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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Music

My mom is sad. I arrive to find her lying on her bed, weeping.

“I just want to die,” she says between sobs. “What is happening to me?”

Kenneth is almost completely nonfunctional. He’s no real companion for her anymore. I haven’t heard him utter a word in three weeks. He sits in a wheelchair facing the television, and she sits next to him.

“Who’s Kenneth?” she asks, after I’ve whisked her away for a walk in the sculpture garden. When she is away from him, she doesn’t seem to miss him. But when she is with him, next to him, I imagine she misses him acutely.

“I have no home,” she says, like she did in her early days at the facility. “Is this where I live?” She doesn’t want me to leave her there alone.

What can I do?

I turn to the one thing that seems to comfort her, distract her, give her some sense of home — music.

I learned the power of music after watching the documentary, “Alive Inside,” about one man working to get personal iPods to dementia patients in nursing homes around the country. Totally mute patients start to talk and come alive when he puts headphones on them. Sad and confused patients become happy. It’s astounding.

But the thing is, it’s not just any music that is likely to bring a dementia patient to life again.

It’s their music — the music that meant something to them when they were younger, that was a part of their everyday lives and highlighted their milestones. In effect, it’s the soundtrack of their lives.

I saw that movie in January, and one day soon after, I sat with my mom to learn the songs on her life’s soundtrack.

“Mom, what are your favorite songs?” I asked.

“Huh?” she responded. “Oh, I don’t know.”

Silly me. Amyloid proteins are taking over her brain. There’s obviously no room for song titles to be hanging around, just waiting to be retrieved.

My mom was born in 1927. Using my iPhone, I started googling popular songs starting in the late 1930s.

“How about, ‘I love you for sentimental reasons?'”

“What does it sound like?” she asked.

And so I started singing. (YouTube would have worked better but for some reason it didn’t occur to me.)

“Oh, I know that one,” she said.

“Do you like it?” I asked.

“Do you like it?” she responded. “I’m not the only one who matters here.”

Hmmmm. In trying to be accommodating, my mom can be so difficult.

Still, we managed to go through a hundred songs, maybe two hundred. I ended up with a list of twenty. I bought the songs, and then I added several sad Englebert Humperdinck tunes she used to listen to on Sunday afternoons in the late 70s, along with any song she seemed to recognize and enjoy from the Hebrew Home’s weekly concerts featuring local musicians. Gradually, the list has been growing.

I put her playlist on my iPod, which I faithfully carry with me. When my mom is sad, I take it out and we listen together, laying on her bed, one earbud in her ear, the other in mine.

She starts to hum, recognizing each song. And sometimes she talks, seeming more connected than she has in a while. I think she feels better.

Now I just need to get her a personal iPod that she can use when I’m not there, that the staff can keep for her and help her to turn on.

That kind of seemingly minor, logistical stuff can be so hard to set up.

Wish me luck.

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For Mom, what once was

As my mom moves ahead with Alzheimer’s, I find myself missing some of the earlier stages, when she still had some sense of who she was and some memory of her past life.

Many of those days were incredibly painful, more painful than now. But that’s the thing about looking back. You can do it the way they filmed Doris Day movies — with Vaseline on the lenses softening all the edges. You might still see the pain, but it’s hazy and gauzy and much less hurtful.

She used to say:
“What’s today’s date?”
“Whose birthday is coming up?”
“I married HIM? Is that why I’m using his name?”
“I think what I did today at school was probably all wrong.”
“How come your father doesn’t call me?”
“What do you mean all of my brothers and sisters have died?”

Now it’s:
“I’ve got to find out if I have a bed for tonight!”
“I’ve never been to this place before. It’s totally new.”
“I wanted to call you, but I didn’t know how. I kept thinking, what do I put on this paper to call you?”

It’s all about the moment these days, and she’s confused over the most concrete things, like trying to make a phone call with a piece of paper rather than a telephone.

Her life story is a big blank to her.

But I’m realizing that’s not so bad. I might miss her, but she doesn’t. Much of her pain is gone. Not just softened, but gone.

And yet, she is not gone. Her staying power is amazing, especially when compared to Kenneth’s. In the span of months, he is a ghost.

A man who was once roaming, walking, active and always trying to take control has shrunken, become immobilized.

What was once:
“Let me tell you, this is going to be absolutely beneficial to the problem, yes, and what do you think? We’re going to take the straddle position on this one, and the company will be doing much better …”

Has become:
“No.”

A man confined to a wheelchair, staring down at a table, or burying his head in his arms.

A gradual, and then sudden erasure of a life.

My mom is lucky for so many reasons.

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What My Mom’s Alzheimer’s Disease is Teaching Me about Life

Whenever I tell people that my mom has Alzheimer’s, they furrow their brows and tell me how sorry they are.

“But my mom is a happy Alzheimer’s patient,” I say, and their foreheads smooth out, the corners of their mouths turn upwards, and sometimes they even smile.

Most people know what it means to be a happy Alzheimer’s patient. It means my mom is spared the experience of losing her mind while being in pain about it. It means she’s not aggressive, or violent, or nasty, which means everyone who cares for her is spared the experience of managing a difficult patient.

I see so much pain among the Alzheimer’s patients at the Hebrew Home; some people scream and moan constantly, as if every moment is excruciating, as if being alive is torture.

My mom and I are very lucky.

Not only is my mom’s experience with this disease more positive than I could have ever hoped it would be (which is not to say I am happy she got it, or even that I consider it a gift, because I don’t). But also, watching it unfold is teaching me so many things about life. Here are a few:

1. Smiling and being nice to people have a far greater impact than I ever knew. Smiling makes everyone’s life better, from the smiler to those being smiled upon.

2. Forgetting is not always a bad thing, especially when it’s resentment and anger you’re forgetting.

3. Living in the moment can be deeply gratifying. My mom doesn’t remember her grandchildren, but she’s loving the cookie she’s eating.

4. Losing your memory doesn’t cut you off from all of life. Some of life’s richest experiences are enjoyed through the senses, and the mind can actually get in the way.

5. Inhibitions have their place, but not when it comes to expressing love. Before Alzheimer’s, my mom was shy and often felt alone. Now she shows love every day, and she’s rewarded for it.

6. Loss is not always tragic (or not only tragic). Sometimes it opens doors to new ways of being, and to new relationships.

7. There is all kinds of happiness to be found in this world, some of it in the places where you’d least expect it.

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A Child

When I arrive for my weekly visit at the Hebrew Home, I can almost sneak up on my mom in the dining room because her gaze is transfixed on a baby. She is leaning over to caress the child, who is held lovingly by a woman at a table.

“Look honey,” my mom says when she sees me approaching. “Look at the baby!”

I see the child from behind. It is a very young infant, the innocent face staring up at me, and I feel a tingle in my spine.

And then I get closer, and the spell is broken. The baby is a doll.

“She is so cute,” my mom says. “She’s beautiful.” She accompanies each sentence with a caress of the child’s face, and the woman holding the child beams.

“You know, every now and then,” my mom says, “she almost doesn’t look real.”

“Oh, you can bet she’s real,” says the woman. “I will never forget how much pain it caused me to have her.”

“She’s beautiful,” my mom says again. “Are you the grandmother?”

“Oh, no, I’m the mother,” says the woman, who is probably as old as my mom or older.

“Well, she’s beautiful,” my mom says again, and I agree.

As I lead my mom out of the dining room, she can’t stop talking about the baby.

“She’s beautiful, isn’t she? But sometimes she doesn’t look real.”

I hesitate for a moment. I’ve learned it’s best to affirm my mom’s perceptions of reality. But this time, those perceptions are competing with each other.

“It’s a doll,” I say.

“What?! Does she know?” My mom has a horrified look on her face.

“No. She doesn’t know,” I say.

“But what happens when she finds out?”

“I don’t think she will.”

“But … but,” she starts, searching for a way to understand this. “Oh, that’s terrible.”

“It’s not so bad,” I say. “It’s really okay.”

“Oh, I hope that doesn’t happen to me,” she says.

“Me too,” I think. “But I’m afraid you might be on your way.”

I don’t say this out loud.

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“What’s My Name?”

“This is my daughter,” my mom says to everyone we meet, as we walk the halls of the Hebrew Home. “Why am I so short and she’s so tall? She should be the mother,” she says, pointing to me, and then she laughs and I smile.

She’s still doing so well identifying me, at least most of the time. Sometimes, she actually does think I’m her mother, and other times, her sister. Usually, I go with the flow, because there is often no good reason to correct her. I will only do it if I sense the correction will somehow enhance the moment, because with my mom, all that matters is the moment.

But sometimes I wonder, “Does she really remember who I am?” And so I will start with the basics, and I will ask her, “Mom, what’s my name?”

I know I shouldn’t do this. It doesn’t seem to upset her, but it feels like I’m giving her a test, and it can’t be right to do that to an 87-year-old woman with dementia. Still, sometimes, I just need to know.

“Mom, what’s my name?”

She hesitates.

“Elizabeth,” she says, usually, and looks at me to make sure the answer is correct. “Sure, I remember.” Strange, because although this is certainly the name she gave me 45 years ago, she’s always called me, “Beth.”

It makes me wonder if lying somewhere deep in her brain, where the amyloid plaques have not yet settled, is the memory of the day she named me, or of the dreams she had for the baby who grew inside her.

There are times when she doesn’t remember my name, though.

“What’s your daughter’s name?” asked an aide named Christina one day about a month ago. My mom couldn’t come up with it.

“You know my name, Mom,” I said, and then I kissed her on the head.

“Beth,” my mom said. I nodded and smiled. (Beth! Not even Elizabeth!)

“Now you have to remember that,” said Christina, smiling. “You always forget after she leaves, when she’s not here to kiss you on the head.”

So Alzheimer’s hasn’t won yet. Not when a kiss on the head can still help her remember.

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