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Showing posts with label caregivers. Show all posts
Showing posts with label caregivers. Show all posts

Picasso and Ellie's Blue Period





The only thing that is going to cheer me up today is Pinterest for fucks sake. Thank you Jesus for Pinterest! I’m not so much depressed as I am frustrated. I am just frustrated that I’m the only smart person in my house. Don’t believe me? Well, let me give you today’s synopsis…

 


Against my better judgment, I was forced to go outdoors today in the freezing Parisian air. My husband thought it would be a good idea for me to get some fresh air and go to the newly reopened Picasso Museum because he knows that sort of thing makes me happy. Well, not fucking today. It takes a village to get me ready to go outside. It takes two people to dress me, put my makeup on, put on my hat, coat, gloves, get a hot water bottle ready blah blah blah. I am so high maintenance that I should be legally “put down.” I realize how obnoxious I can be insisting that my caregivers get everything situated just the way I like it. However, that scenario never happens. Nothing ever goes smoothly. Without fail, under my breath, I am saying to myself, “All of you are morons.” Let’s start with putting my shirt on… Even though my caregivers and my husband have been putting on my shirt on for what seems like decades, they can never seem to make it a smooth transaction. Somehow my arms always get twisted, and I end up half naked in front of my windows for all the world to see while they discuss the best way to take my shirt off. So today I was forced to yell, “Just make a decision and commit to it!” Then, not surprisingly, while my caregiver was taking his sweet time putting my arm into my T-shirt sleeve, my husband was wrestling my other arm into my sweater sleeve. Then, the two morons finally got my sweater over my head (nearly suffocating me) and I was forced to yell, “You put my sweater on backwards!” Now we had to take it off and go through the whole process again. I was already at my wits end and decided that the Picasso Museum wasn’t worth this kind of hell. Sorry Pablo. Apparently that was just too bad for me because my husband was forcing me to go… So I decided to become super bitch as his reward. Dumb and Dumber continued attempting to get me dressed and finally after 3000 attempts, I was nearly ready. However, now I needed makeup. Have you ever had a non-gay male put your makeup on? The movie Rocky Horror Picture Show comes to my mind. Just after my caregiver finished putting on my Dior Diorshow mascara, my husband immediately slammed my entire knit hat over my eyes and back up again smearing all of my newly applied mascara all over my eyes and halfway up my forehead. I think it is fair to say at this point that I hate my life.


We finally get downstairs and start our walk to the Picasso Museum. On a warm sunny day this is a pleasant 15 minute walk. On a day like today, it is a cold unpleasant 12 hour walk. I suggested we take an Uber but nooooooooo that would just be too sensible. 10 minutes into our walk, it starts to snow… On me. We were already too far from our apartment to go back yet too close to the museum to find a taxi so we just kept walking. Even though I was swathed in head to toe cashmere and a hot water bottle tucked under my cashmere blanket, I was still freezing. The good thing about a Parisian walk is that no matter how cold it is outside you are always distracted by something amazing. Pastry shops, chocolate shops, flower shops, antique shops etc. Even though I was freezing and most likely contracting the flu, meningitis, mononucleosis, and Ebola altogether, I still wanted to stop and look in the little shops. However, this was not to be. Why? Because Tweedledee and Tweedledum were thoroughly entrenched in a deep conversation about nothing in their secret code language (French) and could not hear me ask to stop pushing my wheelchair so I could look in the windows of the shops. I saw a darling little shop that looked like an old-fashioned candy shop but was actually a pistachio shop. A pistachio shop called La Pistacherie. I deemed it imperative that I visit the shop . This is one of the reasons why we live in Paris for God sake! You cannot really experience the magic of Paris in a car… It has to be on foot. The little sidestreets are where the jewels are. This is how Gracie and I found (10 years ago) our favorite Thai restaurant, Mai Thai, on a little street tucked into the oldest part of Paris called the Marais. Definitely a locals only joint with authentic Thai food like coconut lemongrass soup. We even sat next to Leslie Caron once. Off the beaten path is always the best choice. I think that could be a metaphor for life as well. However, La Pistacherie would not be for me today as my luck was already on a downward spiral. Without my breathing machine my voice is at a whisper. It is no match for the busy streets of Paris. No one could hear anything I was saying. That’s really safe. They just flew right past the pistachio shop without hearing a word I was saying. So now I was freezing and being ignored. A recipe for disaster.

 


Finally, we reached the Picasso Museum but not before my husband got lost for about 20 minutes. I have only pointed this out that he got lost because two hours before when we were at our apartment I suggested we take an Uber so we could get there quickly and without frostbite. My husband egotistically screamed at me, “The museum is only 10 minutes away. I have lived here my whole life and I know exactly where it is. We can walk!” After five hours we finally reached the museum. Good news/bad news: we got into the museum without waiting in a two hour line and we got in for free. The bad news is that you have to have ALS to get this special treatment.

 


So now that we were there, I tried to cheer up and just enjoy the museum. The Picasso Museum has been under construction for the past five years and oh my God it was worth the wait! There’s a great article titled, Nightmare at the Picasso Museum, detailing the long and sordid story about Picasso and the museum itself. Click here to read. When Gracie was young, I took her to the Picasso museum on a friend’s suggestion. I have never really been a huge Picasso fan but after visiting the museum I was smitten. By the way, on a side note, the friend who suggested that I go to the Picasso Museum had an affair with one of my dearest friend’s husband. I actually couldn’t believe it and thought it was only a rumor so I took my friend, the homewrecker, out for coffee and told her to give me her side of the story. I kid you not, she totally admitted to the affair without a blink of the eye. I said to her, “How could you do this? You are friends with the husband’s wife! Your daughters are friends!” Her response to me was, “Ellie, I’m in this for me.” Obviously. So, I was forced to abandon our friendship and publicly shame her which is too bad because I truly liked her before I knew she was a selfish, greedy homewrecker. Anyway, obviously all of this negativity was going through my head as we were touring the new Picasso Museum. Then I started to get a little bit of a headache. Then, the museum was so packed that I started to feel a bit claustrophobic. Then, because I was so wrapped up in arctic weather clothing, I started to overheat. Then, I started to slightly hyperventilate. I didn’t want to put on my breathing machine for the simple fact that I didn’t want to look ugly. I figured I would rather die in the Picasso Museum than have a breathing machine stapled to my face. Then, the combination of all of this forced me into a full-fledged panic attack. I had a little internal chitchat with Pablo Picasso and explained the situation to him and told him I would be back to the museum in the spring when I wasn’t so stressed out. He said that would be fine.

 


I told my husband that we needed to leave immediately. He blurted out his standard go-to-phrase, “Putain de bordel de merde de pompe a cul!  We just got here.” I didn’t care. I saw three floors of the museum and that was enough for my delicate disposition today. My husband reluctantly agreed to leave if we could just see one more group of paintings. Fine, I agreed, because I’m such an amazing wife. The next series of paintings were Picasso’s bull fighting interpretations. My caregiver said to David, “Did Picasso like bullfighting?” My husband thought he said, “Do you like bullfighting?” So, my husband went into an entire conversation about why he, himself, doesn’t like bullfighting.” I was forced to scream at him, “David! He didn’t ask you if you liked bullfighting. He asked if Picasso liked bullfighting. Why would he ask you if you liked bullfighting, you narcissistic moron.” I honestly just couldn’t take it anymore and demanded that we leave the museum because I was about to implode. Then, because nothing was going right for me today, my husband pushed all of the wrong buttons in the elevator and it took us 20 minutes to get to the ground floor. Well, my husband thought it was the ground-floor but it wasn’t so we had to get back on the elevator and find our way to the exit floor. Before that occurred, I was forced to give a family a vicious stare down in the elevator. Why do healthy people take the handicap elevator? I think that they should be fined $100 and then punched in the face… including the lazy little children.

 


Hallelujah! We finally reached the exterior courtyard of the museum and I could catch my breath and relax for a second. My other caregiver arrived to start his shift and give my morning caregiver a break. However, in true fashion, my caregiver realized that he left his backpack at our apartment. We only had one set of keys so David had to give my caregiver the keys to our apartment so he could go pick up his backpack. We asked him to hide the keys in our secret spot after he got his backpack and we told him that we would be home shortly. He agreed and started to walk back to our apartment ahead of us. I told David that I really needed to get home because I wasn’t feeling very well. He kept asking question after question… “No, David, I don’t want a pastry. I just want to go home. No, David, I don’t want a falafel. I just want to go home. No, David, I don’t want a Starbucks. I just want to go home.” Then, it started to rain… On me. I was forced to scream at David, “Hurry David! Hurry! Get me home!” His response, “Relax, are you going to die?” My response, “Yes, as a matter of fact, I just might. Do I need to remind you of that cute little respiratory illness last month that nearly killed me?” David picked up his pace and within 10 minutes we were home.

 


But guess what? There were no keys left in our secret spot and no caregiver to be found. I told David that I felt like I was being taking care of by baboons. Where was the caregiver and where were our keys? All I was looking forward to was my warm bed and a piping hot cup of chai tea with warm soymilk and two sugars but nooooooo… We now were sitting in the freezing cold entry of our building… Locked out. Call after call we made to the caregiver but no answer. Where the fuck was he! He left before us! After about 15 minutes, he shows up and I was forced to say with an ever so condescending tone, “Where were you? Did you stop for a beer? Did you go to the park? Did you stop for an espresso while I am waiting in the cold for you?” Guess what? The person that I trust to take care of me… The person that I trust with my life… That person, got lost. I asked him why he didn’t use his GPS on his cell phone and guess what? He left his phone in my apartment as well. I was forced to say to him, “Do you remember when I called you a moron this morning when you put my sweater on backwards? Well, do you blame me?”

 


When the two caregivers and my husband finally managed to get me all cozy in bed, I honestly just wanted to go to sleep and forget the day but I had a funny feeling I should call my friend Yolanda immediately. Even though it was early in California, Yolanda answered the phone via face time and before I could finish my sentence asking her how she was feeling with her Lyme disease, she started crying and then I started crying. Sometimes, no matter how strong you are a debilitating disease can just get the best of you. Today was that day. I love my Yogi so much and I wanted to offer her reassuring advice but I just didn’t have any. So we just cried for a little bit. Then I told her about my horrible day and we laughed for a little bit. We are both so sick of being sick and would do anything to get our lives back. I know everyone out there with chronic/terminal illnesses knows what I’m talking about.

 


So, after I got off the phone with Yolanda, I decided that I could either let the rest of the day go to shit or I could do something that makes me happy. I chose the latter. Enter Pinterest. I reminded myself that there is good in the world and that good, for me, comes in the form of decorating. Architecture, furniture, antiques, art… All of that stuff just makes my heart swoon and makes life bearable. Then I thought that we don’t really talk about decorating as much as I would like to on the blog and I decided that now we are going to. It is my passion so it is now going to be your passion as well. Just kidding. No, I’m not. I decided to take a house room by room and discuss it with all of you. If you don’t like it, please feel free to go read another crappy blog. Just kidding, I’m still a bit grumpy. Sorry. But honestly, if decorating doesn’t cheer you up, I don’t know what will. Food will but we can still do both. So, for the next few weeks let’s talk about decorating and also continue our 15 culinary dishes to master. Deal? I will try to pepper the blogs with other stuff as well so we don’t bore ourselves to death.



Tomorrow we’re going to start with entries/foyers/vestibules of a home. We can never make a first impression twice so the entry is almost the most important room in the house. Stay tuned and I promise I will come back with a super positive attitude tomorrow… Maybe. Just kidding, I promise I will.
 


To sum up my brilliant/not brilliant day, after reading about the trials and tribulations of the opening of the newly remodeled Picasso Museum, I have to say that it’s definitely worth a visit. You can skip waiting in line by ordering tickets online. Easy peasy. Or you could just get ALS and go through the handicap door, your choice. The building that houses the collection is a magnificent 17th-century hôtel particulier, Hôtel Salé. The central staircase is based on the stair plan of Michelangelo for the Laurentian library in Florence and is worth the visit alone. I advise doing a little background research on Picasso and his art because it makes the visit so much more enjoyable when you know the history behind each piece. For example, did you know that for Picasso’s whimsical Bull’s Head sculpture that the items were “found” during the dark days of World War II? According to PabloPicasso.com, “Bull's Head is described by art critic Eric Gibson as unique amongst Picasso's sculptures for its 'transparency' - the constituent found objects are not disguised. He says the sculpture is "a moment of wit and whimsy ...both childlike and highly sophisticated in its simplicity, it stands as an assertion of the transforming power of the human imagination at a time when human values were under siege." I mean, c’mon, if seeing that in person doesn’t float your boat, I don’t know what will.

A toute!


Today's Novella… The Dream Team.


Today’s blog is about my caregivers. This could bore some of you but those of you with caregivers it might be slightly interesting and make you laugh. There will not be any photos (if you need photos, go to Pinterest) today because most of my caregivers are undocumented and I don’t want them arrested and hauled back to their countries where the minimum wage $.35 a day. And also, today’s blog is kind of long so if you have ADD try to check it today and get through the blog. :-) We will definitely get back to our cooking series tomorrow… Spaghetti carbonara… But today it’s all about caregivers.

Remember when Yolanda got so much backlash when she called some of the girls her “Dream Team” on The Real Housewives of Beverly Hills. That was funny. Well, I’m going to use the word… Dream team, Dream Team, Dream Team! Yes, it has finally happened… I have my own personal Dream Team. I’m talking about my caregivers. By the way, my husband always annoyingly calls my caregivers my “caretakers.” It drives me crazy and I have to scream at him, “They are not caretakers! A caretaker takes care of property and horses, not your ailing beautiful wife, you Dingdong.” Yes, we have a very mature relationship. Anyway, back to The Dream Team.…

After I was diagnosed with ALS in June 2011, I needed a caregiver almost immediately. I remember going to my kitchen, opening my refrigerator door, grasping the handle of the milk container (half-gallon) and I started to pull it out to put it on the kitchen island and BOOM! It dropped to the floor. One month into my diagnosis and I could not lift a container of milk? Well, this looks like it’s going to be a fun ride. No one was home with me so I just left the milk on the floor and then I kicked it. I was furious that I knew that I would need some help. The last thing that I wanted was someone in my house helping me brush my teeth!

I had no idea what I was getting myself into with the world of caregivers. Looking back, I now feel like I have enough experience with caregivers to tell you that most caregivers should not be caregivers. Honestly, the only caregiver anyone should ever have is their mother. However, since I don’t have that I have to rely on mostly morons to take care of me. Let me state for the record that I would be a horrible caregiver. I don’t even like when someone else blows their nose. It grosses me out. David was sick a couple of weeks ago and I literally wanted him to move out of the house until he was better. These past four years with my caregivers has been quite a challenge and it has been a hilarious road…

I knew I didn’t want someone “hovering” over me so I decided to hire my housekeeper as my first official/unofficial caregiver. She was already at the house so why not? I cannot remember her name but I knew I liked her. She was from Mexico and on top of cleaning my house and watching over me she made the best breakfast burritos with homemade salsa that I have ever had. Unfortunately, two weeks into her job at my house she fell while she was Texas line dancing and broke her thumb and finger. Apparently there was some nerve damage and she showed up to my house with a giant bloodied disgusting Band-Aid over her thumb and finger and said, “I can still make you salsa.” Uhhh, no thank you. One caregiver down.

My second caregiver has been my favorite so far and I love her with all of my heart. Paulina. Paulina has been through the trenches with me and I will always be thankful for her. Paulina started as my housekeeper as well and just morphed into my caregiver. Paulina is from Mexico and did not speak one lick of English but somehow it didn’t matter because she knew exactly what I needed. Paulina saw me go from a girl who could walk and use her arms to a girl who could do nothing for herself. It was a gradual decline and Paulina was there for me every second of the way. Paulina did not judge me when all of my friends came over one night and drank all the alcohol in the house, smoked 400 cigarettes and sang karaoke until 4 o’clock in the morning. I did not judge Paulina when she drank tequila shots and smoked cigarettes while she took care of me. Who cares. Paulina hated Gracie because Gracie left little trails of messes wherever she went. Paulina went everywhere with us and has seen every squabble between David and I for two years and she didn’t care and luckily she didn’t call the police. I owe Paulina my life because she saved me from two German Shepherd attack dogs that were on top of me. (Long story, it will be in the book.) When Paulina put me in the car for the last time as we were leaving for Europe, she looked at me and I looked at her and we both started crying because we knew it was the last time we would ever see each other. That’s the nature of ALS.

I had a quick caregiver whose name I cannot remember. She lasted about a week. She was a super organized, super pretty, super bitch. She helped me organize Gracie’s entire graduation party and on graduation day super bitch decided not to show up for work so I had no one to help me with Gracie’s party. Luckily my sister was there and super bitch met her match with my sister. My sister fired her via text as fast as you can say, “New caregiver please!”

My next two caregivers were psychotic. I don’t even remember their names. I think they were from Peru. We took the both of them to France with us and from the airport in Los Angeles, David and I knew there was going to be trouble but it was too late… They were coming with us. Their family acted as if we were kidnapping them. They started fighting with each other the second we got to France. One thought that the other wasn’t pulling her weight. One of them left every day to go to the casino which just infuriated the fuck out of the other one. David and I secretly called them Tweedledee and Tweedledum. At one point, Tweedledee pulled Tweedledum’s hair so I knew it was time for them to go. Even though I was furious at them for their behavior and for the fact that David now had to pay for their flights back to America after only three weeks, I acted like a lady and politely said, “I can see that you are not happy here so if you would like to return to America, feel free.” Well, apparently this did not go over so well with my nosy sister-in-law who marched over to me and said, “Eleanor, we don’t do that in France.” I did not speak to her for one year. I ignored my sister-in-law and her unsolicited French advise and sent Tweedledee and Tweedledum back to America. We are now down two more caregivers.

My next caregiver, Virginie, was actually a French teacher. She was on a break from her job and needed work so we hired her. She was great. We sat out in the sunshine every day and she gave me French lessons. The incident with my sister-in-law started World War III at my husband’s family’s house where we were staying so I was forced to move to Paris. Poor me. However, I did not have a caregiver in Paris. Virginie suggested that I hire her sister who was a caregiver in Paris. Perfect, I thought. Not so fast… Her sister turned out to be kind of a disaster. She was nice but had her own personal demons. I started to put her story together bit by bit. It turns out that she was a former meth addict and did not even have custody of her own children and yet she was a caregiver! She would take calls from some guy, ask to borrow my clothes, go out all night and not show up for work the next day. If my caregiver does not show up for work that means all hell breaks loose at my house. She insisted that I meet her mother-in-law who claimed it to be a Cambodian Princess in exile in Paris. Okay, and I am a Rockefeller. On top of all of that, she would insist on doing my makeup. She was convinced that I looked beautiful but I actually looked like a French prostitute. So, I had to let her go and now we are down another caregiver. How many is that now? 45?

My next caregiver, Fode, was remarkable in every way… Good and bad. Fode was a tall, gorgeous, tattooed African Muslim who only spoke French. He was a complete dichotomy. He practiced his faith religiously during the day and then at night he was a completely different person going to clubs. Fode loved fashion and was always impeccably dressed and would choose my outfits for me. We spent most of our days out and about around Paris. I took him to the Azzedine Alaia exhibit because I knew that Fode would be inspired because our man Fode made clothing in his spare time. After our museums and exhibits, Fode and I would go to a café and drink wine. I would have a glass and he would have three. He would talk to about 15 girls on the telephone and then call his wife. His wife wanted to talk to me because she did not believe that I had ALS and that her husband was my caregiver. This is how the conversation went… “Yes I have ALS, yes I am paralyzed, no, I’m not sleeping with your husband.” Fode would spend the mornings at my house checking his Facebook account, drinking wine and having French bread and then he would go to the bathroom and secretly pray to Allah five times a day. He treated me with the absolute utmost respect and we laughed all day. He protected me like a sister and he thought Gracie was hysterical and was very protective over her as well. My mother, who was staying with me in Paris, was totally rude and dismissive towards Fode and made it apparent that her hillbilly racism never left her Southern roots. I adored Fode. Whenever he could not button up my pants because I was such a fatty he called me Madame Kilo. However, he was the most unreliable caregiver I have ever had. He never arrived to work on time even once. 50% of the time he just would not show up. But for some reason, we could never get mad at him because he was so sweet. Finally though, we had to part ways because I actually did need a caregiver… Not a buddy. Another caregiver down.

Enter Nabin. My beloved Nabin. He is a little bit like David in that you love him and hate him at the same time. Nabin has been my most loyal caregiver and has been with me since I got to Paris. We have been through everything together. I can honestly say that I trust him with my life. We have been to every museum in Paris together, he has pushed me in my wheelchair countless miles around Paris, lapped the fleamarket with me for hours, dined with us at every restaurant, traveled with us, gone through every emergency hospital procedure with me, cooked for me, had to take my cat in a taxicab to get neutered, had to pick up all of my “necessities” at the pharmacy including Microlax (don’t ask), bathed me, brushed my hair and put my makeup on. Nabin is from Nepal and does not have a mean bone in his body. However, he thinks that vacuuming my apartment is beneath him even though he sees David do it every day. Nabin doesn’t give a shit about my “famous friends or my fabulous life or my gorgeous boobs” and that is why I like him. Nabin basically sits in the other room and ignores me… Like my cat. I like that about him. He is also the only person that I feel comfortable with sleeping at my apartment when David is gone. Sometimes he has to get up 15 times a night to help me. He has only gotten passive aggressively pissed off 400 times. I’m pretty sure he drugged me once with a sleeping pill but he’s not saying. He sort of likes Gracie but it is her fault because she is a mute around him. Nabin still works for me or maybe he doesn’t… I don’t know… I hope so.

Next up, Aminata. Aminata looks and smells like sugar. I have never met anyone with such a pure heart. Aminata is however, not Team Ellie. She is Team David. She treats me like her own child… Like her fifth annoying child who wasn’t planned. She is the mother of four children and does not have time for my bullshit. She is all business. She is an African from Mali and a devout Muslim who only speaks French and her native language. Aminata looks at me and says in French, “I’m going to go pray for you.” I know what that really means. What she really means is, “You obnoxious, spoiled little America. If you knew what the real world is all about, you would crumble.” She spent the summer in Mali and upon her return I said to her, “How was your trip to Africa? Did you come back with Ebola?” She just rolled her eyes at me. She changes her clothing five times a day into a beautiful Muslim gown and goes to the bathroom and prays for my sorry ass. She and David secretly mock me in the kitchen the entire weekend in their secret language (French). She cannot make toast, she doesn’t understand the concept of a peanut butter and jelly sandwich, and will not order anything when we go out to eat. She thinks all of our food is disgusting. When she feeds me my lunch she usually doesn’t use a fork (mostly her fingers) and I am horrified but I don’t want to hurt her feelings so I say nothing and expect the worst. Do they not use forks in Mali? When she pushes my wheelchair down the street it is as if I have a bodyguard. I actually feel like I am her oversized retarded baby in a stroller. I have actually seen her physically push people out of my way. When we are at the farmers market, she snaps her fingers at the vendors so that I will be able to select my vegetables first.  I know she loves me because when I am sad or scared she hugs me into her bosom and we all know that that is the safest place on earth. She likes Gracie. Gracie is scared of her.

Next up, Fofanna. Fofanna is a dropdead gorgeous African Muslim from Sierra Leone. If our lives had been different, I am sure that Fofanna and I would have been best friends at my all-girls private school. She would’ve been the cool pretty girl at school that everyone wants to be friends with. However, unfortunately, Fofanna was not as lucky as I. She comes from a family that never let her step foot inside of a school. Her family believed that school was only for the boys. Fofanna cannot read nor write but speaks two languages which is more than I can say for myself. She shows up at my apartment with a different headscarf every day and looks like a fashion model. She also, five times a day, heads to the bathroom and prays. She hates violence and loud noises. Fofanna cannot cook and has no idea how to “keep a house.” I asked her one day to trim my flowers and put fresh water in the vase. She came back a few minutes later with a vase full of fresh water and a bouquet of just flower stems. She had lopped off all of the tops of the flowers. All I could do was laugh. She is scared of David and never knows how many hours she has worked because she cannot count so we just pay her extra because we love her extra. She absolutely adores Gracie. Unfortunately for me, Fofanna got pregnant and can no longer work. When she told me that she was pregnant I must have given her a funny look because she said, “No, you cannot have my baby.” Another caregiver down…

Ugh… Daniela. Caregiver number 472. I am going to be fair and point out both Daniela’s attributes and her faults. Daniela can cook and clean and organize better than anyone I have ever met. She is a high-class housekeeper. She has worked for Nina Ricci, Keanu Reeves and Jennifer Lawrence in Paris. However, she is also a high-class pain in the ass. She came to work every day with some sort of problem and complained every day and all day. She had to spend the night with me once while David was out of town. Thank God I had Gracie as backup because Daniela fell asleep on the couch after watching 12 hours of the French version of America’s Got Talent and I screamed for her for a solid half hour in the middle of the night and she did not hear me. I could hear her snoring. Finally, after 45 minutes, Gracie was in the guest room sound asleep and heard me screaming and came to my rescue. Daniela acted as if nothing was wrong. Thanks caregiver number 472. I put up with it for a while because she straightened my curtains perfectly but as the months progressed I honestly thought she was bringing me down. Part of my survival with ALS is having a positive attitude and I cannot be surrounded by toxic people no matter how good their Boeuf Bourguignon is. She also stole a pack of cigarettes so obvs, I had to fire her. Excuse me, I mean, “Let her go.” Gracie hated her.

Caregiver number 473… Can’t remember her name. We hired her on a recommendation from Aminata… They are cousins. She came to my house, said she would pray for me, went to my living room and plopped her fat ass on my 19th century Napoleon III chaise longue… And fell asleep! That was her first and last day working for us.

I interviewed an Algerian girl for the caregiver position but I was pretty much convinced that she was going to kidnap me, take me back to her country and sell me as a sex slave. I saw the movie Taken for God sake. When I told Gracie this, she said, “You’re so full of yourself.” Regardless, she was not hired.

I also interviewed a Moroccan girl for the caregiver position but I was pretty much convinced that she was a practicing witch. Not hired.

I also interviewed an Indian young man who was impeccably dressed. However, both of his eyes were going the opposite direction and it quite honestly made me dizzy. Not hired.

Next up… Ayra. Ayra, Ayra, Ayra. Bless her heart. Ayra is a trained nurse from the Philippines. She was the one that was here during my respiratory illness. Poor little Ayra. She just didn’t have the strength to deal with David and me during a stressful moment. I think we quite literally scared her to death. The look on her face during the entire week was of sheer terror. Scared that I was going to die, scared of David, scared of me, scared David was going to kill me, scared I was going to kill David and just scared of the whole situation. Trauma nurse she is not. I kept telling her that she needed to be proactive and aggressive. This was not in her nature and I could not force it. I did not feel safe with her even though I adored her because she was so sweet. She was also late all the time. Sometimes two hours late. David could never pronounce her name either so we had to let her go. The only problem is that I do not have the heart to tell her that she does not work here anymore. I am not good with those kinds of things contrary to popular belief so I just haven’t called her. I promise I will today though… Or tomorrow. Not sure if she liked Grace.

Enter Part One of the Dream Team… Victor. Victor is Ayra’s cousin. He is by far my most favorite caregiver along with Part Two of the Dream Team… Joel. Let’s start with Victor. Victor has a heart of gold and calls me Madame… So obviously what’s not to love? He is strong, smart, gentle and he can do laundry like nobody’s business. Even though he is totally straight and has a girlfriend… I know that there is a gay man hiding in there. He literally does everything perfectly. I have never had this in a caregiver. They always fuck up somewhere but not Victor. You should see the way he makes my bed… It is as fluffy as a marshmallow , my curtains pleats are perfect, he makes the best tea, organizes my accessories, hand washes my cashmere sweaters, perfectly dresses me, arranges flowers, is a great photographer for Instagram, always gives me a little spray of perfume, puts my hair in the perfect chignon, handles my feeding tube with care, does my makeup like a pro, and takes care of me and my house like a champion. He is also the one who helped me with my books. Every time Victor is leaving the apartment after his day with me I always yell, “You’re my favorite!” I’m not used to such good care and I feel like the Queen of Sheba. On top of all of this, Victor’s smile melts your heart. When he smiles at you, you almost want to cry. And he also likes Grace.

Completing The Dream Team is Joel. He is Filipino as well and I can tell you with the utmost certainty that he is so overqualified for this job that I’m actually ashamed. He needs to be working at an embassy somewhere as Chief of Protocol. He speaks three language fluently, can cook French, Italian, Chinese and Japanese, he does my blog perfectly, knows how to perfectly set tea, makes sure I have all of my medicine on time, is so polite it’s disgusting, and makes me feel safe, secure and well cared for because he has confidence in himself. This is new for me. Dare I say it in fear of jinxing it? I’ll just say it… He is the best caregiver I’ve ever had. And he likes Grace.

So, there you have it… After four years of ALS, I finally feel like I have the right team. Now let’s just hope they don’t quit.

*Something you don’t know about me? I could not write my blog yesterday because of the terrorist attack in Paris. Gracie was in the neighborhood where the shooting was. She was terrified and I felt helpless. I called an Uber car and it picked her up within four minutes at her front door and brought her to my apartment. We sat in my bed all day watching the news, horrified by the events unfolding. My first reaction was that I felt bad for all of the peaceful non-radical Muslims. These are the people who pray for me and take care of me. My morning nurse who gives me a bath is Muslim and she told me today that she does not feel comfortable wearing her headscarf on the streets of Paris today. That made me sad. There are bad seeds in every religion who “over interpret” the word of their religion and I think it’s important that we do not judge one religion as a whole. Okay, that’s it for today… Carry on. :-)