Sculpture Garden

I don’t always know what to do with a beautiful June day, when the sky is deep blue, the air is fresh, and the sun is shining. But when I’m at Hebrew Home, the best way to spend it is in the facility’s sculpture garden with my mom.

The works come from famous artists, and they’re abstract, arresting, stark, made of stone, or metal, or wood or other natural materials.

“What’s that?” my mom asks, pointing to something made of wood and metal, looking both like a tree and an animal.

“It’s a sculpture,” I say.

“What’s a sculpture?” she asks.

“It’s …. a work of art.”

“Oh,” she says. “Where is its head?”

“I don’t think it has one.”

“Well, as long as it doesn’t come over here,” she says. “It’s not going to, is it?”

“No.” I shake my head.

“Good.”

Appreciation of art was never one of my mom’s strong suits.

The sculptures are arrayed on a lovely grassy sort of knoll along the Hudson River, and there is a path where we can walk, with trees creating nice shady spots.

We sit in lawn chairs in one of these spots, gazing at the river and the trees and the vegetation. This is the kind of art my mom appreciates.

“It’s so beautiful here,” she says. “Look at that … that … what is it called?”

“A tree?” I ask.

“No, that thing up high, next to the tree.”

“That’s a building off in the distance.”

“That’s a building?”

I nod.

A boat sails past. We can see it for a moment, but then it is shrouded by the trees on our side of the river.

“Oh, if I could cut those trees down, I would.” She starts to motion with her hands, as if cutting with a large clipper. “Just get a … a … and cut’em down.”

I smile.

“Look at … oh that water is moving. Moving and moving.”

The waves in the river appear calm, but if you look closely, the sun’s reflection is jumping off of every little ripple, glimmering, sparkling. I wouldn’t have noticed it if she hadn’t pointed it out.

“Those things over there,” she says, pointing. “The bays, the chays, no … chairs.” She starts laughing.

“You mean the benches?”

“They’re benches? They don’t look like benches.”

“Yes, they are.”

There’s an unusual tree in front of us. It has a flat top.

“Get rid of that yucky tree!” she says, almost gleefully.

“Nothing wrong with that tree,” I say.

Less than two minutes later, she says, “I like that little tree.” She’s incredulous when I tell her she just said we should get rid of it. Then she laughs.

We sit for more than an hour, and the conversation repeats itself. As if the words are hanging in the air above us, swirling around, and she’s plucking them down and throwing them back, and plucking them back down as they recirculate in an endless loop. But they are constantly new to her. To me they are old, and I am bored. No, I am past being bored.

“You’re staying all night, right?” she asks. It’s a question she asks me every time I visit her.

“Of course,” I usually say, even if I know I’m leaving in two minutes.

“I can’t. I have to work tomorrow,” I sometimes say. That disappoints her, but these days she usually accepts it.

But this time, I feel like saying something different.

“Who’s going to take care of all the animals if I stay overnight?”

I don’t have any animals. But I say it anyway. It makes almost no difference what I say.

“Oh, right,” she says. “What kind of animals are they?”

“Cats,” I say.

“Oh yes. Isn’t there someone in our family who doesn’t like cats?”

“Dad. He didn’t like cats.”

“Does he still not like cats?”

“Umm … Dad died.”

“He did?” Incredulous again, but with a serious look on her face. “I didn’t know that.”

“You forgot.”

“No, seriously,” she says.

“You seriously forgot.”

I no longer have to be so careful with what I tell her, because even if it upsets her, it will only last a second.

I can almost experiment in our conversations, knowing I’ll have another chance to tell her something, and another, and another. An infinite number of chances, it seems.

Earlier that day, in her room, she broke into spontaneous laughter. Just as quickly it turned to tears.

“I feel so awful,” she said, weeping.

“What happened?” I asked.

“I don’t know,” she said, and then the tears dissolved instantly.

Within seconds, she’d forgotten she was even crying.

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Play

I sneak up on my mom in the dining room and surprise her.

“Oh, don’t scare me. I get scared very, very….”

“Easily?”

“Yes… no… very, very… greatly.”

“Sorry.”

We walk to her room and lay on her bed. I play Englebert Humperdinck on my iPod Touch. The device shakes as the tinny sounding music comes out of the speaker.

“Do you know this?” I ask.

“Oh yes,” she says. She closes her eyes and starts to hum.

“You know, Engelbert is in his 80s now.”

“Oh, then he can get together with me.”

“Oh yeah,” I say. “You know, you’re almost 90.”

“Well don’t tell him that,” she says, not missing a beat. She barely knows what she’s saying, yet her timing is still impeccable.

She’s still totally into the blue Easter bunny stuffed animal who sings, “Jesus loves me” when she presses his belly. He’s with us on her bed next to a few other dolls.

I’m partial to the girl doll, with long brown hair, makeup and earrings, dressed as if she is going to the gym. I brush her hair with my mom’s plastic brush. I notice that my mom has put her own gold-plated watch around the doll’s neck, the watch face hidden in her hair, making it look like the doll is wearing a thick gold chain.

“Oh,” she says. “That’s where my watch is. I need that watch.”

She can’t tell time anymore, and the watch has stopped ticking. But she doesn’t know that.

“This little guy is so cute,” she says, snuggling the blue bunny.

“Yes, he is.”

“But he needs a friend,” she says. “There’s no one for him to be with.”

I offer my favorite doll, the long-haired gym girl.

“Hey, big boy,” the doll says to the bunny. “Give me a kiss.”

“Oh, I don’t know,” the bunny says to the doll. In the voice of my mom, he’s being coy.

“They don’t look good together,” she says. “She’s so tall, and he’s so … short.” Then she gestures, looking for words, unable to articulate her discomfort over the interspecies quality of their mismatch.

“They look funny together,” she says.

“What does it matter how they look, as long as they’re happy?”

“Oh, that’s right,” she says and smiles.

The doll skips over to the bunny, leans in, and gives him a kiss. Then gives him another kiss. Then another.

“Now, slow down,” the bunny says. And with that, my mom presses his belly, and “Jesus loves me” starts playing.

When we look at the photo albums full of family pictures, she doesn’t know who’s in them. And she doesn’t know it two seconds after I tell her, or two seconds after I tell her again.

All of the talk about her nine siblings has given way to the occasional mention of her mother. She often doesn’t even recall her childhood home in Niagara Falls, the only place she wanted to be in the earlier years of her Alzheimer’s disease, having by then forgotten the New Jersey home where she raised me, and lived, for 35 years, or the little condo she owned for 20 years after that.

Everything, all of her life, disappears. There is no past and no future. No place but the bed and no friends but the dolls and no sound but the music and our voices.

And so we play. And in addition to breaking my heart, it is rich and nourishing and full of possibility.

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Falling

I got a call from the Hebrew Home a couple of months ago.

“Your mother fell today,” said her doctor.

“Is she okay?” I asked.

“Yes, she’s okay, but she has a cut on her forehead. There was a lot of blood.”

“Is she upset?” I asked.

“She was just a little worried about all the blood on her hands.”

A sick sensation passed through me. I felt weakened, or like something inside of me fell.

Later that night, the Hebrew Home called again.

“Your mother fell,” an aide said.

“Again?!” I asked, and this time fear shot through me. That she should go from not falling at all to falling twice in one day was very distressing.

“Did they already call you about this?” the aide asked.

“I got a call earlier that she fell this afternoon. Did she fall again?” I asked.

“No. She fell just once.”

“Thank God,” I said.

I hadn’t visited her the previous weekend, thereby allowing two weeks to pass between visits. Sometimes I do that to give myself a break. It’s hard to visit every weekend.

But this time I regretted it, magically thinking that by missing my visit I’d somehow offered her less protection than usual. As if a two-hour weekly visit from me is what has kept her on her feet.

When I arrived the weekend after the fall, she wasn’t in the TV room or at her table. Donald was sitting alone. Thinking she was probably in her room, I made my way down the hall to find her.

I saw her standing across from the nurse’s station, leaning against the wall, her hair a wild mess, a worried and far-away look in her eyes, one of which was black from the fall.

She had a confused look on her face as I approached.

“Are you . . . my brother?” she asked.

“No, Mom. I’m Beth,” I said.

“Oh, Beth!” she said, and started to cry. It was a mixture of sadness and relief, and she wept and wept.

“It’s okay, mom,” I said. I hugged her.

“I think I’ve decided I want to go home to my mom,” she said.

“Okay, Mom,” I said. “We’ll do that later. But now, let’s go into your room.”

“I’m so glad you’re here,” she said. “I didn’t know what I was going to do.”

We went into her room, and she dried her tears. She went to the bathroom. Then I took her to the Sunday concert.

She seemed to enjoy sitting next to me in the large music-filled room. But she was a little less secure and stable.

I was so upset after that visit, convinced it was the beginning of the end for her. She seemed so fragile, as if the slightest thing could make her fall to the ground.

***

I got a call today from Gemma, the nurse practitioner who gives me a monthly report on my mom.

“Your mom was sitting at her table holding a bunny,” she said. “It’s a stuffed bunny. When you press it, it sings, ‘Jesus loves me.'”

“She got it at the church service on Easter Day,” I said.

“Oh,” she said. “Well, she had that bunny and she was singing with it.”

I smiled. She’s been playing with the bunny ever since she got it.

“And she thinks whatever man happens to be at her table is her husband. If only it could be that easy for me,” Gemma said. “Yeah, your mom is happy. She has no complaints.”

Alzheimer’s is like the weather. One day a storm; another day a mild sun with a gentle breeze.

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Three Husbands

Mom is sitting at her table across from Donald, and they’re smiling at each other. When she sees me, she beams.

“Hi Donald,” I say, as I lean over to kiss my mom.

“Is that his name?” she asks. “I’m so glad you told me!” She has an impish grin on her face.

They have their meals together every day, and they spend a lot of time sitting across from each other at their table between meals. I wonder if they ever get up.

“Let’s go for a walk, Mom,” I say. She needs the exercise.

“Okay,” she says, but she seems a little reluctant.

“Come on, honey,” she says, moving in his direction, taking his hand to entice him to join us. But he shakes his head and says, “No,” and so she leans over and kisses him goodbye — on the mouth. He kisses her back enthusiastically.

Their relationship has been going on for a few months, ever since Kenneth was moved to another unit.

One day I sat with her and Donald, wanting to get to know the new man in her life.

“What kind of work did you do, Donald?” I asked.

“MGM,” he said. “I ran the studio.” He nodded while speaking. “Universal Pictures. Warner Brothers.”

“Oh really?” I asked. “Hollywood?”

“I’m President Kennedy’s brother,” he said. “His cousin. His son. Joan Crawford and I have children together.”

I looked at him.

“I know you don’t believe me,” he said, his eyes shifty, a note of bitterness in his voice.

“Sure I do!” I said. Quietly, I sighed, and inwardly, I sort of cringed.

I’m just as happy that he doesn’t want to join us.

As my mom and I walk out of the dining room, the aides smile at us.

“Mariann has a new husband!” says one of the cafeteria workers, and winks at her.

“A husband?!” she says.”Who’s that? I don’t have a husband! I don’t even have a boyfriend!”

She has forgotten Donald before we’re even out of the room.

I was told that the day Kenneth left, my mom was devastated.

Those two were so close, had such chemistry, that everyone called him her husband. From his early days on the unit, he held her attention, taking her hand and walking her up and down the halls charming and confusing her with his talk of business deals and future plans.

“What’s he talking about?” she would ask me, thinking I understood. I didn’t. But none of it mattered, because once he reached over to kiss her, all of her confusion evaporated.

She was out of sorts for days after he was moved. And then gradually, or not so gradually, she forgot him.

“Who’s that?” she asks, whenever his name comes up. “I don’t know anyone by that name.”

The fact of the relationship still shocks me. For almost my whole life, my mom couldn’t stand men, especially my father, whom she divorced more than twenty years ago.

But Alzheimer’s changed her thoughts about even him.

“I wish I had never left Bill,” she said in the early days of her disease. “Then we’d be together now, and I wouldn’t be all alone.”

These days, she doesn’t remember Bill anymore, either.

“Who’s that?” she began to ask months ago.

“My father,” I say. “Your husband, well … your ex-husband.”

She gets a blank look on her face.

“You were married for 38 years,” I  say.

“I don’t know him,” she says, a smile on her face.

“He’s the man you had children with.”

She looks at me as if I’ve presented her with an abstract math problem.

Thirty-eight years, motherhood, marriage — all washed away.

Bill died in January, and I wondered for just a brief moment if I should tell her.

“Why upset her?” a couple of friends said to me. With her mother and siblings, I was constantly re-traumatizing her every time she asked about them and I told her that they had died. At some point, it makes no sense to tell a mid- to late-stage Alzheimer’s patient about the death of a loved one.

But this time, the reason I kept the information from her was not to spare her. I kept the death of my father to myself because I thought it would make no difference to her. To her, he’s not gone. He simply never existed.

Thirty-eight years, a marriage, children, a house, love, pain, misery, drudgery, frustration, fear, anger, happiness, disappointment — all washed away.

Alzheimer’s.

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An Alzheimer’s Thanksgiving

The Sunday before Thanksgiving, the weekly concert at Hebrew Home was held in the library instead of in the large, open concert hall where it’s usually held. The closed-off quarters of the library made for a more focused, even more sacred, experience. That was a good thing, because they were featuring a serious pianist, and he was playing Chopin beautifully.

I arrived late, so I had to sneak in. I found my mom toward the back of the room, seated next to the other ladies from her unit, all of whom had been escorted there by an aide. There was no seat next to my mom, and no chair to be found in the entire room, but there was a small space between my mom and a woman in a wheelchair. I’m thin, and that space was just big enough for me, so I slid down and seated myself on the floor.

My mom looked down at me lovingly and caressed my hair, resting her hand on my shoulder. I reached up to hold her hand.

“Oh Bethy, you can’t see,” she said. It was true; I couldn’t see the piano, or the musician’s figure, or the movement of the keys. But I could hear the rich chords of the piano that filled the room, so I told her it didn’t matter. When I looked up, her beaming face brightened the room, and that was all I needed to see.

“You can’t see, Bethy,” she said again. “Why don’t you sit on my lap?” As if I were a young child. I paused a moment and shook my head. Then, sitting at her feet, I rested my head against her hand, almost on her lap, as if I were a young child.

In those moments, accompanied by a rich and evocative soundtrack, both my mom and I were transported back in time — I to my childhood, and she to another time in her life, maybe to her early years as a mother to me, maybe to some other period.

As long as the music played, Alzheimer’s played with her memory, with our memories. Instead of memory loss, it felt like memory gain, time travel to a place we could never have revisited without the disease.

On the surface, there are few things to be thankful for when it comes to Alzheimer’s. This was one of them.

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Birthday Card

“I have the best mother in the whole world,” read my mom. She was reading the card I had given her for her birthday.

She didn’t know it was her birthday — not the first time I told her, or the second, or even the third.

She had no idea how old she was; when I asked her, she guessed 19. She might have been kidding, but there’s at least a fifty-fifty chance that she meant it, and when I told her she’s 88, she was shocked.

“I’m an old woman!” she said. “I’m going to have to die soon,” she continued in a song-song voice that sounded as if she had no idea what those words really meant.

Whenever I visit, she knows me, and she’s always happy to see me. Most times, she even says, “This is my daughter, Beth.”

But the awareness doesn’t hold. Soon she can’t remember my name or is introducing me as her mom or is calling me, “sis.”

Once, she took the hand of a Hebrew Home staff member and kissed it, in the same sweet way she kisses my hand. I had always thought that little kiss meant she loved me in a special way, my being her daughter and all. But that day I decided it simply meant that she loved, and anybody could be the lucky recipient of that love. Sometimes, that lucky recipient was me.

The moment I gave her that birthday card was different, though.

“I have the best mother in the whole world?” she read. I nodded yes and told her to open the card.

The inside read: “That’s you, mom. I love you tons! Happy birthday!”

When she read the words, she started to cry.

“Why are you crying, Mom?” I asked, and held her close.

“Because I just love you so much,” she said, as if she’d remembered all the years of struggle in our relationship, when she felt she was anything but the best mother in the world.

“I love you, too, Mom,” I said.

I put the card on the end of the bed, and we spent the next few minutes opening her presents. Mel and Joan sent her two tops and a pair of pants; I gave her a zip-up sweater.

When she got up to go to the bathroom, she saw the card on the end of the bed.

“What’s this?” she asked, and then started to read.

“I have the best mother in the whole world,” she read aloud, then opened it up and read the inside.

“That’s so nice,” she said. “Is that from you?”

“Yes, Mom,” I said.

“Thank you,” she said. “Put that someplace safe. I don’t want to lose it.”

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Courage

Kenneth was recently moved to another unit, so I took my mom to visit him.

“Do you miss me? Do you know me? Are you okay? Do you like it here? Do they take you outside? Is the food good here? Do you still love me?”

She fired off one question after another, and he didn’t respond. He couldn’t seem to get the words out, and plus, he was refusing to look at her. He flashed me an angry, almost indignant, look when we walked in. Then, trapped in his wheelchair and unable to move, he looked away.

Maybe he had felt abandoned when he hadn’t seen my mom for five days. But I have no idea what was going on in his brain.

Waiting for answers that were never going to come, my mom started to cry.

He is getting worse. I’ve been noticing this for a long time now. In their early days together, he was charming and dapper. He held my mom’s hand as he walked her up and down the halls, talking continually.

Now he is what we mean when we say, “If I ever get that way, will you put me out of my misery?”

In May I read a story in the New York Times about a Cornell professor who planned to commit suicide after she learned she had Alzheimer’s. She didn’t want to be alive when she could no longer access the brilliant, witty, incisive mind that was central to her identity. She lived for five years after diagnosis, gradually losing her mind until she and her family chose a day for her to kill herself. Then she did it.

What a tremendously courageous act, I thought. Most people wouldn’t be able to go through with it.

But then I decided that no matter what you do, live with it or die (naturally or by your own hand), you’re always performing a courageous act with Alzheimer’s.

My mom would never kill herself to escape a future in which she would lose her identity. It’s not in her DNA to take that kind of control of her life, and it would conflict with her faith.

But how courageous is it for her to walk through each day, dropping pieces of herself on the linoleum floor never to find them again, and yet continue to go on?

She doesn’t know what’s happening, doesn’t know what she will be called to do from now until the day she dies. So maybe it’s not right to call her courageous.

Maybe, she’s just an unfortunate victim.

But I hate thinking of her that way. I prefer to tell myself that in a strange, maybe backward, kind of way, she is lucky.

Maybe life is large enough to encompass a radically shifting identity, or energetic enough to move forward when identity falls apart completely. Maybe life is bigger than who we think we are, the skills we nurture, the limits we set for ourselves, and even the relationships we cultivate.

Maybe in some way, in tiny increments, my mom gets to experience that largeness. And maybe there are moments of joy and wonder.

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