niceolelevy

A/N — This isn’t about writing. This is about what was going on the past two years while I kept writing — and ultimately, I guess, how words help us writers process our grief in ways nothing else ever will.

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The Story of Mom

By Niceole R. Levy – a daughter

I’m in the bathroom, doing my hair. And like she often does, Mom wanders back to tell me something. This time, she has a hat in her hands. A black Stetson she wanted for years, which I bought her six months ago for Mother’s Day. She holds it up, smiling so wide.

“Did you see what my baby got me?”

I laugh. She’s famous for her weird mix ups of names and people, so I laugh and say, “You mean what I got you?”

The look on her face makes me want to cry, but I can’t. I have to keep smiling and hold it together, because in that moment, I can tell my mother is terrified. So as gently as I can, without any fear or anger in my voice, I say, “Mom. Do you know who I am right now?”

“No.”

And just like that, the world shifts on its axis.

The bigger world, of course, had shifted months earlier – when Barack Obama packed up and left the White House and the new resident ran through worrisome to upsetting to terrifying in less than a year. And in the year since that fateful day, the world has felt like a dumpster fire in a lot of ways – and I’ve tried, really hard, to say engaged with it all. To fight. To care. To encourage people doing more than that in any way I can.

But I’m not going to lie. The part of the world that holds most of my attention is the human being who gave me life, raised me, and is – more quickly than I can handle – disappearing.

Looking back now, we (my brother and I) can see that it was happening for years before. Things that didn’t make sense except that, on her best day, my mother can be described as difficult, so we often just chalked the weird up to her being her.

Like when she stopped speaking to me for two weeks, then yelled at me about owing her $40,000 (I didn’t) that she loaned to me for college (she didn’t), and how dare I buy my first home without even offering to pay her back.

I told her I’d write her a check, and that stopped her ranting. She didn’t want my money. It was the principle. Which I reminded her wasn’t a real thing because she never made me that loan and had she, I would’ve paid it back. She got over it. We moved on.

Like her making up stories about how close she was to her estranged sister before my aunt died. Which I knew was not true because I had gone online, at my mother’s request, to try to find my aunt so she could reach out after years of them not speaking to each other.

By the time we were able to locate some of my cousins, it turned out my aunt had passed away. But in my mother’s head, she and my aunt were exchanging weekly phone calls and were so close before my aunt died. And when I challenged that notion, Mom got so angry she almost made me leave her house.

Like the hundred other things we dismissed as “Mom being Mom” – pretending my father wasn’t an alcoholic, making up interactions with people, ranting about politics in a way that seemed unreasonable at best, obsessing about money, imagining conspiracies everywhere she looked. And on. And on. And on. And… well, you get the idea.

I took my mother to her family doctor in the hopes of getting some help. What I found out was that she had been skipping doctor appointments for at least a year. That she was not taking her medications. And that, as was evident from looking at her, she had lost 40 pounds. She kept saying it was because she was exercising, but it was clear after being around her for several days the real issue was – Mom was just forgetting to eat.

This was the beginning of the next phase of our lives as a family – the phase where we beg people for help and don’t get it.

I involved my older brother immediately – sending him photos of her, updating him on her condition, logging unpaid bills we needed to take care of. Meanwhile, her doctor refused to give her situation more of a name beyond “likely dementia.” She wanted a neurologist to diagnose my mother. She needed blood work to figure out if my mom was taking her meds or not. She needed follow-up visits.

So I planned multiple weekend trips home to take my mom to these appointments. Because that’s what I do. I’m the kid who stayed relatively close and, for at least 13 years, has been the center of her universe. Mother’s Day, her birthday, some portion of the holidays – she got them all, along with some random visits just to say hi or do some errands or housework for her that needed doing.

It seemed manageable on some level. A nurse was assigned by the hospital to coordinate my mom’s visits and help get her to the appointments if I couldn’t be there. Our neighbor – a godsend of a woman who likes my mom – kept an eye on her and let me know if a situation was extremely worrisome. My oldest friend, who lives in town, volunteered for drop-in visits and helped keep groceries in the house because even though Mom would tell you she was driving to the store and to church – her car hadn’t left the driveway in months.

Then, Mom took me off her medical permissions with the doctor.

To say this ripped my heart out is an understatement. It felt mean and angry. It felt purposeful. But it was, I realized later, a factor of the check-in nurse asking if the information on file was still current and some made up story in my mom’s head casting me as her villain who kept making her go to doctors. So she took me off and the doctor and nurse were no longer able to speak to me.

I was powerless beyond asking people to drop in and help her.

My brother took over, growing as frustrated as me by the day because the system is not built to help you get a sick elderly parent declared incompetent. The system is there to protect the parent – and I get it. There are shitty people in the world who want to take advantage of old people who are losing their memories. But that isn’t us – and no one seems to care.

And that’s when the next phase of this story began for me. Because that 13 years of being the center of Mom’s world – it came back to bite me on the ass. Because who else was there for her to blame? To be angry with? To make up stories about – for stealing her money, for taking things out of her house, for telling people she was crazy, etc.?

Who was there to hate besides me?

I understand that the woman who says those things about me, who feels those things, is not my mother. She’s the person with a damaged brain who lives in my mother’s body. But they come out of my Mom’s mouth in my Mom’s voice. They still hurt.

But nothing was worse – nothing at all – than having to pick up the phone and call Adult Protective Services on my own mother because I was that desperate to get some kind of legal intervention to keep her safe.

It turned out to be just another thing for her to hate me for. They don’t tell you, of course, who called in the report, but my Mom’s sick not stupid – she knew. And she railed about me to our neighbor. It also did zero to help us because Mom isn’t walking around with open sores and we kept enough food in the house that the social worker decided she was “fine for now.”

Because my mother is a child of her generation and buys into the whole patriarchy mentality of “men run the family,” she let my brother take her to the neurologist. Who said her “likely dementia” was really Alzheimer’s, and my mother couldn’t live alone anymore.

Duh! That part we knew.

Now we just needed someone to help us make sure she wasn’t living alone anymore.

I wish someone had told us, “Good luck with that.” Because it feels like luck is the only thing that’s going to help us. We’re still in a never-ending circle of doctors, a lawyer, and a system that keeps telling us, “No, you need to go to this place, not that one.” We’re still struggling with the shifting sands of my mother’s memory and the rage her condition triggers. Some days, she adores us. Some days, she hates us so deeply that she locks herself away in her room and won’t come out. Some days, there are glimpses of the woman who raised us. But mostly there is just the steep, long decline of someone deeply loved who can no longer understand what love is.

The day my phone rang with news that my father had died suddenly from a massive heart attack, my soul shattered so completely – so brutally – that I really thought, “nothing in the world could ever be worse than this.” It was so unfair. The suddenness. Not getting to say good-bye. Being so far away. Needing five more minutes with him and knowing I would never get it.

I was certain it was the worst thing that would ever happen to me.

I was wrong. So sadly and dreadfully wrong. Because this is worse. Watching my Mom lack comprehension of how sick she is, lash out at us for trying to keep her safe, and listening to this smart, funny woman turn into a confused old lady who speaks in loops and twisted circles of words and memory and made-up stories, knowing there is ultimately nothing we can do to save her…

This is worse.

________________

She loves me today.

This summer, we managed to get Mom on a plane to “visit” family on the east coast. We, of course, knew the visit was really a permanent move. It wasn’t the first option I wanted to choose, but it was the one that we had to settle on. I wanted her in a care facility close to me, but I’m alone in the city, sometimes working 12-hour days. My brother and his wife have a house where Mom can have her own room and bathroom and that’s large enough to accommodate having a care giver, because that time isn’t far off. The time when she can’t live with any of us is probably bearing down on us like a semi-truck. But we’re trying to ignore the lights in the rear-view mirror.

Mom blames me for the entire move, of course. She’s ranted more than once to the family about how I interfered with her doctors and told people she was nuts and how dare we all gang up on her and make her do what we want her to do just because Niceole said so.

This week, my brother and his wife had to travel, so I’m here with my mom. I took a freelance writing assignment so I’d have work to keep me busy just in case she refused to speak to me the entire week. (I’m on hiatus from the TV show I work on, which is the only reason I could come here at all). And I’ve been able to cook for her and visit with her and still get all my work done even though, to my great surprise and relief, she’s seemed mostly happy to see me.

I mean, the first ten minutes were her lecturing me about how I am the worst daughter who ever lived for taking away her choices and forcing her to do what I say. But then I made her baked apple French toast and gave her a new nightgown and bought a cute Halloween outfit for her baby doll (more on that in a minute), and then today… today she just was happy to have me. I spent the better part of the day just listening to her talk – weaving stories that don’t make a lot of sense but amuse her – so even when they break my heart, I listen and “mm-hmm” and nod and laugh because she needs me to.

And I didn’t say anything mean or dismissive about her baby because that’s become counterproductive – so when she went and put on the new outfit I brought for the doll, even though it was too big, it felt like she was trying to give me something. And I’m taking it – a win is a win in this situation, however small it might be.

She started carrying the doll around for comfort several years ago. We thought it was weird, but she kept saying, “I know it’s not real. It just makes me feel better.” So okay… I refused to hold it or kiss it or talk to it, but I tried not to be judgy when she did all of the above.

Then it got worse. The story changed. She’d owned this doll for a while now – I remember when she ordered it. She owns several – has a regular collection of them. But then one day she made up this story about having the doll specially made. That she sent a picture of my dead aunt as a baby to the doll company, and they made the doll custom. That it cost a thousand dollars. And she started calling the doll by my dead aunt’s name.

Warning bells all over. But also – Mom is just kind of nuts. This is a woman who once threatened to hit me with a cast iron skillet because she didn’t like how I talked to her. So, you know, volatile and kind of wacky. I was worried but tried not to overreact. She was still taking good care of herself. Paying her bills. Going to church. So it seemed fine. Not worth fighting over.

Between Mother’s Day and November 13^th of last year (the second date is her birthday, so home for a visit again) – everything changed. My mom stopped going to church. Or to the store. Stopped driving altogether. Stopped paying her bills. She forgot how her cell phone worked and stopped answering it. She would prep food to cook it then forget about it and let it go bad. And after years of constantly talking about all the cleaning she had to do in her house, she stopped doing any – and the clean home I’d grown up in turned into a trash dump.

And that damn doll became a symbol of how much my Mom had changed.

The first time she insisted on taking it out in public, I thought I would crawl into a hole and die. I mean… embarrassing as hell, right? But she wouldn’t leave the house without it, and I was home for Mother’s Day yet again. I had stayed in my hometown an extra four hours just to take her to church and dinner before I left. So I let her take the doll. Because it was the only way to get her out the door. And I wanted to be a good daughter and celebrate with her, but man, I was tired of having the same three conversations on a loop, and I wanted to be done and get in the car and drive home.

Then I watched people react to her and her doll as we stood in the vestibule of the church.

When I was seven, my mom had pneumonia and wasn’t supposed to get out of bed, but I was prepping for my first communion (a big step on my path to being a super fallen Catholic.) So Mom got out of bed and took me to mass – a requirement every Sunday until our big day. But she was so sick. Hacking and running a fever. She stayed in the vestibule so she wouldn’t disturb everyone. And my mom was sick… so I stayed with her. I could hear the whole mass from there.

When our new priest – a dude I couldn’t stand already because he was a pompous ass – made a snarky remark to my mom later about keeping me from going inside properly for mass, I told him to go to hell. Right there in the vestibule of the church. And I never felt an ounce of remorse for it.

If you knew me as a kid, you know my mom was mean. The meanest mom in the world as far as I was concerned. (So totally not – but kid perspective is limited). But when my friends slipped up and commented on how mean she was, I was ready to kick someone’s ass. That’s MY mom. Nobody gets to talk shit about her but me.

So yeah, this priest snarked my mom, and I told him to go to hell. And the school suggested to my parents that I not re-enroll. I smiled all the way back to public school for third grade.

Standing there in the vestibule again in May of this year, my mom clutching that doll for dear life, seeing the reactions people had to her and her baby, I wanted to scream. I wanted to tell them that my mom was sick and to stop gawking at her. I wanted to tell the God and saints that are supposed to protect Catholics how damn unfair it is that my mother had become this sad woman who couldn’t feel safe without a toy in her arms.

I wanted to go back in time, to the first moment my gut said “something is wrong” and do something… anything… that might keep that day from ever happening.

My brother and I have lamented in depth about the window we missed… to get her to make a plan for what she wanted in her old age; to have a real conversation with her about what was going to happen if she started to deteriorate; to let her have some say in her future.

Because that’s done now. She hates it. Hates me for it most of the time. But she can’t make her own decisions anymore, about hardly anything. And it’s terrible. And I wish it wasn’t true. But it is.

I came here on this visit with one thing I had to do… I had to say to her, out loud, “everything that’s happening is happening because I love you more than anything else in the world, and I have to make sure you’re safe.”

I said it. I’m not sure if she heard it in a way that mattered.

But today she loved me. Even if she wasn’t always sure who I was.

The fear that it’s the last time… that she’ll know me, that she’ll remember she loves me… runs deeper than I can say. I’ll probably see her in a few months for Christmas or New Year’s. Will she still know who I am then? I don’t know. Things are happening faster now – she barely changes clothes or leaves her room anymore, and simple things are becoming impossible.

I snuck upstairs to write this. To get a break from how hard I had to fight all day not to cry. She came looking for me. Wanted to be sure I was safe – “all the doors and windows locked up there?” I went back down, walked all the doors with her downstairs, kissed her goodnight, and told her I loved her.

“I love you, too, baby.”

I have to leave her tomorrow. It’s going to nearly kill me.

But today she loved me. So I’m going to try to hold on to that. To remember it. For both of us.

________________

“Call me when you get there.”

That’s what she said as she hugged me good-bye.

For a few seconds, my mom was there, treating me like her baby… worried about me traveling out in the world alone.

Tomorrow she won’t remember I was even in the house.

But today she was here. For a moment.

________________

It’s my birthday.

I managed to get all my work done so I could take the day off – just do whatever. That ended up being shopping for some stuff for my house so I could go all Martha Stewart in the guest room and buying a new pair of shoes that I don’t need but really want.

But mid-day my mood just… sunk. Went straight from okay to shitty in about a minute and I couldn’t figure out why.

I tried to ignore it. Returned some calls, talked to some friends – figured out that my Facebook settings were still set to super strict private because of a blow up with a former friend (hence all those messenger happy bdays, which I couldn’t figure out).

But still so grumpy. So I took a walk. Cleared my head. Listened to the iPod playlist that usually helps me think up solutions to story problems.

That’s when I figured it out.

It’s my birthday. But my mom doesn’t remember.

That broke my soul open a little.

But the truth is, it’s better for her. Because my birthday has made her sad ever since my dad died. Even though she tried to pretend. For my sake. Because my birthday is his birthday, too.

“Daddy’s girl right from the start,” she always says.

Or she used to. When she could remember.

So it’s my birthday and my mom doesn’t remember. But she also doesn’t remember to be sad because it’s my dad’s birthday and she misses him desperately.

So that has to be enough.

Happy birthday to me.

________________

I’m not sure I’ve ever missed someone as much as I miss her.

Which is crazy, because she’s still alive, but of course – she’s also gone.

The mom who I could argue with and tease and sass – she’s left behind a woman whose confusion I manage, whose feelings I validate, whose anger I take.

________________

It’s her birthday today.

I sent her a cake because Mom loves sweets and things really don’t matter to her anymore beyond the gowns she wears all day long and the baby doll she can’t live without.

She managed a five-minute phone call – and was generally in a good mood.

It’s the first time I haven’t been with her to celebrate her birthday in so long, I can’t remember the last time I wasn’t.

Maybe not always on the day – because jobs – but always in the vicinity. Lunch. Errands. Watching a movie she loves that I hate (Hello, Easter Parade!)… it’s been our thing.

But the most I could do was send her a cake. Lemon – which she loves. And tell her I loved her.

And wonder if next year, she’ll even know what a birthday is.

________________

They had to call the police on my mom today.

She’s been aggressive. Violent. Screaming and terrorizing everyone around her. So they called the police, and now she’s in an emergency room 3,000 miles away from me, and I can do exactly nothing to help.

She’s so angry. And so scared. And so confused.

This illness is… a nightmare.

My mom wasn’t a perfect mom by any stretch. Sometimes she wasn’t even a good one. But she deserved better than this… for her mind to turn against her and to see enemies in all the people who are trying to love her and help her.

We all deserved better than this.

Fuck you, Alzheimer’s. Fuck everything about you.

________________

Today is Thanksgiving, and my mom spent the day with strangers in a hospital where she’s being evaluated to see what can be done to help manage her moods and the progression of her illness.

I called and wasn’t sure she’d speak to me on the phone, but she’s shifted all of her anger at me for everything to my brother for putting her in the hospital, and so for once, I’m not the villain of her story.

She’s still scared. Still angry. But she was calmer than usual when she’s in those states – so maybe something they’re doing is helping her.

But being so far away from her… I can’t even begin to describe how hard it is. Even if all I could have done was sit with her at the hospital for an hour during visiting and watch TV with her…

But I can’t be. I have career things going on that demand I be here – and I’ll see her in a month for Christmas. And yet I have no idea what that’ll mean… will she be home, more willing to let us all take care of her? Will she be in a facility where I have to visit during mandated hours? Will she know it’s Christmas?

And as always, there’s the big one… will she remember me?

Halfway through our five-minute conversation, Mom had to confirm that it was me she was talking to. And it took everything I had not to fall apart. But then I reassured her it was, and there was enough of her there, present in her mind, to give me a little shit.

Me: “I made a homemade sweet potato pie today.”

Mom: “Well, how does that help me? You’re not here.”

Me: “I wanted to try it first, but I’ll make one for you at Christmas when I come visit.”

Mom: “We’ll see.”

We’ll see… that’s our life now.

We’ll see if she can come home or has to be in a care facility.

We’ll see how long she remembers the people she loves.

We’ll see how much more my heart can break before this is all over.

________________

I can’t remember how old I was when my mom had my Christmas stocking made. Probably around 7 or so because she was working at the community college when I was in grade school, and one of the women there made it. I loved it – a white stocking with red stripes – it looked like a candy cane, which I loved!

Then I saw the name she’d had put on it. Not Niceole, or even Nicky (which you better never call me to my face unless you changed my diaper or I changed yours), or Nic (which is always fine). No, it was the nickname she liked – POO. Not even spelled with an “h” like the adorable bear.

I didn’t want to hang it up, but everyone in my family called me that horrible nickname, and so up it went. And year after year, up it went. I’m staring at it right now because it’s up in my house hanging from the mantle. Despite how much I hated that nickname.

It’s one of the only tangible things I have from Christmases past. The stocking, my mother’s china, which we used to use at Christmas till one of the plates got broken – then we were barred from touching it until I packed it up and brought it home with me. The china’s not very useful yet since I don’t host big family dinners – so the stocking’s the thing that speaks of home and the past and the little girl who believed in Santa Claus until she got nosy and went and found her gifts early.

I wonder if she’d remember it. If I took the stocking at Christmas this year – or just showed her a picture — would Mom remember it? Or would it just be another thing that’s slipped away through one of the growing holes in her memory?

She spent three weeks in the hospital and the doctors finished all their tests and got her on meds and recommended we find a facility for her because living at home with my brother only brings out her most combative qualities. So we’re in the process of vetting places — I’m not sure if she’ll be in one by the time I get there for Christmas or if it’ll be something that happens after I leave. I just know it’s happening, with me doing what I can from here – while she’s there, without me.

The one thing my mom never, ever wanted was for us to think of her as a burden. And she isn’t. Never. Because she’s my mom. But the fear and pain around what’s happening to her – that’s a burden. It weighs me down and makes it hard not to cry when I wrap her Christmas gift and hope she’ll be able to enjoy the holiday. And then I laugh because, my mom enjoying the holiday would be something new.

Not a single Christmas in my life passed without my mother angry. At something that went wrong with dinner. At people being late. At how someone reacted to their gifts. At my dad, my sister, my brother, my sister-in-law, me… I mean, always angry.

It’s easy to remember the anger. Hers, and eventually mine when she refused to come spend the holidays with me anymore, even though she knew I couldn’t spend them in our house without my dad there. Or the fights we had over her traveling with me to the east coast to see our family – blowouts that I won sometimes and lost others. The trips were torture for me… all her bad attributes made worse by being out of her home, on a plane, and feeling like I was telling her what to do all the time. (I was, and it turns out, I had to – but at the time, I thought she was just being difficult and trying to make my life abject misery.)

But there was good, too. Things I don’t remember well because I was a kid more obsessed with presents than moments. And things that stand out. Wonderful dinners. Her letting me make the cake for the first time and being so proud of how it came out. Teasing my Aunt Joan, who then cut off all the edges of my cake because that was her favorite part. Making potato salad at 2 a.m. because she didn’t want to go to sleep in case she slept too late and didn’t get the turkey in.

Then I grew up. And I started appreciating moments more than presents. How you need to hold on to them. I remember more of those than I expected…

Like the year I was so poor that I couldn’t buy gifts for my family, so I made them, and my mom acted like the homemade poem/picture combo was the greatest gift she’d ever seen.

The time I couldn’t come home for the Christmas and my mom cried when I called because she missed me so much.

The year I scraped together fifty bucks to buy my parents a new custom painted mailbox because my mom kept complaining about how ugly hers was. She made my dad go put it up the next day.

And the year I found some of her favorite Abbott & Costello movies on DVD and we watched them all.

Her weird obsession with the books in the “Mandingo” series and how I spent hours on Amazon finding them all so she could read every single one. Which she did, more than once.

The smile on her face when I got her a new turntable and replaced her beloved Mario Lanza album, the original long ago warped by the intense desert heat of my hometown. (I didn’t look for it, but I know this one, too, is now a mangled mess because she kept forgetting to turn on the cooler and the unbearable heat in the house sealed its fate).

This year, I am, strangely, hoping for some of her anger. That when she sees the nightgown I bought her, she says something flip like, “you know I don’t only wear gowns, right?” (because I bought her one right before her birthday, too.)

She kind of does only wear nightgowns – but I’d love for her to be a little offended by it all the same.

Maybe she’ll be annoyed I didn’t make her favorite cookie.

Or get fussy about how we won’t let her watch what she wants to watch (although my brother’s house is an endless marathon of Hallmark Holiday movies, so I might be the one grousing about that.)

And maybe I won’t show her a picture of the stocking that says “POO” that’s hanging from my mantle.

Because then I can pretend she remembers it. At least for a little while longer.

________________

I wish I could tell you it was a magical Christmas. That we got a miracle and Mom was Mom and we had one last, good holiday with her at home with the whole family.

It was definitely not that. It was… so hard. So devastating. And it left me feeling gutted.

One of the things I wasn’t prepared for is how Alzheimer’s is less a long, slow descent and more an insane roller coaster where your loved one experiences extreme highs and lows – plateaus in a spot just long enough for you to catch your breath – then dives into one of those terrifying drops (or slams into a loop) that seems to catapult them to the next level of the disease.

Every time I would go visit my mother, once I knew something was wrong, it would be to see the new damage inflicted… how she went from being a little forgetful and paranoid to not wanting to drive and making up details of her life to fit the thoughts in her head. To seeing my once heavily security conscious mother become a person who’d let strangers in the house to change equipment she owned and paid for then not remember saying it was okay.

The changes in her personality – in her behavior – and in her spirit were always obvious. Always stark. Always heartbreaking.

Over the last 48 hours, we endured one of those seismic shifts. After weeks of wandering the house at will, defiantly packing and repacking her suitcase over and over, declaring she was going home, and in general being a version of the difficult human we’ve always known her to be, Mom became frail, hunched over, and so tentative when she walks, you worry she’ll fall at any moment. She struggles to get up from chairs or her bed. And she’s scared. So terribly, terribly scared.

I had to beg her to look me in the eye today while she sat in the bathroom, shivering, with me and my niece trying to get her into the shower so we could help her get cleaned up after what feels like the first of many incidents to come. (My niece is an amazing human being, by the way. A trained nurse, I watched her care for my mom today the way she cares for her patients, and if your loved one is ever in her unit, then you’re blessed).

I had to ask her at least three times to look me in the eye. She was terrified to get in the shower – afraid she’d fall even though I’d bought her a stool to sit on. And I promised her that I loved her and I would never let anything bad happen to her. That she’d be safe. That I wouldn’t let her fall, no matter what.

She finally gave in. She let my niece clean her up while I ran around grabbing shampoo and towels and getting her gown ready. And today nothing bad happened to her.

But all the bad things are happening to her. That’s the truth of it. As much as I promise in the moment, there is nothing I can do to hold the terrible that’s coming at bay.

I gave her the nightgown, by the way. The one from my earlier passage that I hoped she might tease me about buying. At first, she barely registered it. And then when I showed it to her after she tossed it aside, she really paid attention to it and loved it. And then an hour later, in her room, she didn’t remember that she’d ever seen it.

Everything today at our family Christmas celebration today felt a little final. It may not be. Tomorrow, my brother and I are going to pick out her room at the assisted living facility she’s moving in to next month. They say we can come get her for days at home. But by next Christmas, will we really be able to do that? There’s no way to know, of course. No way to predict this horrendous disease. If the last 48 hours… last six months… last two years is any indication, we’ll be lucky if she knows what Christmas is next year, let alone is well enough to come home with us for the day to celebrate.

But there was this one lovely moment today that I’ll hold on to forever.

Seeing her great grandchildren has been very stressful to her. Partly because small rambunctious children agitate her, and partly because she can’t keep straight who they are – or who their parents are. But today, after the nightmare of the accident and the shower and the terror I heard in her voice and saw in her eyes, Mom came out of her room. And she saw my two-year-old nephew Jackson… and she lit up. She said hello to him and actually tried to pick him up (we were nearby to assist her) and had a few moments where she truly enjoyed one of the tiny humans who are the center of our family’s world.

I got a picture of Jackson listening while his Great Grandma explained something to him that probably didn’t make any sense, but he’s two, so what does he know about sense and logic and coherence in a story? He’s probably Mom’s dream audience.

Neither of them will remember it. But I will.

When I read, then saw “Prince of Tides” years ago, I was so torn apart by the idea of Tom having to be his sister Savannah’s memory because she was too fragile to hold on to the traumas that were tearing her apart. But he held all of it. Good and bad. And helped bring her back from the brink.

If only I could be my Mom’s memory. If only, by way of me, she could hold on to the stories we told around the table today or to the memories of the Christmases we spent with my dad or even the long-ago thoughts of herself as a girl with her four sisters and her parents in a New Orleans living room, tearing open wrapping paper.

I’d carry all of it if I could. If it would help her. If it meant she could feel the happiness of those memories just a little longer.

Yet all I can do is carry my own. That way, no matter what this godforsaken disease does to her mind, she’ll never really disappear completely.

But my god… do I miss her.

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We picked the room. The walls are blue – she likes blue. And we found her a chair that’s comfortable but easier for her to get out of than the recliner she’s been using at my brother’s house. And we made a list of all the things she needs: two sets of bed linens, towels, a shower curtain, a phone, extra blankets, a bathroom rug, table lamp, water resistant mattress pad, cushioned mattress topper.

It feels a little like getting a kid ready to go to college – but that’s all about the future. About what’s to come. And this is about the end… making her comfortable until her brain completely fails her and takes away the last shreds of who my mom is… and then ends her life.

Some part of me dreads when those little traces of Mom disappear forever.

Some part of me wonders if it’s more merciful to wish them away so that the flashes of recognition and fear of what’s happening to her go away. Let her be in a place where the degradation of her condition and the horrible reality that she can no longer make any choices for herself is something she is blissfully unaware of – so that maybe the end of all this will be peaceful in some way to her.

Watching her disappear is hard.

Watching her struggle is awful.

Watching her be afraid is the thing that will haunt me, always.

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I talked to her today for the first time in nearly a month. Why it took so long is an infuriating, boring story and frankly, I don’t have it in me… a lot of red tape and hospital logistics and getting used to a new assisted living facility and their rules.

But I talked to her today. And she sounded like… her. The UTI that made it seem like she was fading so quickly at the holidays has been treated and her movement and personality are back to… well, where they were before the day they weren’t.

She seems to be adjusting well. Likes her room. I think we were right, that being in a space that feels like hers without us there to tell her what to do is helping. And hopefully she’ll get into a good routine, and once she gets her phone in her room, it’ll be easier to talk to her.

But something’s changed forever – something I’m struggling to come to terms with.

She doesn’t need me anymore.

After decades of my being the center of her world – and her being all-important to mine because I knew I had to be there for her – she doesn’t need me anymore.

“My remote doesn’t work” – she called me.

“I want this book. Order it for me.” – she called me.

“I miss your dad.” – she called me.

Every Mother’s Day and birthday for a lifetime – some portion of every holiday period, no matter how much I didn’t want to go to Ridgecrest, or she didn’t want to come to LA or travel with me – they were spent together. And now she’s 3,000 miles away and I’ll see her maybe two, three times a year – at best.

And the phone calls. Multiple times per week for years. Then the last few, once a week, because she started getting angry about me checking up on her, so I couldn’t call too much.

Now a month can go by without me hearing the sound of her voice – and I don’t know what to do with that.

She’ll get the phone. It’ll be easier. But some days, she’ll be in that place where she hates me – remembers that this is all my fault (because I told everyone she was crazy, remember?) and on those days, she’ll hang up on me. Or not even answer the phone.

And some days, she’ll answer and talk a few minutes before she decides she’s done and says good-bye.

I always tell her I love her before we hang up. She says it back. But I’m not sure she knows it’s me she’s saying it to when the words come.

But yeah — she doesn’t need me anymore.

Not in the ways she used to, at least.

Not in ways she knows.

But I know. I know I have to remember. The days we loved each other. The days we hated each other. The ones where we did both. The way she wagged her finger at me when I was in trouble, and how she was ready to tear down anyone or anything that hurt me or made me cry.

That time she did surgery on my toy poodle’s paw – and cut up a sock to bandage him and took such good care of him even though all she ever did was complain about what a pain in the ass he was.

Watching her refuse to let the grandkids win at Sorry. Or sitting on the floor with them for hours, playing Barbies. Making paper dolls and cutting up old fabric to outfit the kids’ dollhouse.

The glee when I finally – FINALLY – got a job as a writer and I called to tell her.

The way she wanted to write an angry letter to my network when they canceled the shows I worked on – but that she loved.

The first time I took Miss Ellie to her house – and she was so sweet and good to my dog after I was scared she’d be mean, because she’d tell you any time she could how much she didn’t like our pets and didn’t want them in her home.

Her joy over every gift I ever gave her – homemade or carefully hunted down after she told me once she wanted something. Every single time, you’d have thought I gave her a diamond.

The way my father looked at her, on the days when they still liked each other, and made each other laugh.

The way she missed him when he was gone.

When I was five and had the worst stomach flu ever, and my dad wanted me to go back to school – and then I threw up all over him. But then mom came to my rescue – cleaned me up, changed my sheets – and never let my dad forget that he was wrong.

How I couldn’t wait – COULD NOT WAIT – to get away from her, and then still had to call her every few days once I moved away from home, because what else was I supposed to do?

The first year I couldn’t come home for Christmas, when she cried on the phone because I wasn’t there.

The “gas money” she shoved in my hand every time I visited, long after I really needed it.

I’ll remember that she was my mom – until time and this horrible, unfair illness stole her ability to be my mom. And that all the mistakes she made came from human frailty. Because despite my surety when I was young that she was somehow this larger than life, indestructible force of nature – she was just a person, with wounds and pain she carried with her every day.

As much as I will always hate what’s happening to her, I hope the silver lining is that the wounds and the pain are all disappearing first – that those memories are the ones seeping through the cracks. Leaving some room for the peaceful, happy, joyful, loving memories to stretch – spread their wings, and take up the space, and give her more of the things she never had enough of in her life.

I hope the last thing she forgets is my dad. That maybe somehow, the stubbornness she swears I got from him (she lies, it was both of them) will let him hold on, refusing to leave her memory until he’s the last thought she has before she goes.

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Writing this has been excruciating… every time, when I get to the end of a segment, no matter how long or short, there are tears streaming down my face. I have learned not to fight them because if I try to hold them inside, it just wastes energy I don’t have. Because learning to say good-bye to my mom is taking every bit of strength I have inside me.

I have a pretty deep supply of strong, though – she made sure of that. Not necessarily in ways I will remember fondly – but that were, undeniably, successful.

Anyway, this hurts. A lot. More than I ever thought writing about it would. So I’m not sure I’m going to write anymore. Not here. Not in this way. Not about her.

She’s in everything I write, though. Every piece has a piece of her. Maybe just an attitude in a character. Or a line of dialogue. One of her funny Southern sayings that people never believe are real. Maybe a whole big messy slice of our history.

But she’s in everything. She always will be.

That’s how I’ll remember you, Mom. Always.

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