thatgirlshines

My mother has been diagnosed with Alzheimer's. This blog is the story of our new normal.

[thatgirlshines]

R.I.P. Romain Decoret

Romain Decoret - musician, writer, artist, and my father - passed away on 9 September 2024 in Paris 14eme. He was 77 years old. At the end of his life, he had diabetes, hepatitis, and a bad heart. It is believed that he died of a heart attack.

My father was nothing like your dad. Mine came with sex, drugs, and rock'n'roll along with a host of other things that do not make for a father. Ours was a complicated relationship. If I have a regret, it's that I never got to know him as an artist. We were never able to break through the walls of guilt, resentment, and blame to discuss things like why we each were driven to make art, what we heard and saw when we closed our eyes, that divine connection to a muse since birth. At times, our relationship - as his wife Véro often pointed out that we were two peas in pod, from looks to thoughts to behavior - was like two horned beasts in battle just because the other existed. I realize now, my father was crazy enough to believe in what he did - make music and write about music - that it was the only thing he ever wanted to do. When people told him, get a job, he would cut those people out of his life. He didn't want to hear anything other than, pursue your art. He suffered for his art. We live in a society that does not value the arts or the people who make art. Artists are constantly devalued, starting with their friends. "Hey, can you make this thing for me? I don't have any money but..." He spent most of his life poor. I remember the one roomed studio in the 17eme, on the ground floor. My father spent all his life playing music, reading about music, and writing about it. As I cleared his desk, I found entire pages of summaries of books he'd read and why it's important and what it intersected with. Most of it was in relation to musicians and music, but also political-socio-economics too. It was all an example of his very serious dedication to rock'n'roll. His home was a temple dedicated to music, books, and knowledge. The despair we all felt dismantling his home!

I admire and respect his dedication to his craft. He was the real deal when it came to his art. This was the reason he was THE GUY to send to interview music giants. He related to them on a musical level that none of the other journalists could. His friend told me he could have secured himself a nice position at one of the publications, record houses, or music organizations, but he didn't have the patience or the guile to pretend he cared about people who where there for the ego, power, and fame. His sense of anti-authoritarianism was well developed, even at his own detriment. While he was professorial in his knowledge and how he shared it, he also quickly dismissed you if you didn't understand the artist ethos and need to create.

You gotta give him his props. He was so stubborn in his vision, in what he wanted to do, that he just went ahead and did it, throwing all reason and caution to the wind. From insane adventures in search of The White Pearl, to starting one of the earliest French punk bands with Black Africans during a time when France was incredibly racist, writing books and articles about music, and then setting a standard for French music journalism, my father was a trend setter, a dedicated expert, a lover of the written word, a storyteller, an adventurer, a ladies man, a rock'n'roll sage, and rock'n'roll legend. His life is one so many can barely understand. It was a life dedicated to art.

That was my Daddy.

p.s. He can be found and visited at the Père Lachaise mausoleum. Bring him some flowers.

[thatgirlshines]

It has been exactly two weeks since Maceo’s life ended. It was ended by my decision to euthanize him after he bit me in the face, on the nose, on the cheek and on the neck, unprovoked on July 4th weekend.

Maceo was a rescue. He had a sketchy past that was unclear, likely involved being a bait dog, and the risk when taking on a rescue is that one never knows what triggers are programmed in. Honestly, after just three weeks since the bite, I have finally arrived at the hypothesis: there is nothing I did specifically to provoke him. Other than a few days of constant fireworks, there were very few stressors in his life. I believe he was simply annoyed and unfortunately, the three bites WERE the warning.

We’d just hit two months together. Maceo was a very affectionate dog. It was clear that in his early life, he was coddled, cuddled, cradled, carried, and treated like a baby. His favorite thing was to be ON a human. We were his emotional support humans. We joked we wore Maceo Luis SS24 because he was beyond a velcro dog. A text exchange while on a business trip: 

Me: How is the bebeh?

MCL: He’s relaxing

Me: What’s he doing, send a pic

MCL: I’m wearing him (picture of Maceo laying on MCL)

Very quickly, he showed me he liked kisses on the forehead. He liked the game I played with my fingers from his nose to his forehead, light fingertip tapping and petting gently up down his face. He liked the kiss I’d give him between the eyes. He would come into my home office, place his head on my lap, look up at me, and ask for the finger taps and kiss. On July 4th, while in my office, he came in and I got down on the floor with him, to cuddle him. He loved a good cuddle. As I was rubbing his back, I confessed to him all my feelings: “I love you, Maceo, did you know? You are so lovely, a beautiful and kind boy. You are my sensitive Emo boy and I’m MADLY IN LOVE WITH YOU! You are mine and Michael’s and we adore you. I’m so glad we found you, baby boy.” We laid on the floor in my office, just cuddling while he did his cute eye blinks, telling me he felt the same. He looked filled with happiness, without a care or worry in the world. He did that sigh, you know the one that dogs do, when they’ve fully relaxed? I thought to myself, he knows he’s home.

Saturday night around midnight, we were relaxing and watching some series of some kind. I was sitting on the floor, where I usually sit, and MCL was on the couch with Elfie on the floor between us, leaning on MCLs legs with his head hanging over the knee. We were enjoying a drink, MCL a beer, me a glass of sav blanc. MCL decided to get up to go to the kitchen to get a glass of water. As he stood up, Maceo shifted and moved towards me so I lifted my left arm to let him settle in to lean against me as we’d done hundreds of times before in the two months since he’d arrived. As I turned my head, all I saw was a blur of Maceo’s teeth and the rumble of his growl. I closed my eyes and felt light stings while I did nothing. I didn’t move my head, use my arm to cover myself, use my hand to push him away, or move my body in any way. I only sat with my eyes closed, in shock. 

Here’s what I remember, because when you are in shock, things that aren’t self preservation fall away. I brought my hands to my face. As I held my face, my eyes shut, I stood up and walked to the bathroom. I did not open my eyes until I was leaning against the sink and standing in front of the mirror. As soon as I took my hands from my face I could see all the blood on my hands. Then I looked at my face. Blood was pouring out of the tip of my nose.

At this point, MCL had moved Maceo to the kitchen, behind the gate, and was standing in the doorway of the bathroom. I turned to him and said, “Please tell me we don’t have to go to the hospital.” He replied that we were going to have to go. I grabbed a handtowel to keep pressure on my face until Ron and Sandra arrived to take us to ER. Of course, this was the week Mike’s car was acting up and not starting. 

I know we went to a first hospital that had no ER but I barely remember that. I barely remember walking into the Advocate ER on Wellington. I was given stitches on the chin/neck area. But the nose, that was going to have to be a plastic surgeon. As we waited for results and all that fun stuff, another emergency came in, a young man on a bike hit by a bus at midnight. I was thankful all I had were a few bites. They managed to stabilize him and I thanked the Creator for not letting that life slip away.

As I sat in my room, in and out of sleep, a recent video from the horrors of Gaza played over and over in my head. It was the one of the little girl with her jaw ripped open, hanging from tendons on one side while blood poured out from where her mouth should have been. There were no beds, chairs, blankets, just a dirty floor. So she was made to sit down while a young man helped hold her jaw shut, blood streaming down his arms, using a dirty bed sheet to sop up the blood. The floor was filthy, most of the room she was in was bombed out, dusty with rebar hanging from the ceilings. At this point, the hospital was operating with the help of medical students and volunteers as most doctors had been killed or were imprisoned by IDF. There were also no medical supplies so this poor child sat there while that young man held her jaw in place, and she cried. 

She was with me that whole night, this little girl. I cried tears of rage that there was no gauze in Gaza, the place where gauze was invented, none there while I had all and more than I needed. We went through quite a bit of gauze that night, a few boxes in fact. I was given some lidocaine for the stitches, so I would feel nothing as the nurse pulled that hard string over and over again through the flesh of my chin. But this young, wounded Palestinian girl, she had no gauze, no painkiller, no bed, no parents or loved ones with her, only a stranger to cradle her jaw close.

I was mildly concerned about what would happen next with Maceo but I was also so exhausted, I couldn’t bring myself to think on it too hard. The moment I woke up on Sunday, it was all I could think about and it would be the beginning of an emotional, mental and spiritual pain that far superseded the pain of an open wound on my face.

The rescue said we had two options: keep him and train the shit out of him or euthanize him. He could not be placed in another home and all liability would be our responsibility. With a bite history on his record, he was no longer adoptable. These are state, county and city laws. They could not take him back but they offered to euthanize him. They offered to take him away as well. To that, I refused. I know, I know. Several people called me crazy for not sending him away that very night. But even in my shock and horror, I knew I didn’t want him to end his life abandoned, afraid, living in a crate, and alone the last days of his life. I wanted him to feel loved and home, even if he did a terrible thing, he deserved that at the very least, considering humans filled him with all that trauma, fear, and abuse. If he has to die, let him experience unconditional love and happiness.

When we returned from the ER, the first thing he wanted when we got home was me. He wanted to check in, he wanted affection and he wanted comfort. He knew he had done wrong and wanted to show me he was sorry. I was still in shock so MCL kept him away from me. The next day, I avoided him. He stayed behind the gate in the kitchen, sitting sadly and forlorn. When he was let out, MCL was the one who stayed close to him. I steered away from him. But Maceo was used to me fussing over him so he’d follow me, wait for me outside the bathroom door, and watch me as I cooked or worked. Those first few days, I kept asking MCL to call him, distract him, and hold him away from me. But Maceo was an innately affectionate dog. He wanted lovings from me. So I gave in. 

The rescue, in the meantime, was dealing with their own earth shattering event. Their coordinator, who did the jobs of 6 people at least, died suddenly the same night Maceo bit me. It wasn’t until Sunday evening that they were able to get in touch with the family and found out their employee had died suddenly and unexpectedly. They asked if they could have time to regroup before sending the vet and asked again if we wanted Maceo taken away. At this point, Maceo and I were back to cuddling, albeit with a lot more distance. I no longer sat on the floor. MCL took on the task of wearing Maceo 24/7. Before the bite, the wearing of the dog was split between the two of us. Now, I was more leary of getting too close so MCL was wearing, walking and cuddling him most of the time when he wasn’t on solo time (time by himself in the back half of the house was important for this dog). 

By the time the rescue’s vet was able to see us, Maceo had spent nine days with us since the bite. From the moment I realized euthanization was on the table, I was in spiritual pain at the recognition of what this all meant, at a soul level. I do not ascribe to the religious belief that animals have no souls and that human life is more valuable than animal life. I believe ALL life is equally important as we are all connected and related. 

His life for my life. Punishment. Give him a second chance? There was a small committee of people (none of whom knew each other) who pleaded with me to let him live, to give him a second chance. I spoke with several dog trainers, assessing the feasibility of keeping him, training him. I even considered breaking the law and giving him to someone who could care for him but the reality is that I prefer to live my life above the line, not below it. No one once told me what to do, they just laid out options they’d seen in all their years as trainers. Each one did say the same thing, the context of the bite location matters. In every scenario they experienced, even with intense training, it all depended on the reestablishment of trust (meaning the human being comfortable) and that 9 times out of 10, it ended with euthanization. If the bit had been to the hand or leg, that’s different. When the bite is to the face, rarely does a dog live.

I wanted him to be able to live. I wanted to be able to get over it. But this will be the second time in my life that I have been bitten by a dog. The first time was when I was 18 months old, a German Shepard freaked out by the sudden noise I made and bit my left eye. I was lucky in that the bit only affected the lid and the sclera. It healed up really well with only minimal scarring that most people do not see. My left eye is a bit smaller than the right and it is the eye with the best vision. I spent a lifetime afraid of dogs, despite no memory of the bite and only the stories adults around me told about that episode in my life. With the help of my best friend, a dogwalker, and my mate, MCL, I learned to love dogs. I learned how to speak dog, and realized that I had just never tuned into the right frequency. I love dogs now. I have many dog friends. But I wasn’t confident I could get over this with Maceo. In my mind, I was thinking we’d keep him but I’d keep my distance. That is no life for a dog or a human. 

June 15th was the day Maceo was euthanized, a horrible day, probably easily one of the worst days of my life. Maceo’s previous foster emailed me and had asked that we spoil him on his last day and not cry until it was all over. She didn’t want him to be concerned about us. So we spent the day celebrating him for everything, treats for everything, and walks as many times as he wanted. His favorite human, his rescuer, came to be with him and he was so happy. Any day with his rescuer was a good day. His love for her was mixed with gratitude and a sense of safety. We let him eat peanut butter, which made his tummy hurt usually but he was so happy to have all this attention and love. I smiled, laughed, encouraged, complimented, flattered and spoiled him all day. He was having the time of his life and he didn’t want to go. 

He took forever to respond to the sedative. Even then, he fought so hard to keep us in his line of sight. He didn’t want to go at all. Because he got so much sedative, it narrowed his veins and getting the IV set up was painful to watch. As soon as he was gone, I threw myself on him, crying and begging for his forgiveness. I mean, it was straight ugly crying, complete with hiccups, stammers, stutters, and snot. Even Mike didn’t know how to comfort me in that moment. 

I’ve spent the last two weeks working through all my feelings and made many realizations. I’ve come to realize there was nothing that specifically caused his reaction that was in my control. I realized that my fighting the reality was only prolonging my pain so I had to come to a place of acceptance. I realized that sometimes in life, we have to make decisions even if we don’t like the options available to us as decisions. I realized that for a breed like a Presa Canario, they need to have a life planned for them, to be raised with other animals, to be socialized so they can be good family dogs. They are dogs who MUST HAVE A JOB. This is not a dog one indiscriminately breeds, it is bred very specifically to work and help humans. Humans completely let him down his entire life. I realized that bad shit just happens and there isn’t a reason for why. I realized that I am uptight asf, do not know how to relax and let shit happen, and I should stop looking for lessons in everything. I realized that shadow work is never-ending and has to be checked regularly. 

But two my BIGGEST lessons in all this? 

First, Blues music is healing when you are forlorn, depressed, broken, and in spiritual pain. I’m not talking white man blues, I’m talking O.G. blues, made by Black men and women. The healing is in shared pain of the lyrics, the tone and cadence of the vocals, in the notes of the guitar, in the quality of the recording. 

Secondly, your community will help you heal. You can’t do as well alone  So many people have stepped up and in. I always knew I was lucky and was surrounded by amazing people but it took this experience for me to see just how deep my luck is. From advice on post surgery care like silicone scar sheets to scar massage to somatic therapies to prayer, my community has held me in my healing. 

To my Maceo Luis Sayd Marquez, I forgive you. I love you. You are like the great, intense love affair from a summer trip that would never work out because of distance and culture. You are like the child I lost and the children I would never have, and the heartbreak of losing you when I barely had you. You were only in my life for 2.5 months but your footprint in my life is as large as you were. I miss your tortilla chip ears and how expressive they were. I miss the showing of the belly when I walked into the room. I miss how you held your head low in submission when you were happy to see me. I miss your paw on my knee. I miss our cuddle naps while you snored in my ear. I miss how your fur on your chest made you shine like platinum in the sunlight, with a shimmer glow. I miss your emo black eyeliner, lipstick and nail polish. I miss your reticent smile. I miss your lean. Rest well, my sweet Emo Boy.

[thatgirlshines]

An intriguing #artinstallation I came across during one of my walks through #Avondale in an empty storefront. There was no indication of the #maker of this piece. #crystalpyramids of various colors line the interior with a sculpture made out of wooden sticks floating in the center. I took pictures (so many!) and then stared at it for a while. The colors, shapes, and energy of it is mesmerizing and hypnotic. #crystals #crystalart #artiseverywhere #installationart #chicagoart #chicago #belmontavenue (at Chicago, Illinois) https://www.instagram.com/p/CQTuoD2rt3j/?utm_medium=tumblr

[thatgirlshines]

To understand the origins of the evil eye, one must first understand the distinction between the amulet and the evil eye itself. Though often dubbed as ‘the evil eye’, the ocular amulet is actually the charm meant to ward off the true evil eye: a curse transmitted through a malicious glare, usually one inspired by envy. Though the amulet – often referred to as a nazar – has existed in various permutations for thousands of years, the curse which it repels is far older and more difficult to trace. In essence, the curse of the evil eye is not a complicated concept; it stems from the belief that someone who achieves great success or recognition also attracts the envy of those around them. That envy in turn manifests itself as a curse that will undo their good fortune. The concept is well captured by Heliodorus of Emesa in the ancient Greek romance Aethiopica, in which he writes, “When any one looks at what is excellent with an envious eye he fills the surrounding atmosphere with a pernicious quality, and transmits his own envenomed exhalations into whatever is nearest to him.” The belief in this curse spans cultures as well as generations; to date one of the most exhaustive compilations of legends regarding the evil eye is Frederick Thomas Elworthy’s The Evil Eye: The Classic Account of an Ancient Superstition. Elworthy explores instances of the symbol in a number of cultures; from the petrifying gaze of Greek gorgons to Irish folktales of men able to bewitch horses with a single stare, virtually every culture has a legend related to the evil eye. The eye symbol is so deeply embedded in culture that, in spite of its potentially pagan connotations, it even finds a place within religious texts, including the Bible and the Quran. - excerpts from a BBC article by By Quinn Hargitai #nailart #manicure #nailartofinstagram #nailartdesign by #chicago #nailartist @thegigijiggles #gigijigglesnailart #evileyenails #evileye #nazar #nails #nazarnailart #poipoipoi (at Chicago, Illinois) https://www.instagram.com/p/CQE9HfJrpGF/?utm_medium=tumblr

[thatgirlshines]

A #reminder from the great @yasiinbey courtesy of the city of Chicago #perspective #greatquotes #streetart #chicago #streetartchicago #graffiti #chicagograffiti #hiphipgreats #dollarday #mosdef (at Argyle station) https://www.instagram.com/p/CPXIJ-PLYbC/?utm_medium=tumblr

[thatgirlshines]

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#VisualThinking, everyone is talking about it! @griotseye and I have strong opinions on the value it brings to work and life. We were also lucky to get to teach visual thinking to Lindsey Lyman's #innovation class at University of Chicago's Booth School of Business this week. Our belief is that visual thinking is one in the set of the #21stcenturyskills. 21st century skills include: - being able to bring people along with #storytelling abilities, using #metaphor to inspire and motivate; - in a world with a lot of noise, #listening to understand; - and, in order to face the ever-increasing complexity of the #futureofwork, being able to bring people together to #codesign and #collaborate to think, solve, plan, design, and explain. We in the business world have long complained about how the time for #deathtopowerpoint has come, but what do we use to replace it? Christopher and I offer visual thinking as the new medium to tell the story. Visual thinking offers #iteration through #thinking, time to #goslowtogofast with #designing #sequencing and #protoyping, brings #clarity to what is at stake, is an invitation to participate, inspires great #teambuilding and #engagement, and makes for a great story. #21centuryleadership #graphicfacilitation #visualpractitioner (at Chicago, Illinois) https://www.instagram.com/p/CPV0bVzFIFw/?utm_medium=tumblr

[thatgirlshines]

Asking for Israel to back off and stop its war against Palestine does not mean it is ok to attack Jewish people. Many Jews do not support Netanyahu's strategies, including my friend's cute 84 yo Bubbie who lives in Israel and every week for the last 12 years goes with her friends to collect medicine, food, clothes, school supplies, and toys for Palestinian families. The Israeli government told her and her group of 80 yo friends if they continued, they would be jailed. They have harassed her and her groups of friends for all those years. Yet Bubbie persisted and she was jailed last week by the Israeli police for protesting and trying to make arrangements to send water, food and medical supplies in for her Palestinian friends. My point is, do not hold Jewish people accountable for the actions of Netanyahu's government, its cruelty and its poor choices. Oppression is still oppression, regardless of those perpetrating it. Remember, love. This is where we want to operate from. #freepalestine (at Chicago, Illinois) https://www.instagram.com/p/CPQda6DrXUs/?utm_medium=tumblr

[thatgirlshines]

What being a Knowledge Worker in the 90s at the ASE and Nutella have in common.

"If I were bigger, I could do whatever I wanted whenever I wanted and no one could tell me what to do, ever. I'd eat nutella with a spoon, directly from the jar, for breakfast with pain au chocolat. For lunch, I'd eat crepes au sucre et buerre and for dinner, I'd eat Reeses Peanut butter cups, Snickers, 3 Muskateers, and Heath bars. And a bag of Doritoes. I can't wait to be a grown up so I can do what I want, not what they want." - me at 8 years old when the adults told me I couldn't eat sugar for every meal In my early 20's, my room mates and I joked, "Popcorn for dinner and ice cream for dessert." But we were drop-dead serious, this was our most common "dinner". We were a group of creatives working at breakneck speeds for 18 hours at a time for one of the world's largest business consulting firms, week after week, hopping on and off planes with our sunglasses on and in every a new city, talking like rockstars, [whispers] "Where are we? Tulsa? Ok, thanks! [turns to the crowd] HELLO TULSA!" When we had time off, we'd sleep late, stay up late, smoke weed, watch movies like Wet Hot American Summer, eat candy and chips, and write screenplays, commercials, songs, plays, and draw/paint/build props and other art for the house and our friends/co-workers. We lived on a diet of pizza, candy, and fried snacks. At 48, with a gut undergoing some changes with peri-menopause, the thought of that life and diet literally gives me the shits. Ugh.

[thatgirlshines]

I took this photo a year ago, on April 24th, 2018. Facebook reminded me of this some time last week. I opened up Facebook on my phone and the first thing I saw was this picture. While my mother’s disease was advanced, she was able to do so much more than what she can do now. A full year later, I can see such contrasts. Her language is garbled. She has trouble saying things properly. She speaks a Frenglish, a mix of French and English, with mostly English but I can see it slowly disappearing. They tell us eventually she will only speak French and after that, will stop speaking at all. 

Her world is smaller, consisting of the dementia care home, a quiet ice cream shop visit for ice cream sundaes, and car rides. Too many people and the loud sounds they make overwhelm her. Sometimes, it’s just easier to bring the ice cream to her.

Her teeth are almost all gone. She refuses to wear her dentures. The dentist needs to remove the last of her teeth to prevent pain as they decay. She refused to play nice when she saw the dentist’s chair. Now, we have to work with the home, the NP, and the dentist to give her meds to keep her calm and docile as well as twilight for all dental procedures.  Her hygiene is something that no longer concerns her. In life, Liza was a clean freak and was known to insist on showering three times a day during the summer months, if needed. Today, she fights the aides who insist she must shower. For Easter, I had to settle on simply brushing her hair into a pony tail and washing her face.

Her moods now include slapping, biting, kicking, and punching the staff. “We’ve had a good day today, no hitting. Yesterday though, we were mad. She hit me a few times this week.” There are no words to describe how heartbreaking it is for me to hear these words come from the aides.

So a year later, we focus on doing the things she likes, ice cream and car rides. We play music she used to love. We give her lots of cuddles, hugs and kisses. We do our best to laugh with her and make her feel safe and loved. It’s the best we can do for now. I try to not dwell on the few things left that will eventually become subtracted as we continue on the path of Alzheimers.

[thatgirlshines]

Alzheimer’s changes your Mettle

Early in my mother’s disease, before we even understood it was a dementia problem, my mother refused to see me. I remember being absolutely crushed. This is the ultimate rejection, right? Your mother saying, I don’t want to talk to you or see you. I was gutted and most likely engaged in some very self-destructive behaviors to ease my general “i’m a piece of shit” feelings that her words brought out. I remember talking about it with my partner and friends, how I felt like I had committed some misstep but no one told me what I’d done and I was walking around feeling awful but didn’t know why. I don’t remember the advice I was given at the time but it was a perplexing and confusing time in our lives together because I thought I was going to spend the rest of my life in a contentious relationship not only with my biological father but also now with my mother. WTF? I’d worked so hard to try to avoid that?! Last night, I called my mother to chat. She didn’t want to talk to me. She was upset that I hadn’t called, that we haven’t scheduled a “regular” time to talk, and she was just plum mad at me. Tina, her aide, felt bad and apologized to me. I laughed as I told her, “It’s fine, really. No problem. I’ll try again tomorrow.” Last night rolled off my back like water. I couldn’t care less. I couldn’t care less because I KNOW this isn’t about me. This is about my mother and her disease. This is about her not being able to make sense of the information coming in because her brain is broken. If I felt anything, it was sorrow for her feeling that she had to be mad at me.  I wonder what goes on in her head sometimes and what makes me droop is that it is most likely a frustratingly confusing place, sometimes filled with joy and sometimes filled with confused consternation. 

[thatgirlshines]

she’s forgotten

A few years ago, maybe 5 or so, I asked my mother when she was planning on quitting smoking. She was a different person then from now, yet different from who she had been before the diagnosis so she still retained most of her crisp and cutting dry wit. “When I forget,” she quipped. We laughed at the dark humor in that reply but I had no idea that was indeed how it would happen. She started smoking at 15 and sometime in her late teens in London, she picked up the habit of rolling her own cigarettes. 

Her cigarettes were always mystifying to most people back in 70′s Detroit. People just assumed she was smoking weed. Several times, in bars and clubs, bouncers would come up to her and tell her she couldn’t smoke her weed. She would laugh and show them, “It’s tobacco, mate!” I cannot tell you how many times people were certain she was toking and how many of my friends thought my parents were stoners from all the “joint butts” in the ashtrays. She loved her Three Castles brand of loose tobacco. She tried on and off over the years to quit but she loved her tobacco. If she were herself today, she’d probably still be smoking. Here are the steps that my mother with ALZ took to quit smoking cigarettes:

1 - It started with having problems lighting them properly, lighting the wrong end. 2 - She then started having difficulty rolling her own. Her aide at the time took over the rolling.  3 - As she became less reliable with her rolling, her tobacco can was taken away (boy was she pissed about that!) and the aides left a supply of rolled cigarettes for her to enjoy when they weren’t there. She also developed a habit of not ashing and breaking the cherry off with her fingers to put it out instead of crushing it out. 4 - As her vision and depth perception eroded, her aide became concerned that she would burn herself lighting the cigarettes. She seemed to be singeing her hair a bit, or burning her nose, lighting the cig in the middle of the stick. The no ashing and crushing worsened. 5 - We  realized she didn’t know how to roll, light, ash, put out, store cigarettes any more. 6 - We talked about moving her to a vape pen. That didn’t really stick.  7 - We had to fire the aide who knew how to roll the cigarettes, and that’s when things got hard. I haven’t rolled a cigarette since I quit. I was actually shocked when I tried to roll her one and found my fingers had lost the dexterity to roll a ciggie. I was actually crushed with the thought, “I’m no longer hip and cool!” I laughed at myself. 8 - She had less and less opportunities to smoke as her aide wasn’t comfortable at how much ability my mother had lost to manage a cigarette without hurting herself. We took away her cigarettes at night, when she was alone because we didn’t want her burning down the house. 9 - It had finally become a risk too big for us to take as she was sure to burn herself and set the house on fire.  Her aide stopped the cigarette supply entirely.  10 - On Saturday, May 19th of this year, her aide sent a text saying, “Just letting you know Liza quit smoking on her own. :) Her appetite has increased a lot!” We are now dealing with the depression that sometimes follows quitting nicotine. It’s a bit of a challenge when she loses her shit but for the most part, we are thrilled she finally forgot.

[thatgirlshines]

This is not for my benefit

I was surprised by my last post and how people reacted to it. Someone messaged me to tell me that I need to get over my pain, that I need to stop using Facebook as a platform to work out my “emotional issues” around being an attention whore.  Someone ACTUALLY wrote me that. I was like... after a blank stare of 90 seconds, wait, how cute! You think I do this to get people to give me attention and empathy? LOL. You’re funny. I do not write this to get attention and Facebook validation. I do not write this because I want people to look at me, to comfort me. I do not want to be the center of the world. I know the world doesn’t revolve around me and my feelings.  I have spent the last three years working hard to get over my grief of my mother’s illness and the possibility that this is also my fate. I have seen therapists, worked with grief coaches, talked ad nauseum about how Alzheimer’s has changed our lives, enrolled in long term studies on Alzheimer’s, caregivers, and genetic disease studies. I have written at least 30 notebooks, filled with my feelings and sadness. I have drawn pictures of my grief and sadness and trust me, it’s there, I know it’s there, but I don’t have to interact with it anymore. I am not gutted about it anymore. I am at a place where I see what I need to do to ensure my mother’s last few years of awareness are happy, comfortable and safe. I am at a place where I am ready to help shepherd her through this journey. This is not about me. This is about my mother. I do this to warn those who live in an ignorant bliss of what a disease and illness like Alzheimer’s brings. I do this to help prepare those who have never thought about what will happen to their parents when they get sick. I do this to help others understand one way of managing a disease and illness like dementia.  I went through some of my unposted drafts and found this. I think this will help you understand why I write and post what I do. This is real. This is what happens. You have to prepare yourself mentally, emotionally, spiritually, and physically for this shit show. This is not about me, it is about my mother. Let these be some of YOUR lessons, reader: - With Alzheimer’s, you have to be ready for massive changes in personality, left with a very simple, basic version of your loved one. This version will not be based in reality but in their version of reality. Adjust accordingly. Do not expect them to operate in your reality. That is like banging your head on a brick wall. 

- If you are the caregiver, prepare yourself for the possibility and eventuality of your charge hating your guts and suspecting the very worst of you. They will get violent with you. Removing the knives from the house will not be a crazy idea. Grow a thick skin because that will come and go over time and you can’t let it get in your way of providing love and affection to them along with the care they need.

- You will learn how to let go of shit you cannot control, because a lot of crazy shit goes down. No plan ever goes as planned. Ever.

- You will learn what to stress about and what not to stress about. They will lose their glasses, their dentures, their clothes, their jewelry. They will knock over, break, spill, dump, and drop everything. If spilling coffee on the rug is what sets you off, you need to re-examine what is happening to your charge. Coffee stains are not worth your anger. People judging your loved for eating without utensils deserves your wrath.

- Your loved one is now an asshole. Like full time. They are difficult, disagreeable, angry, uncooperative, hard to please, capricious and subject to their mood, whether you fed and napped them, followed the schedule, medicated them at the right time, and ensured everything else was perfect that day. Nope, they don’t give a shit about your expectations and hopes, they only know what they like and don’t like.

- You need to learn empathy PRONTO because you are going to need it. Not just when they’ve asked you the same question in the last hours for the 272nd time, but because their disagreeable answers and complaints are often code for something else. You will need to learn how to identify and navigate that. Empathy will help in decoding what they are actually upset about.

- Being mindful and intentional is something you need to work on because it will demanded of you. Nothing will go well for you as a caregiver and family member if you cannot think ahead, forecast, predict scenarios, and prepare for them. Breath work will become a central focus for you on their bad days. Meditation is a good place to start with your self care. 

- You need to learn flexibility to manage the rollercoaster of emotions, moods swings, and sundown episodes. Your expectations should be none, nothing, zero, nada, zip. Just be open to what happens. Learn from each moment, what happened, how did they react when you did x, what followed that moment, etc.

- Most of the times, the bad behavior and fits are because they are feeling insecure about something else they cannot name. Again, learn to navigate their new world of language and meaning. It’s a pendulum. 

- You will need to be affectionate with them. They need a lot of reassurance and love, they need patience in understanding their moods, they need hugs, kisses, and caresses. Even if you feel that it isn’t something you can do, suck it up Buttercup. They need it, and you giving it to them will make life much easier. If you are uncomfortable with physical affection, work it out.

- Get over your squeamishness in washing them. They will eventually not understand what “Wash your nethers/butt” means. Get over your hang ups because they need to be washed and won’t be able to do it. I know, it’s your mom, it’s your dad. But they pissed, shit, and wiped your little ass as a baby. Surely, you can return this favor. 

- Finally, more than anything, don’t be afraid to tell them when they are being mean. Most times, it surprises them that someone is telling them there is a limit, and it stuns them into a momentary silence. Sometimes, they’ll laugh and demure, other times they’ll tell you they don’t care. And still other times, they’ll explain why you’re so horrible. In that case, walk away. In five minutes, they’ll have forgotten and you can bring them a lemonade to drink and see how they are feeling. 

[thatgirlshines]

the emotional struggle of disappearing is real

Some time over the weekend, my mother said, “I am having a hard time controlling the disease.” We were sitting in Big Boy’s in South Haven, enjoying junk foods like burgers, fries, chicken fingers, and milkshakes.

“Do you mean you can feel the disease getting bigger?” I asked. She nodded her head. 

“Are you getting tired of trying to manage it? Like it feels like more and more effort for you every day?” I asked. She nodded her head. I could see the shining tears beginning to well on the bottom lid of her eyes. Suddenly, as if a faucet had been turned on, tears streamed hot and fast down my cheeks. I tried to not let my lips tremble but I was already choking on the sadness.  “I’m scared,” she said quietly. 

“Me too. I’m scared for you and I’m scared for us.” We sat across the table from each other, holding each other’s hand as tears streamed down our faces. 

                            ________________________________________

Earlier in the weekend, at another restaurant, she spilled her water all over her lap. We went to the bathroom to clean up and then stepped outside to recover while the staff cleaned up the water. She was embarrassed. “I feel like a twit and that everyone thinks I am stupid.” My heart caved in as she said it, leaning into my arms and crying. I wrapped my arms around her, saying, “No one thinks you are a twit. Besides, if you are twit, that means I’m a twit. I’m pretty sure I’m not a twit. I think. I hope.” I tried to make her laugh but she was too deep in her pain of not being able to do things right. 

Instead, she cried while I held her and told her she was loved and safe.

                          ________________________________________

One morning, as I was finishing up getting dressed, after having bathed and dressed her, I was considering putting on makeup when I heard the kitchen faucet running. My partner had stepped outside with the dog so it clicked when I heard the water running that she was up to something. I walked into the kitchen to find her cleaning up the coffee grinds in the sink, washing it down the drain. My first reaction came out without thought, “Are you washing coffee grinds down the drain?! No, no, no... don’t do that!” I moved in and turned off the water, pulling her away from the sink and reaching for the wet coffee filter in her hands. She said, “Oh.” Tears sprang to her eyes and she started whimpering in a low tone, “I can’t do anything anymore. I’m sorry I’m so difficult, I don’t know anything anymore.” Again, she leaned into me. As I wrapped my arms around her, I said, “You know what? I made a mistake. You didn’t do anything wrong.” She was crying as I leaned away from her to look her in the face. “But I’m so difficult now. It takes so much to take care of me.”  My heart crushed under those words. “You are not difficult. It is my delight to be able to take care of you. It’s just that I’m not used to taking care of someone else so I’m learning as I go. I didn’t mean to make you feel like you were doing anything wrong. I’m the one who did something wrong.” Later, when I texted my dad to tell him the kitchen sink was clogged with coffee grinds, he texted back saying it wasn’t really a problem because coffee grinds help to clear out the pipes. I reveled for a quick moment that I was right about her not doing anything wrong. 

                          ________________________________________

“I used to be someone that others depended on. I used to be the one everyone wanted advice and guidance from. Now, I can’t even do the simplest things.” She leaned into the crook of my arm, her face resting against my arm, her tears wet between the skin of her cheek and my arm.  I had no words. I just rocked her back and forth. 

[thatgirlshines]

Anyone for Shit sandwiches?

Alzheimer's is a shitty, shitty disease. There is no nice way to say it. There are no pretty words that can be used to describe what it does to the person afflicted with it and to those around them.

It tears people's minds apart LITERALLY.  It kills confidence. It is a monument of disappointments and let downs. It makes anxiety the God of the universe. It stops bonding. It prevents happy reunions from ever happening. It brings familial life to a screeching and bitter halt. It shakes foundations of love to the core. It connives people into giving up.

It makes being patient hard. It makes being calm difficult. It makes voices rise and yell in anger, frustration, sadness and confusion.

It is a shit sandwich for everyone involved.

[thatgirlshines]

i’m sorry.

conversation with mom today. Me: Happy Mother’s day, Mom! I just wanted to call to say I love you and I was disappointed we didn’t get to see each other yesterday.

Mom: Thank you. I’m sorry I couldn’t come for dinner. I was just... not comfortable and I wanted to get home as soon as possible.

Me: I know. I understand, Mom. It’s difficult sometimes for you. 

Mom: I know I shouldn’t ignore you when I’m upset but it’s really hard for me to be able to stay calm and I don’t feel right until I get home and can gather my thoughts. 

Me: I know, Mom. It’s ok. It isn’t you, it’s the Alzheimer’s.

Mom: Thank you for being understanding. I know it’s hard.

[thatgirlshines]

meh... mother’s day

We were supposed to get together for an early dinner this Saturday, the day before Mother’s Day. I spoke to her this week about it and she was really excited to spend a few hours together. My dad talked to her about it and she was enthusiastic about it, telling him it would be fun to all be together. 

But the reality of Alzheimer’s is that is steps all over that enthusiasm and love, just crushes it with its fear and anxiety inducing bullshit. As I waited for the text from my dad saying they were on their way to the restaurant, I got impatient and texted him, asking for their ETA. 

He texted me back, She wants to go home right away. I texted back, I hope everything is OK. He replied, No everything is not OK.  I have enough experience with this fucker, Alzheimers, to know that my mother has been either spooked or terrified by something, something that isn’t real but imagined by the Boogey Man, Alzheimers. I know enough to know that when you plan something and talk about how much you look forward to it, it will 98% not happen because Alzheimers.

I’m disappointed. Of course, I want to see my mother and have the opportunity to be in her presence, to be able to thank her for giving me everything I have. But Alzheimer’s always takes it away from me. I’m sure my dad was looking forward to the three of us having a good time together, enjoying each other’s company, laughing over nothing and sharing our stories, like we used before... before the Boogey Man.

Yesterday, a friend from high school posted about how Mother’s Day is hard for her because she lost her mother. I can relate to her sadness and loss. My loss is different because it is happen one neuron at a time and there are moments when I feel like I get the joy of experiencing all these little deaths, wondering what did I do to deserve this? I don’t believe in God in a religious sense. I don’t “Let God” and other shit like that. I understand that life is crapshoot and there is no rhyme or reason for what happens or how it happens, I don’t believe in destiny or fulfilling life purposes, that it is written in the stars what will unfold, that a psychic can tell you “You will become a famous writer and live with cats on an island” and really mean it.  I know I’ve done nothing to deserve living these sad little deaths of my mother’s life and personality to Alzheimer's. I know she didn’t do anything to deserve something as atrocious and repugnant as losing the memories of her life and experiences, becoming afraid of the world and all it has in it. It just stings. I don’t know what’s fair to think and feel anymore, if I’m being a whiny little bitch who needs to get a grip and just accept the fact that this is my reality.  So fuck Mother’s Day. I wish I didn’t have to say that but right now, it’s the only thing I can say.

[thatgirlshines]

Moments are precious

A few weeks back, an amazing thing happened. While discussing my mother's condition with her, she suddenly had a moment where she remembered she was my confidante and advisor. "My disease must be difficult for you." I could say nothing. I was struck mute from the giant lump in my throat. My mind was racing, trying to focus on the moment, to record every minute detail so I could replay this memory in my mind as the last time my mother acted like she used to, caring, compassionate, nurturing, as my mother and best confidante. So many thoughts were viciously fighting to be heard as I tried process an answer. I had been lamenting this for months prior, that not only was I losing the woman who was my friend and hero, but that she was no longer equipped to be my soundboard and advisor, the only one who could truly comfort my wounds from living in the world of savagery we inhabit. I mean, she made me, she knew exactly what I was made of and what I can and cannot tolerate. She was the only one, besides my grandmother, who knew what my personality is made of, the parts that come together to make who I am. She has been my partner in this life since my first breath, knows all that I've endured and overcome, has held my hand through the peaks and valleys. She knows my history better than me since she is the one who molded me from the time she pushed me out into this world. It is she who identified what her child's weaknesses and strengths were, it was her who nurtured my talents and loves, helped draw out some of the finer parts of my personality. It was she who taught me compassion, to be skeptic, to be considerate of others, to care for others, to strive for harmony. While she herself was not so easy to forgive others for transgressions, she instilled in me the importance of forgiveness. Without her these last few years, I have felt lost and unbalanced, cursed and lost. It is terrible but I don't trust others with my secrets the way I did with her? Even my partner of 10 years, I hold back some things for fear of his judgement, of him not "getting" me. I am not prone to letting myself be vulnerable, I am too proud to let others know my hurts, fears and insecurities. I have grown up with the idea that I am stronger than others, that I am the one who helps others be weak. But with my mother, I was not afraid to let those things out. It's hard to have that connection and then find it has faded away. My therapist has been helpful but not the degree that I could "be myself" with my mother. I silently nodded my head yes. She stood up and came to me, wrapping me in her frail arms as I wept like a baby. I let it all out. She caressed my hair and back and told me it would all be ok. My body shook with months worth of sadness, all this shit that I had been balling into a tight package and trying to push down, pretending it wasn't there. I was trying to be strong for those last few months and this moment was the floodgate opening. I kept saying, I'm sorry and I love you so much. She just stood holding me while murmuring, it's ok. I cannot tell you how much I would give all that I own, including my body and soul, for more moments like that with my mother again. I am an almost 44 year old woman but all I want is my mommy, like a 6 year old would. I do not expect another moment like that again. I know this disease can surprise you with moments of complete clarity but at this point, I don't know how many more are left in her. My dad has shared a few moments like this with her and it is such happiness at the moment, followed by the maudlin realization that it could be the last time. It's all so fucking unfair, yet it is so normal. This is the rhythm of life and death. I envy those who go to sleep and never wake up, or have a stroke suddenly, without any pain, and are gone. I have gone back and forth on what's worse, death by cancer or death by Alzheimer's... And I keep coming back to the same idea: all of it sucks and it is the cycle of life and death. However death comes to us, it's a shitshow, it's unfair and not what our simple human minds are allowed to comprehend. This long, drawn out goodbye is exhausting. Sometimes I hate it, that this is her end. I buck and strike out at it in frustrated, heated ire. My dreams are full of long screams of "Why?" and "No" when I realize what track we are on. The train of my dreams speeds headlong into this disease and my dad and I are strapped in, with terror on our faces as we watch her fly out of the train, away from us. Those dreams are more exhausting than an 18 hour work day. I just want to have a night of peaceful sleep again.