Interconnectedness

Posted on March 17, 2014 by daughter3

“Let me ask you a question,” my mom’s boyfriend, “Kenneth,” says. “Does that tell you that is nearly basically one of the few things… that is the place to go? Because I can get the jumps on this thing. Is that fair enough?”

Huh?

The three of us are walking down the hall, holding hands, my mom in the middle, and he wants an answer.

“That sounds about right, Kenneth,” I say.

Kenneth is always solving a problem, developing a strategy, starting a new venture. Maybe he was a financial adviser, a businessman, an entrepreneur. In his mind, he still is. No matter what we’re talking about, he’s talking business. And he talks a lot.

“I love you, Kenneth,” my mom says.”

“That’s right. About 40,” he says.

“No Kenneth, I mean, I love you,” my mom persists.

“Yeah, 90 percent off.”

But then he reaches out and takes her hand and pretends to bite her finger, lovingly. He says, “Come here,” and he leans over and kisses her affectionately on the lips. She puts her head on his shoulder.

“Is that what you thought would be the situation?” he asks me. “Because we can just break … we can break it down. It’ll be easy; we can start today, tomorrow at the latest.”

“Okay, Kenneth. You’re the expert.”

When Kenneth takes a bathroom break, my mom looks a little worried.

“Do you know what he’s talking about?” she asks, because she’s so used to being confused that she thinks the communication problem lies with her.

“No, Mom. But it’s okay.”

“But what am I going to do when it comes time for us to do all this stuff?”

“I’ll take care of it, Mom. Don’t worry.”

It isn’t always easy to be with Kenneth. He can be a little challenging.

But because of him, my mom isn’t lonely anymore. She doesn’t cry when I leave. Life is so much happier for her and so much better for me. I can’t express how much.

The world is interconnected; people affect each other, sometimes profoundly, in ways they may never know, as my friend Nancy pointed out. Kenneth doesn’t know it, but he’s making a real impact in the world — not just on my mom, but on me and on the people I encounter.

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My Mom’s BF

Posted on February 17, 2014 by daughter3

I first met “Kenneth” a month ago in the Hebrew Home dining room, where my mom was eating lunch. Between the moaning woman two tables away and the old lady screeching out a broken-record rendition of the Alphabet song (never getting past “p”), he fit right in. As he stood over our table, he began dispensing what was probably meant to be financial advice.

“I want us to go over your options,” he said. “Because I think that will be a good possibility.”

“Oh?” I said.

“Yes, I think we could really … do you know what I mean?” he responded. “That could work for you.”

“Thank you,” I said. “I’ll give that some consideration.”

I felt bad, but I eventually had to ask him to leave just to get a little time with my mom.

A couple weeks later, I saw my mom sitting next to Kenneth when I arrived during the Saturday afternoon Bingo game. I bent over to greet my mom with a kiss, and I got the distinct feeling I was interrupting something.

“Oh, hi, Beth,” my mom said, less enthusiastically than usual.

“Your mom has a boyfriend!” the Bingo caller, a private aide, called out. Throughout the game the two looked at each other and touched each other lightly.

When the game was over, Kenneth took my mom’s hand and suggested they go for a walk. Then they took off down the hall.

I have to admit, I felt a little displaced. But more than that, I felt surprised. My mom flirts with everyone (male and female), but I never, ever thought she’d find herself a boyfriend. It’s not who she is, I thought.

After sitting in the activities room for a few minutes, I went in search of them and when I found them started walking with them.

“There’s a tall fellow behind us,” Kenneth said to my mom. “He’s … he’s trying to control us.”

“That’s Beth,” my mom said. “Beth, what are you doing?”

“Oh, sorry Mom,” I said. I stopped, lowered myself into a chair, and let them walk.

I passed the time having a nice conversation with one of the aides. I also talked to another resident for a while, wrote in my journal, and checked my email on my phone. And I felt a little dejected.

When I decided my mom and Kenneth had had enough time to themselves, I went looking for them. I found them in the TV room, with a large group of residents who were watching Jack Lemmon and Henry Fonda in Mr. Roberts. But my mom and Kenneth couldn’t see the movie. They were sitting under the screen, facing the audience and whispering. I waved at them, and they were surprised to see me, as if they hadn’t realized I was even there. Then they went back to talking to each other.

I didn’t break in. Instead, I took a seat among the residents and watched the movie. But I alternated my gaze between the onscreen story and the old couple sitting under the screen, lightly and affectionately touching each other. At one point, the old lady kissed the old man’s hand. And I thought, “I’ve known for some time that my mom would reach a point where she wouldn’t recognize me. I never thought there would come a day when I didn’t recognize her.”

When I left that day, I realized that I could gradually, but easily, become an observer in my mom’s life, passively watching the disease take her away from me. But I don’t want to let that happen. So what if my mom is changing. I don’t need to hold onto who she was. I can accept who she’s becoming, and spend time with the “new” person, even if she doesn’t care as much whether or not I’m around.

Plus, she’s happy.

When I arrived for our visit yesterday, my mom and Kenneth were playing Bingo again. They were holding hands. She was laughing and smiling. She had a new haircut and was wearing a string of teal-colored beads around her neck. Kenneth was wearing gold-colored beads. And he had on her sweater.

After the Bingo game, I invited them both for a walk. The three of us. They happily agreed.

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A Day with Alzheimer’s

Posted on February 5, 2014 by daughter3

My mom is thoroughly enjoying the Sunday concert at Hebrew Home.

“He’s really good!” she says of the musician who’s singing folk songs and playing guitar. She’s looking relaxed, happy, and unselfconscious, with none of the worry lines that marked her face for all the years I’ve known her.

And I think, “This is a good day with Alzheimer’s.”

For a moment, looking at my beaming mom, I go even further and tell myself maybe Alzheimer’s is a blessing. It’s freeing my mom from so much of the shit that bogged her down in life, the chronic worry, the low self-esteem, the junk that kept happiness at a distance.

And as if to underline my thoughts, a man toward the front gets up from his chair and with the aid of his cane walks down the aisle. He has a huge smile on his face, and on reaching my mom, he stops, bends down, and whispers in her ear, “Life is good at 97.” And I think, “Yes! Yes! It’s NOT all about loss!”

Fifteen minutes later, after we’ve all risen to join the musician in singing,”God Bless America,” my mom asks, “How are we getting home?”

And I say, “We’re getting on the elevator, Mom.”

And she says, “But that’s not how to get home.”

“Well, … you’re going to your room, Mom.” Your room at Hebrew Home, Mom, the only home you have.

“You mean I’m staying here?”

“Yes.” Oh, no.

“Well, you’re staying with me tonight, right?”

“Umm, no. Mom, you’ll be ok. You know this place.”

“No, I don’t. You’re not staying with me? You’re leaving me all alone?” The tears start.

“Mom, you know these people. You won’t be all alone.”

“I don’t know anyone,” she says. “I can’t believe you’re doing this to me.”

She doesn’t want to get on the elevator, but she does, and when we get to her room she collapses on her bed and cries and cries.

“Don’t worry, Mom. You’ll be ok.”

“No, I won’t. And you don’t care about me.” She’s weeping and moaning and she won’t be consoled.

“Mom, it’ll be okay. I promise.”

I get no response and her eyes won’t meet mine. She’s giving me that look of betrayal. She’s miserable, and I’m a terrible daughter.

This is a bad day with Alzheimer’s. Alzheimer’s is a bitch.

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The Next Bed

Posted on January 29, 2014 by daughter3

“Hello?” my mom says.

“Hi, Mom!” I always try to sound excited whenever I call.

“Oh, hi Beth,” she says. Then she turns away from the phone, and I hear her say, in a whisper, “It’s my daughter.”

“Who are you talking to, Mom?”

“Oh, just the nice lady in the bed next to me,” she says.

“Do you want to keep talking to her?”

“Oh… no, that’s okay. I’ll talk to you for a little while,” she says, sounding not quite as excited as she usually does when speaking with me. Seems she’s making friends.

I’m so glad she’s finding a place for herself at Hebrew Home. Still, I’m feeling a twinge of sadness because she appears to need me just a little less.

I’m like a parent who, with mixed emotions, watches her child grow up, become more independent, and leave her behind. But I have to remind myself my mom’s not maturing, learning how to make her way in the world. She’s preparing to leave it, or to enter a different world, one that may not have a place for me, or anyone else who’s real, in it.

But she hasn’t left us yet.

“Why don’t you call me tomorrow night?” she says, five minutes into our conversation. There’s a real person sitting right next to her, and she wants to talk.

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Time

Posted on January 15, 2014 by daughter3

“I want to keep you forever,” my mom says, holding my hand and lifting it to her heart. We’re walking the corridors of the Hebrew Home, having just visited the bird cage, on our way to see the fish tank. She seems genuinely happy, and she’s relishing our time together.

It reminds me of the rare times we spent alone together when I was a child, like when she walked me home from school my first week in kindergarten. I loved when it was just the two of us, when my sisters weren’t stealing her attention and she was focused on me and not on my father, or cleaning, or making dinner. I loved having her all to myself.

These days, we’re reliving our original relationship in so many ways, except now I’m the parent, and she’s the child. At least that’s how it seems to me; our relationship is not always so clear to her.

Yesterday, for a moment, she didn’t know who I was.

“Are you my sister?” she asked me as I sat in front of her. “What’s your name?”

The time I spend with my mom now is all the more precious because I don’t know how long our relationship will last.

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A Terrible Vacation

Posted on December 3, 2013 by daughter3

My mom is having a horrible time at the Hebrew Hotel on the Hudson. She says she’s never coming back to this place again, at least not by herself. She can’t wait to get home, which is unusual, because she was never happy to go home in the past; she always wanted to stay.

The place is just not what it used to be, she says. Especially the restaurant. Where else would they tolerate someone getting up out of their seat repeatedly and making loud unintelligible noises while spilling their drink on purpose? Certainly not in Niagara Falls, my mom’s hometown. This place has really gone downhill and it’s gotten strange (she’s never heard of a restaurant that gives out free meals, but she has to admit there’s an upside to that).

And she doesn’t like that curtain down the middle of her suite, separating of her bed from a bed reserved for another guest. That’s really weird, isn’t it?

My mom confusing a nursing home for a vacation spot might be kind of funny if she wasn’t in incredible emotional pain so much of the time, weeping uncontrollably whenever I see her or talk to her on the phone. I might be able to laugh if there was actually a home for her to go to, or if I didn’t have to lie just to give her even one moment of relief, security, peace.

“I’ll take you home tomorrow, Mom,” I say.

Alzheimer’s is cruel.

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She can’t understand

Posted on November 25, 2013 by daughter3

“You’ve been so good to me for so long; I just can’t believe you would do this to me,” my mom says. “You don’t love me.”

When I reach over to offer comfort, she doesn’t want me to touch her.

She’s been like this, on and off (more on than off), ever since I moved her last week into the Hebrew Home in Riverdale, a nursing home. It all happened very suddenly when an admissions officer called me on Monday.

“We have a bed for your mother,” she said. “She can move in today or tomorrow.”

There was no time to prepare my mom or myself for the move, or to get my sister Kathy’s help, since she lives in South Carolina. There wasn’t even enough time to decide whether or not this was the right place for her. She definitely had to go to a nursing home paid for by Medicaid; we don’t have money to rent her an apartment and hire 24-hour care. The question is whether this was the best place for her.

She doesn’t like it, she says. That’s what I was afraid of.

“I don’t know how I’ll make it through the night. You can’t leave me here.” She weeps, incessantly, and there’s no way to console her.

I let her grieve for a while, but then I try to distract her. I take her off the dementia unit and walk her around the facility. We look at the birds and the fish, and the art. The place is massive, and there’s lots to see. She seems to be enjoying herself, almost.

“Hey, we better get home,” she says. “It’ll be getting dark soon.”

“It’s okay, Mom,” I say. “We have plenty of time.”

But I can put her off for only so long. As my departure grows nearer, there’s no avoiding her confusion and distress.

“Why can’t I go home?” she pleads.

“Because you’re going to stay here for a while.”

“Only if you stay with me,” she says.

“I’ll be back tomorrow,” I say. “I promise.”

She’s lost in tears.

She can’t understand why I’m keeping her from her home. She can’t understand what she’s doing in this strange place with people she doesn’t know (people she’ll likely never know because she can’t remember them from one day to the next). And she can’t understand why her life has been taken away and why her daughter doesn’t love her anymore.

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A Mess

Posted on November 5, 2013 by daughter3

Ring! Ring!

“Hi Mom! How are you?”

“Well, not so good. It’s all such a mess,” she says.

“What is?”

“I don’t know … I can’t explain it.”

She recommends I talk to Phyllis, her roommate.

“She’s having a little diarrhea,” Phyllis says. “She’s walking around in her underpants.”

“Oh.”

“Maybe you want to call downstairs and have them give her something,” Phyllis says. Downstairs is the nurse’s station.

“Good idea.”

I tell my mom I’m going to call downstairs for medicine.

“There’s medicine for this?” she asks.

“Sure, Mom. I’ll call you right back.”

No one answers at the nurse’s station. Hmmm… comforting. I leave a message.

“I left a message at the nurse’s station, Mom. Maybe they’ll come up and give you some medicine.”

“Oh, okay. I’m just sitting here in my underpants.”

“Why don’t you put your slacks on?”

“Oh, I will,” she says. “I’ll run and put my pants on if they come.”

“Why not just do it now?”

“Well, okay. Now don’t hang up! I’ll be right back.”

Five, six, seven minutes pass. I think she’s forgotten I’m on the phone. But then I hear her return.

“Hello?” she says, as if she’s just picked up a ringing phone.

“Hi, Mom. Did you put your pants on?”

“Yes,” she says.

“Good. Now if someone comes, you’ll be ready.”

“Is someone coming?”

“They might. I left them a message, and maybe they’ll come to give you some medicine.”

“Oh, okay. Ya know, I think it’s better,” she says.

“Good.”

“If they come, do you want me to call you?” she asks.

“No, Mom, that’s okay.” She doesn’t know how to call me. She stopped making phone calls a long time ago.

“But I think it might be better if I call you. I might know more then. After they come.”

She’s really struggling with this, I’m thinking. With Alzheimer’s, even diarrhea becomes a difficult concept.

“Um, okay, Mom. You can call me.”

“It’s just …”

“It’s just what, Mom?”

“It’s just that … it’s all about shit,” she says, lightheartedly. “This whole thing is all about shit.”

“You never used to say that word, Mom. You used to spell it out. ‘S-H-I-T,’ you’d say.”

“Oh well,” she says. “This is much easier. ‘Shit.’ See, it comes out much more quickly.”

At times, Alzheimer’s can be so simplifying.

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Home

Posted on October 30, 2013 by daughter3

Ring! Ring!

“Hello?”

“Hi, Mom! How are you doing?”

“Oh, not so good.”

“Why?”

“I don’t know what to do.”

“About what?”

“I was thinking I might go home tomorrow.”

“Oh?”

“But then I was thinking … when are you coming to visit?”

“Friday, Mom.”

“Okay. Then maybe I’ll wait for you to come and we can go together.”

“Um… okay.”

“What do you think about that?”

“Well, I don’t know, Mom. Why don’t you stay where you are?”

“Here? Oh, I can’t stay here.”

“Why not?”

“Because I have to go home.”

Awkward silence.

“Oh, there isn’t a home for me to go to, is there?”

“Well, you are home, Mom, right now.”

“This is my home?”

“Yes.”

“Well, I don’t like this home as much as my other homes.”

“I know, Mom.”

Tears. Weeping.

“I’m so scared.”

“I know, Mom. I know. But you’re safe. Nothing bad will happen to you there.”

“But it means I’ll be all alone.”

“You’re not alone, Mom. You live with Phyllis.”

“Who’s that?”

“Your roommate.”

“There’s no roommate here.”

“Yes, Mom. She’s in the other room.”

“Oh, her. She says we’re going to live here now. I don’t know what that will be like.”

“You do live there, Mom.”

“I do?”

It’ll really screw her up when she has to move again, into a nursing home, if I ever find one that will accept her. At least the place where she lives now looks like somebody’s home, even if she can’t recognize it as her own. So many nursing homes look like hospitals. She’ll never feel at home.

But then again, maybe it won’t matter where she is. Home, for my mom, is a place in her mind that’s far off in time and space, and it gets further and further away as her mind disintegrates. No matter what happens, my mom will probably never make it home again.

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My mom is so lonely

Posted on October 9, 2013 by daughter3

“You’re staying overnight, right?” my mom asks.

I shake my head no, for the fifth time. I just got here an hour ago, and that’s all she can talk about.

My mom wants nothing more than to go to bed with me in her apartment and wake up to find me there.

“I wish you could come live with me,” she says. “But that will never be.”

She’s so lonely. Everyone in her life, everyone she can remember, is gone — her brothers and sisters, her mother. I’m her steadfast connection to family, the person she’s closest to. My presence comforts her because it tells her she’s not completely alone. But I’m never there enough, and not for long enough. She spends so much of our time together lamenting the fact that I will leave. Soon. Always too soon.

“You never stay overnight,” she says.

I try to change the subject.

I know it’s hard for her to fight the loneliness, to keep it at bay. She’s good at making new friends, but bad at remembering that she’s made them. Once her roommate has gone to bed, she feels all alone in the world.

“There are so many people who like you,” I say, trying to buoy her up.

“I don’t know what you mean,” she says. “I don’t know anyone here.”

I’m worn out with her loneliness. It’s making us both sad.

Thankfully, her stuffed animals and dolls give her some comfort. Kathy and I bought her a doll that she fell in love with, but she was so afraid someone would steal the doll that she hid her. Then she couldn’t find her, which made her think someone really had stolen her. She was bereft, sadder than if she’d never been given the doll in the first place. Then the doll reappeared in the kitchen cabinet, hidden behind cereal boxes.

Sometimes I feel like my mom is like that doll, disappearing with no warning, leaving me feeling bereft. But then like the doll, she reappears — or at least some semblance of her does. Sometimes I think it would be better if, on one of her best days, she would just die, so I could remember her as fully aware, as fully engaged, as possible. I don’t want to watch her lose touch with everyone around her, and with herself. I don’t want to watch her get more lonely.

___________

I’m raising money for the Alzheimer’s Association, a great organization that has helped my mom and me tremendously. I’m participating in the Walk to End Alzheimer’s. My mom and I would really appreciate any support you want to give. Please visit our page.
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