momsalzheimers

It’s been almost 10 years.

On November 13, 2013, I admitted my mom into the Hebrew Home. She’d been living with an Alzheimer’s diagnosis for 3 1/2 years already by that point. When she first entered the facility, she was terrified, depressed, sad, and then she fell in love with another resident, a man with a forceful personality and a confident smile. She was happier than I’d ever seen her.

But that was a long time ago. So much has happened in the years since then.

She made friends and then forgot them. She got sick of the food. She visited the Judaica Museum on the first floor, attended numerous concerts in the Winter Garden, walked many times among the sculptures on the paths along the Hudson River (all with me). She ate numerous cups of frozen yogurt in the River Cafe (also with me). She went to Grandparents’ Day every year and wore the t-shirts the staff gave her to commemorate the occasion. On every Saturday or Sunday or whatever random day I visited her, she said hello and then goodbye to me, sometimes with a smile, sometimes with tears.

As more time passed, she forgot more.

She stopped walking and dressing herself. She stopped eating on her own. She no longer put herself to bed or brought herself to the toilet. She stopped being able to talk, at least intelligibly. She submitted to the care of other people, some of whom were loving and generous. But when they did their best for her, getting her up and out, all she could do was sit in a room, in a wheelchair, look around, slump over, and fall asleep.

When I visit her now, I don’t expect much. She’s still here, but she’s really not, if you know what I mean.

When I walk into her room, I’m not sure she can see me. Sometimes, maybe, she hears me. She can squeeze my hand when I grasp hers. I can feel her breath, and when I lean over to kiss her, she might feel mine, possibly.

I just don’t know if she’s in pain. It doesn’t look like she is, but I can’t know for sure.

Strangely enough, it’s only in the years since she’s been succumbing to this illness that I have been able to heal myself. I was unhappy for most of my life. But now, I am finally happy, doing work that suits me, in a healthy relationship, and satisfied with my life. These are my best years so far.

I’m sad that she can’t see me now.

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.

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.

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.