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.

About daughter3

My mom has Alzheimer's disease. She's 91 and lives in a nursing home. She has three daughters. I'm her youngest.
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18 Responses to Too little, too late?

  1. Nancy Shamban says:

    Dear Beth, so, so painful..all of it. Poor you, poor her, horrible disease. I am so sorry.
    I do suggest you tell the home you are upset at their lack of care. She is not being cared for physically. That can be improved. Bathing, hair washing, nail cutting etc are basic.
    I hope you are well otherwise. Nancy

  2. Christine says:

    Beth, sorry you are going through this. It’s brutal. Your writing of the incident however is brilliant. Couldn’t stop reading. Will be thinking about your and your mother….

  3. Anita says:

    Hi Beth I have been following the riveting stories of your mom. It sounds like she wants to leave with you. Is that an option? I apologize in advance for my ignorance.

    • daughter3 says:

      Hi Anita. Thank you so much for reading. No apologies are necessary. Unfortunately, it isn’t possible to take my mom with me. She is very late stage at this point, and she wouldn’t be able to live with me. She requires a lot more care than I could ever give her. Also, I think she is even too frail at this point for me to take her for a car ride. I wish things were different. Thank you again.

  4. Nancy Polito Arvizzigno says:

    Your thoughts are beautiful and I am amazed at how you are able to capture all the feelings related to Alzheimer’s disease. I truly believe that Alzheimer’s destroys ones memory but not the emotions. It seems like your Mom knows you haven’t visited in a long time and it sad. Unfortunately she doesn’t understand the reason fir your absence. Having lost my Mom 10 years ago to this dreadful illness, your writing helps me to process my loss.

    I hope and pray that you have some visits with your Mom when she recognizes you and is not angry. I’m so sorry you have to go through this; it is extremely difficult. Hang in there Beth. I would be happy to talk with you.♥️

    • daughter3 says:

      Thanks so much, Nancy. I’m really sorry that you lost your mom to Alzheimer’s. I agree with what you are saying about memory and emotions. In fact, I sometimes think my mom is more in touch with her emotions now than she ever was. She doesn’t have her brain telling her that how she is feeling is wrong or hurtful to others. (It is of course not wrong.) This has been such a long journey for my mom. I don’t want to lose her, but I think her life might be more painful than pleasurable at this point. But I do, of course, hope that her anger will subside and that we can have some visits that make her happy. Thank you again.

  5. Meredith Rung Creswell says:

    This was a captivatingly written, heart-wrenching account of….. remnants….with which Alzheimer’s, Disease, sadly, only leaves us. But I must tell you that you did NOT “abandon” your mom. You gave her a chance to live her life with professionals who know, study, and understand the disease….and can care for her without the intrusion of emotion, guilt, heartbreak. Your focus on visiting your mom, whether by zoom or in person…..your hope for an occasional positive remnant to emerge…..and your graciousness in sharing with others…indicate love and devotion, as well as protection of your mom AND her family,….but NEVER abandonment. ❤

    • daughter3 says:

      Thank you so much, Miss Rung, for your kind words. Yes, most of me knows that I have not abandoned my mom. It’s just that little voice in the back of my head that wishes things could be different, that wants to find someone to blame and somehow settles on me. I just had another visit with her on Saturday, and it went much better. She was happy to see me and she enjoyed our time together. So did I.

  6. laurajstein says:

    Hi Beth, I am glad to hear that you had a better visit on Saturday. Thanks so much for your eloquent writing about you and your mom’s intensely difficult situation. I can relate to what you said about your mom being more in touch with her emotions. My mother has frequently told me she loves me in the past year, during end stage Alzheimer’s, in a way she never did before. Hang in there and keep writing! It’s very much appreciated. Thanks!

  7. daughter3 says:

    Hi Laura. It’s so good to hear from you. I’m really glad to hear that you’re getting more expressions of love from your mom than you’ve gotten in the past. It makes me think yet again that through all the hell of this disease, there are a few blessings. Anyway, that’s how I see it sometimes. I hope things are good with you. Take good care.

  8. Barbara Krauser says:

    Hi Beth
    This is so sad yet so beautiful because your writing conveys your experiences and emotions each step of the way. Your mom’s reaction to you does seem like that of a 2-3 year old who has been frustrated and disappointed. It must be a hard experience for you to experience. Hope you are doing well. Barbara

    • daughter3 says:

      Thank you, Barbara. It was very hard, but I had another visit that went much better. My mom was very sweet during that visit. It’s all very strange. Good to hear from you. I’m well and hope you are, too.

  9. Susan says:

    Hi Beth,
    I’ve been thinking about you and your mom, I hope you are okay. I’m working through this with both my parents and your writing has been so, so helpful. I’ve gone back to the archives and I can recognize so much…and your newer work helps me prepare for what’s to come. Thank you, Susan.

    • daughter3 says:

      Thank you, Susan. I’m so sorry you’re going through this — and with both parents! It must be so difficult. I’m glad my writing has helped you. My mom is still with us. She’s 94 now, and her ability to communicate is seriously impaired. I can’t understand most of what she says. But she is still sometimes remarkably present. I still visit, and sometimes she seems to know who I am. Our relationship just keeps changing. It hasn’t ended. I hope that things go as easily as possible for you and that you are able to continue to enjoy your parents for as long as possible.

      • Susan says:

        A few years ago I read something that said replace “I have to” with “I get to”. So now I try to remember I get to see my parents every day. I get to make them lunch, I get to clip their toenails (today, blech), I get to hug them and try to make them feel safe. I think I’m in a middle ground where I have them both and they mostly appreciate me. Thank you for sharing your life, you are a wonderful daughter and a wonderful writer.

      • daughter3 says:

        I’m so glad your parents appreciate you, and I’m sure they have every reason to! This isn’t an easy journey, but there are some blessings along the way. Thank you for your kind words.

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