Sundowning

Mom at party(Mom in her green polka dot dress)

“Who did your hair?” she said.

“My hair stylist,” I said.

“I don’t like it. The girls are wearing it long these days.”

I removed my headband, as if that would make a difference.

“You’ve gained so much weight,” she said, scrunching up her face.

“I’m sorry my appearance offends you,” I said.

“Oh, everything’s all wrong. Where are my clothes? The clothes in the closet don’t belong to me!” she said, hyperventilating. “What happened to Grandpa’s house?”

“What do you mean? Grandpa in Wisconsin?”

“No, when he lived with Rony.”

“Mom, Grandpa’s been dead for years,” I said.

“But what about my sister? Can’t I go there?”

“Mom, Rony is dead.”

“What?” she said, her face terrified in disbelief.

“She died several years ago. She had a heart condition.”

“I know she had a heart condition, but I didn’t know she died,” she said.

“Yes, she died.”

“Where have you been? You’ve been gone for so long!”

“Mom, I was here two weeks ago.”

“No, you weren’t!”

“Yes, I was. I brought you the bras you asked for.” I pulled them out of a tote bag.

“No, these are all wrong—they’re too big.”

“I got them too big because you said the other ones shrunk in the wash.”

“Oh, they’re all wrong.”

“Okay, Mom, I think I’ll go now. I don’t need this.”

“I’m sorry. I’ll try to be quiet,” she said.

“You don’t have to be quiet. Just don’t yell at me.”

“But why were you gone so long?”

“I was here two weeks ago. My office moved—I get home at 7:30 at night. I can only see you on weekends.”

She made a face.

“Where have you been? I’m being poisoned here. The air, the fumes,” she said.

“Is it hot in here?” I said.

“Yes, I think so.”

I asked James the nurse if he could turn on the air conditioning in her room.

“I’m so confused. I didn’t think I’d be here forever. Where did I used to live? They’re killing me here.”

“At Schuyler House, in the Bronx.”

“Schuyler House?”

“Yes.”

“I don’t remember that place. I didn’t think I’d be here forever.”

“I’m sorry,” I said.

“What will become of me? Where will I go?”

“I don’t know, Mom. Rick has the house in Elmira. You’ve seen it.”

“I know that. Stop humoring me,” she said, ramming her wheelchair into the side of her bed frame.

“Dan still lives in the house, and he lives near Greg.”

Dan is my Aunt Rony’s husband; Greg is my cousin.

“Oh, that’s good. He always took care of himself,” Mom said.

“He just turned 90, I think. He goes swimming at the YMCA every day.”

“Yes, he always took care of himself. I’m happy to hear this.”

“Make sure you tell him about my performances at the Actors Home. I want them to know where I am.”

“Which performances?”

“I’m doing Anastasia,” she said.

“Okay, I’ll tell him.”

“Do you want to go for a spin?” I said.

“Yes,” she said, hyperventilating.

“Do you want something to calm you down?”

“Yes, I have some valium somewhere.”

“In the medicine cabinet?” I said.

“Yes, I think so.”

“You can take some after dinner,” I said.

“Okay.”

I told the nurse James* that Mom was having a hard time.

“Can Mom get a sedative?” I asked.

“It’s sundowning,” James said. “It happens around this time.”

It was about 4:30 p.m.

“Let’s go into the garden,” James said. “Come on, Katherine.”

Mom laughed.

I wheeled her out into the garden, James opening the door to the outside world.

“Mom, do you want your coffee?” I said.

“Yes, please.”

“I’ll bring it,” James said.

“And can you bring me a glass of water?” I said.

“Sure,” he said.

“It was about time I had a nervous breakdown,” Mom said, laughing. “Why don’t they show Lust for Life? They keep having it up on the bill.”

“I don’t know, Mom.”

“Would you lay out some clothes for me for tomorrow? I can’t find the polka dot dress I love so much.”

“What color was it?” I said.

“Green polka dots and white background.”

“I’ll try to find it or I’ll get you another,” I said.

I’m watching Terms of Endearment. I never liked it when I was younger, but I do now. I never appreciated the relationship between the mother (Shirley MacLaine) and daughter (Debra Winger), the closeness between them.

I guess I didn’t have that type of relationship with my mom, but it was still a relationship. So much of the time I felt like I was her mother, her nurse, her therapist. Sometimes I think she resented me for it. But it’s who I was schooled to be—the caretaker.

I know I can’t fix Mom. I can’t make her not have Alzheimer’s. I can’t make her remember her sister died or she no longer has a house to live in. I do what I can.

*Note: pseudonym used.

What’s Oncology?

This is a guest post by Sherry (she wishes to use only her first name).

Sherry and her mom

Sherry and her mom Bertie looking at a photo of Bertie and her grandparents when she was 8 years old. Photo taken by Sherry’s brother Rick.

Since January, I’ve been in Austin, taking care of my mom, more than I’ve been home in New York.

It turns out my mother has colon cancer. The good news is, the lesion is slow growing, not causing her pain at present, and not obstructing her bowel. However, it is causing anemia, and this symptom will be the direct cause of her death, probably sometime this spring. We tried the least invasive treatment possible, intravenous iron infusions, to no great effect. She’s 92 and frail, so there is nothing else that could help without triggering a slew of side effects that would cause greater harm, quite possibly far greater harm. 

Therefore the plan is to keep her comfortable. I have engaged hospice services; a team actually comes to her assisted living facility, which means she does not have to leave her home, thank goodness. She is fairly stable for now.

Paradoxically, the Alzheimer’s that has been apparent for about ten years has one silver lining, if you want to call it that: it spares her from concern over her other medical issues. We had a rather amazing series of exchanges in a clinic waiting room during the week of January 19.

Monday
My mom Bertie, my brother Rick and I all troop in and sit down. Rick and I had agreed beforehand to shield her from unnecessary worry. We intended to avoid mentioning cancer unless and until we had a definitive diagnosis. So Rick and I are all, “Well, the three of us just happen to be sitting here in this office.”  Then Mother looks up. There, on the opposite wall, emblazoned in metallic letters at least a foot high (this is Texas; everything is way oversized) are the words “TEXAS ONCOLOGY.” With a star. A lone star. Did I mention we are in Texas?

My mom goes, “What’s oncology?” Both her parents, her husband, and her first child were killed by cancer. She knows what oncology is. Furthermore, she was the first of her family to go to college, and graduated with a 4-year degree. In the depths of the Great Depression, I might add. She is one smart, capable lady.

Anyway, my poor brother, taken totally off guard, answers with a verbal smoke screen. In order to spare his dignity, it won’t be repeated here. He follows it up with, “Hey, let’s look at this cool magazine.” Bertie is satisfied for the moment. With the Alzheimer’s, moments are all she has. 

We wait. We meet the oncologist. Tests and treatments are scheduled.

Rick returns to his home and work in Arkansas.

Tuesday
Bertie and I are back in the office. Rather distracted, I sit us down in the same spot. We look up. Oops.

Wall: TEXAS ONCOLOGY (star).

Bertie: What’s oncology?

Sherry: It is the study of cancer in the body.

Bertie: Do I have cancer?

Sherry: I do not know

This was true at that particular point in time; we were waiting for the test; I am not about to start lying to my mother now. Help! what on earth do I say here?!?

Sherry: Would you want to know if you did?

Bertie: (considers for a moment) I don’t believe I would.

Sherry: OK.

More waiting. Tests and treatment follow.

Thursday
The diagnosis is communicated to me over the phone. I speak with Rick. 

Friday
Bertie and I are back for treatment #2. Somewhat more alert, and mindful of my mother’s Tuesday guidelines, I park us facing away from the offending wall. I congratulate myself. 

We wait.

After a few minutes, in walks another patient or family member/caregiver, a long TALL Texan, with a great big chest that would do a linebacker proud. There is a sweatshirt covering that enormous chest, emblazoned with, yes, TEXAS ONCOLOGY.

Bertie: What’s oncology?

Sherry: Hey, let’s look at this cool magazine.

And I’ve been steering the conversation ever since. Actually, she hasn’t even come close to asking about oncology since that day, even when we had to pass that noisy wall three more times during subsequent treatments.

Anyway, she still knows me, and really enjoys my company. We made a scrapbook, look at old family pictures, cackle over cute animal youtube videos on my teensy iPad mini, and sing old songs together COMPLETELY off key. Neither one of us can carry a tune, and neither one of us cares! What a pair.

Meanwhile, I wrangle assisted living services, hospice services, insurance, and forms requesting leave from my job. I wait for the oncologist, the gerontologist, and all and sundry. I watch Bertie like a hawk, and inspect the various caregivers. No one gets near her without my approval. Caregivers clean my mom, her clothes, and her place, and then I clean again. Is this what it’s like to have a child?

I shuttle back and forth between New York and Texas. My heart wants to be here with Bertie and I would just stay, but my sick days are gone and my vacay is almost used up. The leave should start soon, but I worry it won’t be long enough to take care of her the way I want to. 

Each day I try to find the right balance. When I go home to New York, I hire extra caregivers, which works pretty well as Bertie’s dementia has brought her to a place where she likes everything and everybody. I’ve never seen anything like it; but her current state of mind actually seems to be working for her. I fly back to New York this Friday, and experiment with a schedule of working for 4 days, with 3-day weekends in Austin. My heart wants to be here, but my mom would want me to be practical.

It is a bit lonesome down here. My social life is limited to the completely charming young bartenders in my hotel. NOT that I am drinking a heck of a lot, mind you … they know my story and don’t push. Hanging out in the hotel bar is pretty funny for someone who has darkened the doorways of 5? maybe 10? bars in her entire life. Sometimes I speak with random hotel guests. One evening I left my New Yorker wariness up in the room (Texans are friendly; it certainly can be disarming), went down to the bar, ensconced myself in my usual spot (I have a SPOT!!!) and got smooched by a random hotel guest. “Blech,” as Lucy says in Peanuts cartoons.

It is a gift and a privilege to care for my mother at the end of her life. I have no idea what I’m doing or how I am finding the strength. I am making it up as I go along. I am making mistakes. Lots. Making these decisions may be the hardest thing I have ever done. 

Sherry, Rick and mom

Rick, Bertie and Sherry in the garden (photo by Rick)

* * * * *

It may be fairly obvious, but nevertheless, Sherry would like to emphasize that she is not laughing at her mother.  Rather, she is making fun of her own discomfiture and that of her brother. And TEXAS. Definitely lampooning Texas. As a former Texan herself, now transplanted to New York, she is eminently entitled to satirize.  

When she is not commuting to Austin, Sherry works around the corner from Erica, making the world safe for Corporate America.

Death Is Not Sexy

The Super Bowl is sexy. Well, at least the Victoria’s Secret commercials and some of the halftime entertainment are, from what I’ve heard. I don’t watch it (sorry), so I don’t know. Death is not sexy.

I haven’t seen my mom in a couple weeks due to the death of my father-in-law and being sick myself, but I spoke to her last night at around 8 p.m. She was in a state.

I don’t like it when she’s in “a state.” Most of the time she seems fairly serene, even content and happy. On other occasions, she is lucid and questions her life and how she’s living.

“How are you?” I asked.

“Not well,” she said, a faint moan in her voice.

“What’s wrong?”

“Everything. I can’t get anything done. What will become of me?”

“What happened, Mom?”

“I can’t get ready for bed. What kind of life is this? I’d rather be dead.”

“I’m sorry you’re upset, Mom.”

“What’s going to happen to me? I can’t do anything, can’t go anywhere.”

“I know, I’m sorry.”

I had no words of wisdom to impart. I agreed with everything she said. What kind of life was this?

“What about the grahams?” she said.

“I’m bringing you the cookies this weekend.”

“Are you sure? Are you really coming?”

“Yes, I’ll be there.”

“It’s been such a long time.”

“Lorin’s father died, then I was very sick last weekend. I didn’t want to get you sick.”

“Oh, right. But you will come this weekend?” Pain in her voice.

“Yes, I promise. I’m sorry you feel so bad. Is there anything good on 13?”

“No, nothing but junk—ads.”

“Oh. There’s still snow on the ground. Isn’t it pretty?”

“Yes, I always like that.”

“It’s going to snow tonight into tomorrow morning, they said.”

“Oh, that’ll be good.”

She loved shoveling snow when we lived in Jackson Heights. I have a photo of her shoveling on the stoop, cheeks flushed and smiling.

“Okay, Mom. Try to get some sleep. I’ll see you in a couple days.”

“Okay, good night, dear.”

She still sounded awful. I didn’t provide any comfort and felt utterly helpless and sad.

She lives at The Actors Home in the Enhanced (Alzheimer’s) Unit, with fellow performing artists. It’s the best place she could possibly be. But I don’t like bearing witness to her pain and suffering.

Jeffory Morshead wrote a bestselling book called Alzheimer’s: The Long Goodbye (The Emotional Aspects of Caregiving). That is what it is: a long death, not a speedy, graceful one. There are different qualities of “good nights” and goodbyes. Last night was not a good one.

Momma glamour shot
Mom as a young actress (photo by Joe Ratke)

My Own Grey Gardens

AC party

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.