Dame at Sea

November 2, 2015November 2, 2015 / Erica Herd / 18 Comments

(google image)

It’s been a while since I posted, and I’ve missed my wordpress friends.

Last Sunday evening I got a call from Deirdre, a nurse at the Actors Home, letting me know that my mom was being transported to Englewood Hospital. Deirdre said that Mom was unable to raise her left arm, was dragging her left leg alongside the wheelchair and her blood pressure was elevated. All are stroke indicators.

Mom was admitted to Englewood Hospital late Sunday night. My first sight of her was Monday at 8:00 a.m. She was in a private room on the fourth floor in an immaculate hospital. She was hooked up to an IV and on antibiotics. She was sleepy when I first arrived, but within an hour she grew agitated.

“It hurts so,” she said, “it hurts.”

Her face contorted in pain and confusion.

I spoke to her nurse and asked if we could get her some pain medication. She said, “I have to get authorization from the Dr. Y. I’ll page her.”

After repeated pages, no response. The hours passed and Mom was screaming and asking for help.

“What’s going on?” I asked the nurse.

“Dr. Y is not responding to me.”

I asked her for the doctor’s number and told her receptionist / secretary that we urgently needed authorization for pain medication.

A young Indian doctor entered the room.

“Finally,” I said. “Can we get her some pain medication?”

“I’m the neurologist,” she said, “her GP has to authorize that.”

“This is ridiculous,” I said.

The neurologist approached Mom’s bedside. “How are you feeling, Mrs. Herd?”

“Why don’t you do something?” she yelled.

The neurologist looked at me, and I shrugged.

“She has Alzheimer’s,” I said.

“May I ask you some questions about her?”

“Of course.”

A young woman entered the room carrying a clipboard.

“May I take her lunch order?” she said with an overly wide smile.

“Now is not a good time, ” I said.

She left as if scolded.

After the neurologist and the kitchen girl departed, Mom said, “Push it, push it.”

“Push what?” I said.

She motioned to the left bed rail.

I pushed the bed rail.

“Harder,” she said.

“Okay, you’re not going to fall out,” I said.

“Hold me, hold me,” she said, frantically.

“Okay,” I said, hugging her as best I could.

“Push it, push it!”

The day was spent in this fashion: holding her, pushing the side of the bed so she wouldn’t fall out. I pushed a chair against the bed railing and said, “Now you won’t fall, you can’t.”

She gave me a frightened look.

At around 11:45, the nurse said she received authorization to give her pain meds.

“What is that?” I said.

“Delaudid.”

Shortly afterwards, Mom went quiet and stared blankly into the distance. Finally calm.

At 12:20 p.m., the GP arrived, casually strolling in, dressed in couture.

“What seems to be the trouble here?” she said, smiling.

“Well, I’ve been trying to reach you for the past three hours. My mom was in a great deal of pain.”

“I left you a voicemail,” she said. “There was an emergency this morning.”

She approached Mom’s bed. “How are you feeling, Katherine?” she said, holding her left hand.

Mom pulled her left hand away, shooting her a hateful look.

“She doesn’t like that,” said Dr Y.

She turned to me, “With Alzheimer’s, you really don’t know if she’s feeling pain or if she’s simply confused.” She said this with arrogance.

“She was in pain; I can tell. I’ve been caring for her for the past five years.”

I can’t tell you how many times doctors have tried to explain the symptoms of Alzheimer’s to me, as if I have no knowledge of it. I know all the symptoms. I had to contain my anger.

“So what is the diagnosis?”

“We aren’t certain yet: the CAT scan was inconclusive. We haven’t been able to give her an MRI because she won’t stay still for 45 minutes. You don’t want to subject her to that, do you?”

“Of course not,”I said.

“She came in very dehydrated, and I suspect she has a UTI so she’s on fluids and antibiotics,” Dr. Y said.

“So what’s next?”

“We want to observe her for awhile. I’m hoping to release her by Wednesday.”

On Tuesday, my brother Rick took the bus from Elmira to see her. She was very happy to see us together.

Rick got there at 4:30 p.m. and I got there after work, at around 7:45.

“She was saying ‘help me, help me,’ earlier. Does she normally do that?”

“She has since she’s been here,” I said.

I put on Channel 13 for her – the news hour. At around 8:20, Mom said to us, “Okay, it’s time for bed now.”

I said to Rick, “I think that’s our cue to leave.”

On Wednesday night she was more agitated than ever, shrieking that she was in pain and saying, “Help me, help me,” then, “Jesus, please help me.”

She hasn’t mentioned God or Jesus in years.

I told the nurse she needed a sedative or pain killer. She gave Mom a dose of Lorazepam which made her dopey.

I asked how she was during the day. “She was . . . combative. She didn’t want the aide to wash her up.”

Time for another CAT scan. I accompanied her to Radiology, waiting outside during the procedure.

I heard a shriek.

When we returned to her room, the nurse said, “We’re going to change her diaper and give her her night meds. You can wait in the visitors lounge.”

“Okay,” I said.

I followed the sign to the vending machines, craving a dose of caffeine. It was 9:40 p.m. Pouring outside.

I didn’t have the correct change for a soda. Shit!

If only the vending machine dispensed shots of bourbon. I was spent.

In the visitors lounge, the TV was tuned to Fox News; they were blathering on about Trump, Carson & Co. There had been a debate that night or it was in progress. It didn’t really compute.

I kept walking around the corner to see if her door was open.

After what seemed an eternity, it was.

On Thursday morning, Dr. L from the hospital called me.

He said, “The neurologist and I examined your mother’s CAT scan. There is evidence of chronic TIAs (transient ischemic attacks) or mini strokes. I’m prescribing baby aspirin, but there isn’t much more we can do. She’s being released back to the Actors Home this afternoon.”

I went to see her on Saturday. She was changed. A heightened level of anxiety and lessened ability to communicate verbally.

“Mmm hmmm, mmm hmmm, mmm hmm, mmm hmmm,” was her main form of communication.

She was calmest when I cut and filed her nails and removed her old nail polish: the icy hands warmed by the time I was through.

My friend gave me a green scapular and rosary for her. At first she didn’t want them, but later she let me put the scapular around her neck.

“Hold it when you’re scared,” I said.

“Yes, dear.”

“Do you want the rosary?” I said.

“Yes.” She wrapped it around her right wrist like a bracelet.

Lorin and I had a vacation planned starting November 1: a weeklong cruise to Orlando and the Bahamas. I considered canceling the trip, but realized there is not much I could do by staying at home. If I stayed at Mom’s bedside for seven days, could I will her not to have any more strokes (which is unlikely) or improve her condition?

All I can hope for now is a lessening or end to her pain and suffering.

As for me, I’m a dame at sea.

Raymond

June 29, 2015June 29, 2015 / Erica Herd / 5 Comments

photo by Martin Brigden

He walks alongside us up and down the halls. His belt is tightly cinched around his narrow waist, his flannel shirt tucked in.

Raymond says, “Where are we going?”

“This way,” I say, pointing down the corridor in the direction of the sun room.

“I forgot my money,” he says.

“Do you need to buy something?” I say.

“Yes.”

“Maybe it’s in your room,” I say.

“Yes.”

We walk in silence for a bit, then he says, “Christ!” He seems exasperated, but only momentarily.

I wheel Mom to the elevator when it’s time for me to leave.

Dottie, the second shift nurse, and Connie, a CNA, and Raymond are gathered around. Dottie swipes her ID card above the elevator button. This is a “locked” unit.

While we wait for the elevator, Dottie says, “Your mom used to stay up late-till around 10 or so—but now she’s usually in bed between 7:30 and 8. Right, Katherine?” Dottie giggles.

“Yes, I get tired,” Mom says.

“Is she eating well?” I ask.

“Yes, for the most part. Sometimes there are things on her tray that she doesn’t like.”

I stroke the back of Mom’s head. She seems to like that.

The elevator door opens, and I kiss her on the forehead.

“You’re leaving now?” she says.

“Yes, Mom. See you next week.”

Raymond moves toward the open elevator.

“I’ve got to go,” he says.

Dottie holds him by his right arm, and Connie, by his left.

“Not now, Raymond,” Dottie says, giggling. Dottie’s a giggler. I think it’s a nervous thing.

“But I have to go,” he says, lurching forward.

I smile at Mom, Dottie and Connie. I don’t know what to tell Raymond as his eyes search my face through his thick glasses, confused.

*Pseudonyms used for residents and staff members at the Actors Home.

Days We Have to Remember

May 5, 2015May 5, 2015 / Erica Herd / 7 Comments

ER (google images)

“Oh no, not her,” Mom said when Jessie was wheeled to the table for dinner.

“What’s wrong, Mom?”

“I can’t stand her,” she said, twisting her face.

Miss D, who was assisting Jessie with her meal, said, “But she likes you, Kathy.”

Jessie smiled at me, then at Mom. We sat a square 4-person table. Jessie and I sat on opposite sides, and Mom to her left.

Jessie, Mom and Gisele have shared a table since Mom moved into the Actors Home in September, 2014. They always seemed to get along. I haven’t seen Gisele in a while—maybe she was moved to another ward or went to another home. Gisele said Mom was her best friend. Mom fawned over Gisele, frail and gentle, and told her, “You have to eat something,” one time at lunch when she was fussing with her food.

Gisele said to me, “Tell me what to do.”

I helped cut her food and spoon it into her mouth, but she spit it out. She did that with everything on her plate. She only ate the chocolate pudding, juice and milk.

She’d eat a few bites, spit them out, and again say, “Tell me what to do.”

Maybe Mom missed Gisele.

Jessie smiled at Mom.

“Oh, you pest! I hate your simpy smile, you simp,” Mom said.

“Mom, don’t look at her.”

“But she won’t stop looking at me.”

“You don’t have to look at her. Look at the wall, or at me.”

Mom made a face like a little kid at Jessie, still smiling at her.

“Mom, enough.”

“Why did you bring me here?” Mom said.

Miss D frowned.

Mom put down her utensils.

“Have you had enough to eat?”

“Yes, I want to go now.”

“But you didn’t eat your soup or your brownie.”

“I don’t like brownies,” she said.

“But I might want it. We’ll take your coffee too.”

“I want to watch TV in the room,” she said.

“ER?”

“Yes,” and her face instantly brightened.

I had arrived late and it threw off our routine, which included watching an episode or two of ER on DVD. We were on season 2, disk 4.

I turned on the DVD and inserted the disk. She looked calmer already; it seemed to ground her.

“We’re on season 2, disk 4, Mom.”

“Yeah,” she said, smiling.

At the end of the episode, she said, “But what about the credits?”

“They showed the credits at the beginning of the program, Mom.”

“They did?”

Then I brought her the mini spiral notebook she keeps at her bedside table.

I pointed to the names, “MARK GREENE, NOAH WYLE.”

We said them in unison, “MARK GREENE, NOAH WYLE.”

“Noah Wyle plays John Carter,” I said.

“Yes, that’s right. I’m sorry, I’m anxious today. I forgot Rick’s birthday.”

Rick is my brother who lives upstate.

“His birthday is October 9, I always remember it. He’s so upset with me.”

“He’s not upset, Mom. He understands.”

“These are important days, days we have to remember. I always remembered.”

(Mom hasn’t remembered my birthday for the past 4-5 years.)

“I know, Mom, and he’s not mad at you.”

“How do you know?”

“I asked him; he’s fine.” (I never asked him.)

“Are you sure?”

“Yes.”

“Okay.” Her face was still scrunched up with upset.

“We all make mistakes, Mom. It’s okay.”

Pseudonyms used for residents and staff at the Actors Home.

Mean Girl

April 21, 2015April 21, 2015 / Erica Herd / 13 Comments

google images

It felt like high school except this girl isn’t in the A-list clique and no one roots for her bad behavior. Her name is Serena, and she’s a resident at the Actors’ Home in New Jersey. She has a shock of wild frizzy red hair, piercing green eyes and pointy nails.

It was Saturday afternoon, a gorgeous sunny day. Several residents were outside with their aides or family members enjoying the long-awaited sun. Serena stayed indoors.

She held forth, as if she were a fire and brimstone preacher, addressing the group at large or anyone who would listen. Most of the residents were gathered around the nurse’s station in chairs, wheelchairs or standing with walkers.

“You wouldn’t believe it by looking at him, but he came into my room in the middle of the night, stripped, and dumped his dirty diaper on my bed!” she said, pointing to Raymond, who was passing by.

Raymond shook his head and frowned, “No.”

“He looks so innocent, doesn’t he? Well, drop dead!” she said, looking straight at Raymond.

I scanned the other residents’ faces and saw signs of discomfort and alarm.

“She’s mean,” I said to my mom.

“She’s always like this,” she said.

Serena started following Raymond in her wheelchair. “I said, ‘drop dead’! If you died, I’d be celebrating.” She cackled, self-satisfied.

Raymond said, “Don’t say that,” and shuffled away from her, down the hall.

“Hey, nurse,” she said to Rosalinda, “I need someone to change me.”

Rosalinda said, “I’ll call a CNA.”

“But it can’t wait.”

“I’ll tell Ming, she’s with another resident right now,” said Rosalinda.

“Ming’s finished with that resident. I saw her leave the room.”

“She’s still working.”

“What, am I supposed to wait all day? I’m soaking wet!”

“Calm down, Serena.”

“I won’t calm down. I see what’s happening here. She’s trying to avoid me. I don’t miss a trick.”

“Ming will be with you as soon as she can.”

“You wait all day, and no one changes you. I’m lucky if they change me morning and night. It’s appalling.”

The mood around the nurse’s station was growing more agitated—it was palpable. I wished she would shut the hell up. It had been a lovely day up until now.

“Hey, Ming, I need you. You gotta change me now,” Serena said, pointing at her and starting to look pathetic.

Ming came walking out of another resident’s room with a pile of clean disposable diapers.

“Yes, yes, I’m here,” she said with an acid face.

“You’re doing a great job,” I said to her.

“Thank you. She’s always like this. Your mother is good.”

I smiled at her.

“Hurry up, Ming. I can’t wait any longer. I’m soaking wet!”

Maybe there’s some way they can oust this woman. The Alzheimer’s Unit is for the most part peaceful, but this woman is mean. I never saw her in action before, but this was atrocious. It’s got to upset the other residents. I know about negative attention—it’s a game my mom used to play on me all the time before she was diagnosed with Alz. Maybe the only time Serena thinks she gets attention is when she is nasty and raising her voice or misbehaving. I don’t know. But on that beautiful Saturday afternoon, after Mom and I had luxuriated in the garden together under a gentle April sun, I wanted this woman to disappear.

*Pseudonyms are used for all staff and residents.

Medicaid-land

December 27, 2014December 29, 2014 / Erica Herd / 22 Comments

google images

You are traveling through another dimension, a dimension not only of sight and sound, but of mind, a journey into a wondrous land where boundaries are that of imagination. That’s the sign post up ahead. Your next stop—Medicaid-land.

Pseudonyms are used for Medicaid and nursing home personnel.

The day after Christmas. My husband Lorin and I are wrung out from Christmas traveling. Yet we journey to Metropolitan Hospital in New York City, locus of the central Medicaid office, to obtain the essential piece of paper, the paper that would save us all—proof of my mother’s disenrollment from NY Medicaid. We moved her to a nursing home in New Jersey on September 6, the Actors Home, but she will not qualify for NJ Medicaid until this final document is obtained. We shall fight to the death for this document.

We arrive at the office. Lorin speaks to a bespectacled man in white thawb (gown) and kufi, who motions to his right. “She help you,” he mutters, almost unintelligibly.

The woman says, “This is the wrong office. You need to contact the office in Brooklyn that handles nursing home transfers.” She’s a bit gruff at first, but then she warms up, perhaps realizing our plight.

She writes down two phone numbers and an address.

Lorin says, “This is an urgent matter. We need the document in the next two weeks or we’ll have to start the enrollment process all over again.”

She says, “That shouldn’t be a problem.”

We thank her and return to the car.

The numbers have a 929 area code—the area code for another dimension. That’s not the Brooklyn area code, or any cell phone area code that we know of.

We make the calls in the car. I call the first 929 number.

“Hello, my mother was living in a nursing home in New York, and now . . .”

She cuts me off, “You have to call 718-557-1368.”

“But . . .”

Click.

Lorin says, “Call back.”

We put the cell phone on speaker and call the second number. A man answers.

“Hello, my mother-in-law moved from a nursing home in New York to a home in New Jersey and we need confirmation of her disenrollment so she can get New Jersey Medicaid,” Lorin says.

“You have to call this number: 718-557-1368,” the man says.

“Okay, but we need confirmation right away. This is time-sensitive,” Lorin says.

“I understand, but we can’t help you here. You have to call this number. They can give you what you need,” the man says.

“Okay. If we don’t get what we need from them, we may be stopping by your office,” Lorin says.

“We don’t see people here,” he says.

What kind of place is this, Area Code 929?

I call the 718 number, and speak to Miss S.

“What’s your mother’s social security number?” she says.

I give it to her.

“We don’t have a discharge notice for her from the other nursing home,” she says. “You’ll need to contact them to obtain the form.”

“Okay, what form do I need, and where does it go?”

“Tell them you need MAP 259F. They know what it is. They must complete the form, fax it to us, and indicate on the form where the confirmation notice should go, which would be your home address or the nursing home in New Jersey.”

“Okay, but New Jersey Medicaid needs this form in 2 weeks. Do you think that can be done?”

“That shouldn’t be a problem.”

“Thank you for your help. Happy Holidays.”

“Same to you.”

I call Silvia, the social worker at the old nursing home, and get voicemail. Lorin and I decide to go in person to get this taken care of. This form should have been sent right after Mom was discharged—almost 4 months ago. We are seething. I feel nauseous.

Lorin says, “No more Mr. Nice Guy.”

We drive to the nursing home in the Bronx, and wait for Marlene, the administrator, to speak with us.

She appears in the lobby, looking like a beaten dog.

“Hi, Marlene, Happy Holidays,” I say.

“What’s up?” she says, expressionless.

We explain the situation.

“Come into my office,” she says. “Silvia’s not in today, so this will have to get done on Monday.”

“Okay,” I say.

Lorin explains how urgently we need the document. “Why wasn’t the discharge notice sent back in September?” he says.

“I have no idea. Human error, I suppose. Nobody’s perfect,” Marlene says.

It’s hard to get angry at someone who looks like they’re on suicide watch, so we don’t.

“What’s the name of the form you need?”

“MAP 259F,” I say.

She locates it on her computer and prints it out.

“Write Silvia a note saying where you need the confirmation sent, and I’ll put it on her desk with the form.”

She hands me a slip of paper the size of a check, and I run out of space.

“May I have a larger piece of paper?” I ask, and she hands me a ruled notepad.

“May I sit here?” I ask, pointing to a chair piled high with boxes.

“Sure.”

I place the boxes on the floor and start to write a note. I ask Lorin to check the note, and he asks to re-write it: I’ve missed some pertinent facts. Guess I’m overly tired.

We hand the completed note to Marlene.

“Make sure you can read this,” Lorin says. She reads it.

“I’ll make sure Silvia sees this on Monday. Lorna is on vacation for two weeks starting Monday, so Silvia will be on her own which means she has an extra workload. She’ll do her best.”

“Okay, but we need this form as soon as possible,” Lorin says.

“I understand. She’ll fax you and the nursing home a confirmation on Monday after she faxes it to Medicaid. She won’t have to time to send emails to all these people,” she says, with tired disgust.

“That’s okay. We included the emails just in case,” I say. “Thanks for your help, Marlene, and Happy New Year.”

“Okay,” she says, and we exit the premises.

I send an update to the social worker at the Actors Home, letting her know what has transpired.

All we can do now is hope and pray that the MAP 259F will be completed and processed in due time. The Paperwork is all that matters in Medicaid-land.

My Own Grey Gardens

December 22, 2014December 24, 2014 / Erica Herd / 9 Comments

Actors Home party (photo by E. Herd)
Pseudonyms are used for Actors Home staff.

I took last Friday off from work to go to a holiday party at the Actors Home where my mother resides. I had other things to do, like renew my driver’s license, return a pair of slippers at Kohl’s. and pick up a final Christmas gift, but the main reason I took the day off was to go to the party.

My husband Lorin and I arrived a little before 4:00 to escort Mom from her unit to the party on the main floor.

“Mom, there’s a party on the first floor. Wanna go?”

“Not really. I don’t feel so good,” she said.

That should have clued me in, but I was persistent. Let’s be honest, I wanted to go to the party. I was looking forward to a couple glasses of wine, a hot meal and the entertainment. The mood was festive: red and white tablecloths, decorations, a pianist playing Christmas carols. What could go wrong?

When we entered the party room, Mom said, “I’m not dressed for this.”

“Do you want to change upstairs?” I said.

“No.”

The activities coordinator, Mira, said, “I’m dressed casually; I’ve been working all day.”

I said, “I’m casual too, Mom.” I was wearing jeans, and my striped Christmas sweater and black hiking boots.

She said in an acid voice, “Well, you’re always casual. At least you’re comfortable.”

No use arguing with the boss. Guess I’m a bum.

Servers came around with platters of hors d’oeuvres like shrimp and spring rolls.

“Mom, you like shrimp. You want some?”

“No, I’m not hungry.”

“Well, we’ll get you some anyway.”

The server handed her a small plate of shrimp with a spoonful of cocktail sauce and a wedge of lemon.

“Do you want lemon on the shrimp?” I asked.

“No.” I handed her a shrimp dipped in cocktail sauce, and she ate it reluctantly.

Lorin sipped a glass of coke, I had white wine and Mom had a Sprite.

Lorin said, “Mom is in a brown study.”

I had to ask him what that meant.

“Do you want a glass of white wine?” I asked her.

“No, this is fine.”

She used to like Chardonnay.

The pianist continued playing Christmas carols, and I sang along, hoping Mom would pipe in.

“This isn’t Christmas anymore. I miss Rick. There’s no family, not the way it used to be,” she said.

Rick is my brother who lives in upstate New York.

“I know, Mom. Do you want me to call Rick? We can speak to him now.”

“No, that’s okay.”

“These clothes don’t fit. Why don’t you give me clothes that fit?” She tugged at the rolled up sleeves of her pink sweater.

“I didn’t buy you that sweater, Mom. They got it for you at the old place.”

I sang along to “Have Yourself a Merry Little Christmas,” and said, “You always liked this one.”

“Yes.”

“It’s from Easter Parade*,” I said.

“I’m not dressed for a party,” she said, scrunching up her face.

Lorin and I made an executive decision to return her to her room, sensing that her discontent was escalating. When a social worker asked why we were leaving, I said that Mom was “cranky,” and we thought it best to bring her back to her room.

“Come back and enjoy the party,” she said, smiling.

I told Russ, the nurse in her unit, that she wasn’t having a good time and asked if she could have dinner with the group.

“Sure,” he said.

I wheeled her to a table with two other ladies and said, “I’m putting your cookies and soap in your room.”

“Okay, at least that’s something to look forward to,” she said.

Lorin stayed with her while I was out of the room.

When I returned, I said, “Okay, so you’ll eat dinner here.”

“I’m not hungry,” she said, petulantly.

“You need to eat something.”

Her face contorted into a sneer and she said to Lorin, “You shit!”

I exchanged looks with Lorin.

“Okay, Mom, we’re going now,” I said.

“You’re not staying with me for dinner?”

“No.”

Lorin said, “Have a good dinner. Good night, Katherine.”

“Enjoy!” she burst out, almost hissing at him.

One of the ladies at her table looked at Lorin and said, “She’s a liar.”

From the mouths of babes, or old people with Alzheimer’s—kind of the same thing.

Lorin and I returned to the party and enjoyed the buffet dinner and entertainment.

Broadway dancers and singers performed, including Christine Ebersole, who closed with “Have Yourself a Merry Little Christmas.”

I wish Mom could have enjoyed the party with us, but it was not in the stars, I suppose. Somehow it’s easier for me to tolerate her abuse of me—she could be very cutting and hurtful towards me before her Alzheimer’s diagnosis and still is from time to time. What I cannot tolerate, however, is her abuse of Lorin. That is unacceptable.

Perhaps I’ve become inured to her verbal and psychological cruelty, but something snapped on Friday. I felt like Little Edie in Grey Gardens, the ever-present caretaker who spent her life living with and taking care of her mother. No, I don’t live with Mom, but sometimes it feels like she lives inside my head.

I spent Saturday being angry at her for her cruelty, and at myself for spending so many years taking care of her when she has expressed so little love for me. I don’t think she’s ever really loved me. I’m not saying this for sympathy, but because I believe it to be true. There are many wasted years I’ll never get back. Liking myself and loosening her grip on me takes daily work; it may be a life-long effort. I don’t want to live in Grey Gardens.

*The song is actually from Meet Me in St. Louis, not Easter Parade.