My mom cares about my feelings

Posted on September 8, 2013 by daughter3

“What’s wrong?” my mom asks. “You sound sad.”

“I’m fine,” I say.

“But you don’t sound fine,” she says.

“Ok, I guess I am a little sad,” I say.

“Why?” she asks.

“I don’t know,” I say, because I’m not about to tell her the real reason, that it’s her descent into Alzheimer’s that’s making me sad. “I guess I just had a bad day.”

“Oh,” she says. “I hope you feel better tomorrow.”

And I think to myself, “Who are you, and what did you do with my mother?”

Before Alzheimer’s, my mom never encouraged me to acknowledge bad feelings, let alone express them. “Think positive,” she would say every time I was feeling down. “Tell yourself you feel happy,” she’d say other times.

My mom was never equipped to handle bad feelings. Raised in an alcoholic household, she for some reason chose to create her own family with a controlling rage-a-holic (he was “dad” to me). Denial was second nature to her; she imposed it on others’ feelings as well as her own. I think she thought feelings were dangerous, and denial was a form of protection.

But now, her complex, age-old defense mechanism is breaking down. As her mind is ravaged by Alzheimer’s, her emotional life — including sensitivity to the emotions of those around her — is taking a primary place. After all these years, my mom is finally there for me emotionally. But now that she wants to know my feelings, I can’t possibly share them with her.

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Are you a boy or a girl?

Posted on August 28, 2013 by daughter3

“Are you a boy or a girl?” my mom whispers into the phone, afraid her roommate might hear her question.

“A girl,” I say.

“You ARE?” she asks, as if she can’t believe it, as if it’s deeply upsetting for her.

“Yes.”

“How long have you been a girl?”

“I’ve always been a girl, Mom.”

“I never knew all this time that you were a girl,” she says, a note of shock in her voice. “Does it bother you to be a girl?”

“No, Mom.”

“Does everyone else in the family know you’re a girl?”

“Yes.”

“No one ever told me.”

I don’t know what to say to that.

“Do you look like a girl?” she asks.

“I guess so.”

“Do you have long hair?”

“No, I have short hair.”

“Do you dress like a girl?”

“Umm … yes.”

“Do you get your period and that kind of stuff?”

“Yes.”

“Oh, well I guess you are a girl.”

“Yes, I am.”

“Did the rest of the family just accept it?”

“Yes.… I would think so.”

“It’s a shock to me. All along I thought you were a boy, and it turns out you’re a girl,” she says. “I still love you, though, no matter what you are.”

“I love you, too, Mom.”

This conversation, in some form or another, has been happening almost every day this week. Not only is it pointless for me to try to figure out what it means, but it’s also probably a bad idea. Still, I can’t stop myself.

Sometimes, I know she’s mistaking me for her brother Bud, and she’ll actually say, “I always thought you were my brother.”

Other times, I wonder if she’s returning to my childhood, when I dressed like a boy, acted like a boy, and played with boys’ toys. It did bother me that I was girl, and I preferred being perceived as a boy. Was there a part of her, more than 35 years ago, that sympathized with me, respected my wishes, and wanted to empower me to choose my own identity as a boy? And is she returning to that time now?

Or, have I always been a boy to her, in some deep, subconscious part of her brain as, in my teenage years, I took on the role she wished my father had adopted — comforting her, supporting her emotionally, and doing the things a good husband does (minus the sex part, thank God)?

Or maybe she’s reliving the conversation we had over 20 years ago, when I came out as a lesbian. She was shocked, but after a night of thinking about it, she was extremely supportive. I don’t remember her asking how others felt, if I was ok with it, or if the family accepted it. She seemed much less troubled by it than she is by my current identity as a girl, which is apparently a huge loss for her. Maybe, in the fogginess of Alzheimer’s, she’s finally giving herself the chance to ask the questions she didn’t feel she could ask then, to grieve what she couldn’t grieve then.

Or maybe she’s just confused.

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Nursing Homes

Posted on August 14, 2013 by daughter3

Finding a nursing home for my mom is proving to be one of the most difficult things I’ve ever had to do. It’s not even because of all the bureaucratic bullshit I have to face, like getting her assessed, applying for Medicaid, and finding an available bed in a place that’s not a million miles away from me. Well, it’s partly those things. But more than that, the challenge is in finding a place where I think she’ll be happy. That just seems impossible.

One place I’m considering has a reputation for great dementia care, but the unit and rooms are ugly and spare and hospital-like. Other places have fairly nice rooms in bright, open environments, but the dementia care is minimal and the patients are kept locked on their units. Another place seems to offer good care in a nice setting, but it’s so far from where I live and work that I won’t be able to visit often. The tradeoffs we have to make seem huge, and I can’t imagine how we’ll manage.

But even if I could find the ideal place, it wouldn’t make my mom happy.

Nursing homes are not happy places. As my friend Judi said to me, they’re waiting rooms for death. They’re the places where old people who’ve lost nearly everything go to lose what little they have left, from their assets to their dignity. There’s nothing happy about that degree of loss. And I have to wonder if it’s possible for anyone who enters a facility, even on a visit, not to sense that loss and get depressed by it.

I’m pretty certain that even with her dementia, my mom will feel it. I imagine she’ll go on feeling it for a while, at least until she’s lost herself completely.

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The Cow is Alive

Posted on July 29, 2013 by daughter3

I was talking with my friend Nancy about my mom.

“She asked me again about her brothers and sisters,” I said. “I told her they all died. That made her cry.”

“Maybe you should just tell her they’re fine, but they’re unable to visit. They send their love.”

As you may have guessed from previous posts, I’ve so far been resistant to taking this approach. Maybe I wanted to believe my mom’s disease wasn’t advanced enough to warrant it. Or maybe I thought our relationship was so special that I’d be able to tell her the painful truth without upsetting her, as if it wouldn’t hurt so much coming from me.

But I realize Nancy is right. As she said, there’s no reason for my mom to be traumatized again and again. It’s not like she can process the grief and move on; it’s brand new every time.

To cement her message, Nancy reminded me of a story I had told her about another friend who took the same gentle approach with her father that Nancy was suggesting I take with my mom.

That friend is Jennie, whose father had Alzheimer’s. Though he lived in New York (the city where Jennie lives), he would often travel to California to stay with her sister Shirley. Jennie and Shirley shared responsibility for his care.

One day while their father was in California, Shirley called Jennie. She said he was very worried about his cow, an animal he’d cared for decades before when he was a young child in Puerto Rico.

“What are we going to do about the damn cow?” Shirley asked.

After thinking about it and doing some research, Jennie found a solution.

“Put him on the phone,” Jennie told Shirley when they next spoke. Then she started talking to her father.

“Papi, I know you’re worried about the cow,” she said. “I want you to know the cow is okay.”

“Really?” he asked.

“Yes,” she said. “Listen.”

At that moment, she put the telephone mike next to her computer speakers and hit a button. The most beautiful sound, to her father, issued forth from the speakers.

“Moo! Moo!”

Jennie had found a whole collection of farm animal sounds online, and she played him the crucial one.

“I’m so glad my cow is okay,” he said. “I feel so much better. Thank you.”

Yes, thank you, Jennie. And thank you, Nancy. It’s good to have friends. (And electronic animal sounds!)

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Living in Alzheimer’s world

Posted on July 15, 2013 by daughter3

“What day is it tomorrow?” Mom asks.

“Saturday,” I reply.

“Oh, good. That means I don’t have to go to work.”

Hmmm. People have been telling me I shouldn’t correct my mom when she says something that’s not real. “Live in her world,” they say. So I decide this time to play along.

“Where do you work?”

“I don’t know, but I go every day,” she says, a mixture of wonder and dread in her voice, as well as a little laughter. “It worries me, because I don’t know how to get there.”

“Don’t worry; I’m sure they’ll come and get you.”

“My bosses will come and get me?”

“No, the people who work in your facility.”

“My coworkers?”

“Uh … no.” This conversation isn’t going so well, so I try to redirect it. “Who are your bosses, mom?”

“I don’t know,” she says.

“Well, what kind of work do they make you do?”

“I don’t know, sweetie. The brain’s not working. I don’t know what my job is, who my bosses are, or how to get there.”

“Are you getting paid?”

“Oh dear,” she laughs. “I don’t think so!”

I laugh, too. And I realize I can’t keep this up. Almost every word my mom says is tinged with irony, as if she knows it isn’t true, as if she realizes her imagination is filling in where her memory is blank. Which part of my mom do I support — the one making up stories or the one that knows they’re not real?

“You know, you really don’t work anymore, mom,” I say.

“I don’t? Well then, what am I doing here?” she asks, and we both laugh. I don’t think she really expects an answer, so I don’t offer one.

I completely understand why people think caregivers and loved ones should try to live in the world of the Alzheimer’s patient, to affirm the person’s experiences and beliefs. But I don’t think it works for my mom and me. Or maybe I’m just not willing to accept what the disease is doing to us. I’m not ready to relinquish my mom to Alzheimer’s world; I want her to stay in my world.

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Moment by Moment

Posted on July 2, 2013 by daughter3

When my mom’s close friend passed away three months ago, I debated whether or not to take her to the wake. I was exhausted, weather forecasts were terrible, and the journey would include an expensive cab ride to and from the funeral home.

“She’ll never remember it,” another friend said. “I don’t think you should bother.”

Sound advice, I thought, but in the end I didn’t listen to it.

I took her to the funeral home, and the family was overjoyed to see her. She seemed really happy to be there. But the next day, she had no recollection of it. She’d even forgotten that her friend had died.

Still, I’m so glad I took her.

We spend so much energy and time trying to lay down good memories, doing things that may not be much fun in the moment, but that we’ll remember the rest of our lives. We raise our children with lessons and experiences we hope they’ll remember well into adulthood. Memories make us who we are.

But Alzheimer’s is teaching me that memories — like anything in life — can disappear, and so we also have to live in the moment, and for the moment. Because the moment is all we really have.

I’m so glad I didn’t deny my mom the moment of saying goodbye to her friend, even if her memory of it is gone forever.

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Changes in store for my mom

Posted on June 29, 2013 by daughter3

When I was a little kid, my father used to visit his aunt Carrie in a nursing home. Every once in a while, I would go with him. I remember walking down the halls and seeing lots of old people. I never really understood what they were doing in that place. And I never understood why we visited Aunt Carrie. We couldn’t play with her, and she didn’t talk much. We certainly never enjoyed the visits; we dreaded them. What was the point of visiting?

Last week, my mom’s assisted living facility told me she has to move into a nursing home. She has a problem they can’t manage. Something is wrong with her ability to swallow, and so all of her liquids need to be thickened; otherwise fluid might enter her lungs and cause pneumonia. In the dining room, the servers make sure her drinks are thickened. But when she gets thirsty in her own room, she can’t remember that it’s dangerous to have a glass of water. She drinks and puts herself at risk. The staff can’t control her.

So like Aunt Carrie, my mom will live out her last days in a nursing home, where everything she puts into her mouth will be handed to her by the staff. She’ll be safe from herself. But her life will be smaller than ever.

All of her possessions will shrink down into whatever can fit into a closet and a night stand. She’ll have a bed and a curtain to separate her from a roommate. If she’s lucky, she’ll have a window.

The worst part is that she’s not ready for a nursing home. She can still walk and feed herself, bathe, dress, and go to the bathroom on her own. She waters her plants and washes the dishes in the apartment where she currently lives in the assisted living facility. Sure, she gets confused, and she can’t remember where she’s supposed to go all the time, but she knows enough to smile, say hello, and compliment all the people she meets. They look out for her and point her in the right direction.

I’m sure she’ll make friends in the new place, but it’s not going to be easy.

“I never imagined my life would turn out like this,” she says, trying to figure out how she got picked up and deposited into the unfamiliar setting where she now spends all of her days. How will she feel when it changes, again?

When I was a kid, I never thought that one day I’d put my mom into a nursing home.

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My mom is growing into childhood

Posted on June 10, 2013 by daughter3

Every day, in different ways, my mom gets a little more childlike.

“You’re my bestest friend and … daughter,” she says to me, the daughter part sounding more and more like an afterthought.

“You’re the only one left,” she says. But I remind her that all of her daughters are still alive, which prompts her to ask who her daughters are. I realize when she says I’m the only one left, she’s not talking about her daughters. She thinks I’m someone from the earliest part of her life — a brother, a sister, a friend. She’s losing her identity as a mother and moving further back into her own childhood. The people and places that populated her world then are what she remembers, what she longs for.

“It’s not so bad here,” she says, referring to the assisted living facility where she now lives. “But it’s nothing like Niagara Falls. I want to go home.”

I’ve done the math, and Niagara Falls hasn’t been her home for almost 60 years. Just before moving into assisted living, she spent over twenty years in a small apartment in New Jersey that she loved. Before that, she raised her children in a New Jersey house where she lived for 36 years. She has a limited recollection of the apartment; she seems to have lost all memory of the house.

There’s so much loss associated with this disease, and my mom knows it. One of her favorite sayings is, “I’m losing it.” I can’t argue with her.

But maybe I don’t have to focus so much on the loss.

I’ve been thinking a lot about a recent New Yorker article that describes a new approach to dementia care based on the work of Thomas Kitwood, a psychologist who put patients first. He believed “true meeting can occur, and life-giving relationships can grow” if those who care for dementia patients can get beyond their own defenses and anxieties.

My mom is gradually forgetting that she gave birth to me almost 45 years ago, and that troubles me, but these days, there’s more tenderness in our relationship. She’s more carefree and playful, except when she’s sad. Like never before, she seeks out connections with the people around her, even if she can’t remember them five minutes later. We’re closer than we’ve been in 20 years, and close in a healthier way than ever before.

My mom may be losing the person she used to be, but our relationship isn’t lost. It’s changed, and it continues to change. And in some ways, I guess it’s growing.

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My mom is having an identity crisis … sort of

Posted on May 29, 2013 by daughter3

An aide knocks on my mom’s door while we’re talking on the phone.

“Come in, come in,” my mom says.

The aide heads straight for her bedroom to get my mom’s nightgown. She’s there to help her get ready for bed.

“I’m talking to my … my … son,” my mom says.

“I’m not your son,” I say. “I’m your daughter.”

She laughs. “You’re my daughter? Now … don’t try to fool me!” She laughs again.

“But mom, yes …”

She can’t hear me because she’s laughing with the aide, who’s trying to take off her bra.

“Mom, I’m your daughter,” I say.

“You’re a girl?” she asks. “You don’t sound like a girl!”

Oh boy.

“I don’t? But I am!”

She’s laughing again; really, she hasn’t stopped laughing since this conversation started.

“Now come on, Beth! … er, you’re not Beth … you’re a boy! You’re … Bud!” Bud was her brother.

Now she’s really cracking herself up.

“You really think I’m Bud, mom?”

“Oh, I guess… I don’t really know,” she says. “But you don’t sound like a girl!”

And so she brings me back to the earliest identity crisis of my life — my wish, in Kindergarten and First Grade, to be a boy instead of a girl. I wore my hair very short (Mom cut it that way!), and I wore very boyish clothes.

“Are you a boy or a girl?” kids would ask.

“Girl,” I would say, but I’d secretly relish the question, loving that this simple fact needed to be verified because it wasn’t immediately obvious. Maybe there was a little bit of boy in me after all, I thought, and I liked it.

Now, in my forties, there’s no question in my own mind that I’m not a boy. It’s so strange, yet undeniably funny, to have my mom bring me back to what seems like an age-old question, at least in my life. Alzheimer’s is no doubt returning my mom to the early days of her life, but it’s doing the same for me as well.

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My mom was deeply insecure

Posted on May 20, 2013 by daughter3

My mom has become very sociable since she’s started losing her mind to Alzheimer’s. She never used to be. It’s as if all of the negative thoughts that kept her fearful of people and reluctant to fully engage have melted away, and she is like a carefree child.

“Hello,” she says, reaching out to touch the hand or arm or shoulder of every resident she encounters in the dining room at the assisted living facility where she lives. She goes out of her way to visit every table.

“I love your blouse,” she says.

She’s collecting votes to be elected sweetest resident in the facility. And if the election were today, she’d win.

“Your mother is a wonderful lady,” one woman says to me. “She’s a real sweetheart,” someone else says. My mom smiles demurely and moves on to her next greeting.

It’s not that she wasn’t a nice person before, but she was deeply insecure and inhibited. She was shy about talking to people, especially new people. I don’t know why — maybe because her father was an alcoholic or her family was poor, and she felt ashamed. She never went to college, and she always felt she couldn’t speak intelligently. She believed she wasn’t pretty. Whatever the reasons, Alzheimer’s has made a lot of that go away.

I can’t say Alzheimer’s has gifts, but I do have to wonder about the human brain and how it adapts for survival. We learn a lot of things over the course of our lives that help us get through the moment, but in the long term they get in our way. If only Alzheimer’s could be selective and rid people of only those memories they should never have formed in the first place.

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