I came across this post today from Tyson 72. Being a recent widow myself, I have not come across many (or any) blogs written by widowers. His story is painful, heartfelt and beautifully written. Please comment at his site, not mine.
Thank you.
family
Truth or Dare
I haven’t spoken to Mom since Christmas — bad daughter. Yes, I am. I haven’t had the energy or the desire, I suppose, and I haven’t wanted to hear her rebukes, such as, “You haven’t come to see me in so long!”
When Lorin and I lived in New Jersey, I saw her once or week or at least biweekly. Now it’s once a month. I haven’t got time for more pain, and I’m living far away.
A nurse called me from the Actors Home and asked if I could calm her down since she was ranting about being poisoned, again.
This is nothing new.
She shrieked into the phone, “”When are you going to get me out of here? I’m being poisoned.” Then, “Where have you been?” and “You only think about yourself, or dear ole Daddio.”
That pulled the trigger.
“Mom, I have to tell you something.”
“What?”
“Lorin was killed in a car accident. That’s why I haven’t been calling or coming around.”
“Oh no! Why didn’t you tell me?”
“Because I didn’t want to upset you, but it’s time that you know.”
She started to cry or it sounded like crying. “I’m so sorry.”
It felt good to tell her the truth. I have spared her so many truths, but I am tired of lying to her, even if she has Alzheimer’s. I have no more time for lies and obfuscations.
“And I’ve moved out of state,” I said.
“What? Why?”
“Because I can’t bear to be in New York since Lorin died.”
“But you dumped me here and now I’m alone in this God-forsaken place! Where are you?”
“I’m living in Savannah, Georgia.”
That didn’t seem to register. Her brain must now have been on overload or “tilt.”
“You have to get me out of here. Take me to Grandpa’s house . . . anywhere.”
“Mom, Grandpa is dead. You can’t go there.”
“There’s a room for me there.”
“I don’t think so, Mom.”
More crying.
“I’m coming to see you on Saturday,” I said.
“But that’s not soon enough. You have to get me out now.”
“It’s in three days. Can I bring you anything – soap?”
“Yes, please bring me the lavendar soap. They took that away from me. And someone scribbled all over my Wuthering Heights. It must have been Lorin.”
“Lorin wouldn’t scribble in your books.”
“Did you bury him?”
“He was cremated.”
“Oh. I’m so so sorry. I’ll pray for you.”
“Thank you. Try to relax. I’ll be there soon.”
“Okay. Jack took me to confession.”
“Oh, good.”
“He prayed with me.”
“I’m glad.”
“I have so many sins. How will I ever be forgiven?”
“It’s okay, Mom.”
More crying. The phone and she sounded far away. I waited for a while, then hung up.
No more lies.
Yardley English Lavender
(google)
A bar of soap isn’t just a bar of soap.
For example, there’s Yardley English Lavender–Mom’s favorite.
Last week she said, “I meant to tell you to get me more soap.”
I went into her bathroom and saw three bars of soap–not whole, maybe two-thirds used–but nevertheless, Yardley English Lavender.
“Mom, you have soap,” I said from the bathroom.
“Really?”
“Yes, want to see?” I said.
“Okay,” she said, wheeling into the bathroom. She turned on the faucet and started to wash her face and hands.
“Smell it,” I said, handing her the bar. She sniffed it.
“Okay, thank goodness. Yes, that’s it.”
Her aide Christina* came in the room later and said, “I wanted to ask you to bring your mom more soap.”
“But she has three bars in the bathroom,” I said.
“Yes, but she tells me, ‘That’s not soap.’ She likes the big bars,” she said.
“Okay, I’ll bring some next time.”
Christina nodded and smiled.
Before I left, I said to Mom, “Remember, you have soap. There are three bars in the bathroom.”
“Okay,” she said.
I had a feeling this was not the end of the Soap Saga, so I went to CVS and bought three “real” bars of Yardley English Lavender.
Last night after work I stopped by to visit Mom.
I saw the night nurse Jared* on my way to her room and said, “I’m bringing her some soap.”
“Ah, the English soap,” he said, smiling.
“Yes, she loves it.”
It was 7:30, and Mom was already in bed.
“Do you want to watch some TV?” I asked.
“No, I’m sleepy,” she said.
“I’ll put your soap right her next to you, okay?” I placed the bars of soap on the rolling table next to her bed.
“Yes, that’ll be fine. You didn’t have to come today to bring it.”
“No, I wanted to. I didn’t want you to have to wait.”
“Thank you, dear.”
I kissed her on the forehead and said, “good night.”
“Good night, dear.”
I told Jared, “She was very sleepy, so I put the soap by her bed.”
He said, “You didn’t have to come all this way to just to bring her soap. I could have picked some up at Walgreens.”
“It’s okay,” I said.
Sometimes soap isn’t just soap.
(google)
*Pseudonyms used for staff members at Actor’s Home.
Children Under the Stairs
(photo: Ren Rebadomia)
seen, but not heard
born unwanted
children under the stairs
crust of bread
if you are good
but only
if you are good
spiders and shadows
are your friends
dust engravings
make art
cracks of light
on lucky days
imagination
keeps you whole
stay strong,
darling ones
someone will rescue you
I hope
you will no longer be
children under the stairs
Sundowning
(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.
Bernie the Shoe
Sneakers, flip flops, harness boots
shiny or dull, worn or new
he lies across them
his chin on the boot
all is well
with Bernie the Shoe
Tote bags, purses
valises, knapsacks
All fabrics are equal
for Bernie the Bag
Bernie the Frog
stretches at will
he doesn’t care how he looks
you can’t spoil his chill
Bernie the Red has a heart
that’s as big as his tum
he brings peace to the family
kindness and fun
(photos by L.E. Swenson & E. Herd)
Are You in the House?
(Mom and me on East 27th Street, New York City)
Are you in the house?
That’s what Mom asked me yesterday when we spoke on the phone. I haven’t seen her since Easter Saturday, and was calling to let her know I wouldn’t be visiting this weekend. I’m feeling under the weather.
“Are you in the house?” she asked.
“Yes, I’m in the house,” I said.
“How are you feeling, Mom?”
“I’m alright.”
“What are you doing?”
“I’m taking care of things in the house,” she said.
I was wondering which house she meant. Did she think we were living in the same house now? Was it the house where she grew up in Milwaukee, Wisconsin? Was it the fifth floor walkup apartment in New York City where I was born, or the apartment building on Junction Boulevard that was converted into a Jack in the Box and made the Lunney family, with their 10 kids, homeless? Was it the house we rented in Jackson Heights–the last house we lived together as a family? Was it the apartment she lived in in the Bronx before Lorin and I packed up her things and moved her into the nursing home?
What is a house, after all, but a place to lay one’s head. Or was it home Mom was speaking of? A place where family gathers, and hopefully, love makes its presence known.
It’s often hard to know what she means. That’s part of the Alzheimer’s. I interpret what she’s saying much of the time or try not to question at all, to let it be.
“How are the tulips?” I asked.
“They died, dear,” she said.
Why did I even ask? Of course they were dead after two weeks.
“What about the lilacs?” she said.
“They’re not out yet. They come out in May. I’ll bring you some then.”
“Okay. (pause) Where are you? Why aren’t you here?” she said.
“I’m at home. I’m not feeling well and didn’t want to get you sick,” I said.
“Oh.”
“I’ll see you next week, Mom.”
“Oh, okay.”
She sounded deflated. I felt I had let her down. But I can’t be there all the time.
“I’ll see you soon,” I said.
“Okay. See you soon.”
What does house / home mean to you?
Easter Baskets
The ritual of it
Stations of the Cross
at Blessed Sacrament Church,
watching King of Kings
and The Robe,
shopping at Macy’s or Alexander’s
for Easter outfits
Mom’s Easter baskets
ribbons on the handles
curled with scissors
she learned to do it as a
gift wrapper at Macy’s
My prize possession
was that sailor suit
my brother and I
clowning for the camera
replete with being
we
lived in our own world
sometimes that was good
In pink coat,
white stockings
and gloves,
Mom
ballerina-like,
graceful and
lovely
sometimes hard, too
The munchkin years
I can’t recall
this photo or this outfit
my dress too long
but we had our baskets
we were going places
Rick and me
Thanksgiving with Mom and The Tijuana Brass
11:50 a.m. Thursday, November 26. It would be a quiet holiday. Just me and Mom at the Actors Home for their annual Thanksgiving Day lunch.
I was nervous about seeing her. A little over four weeks had elapsed since her TIAs or mini strokes. I was afraid to see her further altered, especially after the dreams I’ve been having: dreams of Mom dying. I’d wake up thinking, “It would be a blessing if she went in her sleep,” just as she used to say. After the momentary relief and positive self-talk, the anxiety and sadness would creep in. My heart skipped a few beats.
When I arrived, her aide “L” said she wasn’t ready yet. I waited and spoke with a couple of the nurses and aides; we wished each other a Happy Thanksgiving. They thanked me for coming.
I saw one of the family members I know with her Mom. She was wearing a royal blue sweater and a silver brooch, her snowy hair swirled in a meringue-y bun.
“You look beautiful!” she said to her mother. She thanked the aide for dressing her so nicely, and she and her family walked toward the elevator.
L wheeled Mom out and said with his usual beaming smile, “Here she is!”
“Hi, Mom, you look so pretty in pink.” She was wearing her pink and beige print dress with a pale pink sweater.
“Thank you, L,” I said. “Why don’t you come with us to lunch?”
“I wish I could,” he said.
I was afraid Mom might freak out as she sometimes does in crowds, and away from her comfort zone. I made a mental note not to reserve a spot for us at the Christmas party this year. Last year she behaved very badly, so we ended up leaving early. I was hurt and disappointed.
Don’t be negative, don’t be negative, Erica. Take a deep breath.
We arrived on the first floor and I wheeled her into the lunch room. Tables were decorated with a trio of autumn-colored balloons tied to a paperweight of some kind. A paper “HAPPY THANKSGIVING’ sign and several paper cornucopias decorated the walls. Rod Stewart singing “The Nearness of You” piped through the speakers.
A friendly bespectacled man in a polo shirt with a clipboard asked our names and escorted us to a table near the window—sun streaming in, you could feel the heat.
“It’s warm today, Mom, about 62 degrees,” I said.
“Really?” she said, smiling.
“Should we get our own drinks?” I asked one of the women holding a pitcher of cider.
“No, someone will take your order,” she said.
“Okay, thank you.”
“Mom, do you recognize this song?”
“Yes,” she said, smiling even more brightly.
“It’s Rod Stewart.”
“Who’s that?”
“He’s a rock singer, but he sings standards too.”
“Mmm,” she said.
“Would you like some apple cider?” a young woman asked us.
“No, thank you,” said Mom.
“What do you want?”
“Oh, anything.”
“Ginger ale?”
“Okay.”
“Ginger ale for her, and coke for me and some water,” I said. “Thank you.”
“I can feel the heat,” she said, closing her eyes.
“Yes, like a spring day.”
The next song that came on was “Tijuana Taxi” by Herb Alpert. Wow, that brought back memories of Jackson Heights. Mom and Dad had that album when my brother and I were kids.
“Mom, Tijuana Taxi!” I said.
“Oh.”
“Remember, Herb Alpert? We had the album.”
“Oh, we did?”
“Yes.”
I don’t think she remembered, but she smiled anyway. If only I had the album cover.
The nice man with the clipboard was going table to table with a camera.
“May I take your picture?” he said.
“Sure, but first would you take one on my phone first? It’s been ages since we’ve taken a picture together.”
I handed him my iPhone and showed him how. He already knew.
“Thank you,” I said.
“You’re welcome.” He took a photo of us with his camera. I wonder where the photos would be displayed.
I need the memories.
Mom stared at her plate.
“Aren’t you hungry?” I said.
“Yes, I have plenty.”
She scooped up some turkey and stuffing with a soup spoon.
“Would you like me to help you?” I said, bringing a forkful of food to her lips.
“No, this is easier.” She preferred the spoon.
I wasn’t that hungry either.
At about 1:30 I asked Mom if she wanted to go back to her room.
“No, I like it here. I like the sun.”
“Okay, we’ll stay awhile longer.”
And I was so afraid she’d make a scene or be unhappy. It seems I was the anxious one.
Rod Stewart started singing “S’Marvelous” over the loud speakers.
“Mom, you know that one.”
I started to sing along.
“Yes, I do,” she said.
What’s Oncology?
This is a guest post by Sherry (she wishes to use only her first name).
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.
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.
Suburban Hobo 