xlovebecomesher: (Far Apart)
I fought dementia for my mother's life.

At times, I thought I conquered the dementia. Those were the days where my mom had her memories, she would laugh and joke and we'd sit and reminisce. We'd talk about the good old days about going to lunch and shoppings on the weekends with Bubby and long games of Rummy. We'd laugh about the long drives through Potomac with Aba as he looked for work and he'd shout Yemina (right) or Smolah (left) to tell Mommy where to turn as they'd argue in Hebrew about money and other mundane things. We'd talk about romance novels and television shows and what's going on in the world or just hold hands and sing random songs and prayers in Hebrew just because we could. Those are the days that I still smile about.

Dementia fought back viciously. Dementia made her into an anxious and meek shell of a person; unlike the lively and bold woman who taught me to stand up for myself.  Dementia took her ability to remember where her favorite earrings were, how many times she had called me, how many Klondike bars she ate . Dementia stole her ability to remember to shower and change her clothes, to know what season it was, and even how to do basic subtraction. Those were the days I'd come, crawl under the covers and bawl until I fell asleep.

I didn't give up; I couldn't. I wasn't going to abandon my mother, my mommy, my best friend. So I fought on.

When she was just diagnosed, I fought for her to still have her own apartment so that she could have some modicum of independence. Maybe it was foolishness but I thought giving her some independence back would help after the battles she fought living with her sister and then living with roommates. For a year, she was thrilled to have her own place again. She hated living by herself but she went to daycare everyday and she took the bus that came every morning by herself to her daycare and the same bus home.

She didn't know that I was making sure that her rent was paid, buying her her clothes, paying for her daycare, fighting with the resident manager who wanted to evict her after a month of her living there because of how much she annoyed the front desk person waiting for her bus (I won).  I applied and reapplied for Medicaid consistantly getting rejected because she made just a little over with her social security. I did everything I could for her and to be with her while trying to work, attend grad school, and adjusting to being newly married. There were days I could have done better, I know. Days I should have had more patience, days I could have tried harder. I did the best I could single-handedly and I thought we were slowly climbing this uphill battle and we'd be victorious.

When the resident manager finally won nine months later in his desire to evict her (in his defense, she couldn't remember anymore where she lived and kept trying to break into the wrong apartment), I looked into new homes for her. One place scoffed at me when I said I could only afford $1100 a month; she asked me if I truly cared about my mother if we could only afford that much. Another wanted a minimum of $10K a month. I researched until I found a nursing home that I liked; one that my grandmother had been in and one that we could afford. All I needed was Medicaid and a coding.

My research didn't matter because dementia won. My mom had a breakdown one morning while still at her apartment and had to be hospitalized. She told the bus driver who she adored that if she didn't turn the bus around, she was going to get her gun and shoot everyone. Now mind you, my mom has never shot a gun, never held a gun in her life. But dementia didn't know that.I got a phone call that day from the county social worker telling me that the police were there and that it would be in our best interest to send her to the hospital to find out what was going on. I left work and drove to hospital to see her only to find my mommy heavily sedated in the psych ward. It might be one of the worst days of my life; I can still picture her lying in that bed barely able to speak. The hospital wouldn't let her return home and set out to find a nursing home that would be able to fit her new medical needs along with her new personality of fighting with anyone who came into her room whether verbally or physically. In one of her fits, she told me that I loved a rock more than her because I couldn't take her home with me. As soon as I left that day, I broke down sobbing. But on the plus side, the hospital applied for me Medicaid and the coding she needed. Even though at the end I didn't get the nursing home I wanted for her, they found me one close by that would take her and the little we could pay. I took that as a win.

I figured now with her in a nursing home with doctors making sure she'd take her medications, we'd get back to normal and I'd have my mom, my best friend, my confidante back. But I also snarked morosely in a fit of despair to my husband that for some reason people don't tend to live very long in nursing homes; statistically I had read, people live for about 3 months after being put into a nursing home.

Dementia must have overheard that comment and decided to prove that comment right.

Two months later, I found my mom nonresponsive in a wheelchair staring at the ceiling. We rushed her to the hospital where they found nothing wrong with her beyond rigidity; she started speaking again like nothing was wrong. That day in the hospital, I crawled into bed with her and we sat and cuddled and even napped together. She was lucid enough to realize that I've gone through hell and back with her and thanked me and told me how she loved me; I was floored that she was able to realize everything I've done for her. I told her how much I loved her and how we'd get through this.

My mom was rushed back to the hospital a week later rigid and nonresponsive. For a month, they ran test after test on her but nothing was found that was causing this. Eventually, the doctors simply stated it was end stage dementia and began preparing me for the worst. I wasn't giving up; I agreed to all the tests, had her transferred to a different hospital, agreed to the feeding tube that would sustain my mom's life. I did everything I could.

Dementia at this point had now taken everything from her even down to the ability to move, speak, or even eat. And still I fought.

I didn't lose hope until one hot day in July, I walked into what should have been just a regular meeting with the hospice nurse for updates. I was met with the nurse, the hospice Rabbi, and the hospice social worker. Immediately I knew this was more than just an update meeting.

It was the end for her; the sores were becoming too much, she was at high risk for sepsis. The question was bluntly asked: did I want a peaceful death or a painful death?

I called my husband and told him to come over from work and then I just lost it.

Everyone sat and consoled me; it was my choice to keep the hope alive or to let go. No matter which way I chose; everyone told me they'd understand and respect my decision but it was all on me.

In the end, to what might sound like giving up; I chose peaceful. I couldn't let my mom suffer anymore than she already had. My mommy had been through hell and back and it would have been selfish to keep her alive to suffer just so I could hold her hand. That day along with the day my mother passed away are the two worst days of my life.

Since then I've wondered, should I have let go earlier? Made different decisions? Chose different paths? The endless possibilities of what could have been lay out in front of me and that's something I will have to live with for the rest of my life. But a wise woman told me, any decision you have made is the right decision as there is no way you could know then what would have played out. So I take comfort in the fact that I fought dementia head on rather than cowering.  I didn't lose hope and fought for my mom for as long as I could. For that, I think my mom would have been proud of me. 
xlovebecomesher: (Song)

Dementia snuck in quietly.

It started off with not remembering how use her Gmail account to send out resumes. I spent hours upon hours reteaching her how to send attachments until I took over emailing for her. I would come home from work and job search for her for hours, writing cover letters, sending emails.

She told everyone she spent her days job searching. When I'd question her because I knew I was the one doing the emails, she'd tell me 'What do you know what I do when you're not home?"

I stopped arguing with her and let her take credit for my job searching. Maybe she was job searching after all, what do I know?
....

"How do you play this again? Why do the rules keep changing?" She threw her Uno cards down in frustration and walked away.

I shrugged my shoulders. Maybe she wasn't in the mood to play games, I rationalized. It was late. I don't always think straight when I'm exhausted. I brushed it off. We'll play another day. I didn't give it another thought.
....

She forgot that I was in a car accident.

I had been rear-ended on my way home from work the previous Friday. I was okay but the person who hit me busted my fuel tank. I realized this as I bought gas before I got into the accident. By the time I got home, after driving my poor car home, I had no gas in my tank. We talked about this all weekend and speculated about what exactly was wrong with my car and made bets on how much damage did this person cause to my car (The answer was $1600 worth of damage).

She stared at me as I reminded her of the events of that day in confusion. Finally, she shook her head and told me that she remembered. How could she forget? She laughed uneasily.

I immediatly Googled tests for dementia; she passed the tests I found with flying colors. She laughed at me and told me nothing was wrong. I tried pushing it out of my mind. Nothing was wrong, she said. People forget things all the time, I reminded myself. I tried to shake it off.

But the uneasiness never left me.

....

"Hillary, she hasn't showered in weeks. She's not changing her sheets. I can't tell you the last time she did her laundry."

"What are you talking about?" My mother was known for her cleanliness; this had to be a lie.

"I'm not making this up. I swear to you. She says she has and argues with me when I tell her to shower or to do her laundry. She tells me 'What do you know what I do when you're not home?""

"I'll talk to her."

I sit with her and I make a list of things that she needs to do. Shower, laundry, make food. She nods and holds on to the list for dear life.
...

She called me one night.

"Hillary, I don't know where I am. Come get me."

"What do you mean you don't know where you are?"

"I went to get my nails done and out to dinner with Berta but I don't remember how to get home."

"Where are you now?" I begin to yell and panic.

Pause. I begin to hyperventilate imagining the worst.

"There's a church next to me, I think. It's a green church."

I think frantically. Where is there a green church around here? I dig for my keys ready to run out; to where I'm not sure, but I have to rescue her.

Finally she says, "The sign says St. Elizabeth's."

I figured out where she was and raced to go save her; hoping nothing happened to her. Luckily she had pulled into the parking lot and waited for me. I almost fall to my knees in thanks when I see her standing next to her beloved car.
...

I began taking her to the doctor for tests. She can't remember how to use the coffee machine or the remote control; let alone, showering, changing clothes, doing laundry. She panicked when she was left alone.

"Ma'am, are you a smoker?" The doctor asks her.

"No! I have never smoked a day in my life!" She answers belligerantly.

"Mommy, you smoked every day for over 30 years."

She glares at me and begins to shout. "What do you know? I know myself and I know I don't smoke. Why do you want to make me look bad?"

I slunk as low as I could in my chair. I wondered to myself am I crazy or is she crazy? I prayed that the tests would find something that would bring my mother back to who she was.
...

The doctor refers us to a neuropsychologist for a battery of tests.

The neuropsychologist administers the Montreal Cognitive Assessment. She asks my mother to draw a clock. "This is easy," I think to myself as my mother says the same words out loud. As I watched her draw the clock, I froze in my chair unable to believe what I was watching. She drew a circle just fine but her numbers were on top of each other to the top left of the circle. The neuropsychologist then asked my mother to count back from 100 by sevens. My mother is a bookkeeper; this should be a breeze I thought. She got stuck on 93.

At that moment, I couldn't breathe. I couldn't think straight. What does this mean?

I later learned that not being able to draw a clock is an indicator of dementia.

....

His words were like a gunshot. "Ma'am, I'm sorry to tell you that you have Alzheimer's dementia."

I almost fall out of my chair.

"What does this mean for me?" she asks. Luckily, one of us had the right mind to ask that question at that moment.

The doctor explains about dementia, things that can be done to slow down the progression, medications that can be taken. My mind is fixated on the word dementia. I numbly take the phamphlets given to us, the medication samples, and we walk out holding hands back to the car.

"Mommy, I promise you that you will be the prettiest dementia patient. We're going to get through this. We're going to fight this dementia together." We smile at each other and walk quietly for a few moments as we process what the doctor said.

"Hillary?" She stops walking and I stop in my tracks. She looks lost.

"Yes, Mommy?"

"Who has dementia?"

I try to figure if she's joking or serious. "You do," I tell her gently.

"Why would the doctor say I have dementia? I don't have dementia."

....

This was written for LJ Idol: Week 3 - Brushback Pitch. A Brushback Pitch is a baseball term that refers to a pitch aimed close to the body so that the batter must step back to avoid it.

xlovebecomesher: (Far Apart)
My coworker and good friend, Theresa, expressed to me today that she doesn't understand why her daughter and her don't get along.  Her daughter, from what I understand, has put her through hell and back since she was a teenager and now at 31, they have a rocky relationship. She asked me despite me being the same age as her daughter, where did she go wrong as a mom? I couldn't begin to answer for several reasons:

a) I think Theresa is an amazing woman and her daughter should be thankful she has such a wonderful mom (or at the very least, the envious person in me who misses my mom dearly, she should be grateful that her mom is alive).
b) I have no idea what her daughter has gone through to make her so cold towards her mom and I've only met her daughter in passing once so it's not something I can ask.
and
c) I can't relate because my own relationship with my mom was the complete opposite to the point now that my mother has been gone for 3 months, at 31 years old, I'm working on learning who I am without her.

My mom and I were inseperable. My mom raised me pretty much single-handedly from the time I was 5 with minimal help from my dad. I knew I was my mom's world; my mom was my world. Her friends knew wherever she went, I went too. From sitting at my mom's friends' houses late at night reading, coloring, playing my hand-held Little Mermaid game, or if we were at one of my mom's friends who had children my age, I'd be running around playing with them, to late night dinners at restaurants, or weekend trips to Atlantic City, my mom took me everywhere.

If my mom didn't take me somewhere, the nights she wanted to go out with just her friends and I'd have sleepovers with my Bubby, there was always phone calls. Even in the days before cellphones, my mom would always make sure she knew where a payphone was to call me and check in with me. She knew I would worry and sit by the phone if I didn't hear from her when she said she'd call. I remember being six years old and huddling in my grandmother's old brown recliner waiting for the phone to ring. Her friends would laugh at her - "Luba, you know she's at your mother's house, why are you so worried? Why are you calling?" She didn't care; she called no matter what.

The two of us would spend weekends going to lunch with my grandmother, shopping, getting our nails done, spending time together (we played a lot of card games and board games especially Trouble), doing things with friends, watching TV, reading (my mom is the reason I am a romance novel addict). This stayed the same throughout my life.

I don't think I ever truly was rebellious. Did I do stupid things? Sure. What child/teenager doesn't? What child doesn't frustrate their parent?

One time my friend came over and we came up with the bright idea of lighting paper towels and throwing it off my 11th floor balcony just to see what happens. Let's not talk the number of times I've thrown ice cubes off the balcony just to see what happens or pushed all the buttons on the elevator (and I lived in a 14 story building) for the hell of it (I have some funny stories of that). I'd like to forget my one and only foray into vandalism where the same friend of paper towel fame came over and we wrote all over the walls in the stairwell of my apartment building.

My mother was frustrated with me in my lack of understanding of math (I didn't understand percentages until I was an adult) and she would have to call her friend to tutor me because I would drive her to tears when she'd help me with math homework. It would drive her nuts how messy I was with my things all over my room and how many times I've lost things throughout the year. I'm still in mourning for the Dick Tracy umbrella I lost when I was 6!

Rebellious though - not so much. I didn't drink, do drugs, smoke, have sex, party. Things teenagers do to rebel.

The worst I did was skip 5th period every now and then so I could go to other lunch period and hang out with friends that I didn't see during my lunch period. I didn't even dye my hair crazy colors or go all out with piercings (as much as I thought about how cool it would be)!

Which is strange when I could have easily become rebellious. My parents were seperated, my dad was in and out of jail. My aunt even assumed that I would just simply turn out like my dad.

"The apple doesn't fall far from the tree. Watch out for her" She informed my mother haughtily.

Don't get me wrong, my mom and I fought. We weren't perfect. We yelled, we screamed. My mom could yell like no other. She would scream at me and I wanted to crawl out of my own skin. Little things could set her off like misplacing her things (we've fought numerous times over how many times I have not put her tweezers back where they belonged). She would then turn to the silent treatment to the point where I would write her letters apologizing for everything and anything, begging her to speak to me again. I think I still have some of those letters.

At the end of the day though, I knew my mom was there for me, loved me, and would give me the world if she could. I would never have let down my mom. Not if I could help it. My mom was my best friend and as she told me despite having her closest friends, I was hers.

In college, I moved to Baltimore, 45 minutes away from home. I loved the freedom that living on campus gave me, the friends I met (including my now husband), the adventures I had. Despite the distance, my mom and I would talk on the phone several times a day even if was just to say "hi, I love you" or "Lilah tov (good night)." I would go home every other weekend or my mom would drive up to Baltimore with her friends just to take me out to lunch or dinner. My friends all knew about my relationship with my mom (some even thought of her as a second mom) and they would tell me they wish they could have the same with their moms. I never understood why they couldn't.

At 28, I found myself suddenly in the role of caregiver for her. My mom, who was always sharp, witty, and could calculate her checkbook to the penny, was losing her memory. She was diagnosed with dementia and five minutes after leaving the doctor's office, forgot completely about the diagnosis. I had to find her a place to live (which ended up in multiple moves), daycare, buying her clothes, food,  transporting her everywhere, making sure she didn't wander off (though luckily she was always easy to find). I lost my identity as being her daughter as I found myself thrust into a situation I had no idea how to handle with very little help.

At 30, I lost my best friend, my mom, the best person I knew. Her dementia had gotten to the point where for the last 8 months of her life she couldn't speak or move and was on a feeding tube. My mom lost her battle with what was officially Parkinson's August 6, 2016.

Since that day, I'm relearning who I am.

So much of my life has been tied into being a daughter and that is big part of how I have defined myself.

And I still define myself as such.

But I'm learning to understand who I am without my mother and my father deported back to Israel. Who am I beyond a daughter?

I'm a wife to one amazing doofus who loves me and my quirks, a cat mom, a special education teacher to 7 hysterical 3-5th graders who sometimes make me want to pull out my hair but I do adore them, a damn good friend (as one of my friends pointed out to me last week), educated, Jewish and proud of it, bilingual (though I find my Hebrew slipping at times without my mom to correct me), a writer (and my mom would be proud of me saying that since she always wanted me to be a writer and supported my fan fiction writing) and something I don't know if I would have ever described myself as but people have been describing me in the past three months but I've learned that I'm a strong person just like my mom raised me to be.

As I reread the above, I know my mom was proud of me and loved me, my mom would love the woman I am, and I know my mom would be proud of the woman that I'm slowly relearning the definition of as I learn to understand the world around me without her physically by my side.
xlovebecomesher: (Calvin)
I've been going back and forth debating if I should do this or not but I had so much fun last season writing and I know I would be sad if I did not do this! Thus this is my entry signing me up to participate in LJ Idol Season 10!

Mommy always said I should be a writer so my writing this season is in memory of her because she would love that I'm writing!
xlovebecomesher: (Come With Me)
I would have updated on the 2nd for the sake of the Ecstasy blog-a-thon except that I've barely been home today! Thus I'm backdating slightly to have an entry on the 2nd since well...it's still the 2nd in other parts of the United States ;)

So my birthday despite my original misgivings ended up being fucking amazing :)

I slept in today since I didn't have to work with Morgan [despite Dave and Petra constantly texting me this morning going OMG can you work...fuck that, you told me I have a day off thus you cannot text me at 7 AM expecting me to come in]. I stumbled out of bed close to noon and very happy. I got spanked 25 times and then I had gifts waiting which I was excited about even knowing what most of them were (I picked them out lmao).

I got from Mommy:
-A purple shirt
-A purple wallet <3
-2 pairs of purple socks
-Black high heeled boots (so happy because I didn't have a pair last winter and I didn't feel like myself without them lol)
-Car stereo (came in the mail and I did not know about it and hopefully Pham will install it for me next weekend)
-100 rubber bands for my hair (which I had no idea but I was excited since I can always use them
-Leopard print sheets (found them at Sears and it was like $20 for full size so Mommy bought them and wrapped it)
-$50 to go for paying for my manicure/pedicure appointment with Timothy on Friday :)

I also got some really sweet cards from her that made me cry lol.

Afterward Mommy and I got dressed and we went to Max's (a Kosher restaurant) with Dalia and Michelle (who keeps strictly Kosher) for lunch. It was pretty decent (first time I've ever been there and not ordered falafal or schwarma but their other food is good too). Had some intriguing discussions about respect, relationship, and the future. It was interesting for me to watch the interactions now that Michelle and I are adults and yet out to lunch with our mothers and having these serious type of talks - like for the first time I was able to bring up to Dalia as an adult to adult that her husband does not respect her and she goes I know and the 4 of us were able to talk about the past and how that impacts us. Makes me wish that Michelle wasn't going to college in NY so I could hang out with her more.

I went to work for 1.5 hours. It should have been 2.5 but Jake wanted to go to his school's back to school night picnic. Alison's still willing to pay me for 2 hours so I'm cool with it especially the fact that I was happy to see Jake so excited about spending time with his friends. She got me a big chocolate chip cookie cake and everyone sang me happy birthday and we ate cookies - not bad for 1.5 hours ;)

Then came the fun part - my last minute dinner plans. As I mentioned, I invited people just yesterday morning to go out to dinner. I would have been happy if 2 or 3 friends came out since it was such short notice. Ended up that I spent my birthday with 14 friends at the Lebanese Taverna :) Good times! We also went out after to this Irish pub McGintys that's down the street and had drinks and dessert - I had Banana's Foster (yummy) which they put a candle on it and everyone sang happy birthday :) I was amazed. I really did not think people would have came out all this way for me (since it's a Wednesday night) and I was really pleasantly surprised :)

few pics of the night behind this cut )

What a nice way to start off being 24 :)

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