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| Family Tempo |

Mind You

Will I remember who I was when I no longer recognize myself?

I blink in the sunlight after the artificial light of the doctor’s office.

Of course that’s why I’m blinking. I’m not scared of doctors or diagnoses. I suspected this. It’s why I made the appointment in the first place.

Still, my hands are shaking. And my cheeks are wet.

I finally fish out my keys from my Mary Poppins bag. Ben’s name. Savta Simcha wasn’t even born then, okay? And in those days, Disney was kosher. But I like my bag. I like it big and able to fit a lot of things, even if it means I need to fumble for my keys. I always fumble for keys. It has nothing to do with — with anything.

Ben. Maybe it’s a brachah that he’s gone. I wouldn’t want him to need to deal with this.

Right, because I’d much rather the kids take this on.

I take a deep breath and turn the key in the ignition. What now? How much longer will I be able to handle work, kids, life? I swipe at my eyes.

I decide to stop off at the library. There’s too much to do — it’s Wednesday, Baruch and his family are coming for Shabbos and I have nothing in the house, but there’s always too much to do, isn’t there? I need to learn whatever I can about the journey I’m going to be taking.

 

June 2

Dear Diary,

No, I haven’t totally gone off the… But “Dear Diary” is written on the top of every page in this book, which is one reason I chose it — I’ll have to keep things short and simple.

What does it say about me that I’m taking this journaling idea from a book I read instead of from the Shaarei Yonah, who advises cheshbon hanefesh?

I was never good at journals. I’m only hoping that chronicling my illness will help me — and everyone else — look back and remember who I once was when I no longer recognize myself.

“Oh my gosh, what is that smell?”

“Oh, no! Did someone forget to close the freezer?”

“This is the car, Ma.” Raizy’s voice sounds weird. I hope everything’s okay with her. There was that boy who said no to her the other night, and even though she says she’s relieved, she wasn’t sure about him either, I know it hurts. If it doesn’t hurt her, it hurts me. But—

The car. Right. “My goodness! I don’t believe it. I went grocery shopping on my way home yesterday. Did I forget to unpack something?”

“You went grocery shopping?” Now her tone is accusing. That’s not like her. She must be in bad shape.

“What’s the matter?” But I know. We had sandwiches for supper last night because there was no food in the house. And it wasn’t the first time. With Ben gone, it’s hard to cook. I know I should, for Raizy. But her schedule is so erratic.

The other day I made steaks for supper. Just because, and also as consolation, but that night she had to work late and then went out with friends. I get it. I’m too old for her. Even though I’m lonely now, she needs to live.

“I’m sorry, Raizy. I had an important appointment yesterday, and I forgot all about the groceries.”

She doesn’t believe me, I can tell. She perfected that one-eyebrow arching when she was still in high school. But I did go out yesterday.

“We’d better air out your car,” Raizy says after we’ve made the last trip in and put everything away that could be saved. She pulls out her keys.

“Oh. I was about to start a soup with these vegetables. If we cut away the soft parts, they’ll be fine.”

“Aren’t we on our way to the Klein vort?”

Right. Oh goodness. I follow my daughter to the car and I wonder: How much of it was real — this impulsivity — and how much psychological? And what do I do to make sure this doesn’t happen again?

 

“Reva, did you take care of the Freund account?”

For a minute, I panic. But then I remember my lists. I purchased a Mountain Planner on Amazon, much to Raizy’s wide-eyed amazement, and in addition to that, I have a special work planner as well as my computer and Outlook calendar.

Freund, Freund, Freund. I spend ten minutes looking through every note I’ve ever made before admitting that they were nowhere.

“What’d they order again?”

“Orchids.”

Orchids, orchids. “Orchids?” I know the name, but suddenly after 30 years in this office, I can’t place the flower. “Are you sure? When’s the wedding? I’m blanking out.”

This was not good. Forget that I was hired because I’ve always remembered every flower ordered by every client, we could not let a kallah go to her wedding without flowers, and if we do, and it’s my fault, I’m resigning right now. Which I know would be terrible. Sometimes I think the structure of my job is the only thing that keeps me from tumbling down.

“Tomorrow,” Blumy says. “I’m sure it’s all ready, I just got a call asking about orchids and I wanted to know who you ended up sourcing with. I thought I remembered you speaking to Jansen, but maybe I’m losing my mind.”

“You’re not losing your mind,” I mutter. “I am.”

But tomorrow was a clue. It means they’d have placed the order a month ago at least, when I was still relying on my brain. I check the computer. “Freund? Are you sure? I have Fried for tomorrow.” Were things already this bad back then?

“Oh gosh, you’re right, I’m so sorry. Freund recommended the Frieds come to us. I’m sorry, Reva. My bad.”

I just smile, insanely happy to be able to hold on to my sanity. For today, at least. See? Other people also make mistakes and forget things.

 

July 21

Dear Diary,

I’m finding it hard to maintain this. Most days I feel good, and I hate journaling. Some days I simply forget. But I know it’s good to have everything written down so I don’t miss appointments or forget who’s coming for Shabbos and what we have in the freezer.

So how am I doing? I’m reading a lot and taking a bit from each book. I’m trying to be more organized with lists and reminders and all my calendars. Mountain Planner should be paying me to advertise for them.

What else? In one book, Gerda Saunders takes pictures of all her outfits so she doesn’t embarrass herself when she leaves the house. I’m not there. Besides, I have Raizy to keep me in line. But I wrote the suggestion a few months ahead in my planner. Just in case.

 

“Mommy?”

I hold up my hand in front of the mixer. If anyone interrupts me while I make challah, I’ll forget something. I’ve always been like this, but it’s only recently that I print out the recipe and cross things out as I go along.

“Should I come back?”

I cross out 1 c. sugar and look up. “It’s okay. The yeast needs a few minutes to proof anyway.”

Raizy nods, but she looks unsure. “I’ve got a date scheduled for tomorrow night.”

“That’s great, Raiz! What’s his name?”

“Meir Singer. Yisrael looked into him for me.” She still sounds hesitant. Why?

“It’s just that he can ask more questions about each guy, get a feel for them in their language, more than you can.”

“Right. He always vetted names for us, even before Abba died.”

“So it’s okay?”

“What’s okay?” I’ve thrown her, I see. But why?

I look into the mixer and see it’s time to add oil. “Tomorrow night’s great, Raizy. I’m going to daven extra hard when I make a brachah on the challah.” I give her my brightest smile.

My daughter just sighs and leaves the kitchen.

It’s only later, as I’m braiding the dough, that it registers. We’ve never discussed the boy. Raizy’s been taking care of her shidduchim for a while — she’s 27 years old, and there was all that time when I was caring for Ben, but we always discussed the names that came up, and I always called the references. Now she’s going out tomorrow night, and I don’t know anything about him.

She didn’t even tell me she was looking into anything.

 

“Hi Nechamy, how are things? Did Yaakov start walking yet?”

“He walked across the whole room yesterday, Ma! You can’t imagine how excited the other kids were.”

“Am I getting videos? A picture at least?”

“I would have taken out the camera, but it was so unexpected, and—”

“Nechamy, before I forget. The Mermelsteins are going to Israel next week and they said they have some room. What can I get you?”

“Oh, thanks so much, Mommy. Rivky needs a new coat desperately, and maybe you can get some pajamas for Bracha? Everything I have is worn out.”

“Great, give me a minute. I want to write everything down.”

I take out my planner and write it down — sizes, everything. I hope the Mermelsteins have room for it all.

“Nothing for Chaim’s bar mitzvah?”

The conversation turns to bar mitzvah preparations, and when I’ll be coming in, and which of the siblings will manage the trip. Before I know it, an hour has passed.

“Ma, I need to go. Chaim’s walking in any second, and I like to be available when he gets home. It’s so late, and I feel so bad for him.”

“Sure, Nechamy, just one thing. The Mermerlsteins are going to Israel next week. They have room to take stuff, so let me know what I can get you.”

“Uh, Mommy? We just went over that.”

We did? Did I write it down? I want to ask, but I’m afraid of the answer.

“You’re right, sorry, Nechamy. Go to Chaim. Give him a kiss from Bubby.”

We hang up, and I quickly make a note so I won’t forget: Mermelsteins going to Israel. Get list from Nechamy.

 

I stop walking so suddenly that the woman behind me bumps into me. Where am I? And who are all these people?

I look around. Stores. Lots of stores. People holding bags, music piped in from the ceiling. I look down and see that I’m holding bags from Children’s Place, Old Navy, and H&M. But where am I? Why am I here?

People are coming from behind, muttering. I’m causing traffic. I spy a bench and go to sit while I figure this out. The clock says 1:00.

I pull out clothing from the bags I’m holding. A few stretchies, a coat, some socks.

Suddenly, I’m exhausted. I hate this disoriented feeling. I review what I know — a technique from some book I read recently. My name is Reva Hauer. I’m 71 years old — 71? How can I be 71?

I’m jarred by a phone ringing. My cell phone. I fish it out from my bag.

“Hello?”

“Ma? Are you okay? Where are you?”

I look around. “I’m at the mall, Raizy, what’s the matter?”

“The mall?!”

“What’s the matter? Is everything okay? I told you I was going to the mall.” I look down at the bags I’m holding. “I bought a few things for Nechamy. The Mermerlsteins are going to Israel next week, and they said they have room.”

“But Mommy! You told me you were done when we spoke at a quarter to one! You said you’d be home by one thirty. It’s almost three! I must’ve called 100 times! I almost called the police, I was so nervous.”

“Something came up, Raiz. Don’t worry about me. I’m on my way home now. I’ll see you soon.”

Sep 14

Dear Diary,

According to Deena, white flour is the root of all evil. I was telling her about our new meal planning, how Raizy and I have been making menus at the beginning of the week, then splitting cooking suppers. It’s been working nicely.

I told Deena that I’m exercising and cutting back on sugar, and she insists there’s no point in going off sugar if I’m still eating white flour. Next she’ll have me on sourdough. I’ve been reading about that… somewhere.

Do I know? Everything is so vague, there’s no cure, no medical consensus. But the Rambam says to exercise, so I’ll start walking. Tomorrow.

 

Sep 25

Dear Diary,

“We want autonomy for ourselves and safety for those we love.” —Atul Gawande, Being Mortal

I can’t get the line out of my head. I wonder at what point I’ll lose my autonomy, at what point my children will feel responsible to keep me safe. When will they decide I can no longer drive, or that I need… care? Will I have any say in the matter?

It was different with Ben. He simply had no strength. A caregiver wasn’t a question when he needed help getting up, going to the bathroom.

That was cancer. This is different.

 

“That’s a beautiful dress, Raizy. I don’t remember it. Is it new?”

Raizy smiles, but I know a fake when I see it. Did I not raise seven children?

“Where are you off to tonight? Wedding?” I don’t remember that any of her friends are getting married, but there’s no date written in my planner. I know, I just checked it to see what we’d planned for supper.

“I have a date tonight, remember?” Her voice is gentle.

“A date! Right!” I want to ask if she’s still seeing — that person, but I don’t dare. Instead I get up from where I’m resting on the recliner. I’m not fit to be seen. “Do you want me to get dressed and meet him, or are you okay on your own?”

“I’m fine, Mommy. You can stay here and relax.”

So she’s on date number three, at least. I hope this works out, she deserves to be happy, my girl. I give her a quick squeeze, then reach for my Tehillim.

“Where’d you get that necklace? My mother has one just like that!”

“What?”

“Your necklace, dear. My mother has that exact necklace. She got it custom made, so I can’t imagine how you have the same thing as her.”

“Mommy?”

“I remember when she got it. We’d gotten a big yerushah, and Papa was so happy that he could buy her an expensive gift. We were always so poor, and my mother always refused to do anything for herself until we were all taken care of. We never were, you know. So she got nothing.

“When this money came, Papa said he wouldn’t touch a penny until she bought herself a piece of jewelry to make up for all those years. She has good taste, doesn’t she? But it was custom, how can you have the same?”

The woman is staring at me.

“I told you, Chaya Leah.” The voice is familiar, but I can’t place it. I look up to see a young woman carrying two teas. She places one in front of me, and sits on the opposite sofa.

“But, Raizy, you didn’t say this!”

The younger woman — Raizy? — sighs.

“This is… this…”

“It’s not always like this, Chaya Leah. She has better days and worse days. Moments, I should say.”

“But, Raizy, it… it takes a moment, that’s all! You can’t wait until she leaves the stove on and burns the house down! I can’t believe it! She watched my kids yesterday!”

“I told you. Weeks ago. It wasn’t less progressive then; you just hadn’t seen it.”

“Well, I do now. We need to do something! Tell everyone so they know to be careful. Hire help, maybe? Should she still be driving? We shouldn’t be coming here for Shabbos anymore! That doesn’t make sense. We can host.”

“That’s all you care about? Stripping Mommy of her essence? Maybe she needs a doctor. Maybe we should be doing more research into how we can halt it. Not ‘She watched my kids! Take away her license!’ ” Raizy mimics her sister.

“Girls!” I say sharply. “I thought when you grew up you’d stop talking to each other in that tone. Have I raised you so poorly?”

Chaya Leah gives a little jump, and Raizy looks remorseful.

“What are you arguing about anyway?” I lost the thread for a minute. It’s been happening more frequently these days.

“Nothing.” Is that triumph in Chaya Leah’s tone?

“Listen to what happened at work yesterday,” Raizy says.

She’s changing the subject. They’re adults, I suppose. They don’t need to tell me everything anymore. I look at Raizy carefully. She’s a beautiful girl, and speaks so well. Maybe she was telling Chaya Leah about that new boy of hers, I forgot his name. They’ve been dating for a while, she’s going for… not so fast, this time around, she said.

Now I’ve lost the thread again. Chaya Leah’s laughing and I’m sitting here sipping tea. This is not good. Focus, Reva.

But — what’s that necklace? How did this nice young woman come to have Mama’s necklace? I lean in to see it better. Yes! It is Mama’s! It was custom made and I would recognize it anywhere.

I look up to see who’s wearing it. Chaya Leah! Well, she is Mama’s favorite — the first child named for Bubby — but still, Mama doesn’t let people touch it. It’s her only piece of jewelry, a gift from Papa after they received that yerushah!

“Chaya Leah!” I try to keep my voice low, but I know I’m screeching. I’m panicking in case Mama should hear. “Does Bubby know you’re wearing her necklace? You’d better put it back in her room. What are you doing with it? Don’t you know better than to touch her things?”

 

Nov 6

Dear Diary,

“It occurred to me that at one point it was like I had two diseases — one was Alzheimer’s, and the other was knowing I had Alzheimer’s.” —Terry Pratchett

Well, whoever Terry Pratchett is, that’s a fitting… for today’s entry.

She was very sweet — her. Didn’t want to accept. But I saw her horror when I told her why I missed work yesterday. I got lost getting to the office, and by the time I was back to myself, it was just too hard. Then she was concerned, told me to come in when I could, but I know it’s not fair. You can’t run a business like that.

I have no idea how I’ll fill my days. Hopefully Raizy will get engaged to this boy, and we can make a wedding. All the preparation will allow me to hold on to myself a little longer. I hope.

For now, I have one goal: to let the kids have a normal life for as long as they can.

 

I walk into the office and hang up my coat. Feels like I haven’t been in here in ages. So long that I don’t recognize the young girl at the front desk.

“Can I help you?” she asks.

“I know I’m late. Vacation from my vacation — don’t ask.”

Something about the way she looks at me gives me pause. Is my wig on straight? Matching shoes on my feet? When I was a kid, I used to dream that I’d gone to school in my pajamas. That’s how I feel now.

“Reva! Good to see you!” I look up at Blumy’s voice. She sounds surprised. I smile and head for my desk. So much to do.

But my desk is… empty?

I turn around and see that Blumy has followed me here.

“Came to visit?” she asks. Her tone is too bright, and it upsets me. Visit? As if I’ve ever treated this job casually. Even during Ben’s illness, I pulled through and made sure my job was done.

“Where’s my stuff?” I finally manage.

“Sit down, Reva. Let me make you a coffee. I’ll be back in a minute.”

It takes her too long to make the coffee, and I’m tempted to get up and do it myself. I’m the one who bought the machine, for goodness’ sake. But I’m too upset to face her.

Suddenly, Raizy is in the room.

“Mommy, is everything okay?”

I’m overwhelmed at seeing her, and feel tears in my eyes. I don’t cry.

“Come, Mommy.” She takes my arm and leads me out of the room. As I pick up my coat from the coatroom, I hear her talking to Blumy.

“Thanks so much, Mrs. Schiffman. I really appreciate it.”

“I’m so, so sorry. I was just thrown. I didn’t know what to do.”

I put my hand in my sleeve. I know I’m not supposed to hear the conversation, but they’re not whispering. I only wish the girl at the front desk wouldn’t have to hear it, too.

“I’m so grateful you called me. I was confused at first, because… to be honest, she never told us she stopped working. I wasn’t even sure she chapped what was going on, and even though I… we kind of figured it out, we wanted her to… I don’t know, maintain herself, her dignity, as long as possible. But if she told you, that’s a whole different story.”

“Oy, Raizy, I feel terrible. I wish I wasn’t—”

“No reason to feel terrible. Better you than someone finding her in the middle of the night. Thank you.”

It’s too much. I march into Blumy’s office. “Raizy? I’m ready to go.”

Outside, I sit in the passenger seat of Raizy’s car. I’ll get mine some other time. I’m too tired now, and too humiliated. I want to go home.

Raizy starts the car and pulls out into the street. I hear her take a deep breath.

“Mommy? We need to talk.”

 

March 12

Dear Diary,

“To care for those who once cared for us is one of the highest honors.” —Tia Walker, The Inspired Caregiver

We love you, Mommy.

Love, Raizy

(Originally featured in Family First, Issue 717)

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  1. Avatar
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    I was very moved by Adina Lover’s story “Mind You,” about a woman, Reva, who has been diagnosed with Alzheimer’s, and thought it was an excellent piece of writing. I was so surprised, therefore, to open up the Family First and find a negative letter about it. The author of the letter contends that the story should not have been published since it has no purpose, because one could not prepare for such an event, may it not happen to any of us.
    While that may be true, I feel the letter writer is leaving out an important point — which is that a story like “Mind You” helps those who are tasked with the challenging job of caring for individuals with memory impairment.
    When I was in college, I worked part-time one semester at an assisted living home. I was asked to spend most of my time with one resident in particular who was having trouble adapting to her surroundings as her memory was failing. This resident and I built up a nice rapport and warm relationship, as she told me stories about her childhood and appreciated that I was frum.
    Then, one day, I was asked to accompany her to a doctor’s appointment. Unfortunately, as we entered the doctor’s office, she forgot who I was. She became combative and started screaming at me to leave. She told the office staff that she didn’t know who I was and that they should call the police. They wisely called her son, who came to take over and apologized to me profusely. I told him there was no need to apologize, and I felt terrible for him that he had to see his mother like that.
    I’m sharing this because the anecdote in “Mind You” where Reva reprimanded her daughter for wearing her late bubby’s jewelry brought this incident to mind. It’s crucial that anybody caring for somebody with memory impairment understands that the person is genuinely confused at that moment. They honestly think you are doing something wrong to them. Adina Lover’s writing brought that out beautifully. It is so difficult, when one is in a situation like that as a caregiver, to be able to take a deep breath and realize that the yelling and lashing out has nothing at all to do with you. It’s difficult, but it’s necessary.


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    I have never written into a magazine before, but when I read “Mind You” by Adina Lover, I knew this would be my first time. The way the writer took the reader on a journey together with the woman diagnosed with Alzheimer’s was awe-inspiring and eye-opening. I genuinely felt that I was losing my wits and ability to trust myself.
    The article particularly hit home for me. My great-grandmother a”h, too, had a swift decline from when she received the diagnosis. It was excruciating to watch this proud, well dressed woman consumed by this cruel, confusing monster known as dementia. But what was yet more painful to witness was when she had clear moments, and was embarrassed by her confusion. When we called, she stopped asking after the children by name and started saying “How is your eldest son?” out of fear of getting it wrong.
    I am very grateful to Family First for featuring the other perspective, giving us a glimpse into the minds of our suffering loved ones.