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. :-)