December 4, 5, 6, 7, 8.

January 13, 2016

[things start here]

December 4, continued.

We go home and she gets increasingly frustrated and confused. She’s convinced she’s at the rehab place, doesn’t get why I can’t call her favorite physical therapist, Stacy, there to help her, or the social worker who always wore such high heels and was so helpful. I leave at 7 to go to work for a few hours and my brother calls me ten minutes later. I can hear her screaming for me in the background. Kate and I go back. By 9 we can’t think of what to do and she’s so upset that the only thing that will help is Kate wheeling her in circles telling her she’s going to physical therapy with Stacy.

I call 911. The New Paltz Rescue Squad (mostly volunteer!) comes and they’re just these young kids, mostly, but they’re so fucking good and they let me ride in the ambulance with her.

Kate and I are in the ER for six hours. Have I mentioned lately how much I love this woman of mine, this Kate? We eat Frosted Flakes. We see a stupid douche ER doctor I’ve seen and hated twice before. He tries to convince me to take her home because “she’s dying. There’s nothing we can do for her” while watching the TV above my head. He keeps repeating “She’s dying” in bored tones until I think Kate is going to kill him on the spot just to change the conversation. He doesn’t want to admit her, despite her oncologist telling me this morning if it’s not safe for her to stay at home until we get the hospice sorted out she should stay in the hospital. The ER doctor threatens that the stay might not be covered by insurance, since they discharged her the day before and she was “fine.” I tell him she’s not eating, drinking, or walking, that she has delusions and doesn’t know where she is and can’t calm down. What is their definition of “fine”? Kate springs up and firmly takes over and I sit back in my chair, shaking. Finally he agrees to admit her, warning me that the stay might not be covered by insurance. On the ride home Kate and I entertain ourselves describing all the ways we will torture and ruin him.

 

December 5.

A mistake: I should have stayed the night in the hospital.

When I get to the hospital the nurse tells me she was calling me for all night, didn’t believe I went home. When I see her I understand instantly that today will be the same as yesterday. Her face is arranged so differently than that of the mother I know.

I don’t know then that I will never see my mom’s regular mom-face ever again.

She stares at me with watery fuzzy puzzled eyes.

“Who…who are you?”

“Mom! It’s me, Lagusta.”

“No. Not right.”

I spend the next half hour gently trying to convince her and she’s getting more and more agitated, asking why I won’t come, that she’s been trying to call me all night but the phone doesn’t work (it does), that they told her I had gone home which couldn’t be true. At one point in a craven attempt to get some love, I say, “Who do you want to see more than anyone in the world? Who do you love more than anyone?” and she says MY DAUGHTER, which feels good if a little cheaty. Finally she says, “Just tell me who you are. Are you a nurse, or a tech, or what?” I can’t think of what to do. So I give in. I tell her I’m a tech named Sarah, and does she need any coffee or anything? She asks for a coffee “AND LISTEN. With SOYMILK. Because I AM A VEGAN.” And I get her the coffee and she uses her company voice to thank me and tell me how nice I am while giving me side-eye like you’ve never seen. Then she very politely asks Sarah to help her call her daughter, and I do and when my phone rings I go outside and talk to her.

She breaks down and starts telling me they’re tricking her and why won’t I come by. Standing outside her door, I can hear her crying and pleading through both ears. I tell her I’m on my way and I’ll be there in a minute. She tells me Sarah is there and she can’t get her to leave. I burst in singing our old greeting song, “Hello Dolly,” and she looks so skeptical when she sees me. “Well hello, Dolly, you’re looking swell, Dolly, I can tell Dolly…”

I take her hands and she tells me it’s been horrible, they’re trying to trick her with this tech Sarah, and will I go complain to the nurse about her? The nurse is her boss, she’ll have to listen. And if I see Sarah, can I bring in here? She wants to tell her that what she’s doing isn’t right.

When I take her hands I notice that her beautiful graceful nails that I’ve envied my entire life—have watched her shellac with special nail strengthener and file carefully to rounded points and obsess over minute breakages—are half gone. Not only the nail, the entire nail bed. She picks at them until they bleed and the nurses have to put bandages on them.

She asks if I have her New Yorker and I don’t because I didn’t bring it because she can’t read anymore but I give her one of mine and she riffles through it furiously, upside down. “I can’t find this Talk of the Town piece I was reading. They must have redesigned the magazine. How stupid is this!” I take it and point out Talk of the Town and she says, “Oh.”

My brother and I are there (she recognizes him right away) and in time we get her to eat a few bites of an English muffin and she snoozes while I text my friends. Katy studies brain trauma for a living and tells me good ideas about when to push truth on her and when to let it go. Korn and Kara walk me through how to game the hospice situation.

For the next week I attempt to write down everything she says. She is talkative for the next few days, almost manically so. I wish I’d sat at her bedside and recorded every word.

While mostly asleep I hear her say, “Judy? I know you don’t do Facebook that much, but I wanted to tell you I found the most delightful pictures of Jonathan [her beloved former yoga teacher] on Facebook. He was on this beautiful island, at the top of a mountain, and the caption was ‘With my beautiful husband.’ Isn’t that nice? Did you know Denmark is one of the most liberal countries in the world? In terms of family leave and paid vacations and gay marriage and things.”

When Kate get there she says, “Kate, did you hear about what happened this morning? This tech—you know, that’s not a nurse, just a helper—she came in and she said, now I don’t know how she knew Lagusta’s middle name, but she said ‘My name is Lagusta Pauline Yearwood.’ Now I don’t think that was very nice. [She addresses my brother}: Why did you tell me that tech was Lagusta? That wasn’t very nice.”

I tell her we can watch SNL together, and Kate looks up the host: Ryan Gosling. “Oh! That’s nice. He’s People Magazine’s Third Sexiest Person Alive!”

The things that stay.

The things that go.

The nurse comes in and she charms her like wild. “Now what did you say your name was? Rose? Oh Rose, you are wonderful. Thank you so much, Rose. I had an aunt Rose. She was so grumpy! And so cheap.”

“You know what I really want to see? Madison on Broadway. That looks great. Did you see the profile of the creator in The New Yorker? Interesting. And Fun Home! Do you remember when I worked at Phoenix New Times? They had that strip, Dykes You Should Know. [Kate: “Dykes to Watch Out For, that was a good strip, Pauline!”]. And Zippy the Pinhead. And Ernie Pook’s Comeek. And what was that one with Marlys? And Life in Hell, before the Simpsons. They had what was then called ‘underground comics.’”

And she tells Kate a lot about Lynda Barry that she didn’t know, which is amazing, because Kate is a Lynda Barry expert. Then Harriet calls and I tell her what we’re talking about, and she says, in the same tone of voice she uses to talk about cancer or money, “Gus, she loves Lynda Barry. And I do too.”

I tell my mom she’s being charming, and she starts singing “I Feel Pretty.”

“I feel charming / it’s alarming / how charming / I feel…”

“Is that from My Fair Lady? I can’t remember.”

“What? My Fair Lady? West Side Story!” And she gives me a look and Kate and I can’t stop giggling because my dying mother who doesn’t quite know where she is schooled me on musicals so easily.

Her little squeals when something interests or amazes her, her passions and deep knowledge.

It’s a nice night because she’s being so adorable, but you can’t think too hard about it. Her being so much like her means it’ll be so much harder later. When she’s not. And it is.

She is saucy until the end. I give her a doughnut Alexandra brought for her (from a mail-order Vegan Doughnut Of The Month Club she’s in[!]) and she dips it into the little cup of pho broth she’s having for dinner. “Doughnut sauce!” I laugh and she says, “Why not? I think it’s the new trend.”

She asks if tomorrow we can have a chip and dip party. She describes all the dips she’s going to make. “I have some great recipes saved for dips. Your brother makes a great dip: Tofutti cream cheese and Pace salsa. Just great.” My brother has never made a dip in his life.

“Kate! Did you know that tomorrow we’re having a chip and dip party?”

 

December 6.

Sleeping in a hospital is about as fun as you’d think sleeping in a hospital would be.

She talks about food incessantly. She hasn’t eaten a real meal since Thanksgiving, just a bite here and there. Her body is shutting down, but her mind refuses to slow down.

“I want some of that pulled pork dish.”

“What?”

“Those jackfruit tacos. Has anyone had them? It’s all the Chicago Vegans Facebook group talks about! Rose? Maybe we can go out to breakfast tomorrow.” Every time the night nurse comes in she invites her out to breakfast. “Rose, you can get pancakes.”

“Lagusta, do you know it’s very trendy now to write a memoir with recipes? You should do it. What recipes from your childhood would you include?”

Something she never would have asked me before. I tell her I literally don’t remember eating anything except hot dogs, brown sugar and margarine sandwiches, and “grazing” dinners consisting of raw bell peppers and carrots she cut up for us. She’s asleep and if I ate anything else as a kid she’ll never be there to tell me about it. I’ll never know why she was so into “grazing.”

In the morning the rabbi comes. A nurse asked her about having one come and she woozily said OK and she does. She tries to get her talk about Big Things but then she starts eating a napkin thinking it’s food and I pull it away and say “Mom, why are you eating a napkin?” And when the rabbi asks if she has any questions she says, “Yes, why am I eating a napkin?” But then the rabbi offers her a prayer for healing, and it brings Kate and I to tears.

Hearing Hebrew my mother perks up her ears and cocks her head like a puppy, then stares at the rabbi lucidly for the first time in days and days, and when the rabbi asks afterward if she would like to talk about what she’s grateful for, she breaks down and says, “My children. My wonderful children. Because if it weren’t for them I wouldn’t have made it this far. At night if you’re anxious or upset, you just have you and your children. And that’s something.” The rabbi and Kate and I are quietly sobbing and the rabbi gives me a hug and it’s the only contact I’ve had with a rabbi in 20 years and I hug her so hard and sob and she tells me I’m a good daughter, and it feels so good.

Later, in the middle of the night:

What do you do when your mom has been vegan for over 20 years and she’s screaming that she wants a cheddar cheese quesadilla because she no longer knows what vegan means? I mean, it’s not even a question. You order her the quesadilla. She’s asleep before it comes, and even if she hadn’t been, would she have eaten it? No. The aide takes it away, untouched, in the morning. If she’d had eaten it, would you have tried to stop her? Of course not.

Kate and I plan a chip and dip party for the first night of Hanukkah. Shana and Lucy bring chips and dips and Kate makes a million things and there’s wine and pretzels with Funfetti frosting, my secret weakness and emergency stress snack.

She was animated all day, but fell asleep just before everyone arrived and missed the entire party. I couldn’t get her to wake up. The next day she will be confused about this, why we had the party without her, but Kate and Lucy and Shana and my brother and I have snacks and light candles and eat chocolate and it’s nice, and she’s there with us, a bit.

This is how the next two weeks go: it’s nice because she’s there with us. A bit. Which is a galaxy away from not being there at all. I don’t realize this until later.

December 7.

Middle of the night, dark, while moving her bed up and down then up and down, every quarter hour for seven hours (“Lagusta! Can you move my bed up a little?”) until she sleeps a little at dawn:

“You deserve a better mother. {mumble mumble}”

“How so?”

“A mother who bakes cookies!”

“I’d rather have a mom who writes plays. And plus, I bake the cookies in this family.”

“Well……[15 minute pause] that’s a good point. I write the plays!”

 

Later:

The doctor comes in to go over more paperwork I have to sign saying I will let her die in five hundred thousand different ways. She is a little bit able to answer the questions when he asks, then she tells him that I know everything, “let my daughter answer these.” I have an email from ten years ago where she told me she wants no lifesaving measures, and we talked about it weeks ago too. I know I’m doing what she wants when I check off no feeding tubes no antibiotics even, no this no that. Nothing. If she is able to communicate she can change her wishes at the time. Until then I am a cruel and merciless god. I don’t go to the bathroom to cry. I don’t fall apart. I sign the papers then a manager has to verify that I signed them, and then I go back to trying to get her to eat a cookie.

She obsesses about food constantly. She eats nothing.

She begins a phase where if I leave her for five minutes she screams until I come back.

It’s…endearing? Frightening, that too.

She hears me telling Judy on the phone that every time I leave the room she yells for me. She yells at me.

“Lagusta, this is a sentence I never want to hear coming from your mouth ever again. ‘Every time you leave the room I yell for you.’ I never want to hear that ever again. [yelling] I AM NOT A PERSON WHO YELLS. I’M NOT. I’M JUST NOT. Every time you say that, it hurts my feelings, and you of all people shouldn’t be hurting my feelings.”

When I leave for ten minutes to go talk to the hospice person she screams, knocks over her coffee, yells, until the nurse comes. Twice. Later the nurse tells me what happened. When I get back she demands her coffee so I go get her another one. When the nurse says she was yelling she gets angry.

I went to talk to the hospice person knowing she would start yelling.

She’s angry we had the chip and dip party without her. She tells me the whole reason she wanted to have it was to make the dip, to show that she could make dip. We were supposed to wait until she got home. We wasted it.

Things are dawning on her.

It’s as bad as you’d think it would be.

It is the end of the world.

Kate comes just when I’m about to slide away from myself. I have to make calls to set up the hospice care. Learning curves and I have about an hour to learn. So many phone calls. She starts screaming when she hears the word “hospice.” She’s not having it. So I have to step outside every time I have to say it. I wonder how long I can let her pretend.

She is ruminating constantly, raving then raging then falling asleep for a bit and waking up by screaming my name.

At one point she’s lecturing me on how I should be simultaneously rubbing her feet and giving her a back massage and showing her why she can’t find her emails on her phone (she can no longer see very much, we’re realizing. Or understand her phone. Or a combination.), why her TV is broken, etc etc, and she says “I’m very disappointed in you, Lagusta. This isn’t like you, to neglect me like this.” I’m rubbing her feet while on hold with hospice. She keeps telling me she has to call her office. Has to talk to her boss. Has to get her assignments for the week.

Her back hurts. They keep upping the pain meds. I ask the doctor why and he simply says, “The tumor presses on the spine. It will continue intensifying and she will need to take more pain medicine for it.” Her skin is starting to itch painfully. It’s a PanCan thing. I scratch her back, being careful not to break the skin. She gets angry if I don’t scratch it hard enough. “Is that SO MUCH TO ASK, Lagusta? A little back massage?”

You’d be angry too you’d be raging too

repeat repeat repeat.

The hospice Medicare pays for covers almost nothing. Of course. She has long term care insurance (get some, friends) that pays for a bit more care. Other than that we’re on our own. She can’t get out of bed at this point. She is never not delusional.

I don’t have to wonder much longer when she’ll have to make her peace with the H word: when I finally figure out the hospice situation the social worker needs her permission to begin the home-care plan I’ve worked out. I talk with her about handling it sensitively and she is so, so, so good, but my mom begins to melt down anyway and

And never really recovers.

Her rage intensifies.

It takes two social workers an hour to get her to agree to hospice. She keeps telling them she is A JOURNALIST and SHE KNOWS ALL ABOUT HOSPICE. She’s done stories about hospice.

Then she decides she hates the social worker because she used the phrase “loved ones.” “Such a trite phrase. I just WILL NOT TALK to someone who uses such a stupid phrase.” The social worker gently corrects her that she actually just said the hospice would make things easier on “her children,” but my mother is convinced she used the phrase “loved ones,” which she considers so banal that it renders the whole conversation beneath her dignity to continue. If I wasn’t crying in the corner with Kate rubbing my back I would have found it funny. She will not throw in the towel, and I love her for this. And also: in the end I am the one who will convince her to throw in the towel. Gently I wheedle her until she gives consent.

I convince my mother to admit she is dying. To give her consent to dying.

I don’t want her to die in the hospital. And these last few days in the hospital most likely won’t be covered by her insurance, since there is no exact reason for her to be there and nothing to be done.

At this point it’s 4:30 PM and I’ve gotten zero hours of uninterrupted sleep in three days. Suddenly I have to get out of that room. I make a sign for the nurses to read to my mom when she gets nuts:

HELLO NURSES AND AIDES! IF MY MOM STARTS FREAKING OUT PLEASE TELL HER I WILL BE BACK IN THE MORNING AND I LOVE HER.

I say goodnight to her and give her a kiss but she is busy answering the questions her roommate is being asked (“What? MY SHOULDER IS FINE, WHAT’S WRONG WITH YOU? NO! NO I DO NOT WANT A CHICKEN SALAD FOR LUNCH!”) and she barely says goodbye.

Kate and I get dumplings and try not to talk about anything. I drive home and the road is blurry with tears and tiredness.

For some reason I call my mom when I get home. She picks up. Earlier in the day I’d tried to answer her phone for her and she shot me ice and said “I still know how to do some things, Lagusta. I’m not stupid.” And this is what I’m thinking about when I call her, and wonder if she really still can pick up.

She starts screaming immediately. My brother left. He was supposed to stay the night. She knows he is standing in the corner, but he won’t come over to her, no matter how much she calls his name. What kind of a son is that? (This has been a common refrain all day, with whatever child was not there at the moment: He’s sitting right there in the corner! He just refuses to say anything.) She had to scream to get some iced tea, then no one even took off the top for her and what kind of children are we?

It goes on for fifteen minutes. It’s the last phone conversation I’ll have with my mother. I think about this as I listen. Before she moved we’d talk twice a week. The way she used to answer the phone is in my muscle memory. “Oh! Hiiiiii Gus! How are you?”

She ironically repeats everything she said yesterday to the rabbi. “Oh I just appreciate you so much, Lagusta. I really really do. You don’t appreciate me but I appreciate you. You tell me you love me so much. What does love matter IF YOU WON’T EVEN BRING ME MUSTARD FOR MY HUMMUS? Never mind. Never mind. I have an idea. I’m going to call the editor of the daily newspaper here and tell him that my children dumped me at the hospital and I need things, I desperately need things, like mustard for my hummus, and no one will help me, because my children have abandoned me. And won’t that make a good story, good PR for the hospital.”

I call my brother and ask why he didn’t stay and he says he’ll go back, but he doesn’t have money for the bridge to get back over the Hudson. I’ve given him $200 in the past week. Where does it go? He was supposed to start a new mechanic’s job today, but when he went in, with his tools in the car ready to unload to ask where he should park, they gave him an interview he wasn’t prepared for (because he thought the fact they called him and asked him to come in meant he had the job) and he admitted he’s not so fast at some tasks (because he doesn’t know everyone lies in job interviews) and they told him sorry, can’t do it. Unwilling to train.

I tell Kate this and she starts crying. The pathos of this family this week.

I give him $100 and it takes $1 to get over the bridge and he thanks me and he is humiliated and I am drowning in survivor’s guilt and he goes back and he says she was screaming when he walked in and he stays all night and I come back in the early morning and I never leave her again.

December 8.

Jacob is home. One more ally. His sweet helpful face, my sweet man. I warn him about how much she’s changed in the week he’s been away, but when he sees her I can see on his face how different she is and how no amount of warning would have been enough. Later I hug him and ask if he can believe this is happening and he breaks down and says through tears that he really can’t. “It’s unbelievable. It really is.”

It takes over an hour to convince her to leave the hospital. She’s scared to move, and covers it up with rage. She wants to see the manager, to make a formal complaint. She wants five more minutes, and will writhe and scream if touched. She won’t let me get her dressed. A stretcher is coming to take her to an ambulance to take her home, but she won’t even allow herself to be moved by the transport people without major wheedling.

But eventually she’s home.

One Response to “December 4, 5, 6, 7, 8.”

1. Lacey January 13, 2016

   This is so beautiful and painful. Too familiar to how I can imagine my mother and I. You are incredible.

   Reply