better than the FaceTime call we have almost every Monday morning. We stare at each other through a screen. I have the same problems being able to understand her. And sometimes she falls asleep with me staring at her. Sometimes I literally can’t hear a word she says because the connection is bad or she is mumbling or there’s just too much background noise.

But it’s not just me having trouble figuring out what she is saying. I can only imagine how much worse it must be on her end. She doesn’t know what’s going on or who this talking head on a screen is. Just as she probably can’t figure out during our drive-in visit why we can’t be together in the same room.

There were two sentences (actual sentences!) that I heard her say yesterday.

“Well, let’s go!” And, “This is confusing.”

It is all so confusing, but not just confusing. It’s confounding. It’s beyond anything I can put my head around. I’ve been visiting my mom at the Hebrew Home for almost seven years. She might say, if she could, that these have been the hardest years of her life. So that’s why it seems so strange that as Victoria and I drove away, I felt like I was grieving those years, grieving the moments when I could sit next to her and hold her hand. When we listened to the concerts together. Or just sat on her unit. Or when we would lie together on her bed with her head on my shoulder. We would talk, or sing together, but that happened less and less. More often, as time went on, she would just fall into a deep sleep, her head on my shoulder, her quiet breathing all that I could hear.

We’ve both lost a lot in this last decade. But losing the chance to hug my mom, to hold her hand, even to sit next to her, feels like too much.

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Social Distancing

Yesterday afternoon’s walk in Prospect Park, done for the purpose of getting fresh air and cleaning out the mental cobwebs, took me past the bandshell, the site of the many free Celebrate Brooklyn concerts I’ve enjoyed over more than two decades. I found myself for some reason thinking about a concert maybe five years ago, maybe eight, when Dr. John played his New Orleans R&B to a packed crowd. That night, I thought how great it was to get the chance to see one more legend of world music on that stage. It’s one of the reasons I live in New York. You don’t have to travel because almost everything finds its way here.

But within a minute of that remembrance, this thought also occurred to me: That was the first and last time I will ever see Dr. John. You see, he died last year, and unless his ghost finds its way north, we will never hear him play live piano again. (It wouldn’t really surprise me if New Orleanians were periodically treated to sounds of his music from beyond the tomb, but that’s another story.)

This is a thought I’ve been having again and again in the last couple of weeks, since the Coronavirus has kept me physically away from school and social life and friends and family. It’s the sense that some things, and some people, are gone from us for good.

My friend Sal, with whom I haven’t spoken in probably 10 months, is no longer around to take my call (or to make pizza for his family or take a sip from his nightly Jack and Coca Cola). Our mutual friend Gene called to tell me he died of Covid-19 about a week ago. And I had meant to call him to check up on him. It would have been too late, though, because even if I’d done it when I’d first thought about it, he’d have been unable to answer.

The last time I got to see my mom was at the end of the first week in March. After that, the nursing home wisely stopped allowing visits from outsiders. The people in her facility are so vulnerable, and there’s no way the place could be safe if I and others like me kept bringing in our germs.

At first, I was okay with the visiting restriction. Truthfully, I was a little relieved. I was tired and wanted a week off from devoting an entire Sunday to a visit. Hebrew Home started facilitating FaceTime chats between residents and their families to help them maintain communication, but I didn’t jump at the chance to do it because I doubted it would mean much to my mom and because I frankly was too caught up with trying to adapt all my lessons for online learning. I also didn’t really believe, on some subconscious level and despite evidence to the contrary, that this state of affairs would go on for very long.

After a week went by, I decided to give remote FaceTime visits a try, and so I made a request for a late afternoon time that wouldn’t interfere with my teaching. I looked forward to it, then I sat ready for it, and finally I waited as the time passed without it ever happening. Things had gotten so crazy at the Hebrew Home, with all the extra work of trying to keep a vulnerable population safe from a pandemic, that my request fell through the cracks. And by this point, they had limited their virtual visit times to specific days for each unit. I resigned myself to signing up again for the following week.

But then on Friday, while I was teaching on my computer, a FaceTime call came in on my cell phone. It was the Hebrew Home. I turned my class over to my co-teacher and swiped to let the call come in, and there sat my mom, her face blurry and her voice hard to hear. The connection was poor, and there was a lot of background noise. But when the aide showed her my face, she looked up and pointed. She said, “Mama,” I think, and then she started to cry. In some ways, I thought she looked beautiful. I mean I couldn’t really see her, but she still looked beautiful.

There wasn’t much time, and there wasn’t much to say, especially because I couldn’t hear her, but I told her I loved her and I missed her. And that I would see her soon.

On Saturday I got word that someone on her unit tested positive for the virus, putting the entire unit on quarantine. Everyone must stay in their rooms, they said. When I requested another FaceTime visit, I was told the quarantine made that impossible. I guess the strain of caring for old and demented people trapped in their rooms is already too much to manage.

I don’t know how long the quarantine will last and how long it will be before I can see her blurry face on the screen again. I don’t know how long it will be before visitors will be welcomed back to the Hebrew Home. I don’t know how much my mom will change and how much she will forget and whether, when we see each other again, she will call me Mama or Beth or any other name, or no name at all.

It’s hard to imagine that our world won’t change in big ways when we get out on the other side of this pandemic. But maybe that’s the wrong way of looking at it. Maybe there is no other side, no way to really emerge from it. Maybe its specter will stay with us, making us scared to gather and to breathe the same air, to lean in, to touch each other. Maybe those Celebrate Brooklyn concerts at the Prospect Park bandshell won’t happen any time soon. Maybe everything will be virtual, at least for a while, and possibly for a long while.

In so many ways, this will be okay. We will be okay. But for the very old, who might not survive to see normal again, the stakes will be higher. And for those of us hoping for a few more minutes with a mother who can still manage a glimpse of recognition, it will matter a lot.

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Healing

For so many reasons, I haven’t written this blog in a long time. For one thing, I’m writing a book about my mom and me, and when I have time to write, I write that. For another thing, as my mom’s Alzheimer’s progresses, there seems to be so little to say that I haven’t already said. But today, I visited my mom, and I realized I had a lot to share.

One night a few weeks ago, I got a call from the Hebrew Home telling me my mom fell and hit her head badly. The nurse asked if they should send her to Montefiore Hospital or to Allen Hospital, a community hospital close to her facility. They were afraid something might really be wrong after such a bad fall, like maybe she was bleeding into her head, and so they wanted her to get a CAT scan. I thought right away that this was going to be the end. Even if it didn’t kill her immediately, this head injury would keep her in the hospital, and once there, she would go downhill fast.

I felt sad and scared and also maybe a little relieved. Maybe “relieved” isn’t the right word. Of course I don’t really want her to go downhill. It’s just that this has gone on for too long, this Alzheimer’s Disease of hers, and she is tired. She’s old. She just turned 92. She doesn’t have a life anymore. And it’s so hard.

But it wasn’t the beginning of the end because she didn’t have to stay in the hospital. After they did the CAT scan, the doctors found nothing wrong with her, so they sent her back to the Hebrew Home.

“She’s right here, next to me,” said the nurse who took my call when I checked on her the next day. “She’s okay. But we can’t trust her to be alone anymore. She keeps getting up, and she’s not steady on her feet.”

When I went to visit her the next week, the traces of the fall were plastered all over her face. A huge bump on her left temple, and dark shadows of blue and purple and yellow all over her face. I was pretty much staring at a bruise with a nose and eyes and a mouth. It scared me.

Today, most of the colors on her face were gone, thank God, and the bump had almost disappeared. She was in a wheelchair at a table, watching an old movie. Except she wasn’t really watching it. She was looking down at the table, touching its smooth surface with her hands, muttering to herself.

I laid my hands gently on her shoulders. She put her hand on my hand. I stroked her hair, and then I leaned down to show her my face. She smiled, and I kissed her cheek.

“Oh, oh,” she said.

“Hi, Mom,” I said. “I love you.”

She smiled, touched my cheek. I smiled because she seemed happy in that moment. But I don’t think she really knew who I was.

And then we started that thing we’ve been doing for a while now, for many months at least, where she talks and I pretend to know what she is saying.

I may recognize one of her words, possibly two or even three, but they’re mixed in with a whole series of sounds I’ve never heard.

“Well? Well?” she asked.

“Yes,” I said. “Of course.”

“Oooh, I don’t know,” she said.

She kept talking and looking at me, a questioning look on her face, searching for the answer to a question I couldn’t begin to understand.

“It’s all taken care of,” I said.

“Oh, you’re so cute,” she said. And for a minute, I thought she might have mistaken me for a boyfriend she wishes she had. It was the kind of “you’re so cute” reserved for a boyfriend, not a daughter.

But whatever it was, it passed almost as quickly as it came, so I didn’t let it worry me. Then, she started another conversation I couldn’t hear, and when I asked her to repeat herself, she barked at me. She got angry, and her face looked mean. After that, she promptly closed her eyes and went to sleep.

I looked up at the movie she was watching. Spencer Tracy was talking to Ingrid Bergman, saying he wasn’t going to let Mr. Hyde come back again. We were watching Dr. Jekyll and Mr. Hyde. How perfect, I thought. Dr. Jekyll thought he could control Mr. Hyde, but he was wrong, because Hyde came back and took over his body, and visited Ingrid Bergman again. And then I looked down at my own Dr. Jekyll/Mr. Hyde, who was cooing at me one minute and barking at me the next. And she had no control over what she was doing, either.

When she woke up, she was smiling again, and calling me mama. She looked very happy. But then she started talking about poo poo and pee pee, words I haven’t heard come out of her mouth in a very long time, not since her grandchildren were babies.

She is fully incontinent now, but she sometimes knows when she needs to go, and so when she talked about it, I took her. The details don’t matter. It’s enough to say that she did what she needed to do, and I didn’t want to do what I had to do, but I did it anyway.

When we went back to the dining room, I wheeled her to her table, and she started muttering again. She said something about little kids being very cute. She asked me if I was going to get a baby, and I told her I wasn’t.

“But they’re so cute,” she said.

“Yes, they are.”

The aides brought her lunch, some spaghetti with meatballs and a few cauliflower florets. She would eat only a few very small bites, which I fed to her. Unlike in the past, I didn’t try to get her to eat more than she wanted to eat. Today, I just wanted her to have exactly what she wanted, and if that meant eating almost nothing, then I was okay with it.

She pointed at one of the cauliflower florets and started cooing.

“Ooh, look!” she said. “He’s so, so cute.”

I think she thought it was a little child, sitting on her plate.

She was eating dessert when I had to leave; it was a little cardboard container of Tofutti ice cream.

I didn’t want her to cry, so I didn’t say anything about leaving. I just kissed her on the cheek and told her I loved her.

“Where are you going?” she asked.

“Away for a little while,” I said. “I’ll be back soon.”

I didn’t look back as I walked away.

 

 

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Nostalgia

On my way to the Hebrew Home, walking up Palisade Avenue from the Metro-North train station, rain puddles trickling down the hill, I thought, inextricably, “I’m really going to miss this.” I mean, I’m going to miss these days, more than five years of them, traveling the two hours from Brooklyn to Riverdale by public transportation to visit my mom. The trips haven’t been easy, have taken a huge chunk out of a couple hundred weekends at least, and often the reward is a couple of hours in a drab room feeding candy to an old woman who increasingly doesn’t know who I am.

But when it’s over . . . I will miss it.

Victoria, my girlfriend, is selling her Washington, DC home, where she felt so happy and comfortable, and she is missing it terribly. We talked last night as she prepared to see it one last time before the first open house today. Maybe that’s why I have nostalgia on the brain.

There’s no place like home. There’s no place like home. But some homes are so much better than others. And there aren’t any ruby slippers that can take you back to them.

The Hebrew Home, where my mom has lived for more than five years, is not one of those better homes.

Today, for the first time in a long time, I visited her in the morning. It was 11 AM when I arrived, and she was sitting in the TV room, alert and happy to see me.

“I love you so much,” she said. It was the first thing out of her mouth.

Then she started to cry.

When I got her to her room, she sat herself down on her bed and then stretched out.

“You’re my son, right?”

“No, Mom, I’m your daughter.”

“But what about my son?”

“You don’t have a son.”

She was smiling, and we were being playful.

“Oh, sure I do!”

“No . . .”

We both laughed.

When we called Kathy, my mom was following along with the conversation. She didn’t understand everything, but she asked. She still didn’t understand, but she knew it.

I haven’t seen her like this in months, many months. Self-awareness, more humor than sadness, less gibberish and more sentences that make sense. She doesn’t really know to ask about me, to find out what I’m doing these days, but it’s been a long time since she’s done that. Years, even.

Is there anything I could do to bring it all back? No. Some things are gone for good.

She fell on New Year’s Day and got a huge bump on her head, then started getting belligerent. She threw something at a nurse’s aide. She stopped eating. I was certain she was dying.

“2019 is going to be a rough year,” I thought.

The grief and sadness that descended surprised me. I have been saying goodbye for almost 9 years, but I’m still not ready for the final one. I didn’t like imagining that she would no longer occupy that tiny space on the earth’s surface that she is taking up at any given moment in time. Space and time would change completely without my mom in the world.

But then, strangely enough, she bounced back, a little worse for wear, but still there. The bump went down. She started eating a little again. She got herself another boyfriend. I noticed this a few weeks ago when she was sitting next to a man in a wheelchair, putting her head on his shoulder. She doesn’t remember him when he’s not there, but that’s okay. And today, there she was asking questions. Trying to understand. Wondering where her son was. And not wanting me to go home.

Alzheimer’s is a trip. I can’t make sense out of it. It’s constantly moving and changing, speeding up and slowing down, crushing everything in its path, and then sometimes, leaving intact a tiny flower that buds and blooms. For a moment, at least.

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Happy Birthday, Mom

I haven’t written a blog post in a long time. I’ve been busy — studying, reading, planning lessons, grading papers, teaching, living my life. I still visit my mom every week, or almost every week. I still sit with her and hug her. She still doesn’t want me to leave.

When I visited her a few weeks ago, she was like she generally is these days. Her head was slumped on her shoulders when I arrived, and her eyes were closed. Her hair, long since gone white, was uncombed. She was breathing the regular, measured breaths of someone in a deep sleep. And she was sitting in the lounge, on a chair in front of the TV, surrounded by other residents.

I caressed her hair and kissed her to wake her up. She was groggy, and her first words sounded like they might be left over from her dream, because they didn’t really make sense. At least not to me.

There was a time, not too long ago, when my mom cared about her appearance. She combed her hair and put on lipstick. She had clothing preferences, certain colors she liked to wear. The way a fabric fell on her mattered to her. It’s strange to recall this, because for so many years, I listened to her put herself down. She thought she was ugly, and she said it. But she took care of herself. She may or may not have really thought she was ugly, but she was at least well-groomed. Not anymore.

I woke her and coaxed her out of her chair, and as she leaned on her walker, I saw how her clothing hung on her. I’ve been noticing this a lot lately. Her clothes often don’t match or even really fit her. If I take a quick look at the name tag on the garment, I sometimes notice it reads someone else’s name. Sometimes she is wearing a nightgown for a shirt, and she doesn’t have a bra on. And under her pants I can see the bulging of a diaper.

My mom turns 91 today, and with all that I have going on in my life, I won’t get to visit her. We won’t have cake, and she won’t open a present. This will have to wait until the weekend, but it doesn’t matter, not to her. She doesn’t know it’s her birthday. She doesn’t know what a birthday is.

But she’s not doing so badly. She still gets around on her own two feet. She still eats without much assistance. She still looks for love and comfort where she can find it. She laid her head on another patient’s shoulder, a man’s shoulder. She seems to know, instinctively, that with another human being, she can find some warmth.

And she still sometimes has flashes of reality. The last time I visited her, from the moment I arrived, she was anticipating my departure and feeling sad about it. She cried on seeing me, knowing she would have to say goodbye. She hasn’t demonstrated that kind of awareness in a while. It made me sad and happy at the same time.

I don’t have hope for my mom, at least not in the conventional sense. She is in her last moments, and life is draining out of her. And I have less to say about it, which is another reason I am not writing often. There is nothing new to report, and certainly less that is hopeful. Just as Alzheimer’s and old age are turning my mom into an empty shell, they are also making me quiet, stealing my will if not my voice. But like my mom, I still have some moments.

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Happy Mother’s Day

My mom pooped in her pants yesterday. It was pretty gross. Thank god for Harriet, one of the aides on her unit, who cleaned her up.

Last week and the week before, my mom threw up. She was at the dinner table eating the three or four bites that usually constitute her entire meal — mom was never much of an eater, even before Alzheimer’s — when suddenly she burped and started to puke. We grabbed for napkins and her bib, and she lost it all, those few bites and whatever she’d eaten or drunk an hour or two before. The first week it happened, I took her back to her room, and the nurse took her vital signs. She was fine.

The second time that she threw up, two minutes after it happened, she said, “I’m hungry.” I gave her some ice cream; it was in a little styrofoam container sitting next to her plate. She took a few spoonfuls and washed it down with coffee. If I’d told her she’d just thrown up, she would have called me a liar.

I know things happen to people as they move into very old age. Their bodies become unwieldy in a certain kind of way. Even without Alzheimer’s, very old people can have trouble putting one foot in front of the other. Body parts hurt, and they don’t move like they used to. Climbing into a pair of pants becomes difficult. And even people who don’t have dementia can lose control of their bodily functions. So much breaks down in very old age.

It’s not hard to see very old age as a time when dignity is lost. I thought that for a moment as Harriet, with a mask over her face and latex gloves on her hands, went to work to clean up my mom. Or as I held napkins in front of her face while she vomited, and the others at her table continued to eat their meals, either trying not to look or not even noticing, caught up in their own very old age. There is no dignity, it seems.

And yet, my mom never remembers these uncomfortable experiences after she has them, even a minute or two after. They don’t leave any trace of embarrassment or trauma in her memory, no remnants of pain.

On Mother’s Day last year, I posted an old photo on Facebook of my mom in her 20s. She’s sitting next to a rocky brook, the sunlight in her dark brown hair, a look of anticipation in her eyes. My father was the photographer, and it was taken before they were married. It’s the most beautiful picture I have of my mom, maybe because she is young, maybe because she is in love, maybe because my father is in love with her. Or maybe because she believes it’s all ahead of her, the marriage, the children, all the gifts that life has to give. She’s ready to receive them.

What she never expected, I would bet, is old age, the disintegration of her body and her mind. Just as I imagine she never expected a difficult marriage, or a divorce, or financial problems, or children who disappointed her or broke her heart. She never expected Alzheimer’s, either.

In some way, though, when I look at my mom today, it seems that 20-something woman isn’t all that far away. Her hair is no longer brown, and her body is no longer straight and strong. But she still has a sparkle in her eye, and when she sees me, whether she can name me or not, she still has that look of anticipation, as if she knows there is love. She has this, still. At least for now.

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New Horizons

Ever since I started my new teaching job in the fall, it’s been hard for me to take a whole Saturday or Sunday to visit my mom, so I steal time away when I can to sit with her for an hour or so. My school in the Bronx isn’t that far from the Hebrew Home, so I will sometimes get into a Lyft at the end of a day and go over.

So much happens between our visits — in my own crowded brain, if not in her life — that when I arrive I sometimes don’t recognize her. She is aging, like all of us, and changing, becoming smaller in stature and more hunched over, receding into the background as the disease takes over her brain.

It was eight years ago this month that she began to show major symptoms, eight years since she was diagnosed with Alzheimer’s. I’ve watched it steal little bits of her brain, throwing her into moments of terror and hours of desolation as she lost track of what she was trying to do, or of what her life meant. I’ve also watched it wipe away worry and anger and resentment, freeing her from the prison that her brain could sometimes be. Alzheimer’s is all-consuming. But it isn’t all bad.

Today, she is sleeping in a chair when I arrive, in a line of women sitting in front of a window, the sun streaming in. It’s such a basic pleasure, napping in the sun, and she is totally into it. The woman sitting next to her gets up to give me her chair, and as I look down, I see that my mom is wearing a dress. My mom never wears a dress. Not in the almost 50 years that I’ve been alive.

But as change goes, my mom in a dress is not that big a deal.

I take her hand and stroke it, give her a kiss on the cheek. She doesn’t stir. I smooth out her hair, whisper into her ear, lightly squeeze her arm, rest my hand on her neck, touch her shoulder, and give her a slight shake. She doesn’t move.

“You know,” says a lady sitting close by, “I never noticed until just now how much you look like her.” I nod. It’s true. The lady who says this doesn’t really know us, has no history with us, but it’s still true.

“Your mom is a trooper,” she says.

I agree with her as I look down at my mom, who is intent on staying asleep, impervious to my attempts to wake her.

“I don’t know how old she is,” the lady says, “but she’s good.”

“She’s 90,” I say.

“Well, good for her. We should all be so good when we’re that age.”

“Yes,” I say.

My mother still doesn’t move.

“Let her rest,” says the lady, and I nod, having given up trying to rouse her. I put my head on her chest to make sure she’s breathing. She is.

“You know,” says the lady, “I never noticed until just now how much you look like her.”

I nod.

“I don’t know how old she is,” the lady says, “but she’s doing good.”

“She’s 90,” I say.

“Wow. We should all be so good at that age.”

I haven’t forgotten that I’m on an Alzheimer’s unit.

I have not been sleeping well myself lately, with all of my worries about work and school and changing careers, not to mention my hot flashes, a new experience for me. My mom is doing the sleeping for me, it seems. I am happy for her.

She stays asleep for a long time, and when she wakes, she acts as if she is crawling out of a deep cave. Her voice is muffled, and only some of her words can be heard.

“Uh so I don’t ghhh mmm try that,” she says. I put my head close to hers and try to hear her, and it becomes clear that only some of her sounds are actually words.

But the sounds gradually get louder and clearer. And a few more words come out.

We sit there for a little while, and she holds my hand and kisses it. She doesn’t really know who I am — I know because I ask — and she can’t tell me what she’s thinking, not in a way I can understand. And she’s long past asking me about my life.

But still, some things pass between us. Love, for sure, and some kind of knowing. But I can’t put it into words.

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Boxing Day

I walk down the hallway toward my mom, who is leaning against her walker with her friends surrounding her. They notice me and wave as I approach. She sees me, but she doesn’t wave, and when I come up alongside her and put my hand on her shoulder, she thinks, or appears to think, that she might know me.

“Do you know who I am?” I ask.

“Um . . . maybe,” she says. “Um . . . I think so.”

I say, “Let’s go then,” and she says, “Okay.” We start walking down the hall because I really want to put my coat into her room and to give her chocolate truffles that I brought her for Christmas. And lay down on her bed and unwrap the candies for her so that she can eat them.

And take a nap with my mom.

When we walk through the door to her room, she doesn’t recognize the bed as her own, but that doesn’t matter. It’s only been her bed for four years, one month, and nine days, as long as she’s been at the Hebrew Home. Not that long, really, when you consider she’s been on the earth for 90 years, one month, and 26 days.

“Yesterday was Christmas,” I say, “so I brought you this candy.”

She gives me a blank look. The holiday that used to consume her, send her to the stores months in advance to look for gifts and decorations and weeks after as she searched for half-off Christmas ornaments and sales on candy canes, just doesn’t register. It has been her holiday for 90 years, and she’s been telling the story of it for 80 years or more — the Sunday church pageant of her childhood, the box of ribbon candy given to her every year by the pastor, the warm feeling she gets when she sees lights on a tree. But not anymore, I guess. It is no longer with her, not in the way it used to be.

We call Debbie, and she asks, “Who’s Debbie?” I tell her, “Your daughter.” We listen as Debbie talks, and my mom falls asleep to the sound of Debbie’s voice. When she awakens, I say, “Do you know me?” She says, “No,” and I say, “Okay.” But then I try to tell her I am Beth, and she says, “Beth?” Her tone tells me she doesn’t recognize the name. I have been her daughter for 48 years. But now? Not in the way I used to be. I am the kind stranger who brings chocolates, and that is something, I guess.

She falls asleep again, and tired as I am, I don’t join her. I lay there, looking at Facebook on my phone, distracting myself.

When she awakens again, she begins a conversation with me. She has something to tell me, but I can’t make it out because the words don’t go together. But she works hard to say them, so I work hard to listen. She makes up some words because she can’t remember the real ones. It is a dream she is trying to recount, I think, or something that happened earlier in the day, or something that happens regularly. I can’t tell, because I don’t recognize the combinations of words.

I teach high school now, and we give students something called “sentence frames” or “sentence starters” to help prompt their writing. They fill in the blanks of sentences that start something like “In [title of book], the author conveys the idea that _________________. And that helps them continue to write whole essays about themes and literary elements and characters in books.

As I listen to my mom tell me her dream, I can pick out her own sentence starters.

“Yes, and then _____________________________,” she says. “I can’t believe that ______________________,” she continues. “We were so ___________________.”

But I can’t understand what she’s using to fill in the blanks. The words she uses, how she combines them, and the words she makes up . . . I can’t even reproduce them here.

I still listen, though, and I pretend to understand, to encourage her, in the way you talk to a baby or a toddler whose words make sense only to them. I follow the intonation and I respond as appropriately as I can, asking for more information, whether it means anything to me or not. Like improvisation, I respond never with “No” but only with “Yes, and…”

“She was really _____________________________________,” my mom says.

“Really? I didn’t know that,” I say (and I still don’t).

“Yes! It was so ________________________,” my mom replies.

“Oh, good!” I say. “And what else?”

It doesn’t really matter, I guess, only it’s sad, because the language, the English language, has been with her for more than 85 years. But now? Not like it used to be.

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Changes

“I have to pee,” my mom said, moments after I arrived for our visit. We were entering her room, and so I turned her right around and took her into the hall bathroom. The sink in her room was broken, and I wanted her to be able to wash her hands afterward.

The hall bathroom has a shower and a separate toilet, with a sliding door. I led her to the toilet.

“Wow,” my mom said. “What do I do?”

“Well,” I said, “you pull down your pants.”

“Like this?” she asked, managing to get them down to her knees.

“Yes, and a little further,” I said. “And then you sit on the toilet.”

“What is this all about?” she asked, sitting down as I tried, from the other side of the door, to slide it closed. I didn’t really want to watch her.

“I’ve never done this before,” she said.

“Oh, I’m certain you have,” I said.

“My mommy never did this,” she said against the sound of tinkling.

“I’m sure she did,” I said.

“Do you do this?” she asked.

“Yes, I do.”

“Every day?”

“Several times a day.”

“Oh wow. I can’t believe it.”

She needed help with the toilet paper.

“How much do I take?”

I couldn’t help without opening the door and joining her. So I did.

After we left the hall bathroom, we had a cookie and a call with Kathy and then a nap. It was a nice visit.

A few weeks ago, we had the type of visit we haven’t had in a long time. She was upset and fretting about her inability to make sense of anything. She seemed aware of the loss she’s experienced and was grieving it.

For a little while, I couldn’t tell if I wanted her aware yet suffering or happy and totally out of it. (Wait. I still can’t decide about that.)

“Help me!” she called out to me from inside the bathroom in her room that day. She was worried she was going to clog the toilet and wanted me to intervene somehow.

“You’ll be fine, Mom,” I called back. “Don’t worry. Everything will be fine!”

“Please, please help me!!”

It had been a long day and I just wasn’t up to dealing with my mom’s bowel movement.

“Everything will be fine, Mom!”

“Help me!”

“I promise you everything will be fine! Just finish and flush!”

“You hate me!” she said. “You hate me. My own brother won’t even help me.”

She repeated it many times as I sat on her bed, unable or unwilling to move.

It doesn’t bother me when she thinks I’m her brother. Or when she thinks I’m her sister or her mother. Or when she forgets she even has a daughter named Beth, or any children at all. When all she remembers is her mother. In some ways, she’s climbing back into her mother’s womb. I can live with that.

But I hate when she takes me back to childhood, accusing me of hating her and trying to control me by guilting me. It doesn’t happen that much these days. And for that I thank Alzheimer’s.

The last time I visited, last Friday afternoon, we sat in the dining room where they’ve moved the TV room. Hebrew Home is making some changes. It’s a bizarre setup, meant to make better use of their space, but I have to believe they’re still in transition. A TV is mounted to a wall at the end of a room full of tables for eating, and a couple of rows of armchairs like orphans are set up haphazardly in front of it, with no sense that any of it belongs.

“Sit here,” my mom said, but there was no seat for me until I dragged a chair over from a table.

It felt like sitting in an aisle, where someone might step on us.

“Were you upstairs before?” my mom asked, and I nodded because there was nothing else to do. Upstairs? There is no upstairs.

“Is mom there?” she asked.

“No,” I said. “She’s at home.” (I never tell her anymore that having been born 137 years ago, her mother is now dead.)

“She’s home?” she asked, and I assured her, right away, that it was okay.

“She’s not alone,” I said.

“But what about me?” she asked. “She’s supposed to take me home!”

“She will,” I said. “She will.”

In all the fog and confusion, one thing is clear. Sitting in the TV room which is now in the dining room, with no ability to find her own way to the bathroom and no knowledge that she has her own room, she is homeless. Nothing exists for her beyond that chair and occasionally, the deep past.

But her words rarely lead us back there, and when they do we go only so far; her words rarely lead us anywhere anymore. And the one consolation seems to be that she doesn’t know it, at least not most of the time.

How much do I want her to know? It’s a hard question to answer.

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