ALZHEIMER'S ON THE OUTSKIRTS THE HOUSE IS SAD I've been living in Cidade Dutra for five years. Before moving here, I lived at Avenida Paulista. I've moved because everything is cheaper here. I live with my mom, Mery, and my aunt Leonor. I've never been married, and I don't have children. I dedicated myself to my family... and the time passed... My mom was living with me and then it went on like this and I ended up never getting married. Then my aunt got sick. I just set it aside. My routine pretty much involves taking care of them,

I do the housekeeping... Sometimes, when I feel like it, I cook, I do the groceries, I go for a walk with aunt, to make things easier for my mom, because she gets tired. Because of Alzheimer's, she has short-term memory loss. She says, "Good morning". A few minutes later she says, "Good morning" again. And this goes on and on... That's tiring. Mom, I've already done the dishes. It's all set. Ok, sweetie? -Just relax. -Ok. Everything is under control. Just keep an eye on Mery, ok? Poor him! She helps me in everything I do, and I help

her in whatever she is doing. We do everything together. Can you chop the mint for me? If you bring her close to you, and ask her to do something, if she takes it in, she does it. If not, she starts and then she drops. Let me turn off the stove, doc. Just a minute. Let's go. The doc wants to talk to you. Go on! Who is it? He is just greeting you on your birthday. Ms. Leonor, -how you've been? -I'm fine. -Are you alright? -I am fine. -Do you know it's your birthday today? -No. -You

don't know? What am I to you? -The neighbor. -The neighbor? Aren't I the doctor? -No. -Just the neighbor? -The doctor! Ah... doctor. Doctor. She forgets more every day, you know, doc? Dear God! This is like that song "Cantiga da Perua", you know? It gets worse and worse. Each day she forgets a little bit more. It's so hard. We increase the dose of the medication according to the symptoms she presents. Yes, sir. He said that is going to get worse every day. I know. Sadly, the disease will evolve. So, I will have to hire a caretaker.

Then, I'll be off the hook, you know? She will end up in a vegetative state. That is expected. Alzheimer's is degenerative and progressive. It has no cure. My aunt has always been known as a great store executive director. She started working at this store called For Men as an employee. In a very short time they promoted her to manager. Soon after she was managing three stores. In the end, as indemnification - which would be a fortune - the stores were passed on to her. In the '70s and '80s everything was great! The stores were very

successful. So much that we bought an apartment at Av. Paulista, another one in Guaruj*, and a penthouse at Alameda It*. All of that in cash, with the money from the stores. Then, in the '90s, around 1995, 1997, the downtown deteriorated. The big offices left, and the stores were no longer profitable. One day I was at For Men and I had to pay the weaver, which was a large sum at the time, around R$ 8.500,00. I wrote the check. My aunt Leonor put it away and she didn't know where. We looked for it everywhere. I had

to cancel the check and write another one. That's when I found out she had Alzheimer's. Because of that. Then we sold the stores. I used to wake up every day, take a shower, make breakfast, and go to the stores. What I miss the most here at Cidade Dutra is the work. When I had to sell the stores, and stop working to take care of my aunts, I got depressed because it is horrible not to have a job. And - you may think I'm joking - but especially on Mondays. Because I hear people getting up, starting

their cars, and going to work. I envy them. Not because I want them to lose their jobs, but because I don't have my own, you know? I miss that a lot. I graduated in Business Administration from Mackenzie and postgraduated in Mathematical Finance from GV. I must thank my aunt Leonor for having two diplomas today. Not only did she pay for my studies, but she also made me study. I had to study, or she would beat me up. Today I look at her and she's completely degenerated. My aunt Leonor is so dependent that one day I

went out to buy cigarettes three blocks from here and when I came back she was crying, because she couldn't find me. That is depressing. The fact that she is so dependent, from the disease, and the fact that I cannot leave for one second. It just wears me out. Leaving the house is a relief because... I'm not complaining, but the house is so sad. Here we have two old ladies, my mom with a hearing problem, my aunt Leonor with Alzheimer's. When I leave the house alone it's like I'm on vacation. Sometimes, when I think about it,

it makes me depressed, I start shaking... I've been very stressed out because I don't see any change, any improvement, and nobody helps me. I can't "unplug". I can't say "no, I'll no longer be stressed out". That's not how it works. I have an older brother, married. And I have a younger sister, also married, who lives in S*o Bernardo. My sister tries to help. But she lives far, she has her family, her kids. And my older brother doesn't care at all. I'm on my own. But the retirement money we have and the money in the bank

are not sufficient to keep us living in Jardins. Either in my house at Av. Paulista and in my aunt's house at Alameda It*, we had the best there is. This building. Yeah, man. If I'd stayed at Av. Paulista and with the apartment at Alameda It*, I would be broke. I was going to starve. I would lose the properties. Paying R$ 1.800,00 as common fee at Alameda It*, R$ 1.700,00 at Avenida Paulista, plus taxes and all the expenses. What I liked the most here, were the memorable events we used to have. The family got together. It

was nice. Today the apartment is rented to a dear friend of mine. I'm afraid to sell it and run out of money. Then I would be with no money and no property. I'm not sure what I'm going to do. I lived here at Av. Paulista for 35 years. That's when my family prospered the most, that's my fondest memory. The apartment at Av. Paulista was too big. It had 250m2. It's totally unnecessary for just three people. My life was very exhilarating because I worked all day at the stores and when you are at Av. Paulista, you

have bookstores, movies, theater... I had a girlfriend who lived next to me. We went out, had some wine, some scotch, you know? I don*t hold back on the fact that I don't have the apartment anymore. Not really. I was happy there and I want to be happy where I'm today. It's very difficult for me to keep a relationship because I get stuck here. Most people don't get it. They think you have to go out, you have to go to a restaurant in the evening, etc. I can't. First, because I don't have a job, so I

have financial limits, I don't spend more than I earn. Second, it's the fact that my aunt and my mom Get me stranded here. I used to have a girlfriend. Her mother was also sick, but she died. One day she came here, we talked, and she said, "I'm going to have a life". Then we broke up and she is traveling somewhere. I said "You don't have to get stuck here just because I am. You got stuck with your mom. She is gone, right? You are free. Move on. I have my aunt Nazareth, who is the youngest

of the sisters. Out of the seven sisters, she is the youngest. She got early-onset Alzheimer's and she became vegetative. She stayed at the apartment in Alameda It* with a 24/7 caretaker for three years. She was alone there because my aunt Leonor had already moved in here. Then I arranged for a nursing home here at Marsilac, and transferred her here and rented the apartment at Alameda It*. It's not worth it having a penthouse with a vegetative person in it. It's just absurd. CANTINHO DA TERCEIRA IDADE REST HOME Sad. -It's so sad, isn't it? -It's sad. She

is resting now. You can cry. That's ok. In fact, it is great, you know? There, there. Have your coffee. Drink it. It would be good for you. We are going to miss her. We're going to live with that feeling, right? My aunt Maria de Nazareth was already vegetative for over five years when she got pneumonia. She was hospitalized and passed away at 4:30 A.M. And now I have to take care of the paperwork, because she was incapacitated, and I was her attorney-in-fact and I have the guardianship. By law, I have to sign everything. When I

was in the shower I let go a little. I was on my own, of course... I was expecting it. What comforts me the most is that she stopped suffering and so did we. Where is her shirt? It matches, right? I took this one with elastic because it's easier to wear. Anyway, they cut off the back. They just put it over. Nazareth, who passed away, was in a coma for the past 6 years. I mean, she was already dead to us. All we had was our hands full with her. The hardest thing about having a relative

with Alzheimer's is the feeling of having lost the relative and still having our hands full, taking care as you do with a child. For me, this Ms. Leonor you are getting to know is not the real one. She doesn't exist anymore. She's gone. I don't think you can call this life. It doesn't look like life to me. Don't forget to take her to the funeral tomorrow morning, around 7 A.M., so that she doesn't have to spend the night there. How can you spend the night in a funeral with two old ladies? Alright. My aunt Leonor

has always been a good person, very giving. This aunt of mine who died, Maria, was a bad person. Evil. She was bad. For everyone. It sucks. I don't like it, I don't feel good about it. I never got along with her, but I never wanted her to suffer, you know? And I still have to take care of the funeral. This is horrible. VILA MARIANA FUNERAL S*O PAULO OPEN 24 HOURS I don't make plans, because I had to give up of all the plans I had. I live for today. Tomorrow is another day. I don't know

how it is going to be. I'm afraid of having Alzheimer's because two people in my family already had it. I went to the doctor's and he said "no, you are okay. There's nothing wrong." I have many doubts about how my life is going to be when I get sick because I'm alone. I don't think there will be anyone to take care of me. Let's say I get sick, but I'm aware that I can go to a nursing home and have myself admitted. If I am not aware enough of that, then I don't know what I'm

going to do. What do I do to have fun? I don't. What do I do? I read, I watch TV, sometimes I go for a walk at Av. Atl*ntica. That's what I do. I don't have fun anymore. When I moved here, it all ended. I had a very active life. Unfortunately, not anymore. IT'S ME, AND ME ALONE PUBLIC HOUSING DISTRICT OF VILA NOVA BRASIL*NDIA I've been living here at Cohab Nova Brasil*ndia for the past 20 years. I worked for seven years as a nursing assistant and now I'm a housewife. My mother used to work as

a maid at Av. Paulista. Her boss was complaining that she kept forgetting the stove on and to do some things. She said she had to do something about it because she didn't want a crazy person in her house. So, I told her "If my mother is not good enough for you anymore, -I'll take her with me". -This should be fine. I said, "We have to look for help because you keep forgetting everything". And that's when we looked for help. We got the diagnosis, you know? That she has Alzheimer's. That's when she started taking the medication.

Since then she just keeps getting worse. Sometimes I feel tired because Joyce is lazy by nature, you know? Only when I have to go out or I'm not at home she gets up, she does something. But if I'm here, that's what you see there. In the bedroom with the neighbor's Wi-Fi. It is pretty much me, and me alone. -Vanusa! -Hey. Come in. Upstairs! What color do you want today? Pick a nice one. I'm going to use two shades of red then, okay? Okay. I'm a manicurist. I work for some people. Rose, Ilma, is another friend

of mine... There are many. And I charge R$ 30,00 for mani and pedi. I also do laundry, I iron, I rent my garage, I take a kid to school. Everything I can to make some extra money because what we get from my father's pension is not enough. Then I talk to someone here and there to try and pay my debts. I need something that would make me earn around R$ 500,00 every month. I was going to pay the bills easily and buy some stuff for the house. I love my job, nursing assistant, because I love

to take care of people. When I had to quit it was hard. Because I insisted a little bit to see if I could manage it, you know, my work, my mother, but soon I realized it would not be possible because she kept calling me all day at work. I talked to my brothers, but no one cares. They think that what she has is not serious. Because they don't live with her. They don't call to know if there's some overdue bill, if we need anything. No one helps. I had to quit my job, my life, to

fully dedicate myself to her. Watch out! Slow down. Slowly, mom. Slowly! Watch out for the steps. Let's go. What's up? Good morning, Mr. Agnaldo. This one is empty. Good morning! How you've been? We are going to the Public Defense Office to deliver the guardianship documents. She doesn't know how to write anymore, she doesn't know her name or how to sign. I need the guardianship to take care of her bank account, So we don't lose my father's pension, you know? The pension is a benefit. Since she cannot retire because her two bosses took two years out

of her, she doesn't have enough time, you know? If she applies for the Public Health Insurance Program, she loses my father's pension. It's not even a minimum wage. So, we are going after this because the bank manager said that if I didn't show up by February to renew the record, I wasn't going to receive her pension anymore. So, I had to become her guardian, to authorize this. That's why I need to go after this, so we don't lose the little we have. PUBLIC DEFENSE OFFICE OF THE STATE OF S*O PAULO How old are you, Ms.

Vanusa? -41. -41? -Married? Single? -Single. -Do you have your own house? -Yes. How much is it worth? -Oh... well... -Approximately. -It's CDHU (Popular Government Housing). -How old is Joyce? She's 19. -Does she have a job? -No. -It's just the three of you, right? -Yes, just us. I saw your file madam, you are here to incapacitate your mother. Right? To make you the guardian, to act on behalf of your mother, I need to prove to the judge that this disease she has makes her incapable of performing civil daily activities. This doctor will complement the report and

bring to me the consequences of the diagnosis. Do you understand what we are talking about here? So so? No. I don't... -But you live with your daughter? -Yes. You do. Is she the one responsible for you? That helps you every day? Is she the one who manages the money... She gets sad. Do you have any doubts? No? Do you understand why I need these documents to carry on with the guardianship assignment? I do. She is 63. She was fifty... 57, 58. When she was diagnosed with Alzheimer's. What made it develop so soon was the death

of my father. My father used to walk on the train tracks. That day he said "let's walk down the street". When he reached that corner, there was a construction site, and right there he was shot, and my mother watched the whole thing. So, for me, that's when it started, because she felt disgusted with life, you know? Over time, we already lived in many places before moving in here, because we lost everything. She sold everything and even left us with a relative. Sadly, when he died my mother left to her mother's house, spent everything she had

and came back with nothing. She even spent our savings. My mother before Alzheimer's... My mother is a very difficult person. She's always been, you know? Particularly with me. I think because I was very close to my father, maybe she was jealous, I don't know. But she's always been tougher on me. No matter what, she wanted to beat me up. My mother is very difficult. I'm sorry to say this, I don't like to talk about it because my mother is really mean. She is mean. With all that "meanness" the one she despises the most is the

one taking care of her. I had a boyfriend for nine years and when we broke up I was pregnant with Joyce. She was rejected. By my brothers, my mother, she was rejected. My mother wanted me to "get rid of her" no matter what. She managed to find a couple to adopt my daughter. The day she was born the couple went to get her and I said, "you won't take what's mine." So, Joyce resents my mother, but she watches her anyway. No matter how badly she despised me, she's always been different with me, I knew I

had to take care of her. Because she is my mother and I can't leave her. She is Stage 2 now, going to 3, and Stage 3 is much harder. You can see that she doesn't talk, she is not a chatty person, she doesn't smile, but she... Every day when she wakes up is like some of her neurons are gone. One day she remembers something she hasn't forgotten yet. The next day she doesn't remember anymore. She is slower, you know? Much more still. Let's count, shall we? Do you remember? Count... One... One, two, three, four, five,

six, seven, eight, nine, ten. Yay! Congratulations! I wanted it to have a cure. Even though my mother is mean, you know? She's always been, but I wanted her to get cured and that she got back to be the person she is. Remembering, fighting, you know? Annoying me. I preferred her like that. An active, hard-working woman, as she's always been. Tomorrow you will be alone with Joyce. Not for too long. I will take my course and come back. I have to do everything with her, everything. When I have an appointment and I can't take her with

me, it's madness. Because she annoys whoever stays with her until I come back. She says that I didn't say where I was going, and this and that. I keep saying to my daughter "Joyce, if she annoys you, let her talk, just ignore her. I don't want you to yell at her or fight". When I was working I gave Joyce a good life. We didn't live here. It was all rented, but I lived in an apartment. Joyce didn't like it when we had to leave the apartment to come here. Because she used to say "Mom, don't

you think it would be better if we stayed here and she stayed there?" I said "Unfortunately, we have to go because she cannot be alone". So, she didn't like it at first, but now she's used to it, you know? I miss the apartment where I lived with my mom, the time she used to have a job. I miss the fact that I used to try harder in the past. Now I'm a slack. I miss my grandmother lucid. Hey, Beth! She's very chubby. Grandma, please don't say that. I'll heat the food. I'm hungry. I'll make a

hamburger, grandma. Come. Take a plate. -A plate? -Yep. I resent her a lot because she never accepted me in the family. She was always nice to my cousins, but not to me. She took them out, you know? I've always hanged out more with my mom. Those things make me sad because today we are the ones by her side. She could have been nicer when she was better. I like her. I have affection for her. I don't want anything bad to happen to her. But she hurt me. A lot. I take care of my grandma, but

not because of her, because of my mom. Because my mom can't handle it alone. My mom is feeling depressed again. The nerves, you know? So, I rather cooperate with her. -Give me some of that, ok? -No. A lot. Eat the whole thing, ok? Go on. -Did you go to school? -No, I'm going today. Carol wants to study there too. -In what year is she? -Second. I thought she had finished already. -I still want to go to school. -Me too. At school, the only bad thing is, like, 9:45 AM, when the bell rings. Then we have

recess and then, "geez", another class. -Yeah. But not just one, two. -Yeah, two more after recess. But I miss it. Me too. I used to complaint a lot, but now... I like this one here, look, very old. Those were the best moments of our lives, right, Mari? Geez, I loved it back then. This picture makes me happy. I wish I could go back in time when I look at our old pictures, because I was very happy. It was cool. I'm going to get an Equivalency Diploma, so I can finish it faster and start working. Because

it's so hard to get a job, so I have to at least finish high school. I've worked for a few days at a store (in Lapa), but then they asked for my school transcripts and they saw I hadn't finished high school, so I got fired. But I wanted to work. I would like to be a vet. I like it. Or then be a beautician, which is also interesting, something like that. I don't count on Joyce. Joyce is nice, but she is not close to the family. No way. I picture myself with my own house. Married,

with my own business. I always imagine these things. I want to give my mom a house. One for her and my grandma. But close to me. So that I can keep an eye on my mom. I just can't be too far. It's an illness that demands too much from a person. And not just the person with the disease. The ones taking care of her. The course I took, of caretaker, helped me a lot. I came here to take care of myself, because I gave up of everything, all I do is for her. Is there someone

to share this with you? My daughter, sometimes, but it's usually me and God. Talking to someone with the same issues makes you feel better. Because here at home I can't talk about it, because nobody is going to solve them. So, when you talk to someone going through the same stuff, you feel good. I'm going to be honest, today I came back calmer, because it was so good that if it was up to me I would've stayed longer. Look, everybody. Come closer, ladies. One kilo of sardines is R$5,00. Take 2,5 kg and pay less! 2,5 kg

is just R$10,00! It's a joke, isn't it? Washing a man's underpants... I don't even have a husband! Hold this. What I want is to go back to do what I love. Even if it's in the evening. Because it's not just my mom who needs me, a lot of people do. Sunday, I took a test to work as a nursing assistant in a healthcare facility near home. All I have to do is go out the door and cross the street. It would be so good to work nearby. They have 80 job vacancies. More than 720 people

applied. I hope I can be the first or the second among all those people. When I go back to work I have two friends who will help me. While I'm working during the day they will stay with my mom and when I get home, I do. While Joyce will be at school, so help me God! With my first salary I will buy sand, I'll buy cement, you know? I'll buy rocks. And we will keep going. I want to start with the house. I BLAMED MYSELF A LOT I was born in the district of Casa Verde

and then, when I was 10, 11, I moved in to the district of Lim*o. I lived with my mom, my grandmother, my grandfather, and my brother. But, my grandfather passed away and I met Anderson. It was time to have my own family. "That's the person I want to marry, build a family with". For me, it was not too hard to leave the house, but I feel it was very difficult for them. They were never like "it is going to be ok. You are working hard, you're going to have your own place". No, it was like

"if it doesn't work out, fine, she will be back living with us". That's when we got our own apartment. I've moved in soon because the situation was almost unbearable. Then we started looking for a smaller house for them, because that one was too big, with three bedrooms. We couldn't afford it anymore. That's when they moved in to where they are today. RENATA'S MOTHER, BROTHER AND GRANDMA SHARE A ONE BEDROOM HOUSE. I'm going to my mother's and grandma's place to see if they are ok. As I always do during the week, two to three times a

week, sometimes less. Then they start babbling about how I forgot about them, that I don't care. Today, they have a routine that they can handle on their own, they don't need me there all the time. Sometimes it's just too much. They don't get it that I have other things to do, I have a life of my own. If it was up to them I would go there every day. I often don't want to go, but I have to. Then I take a deep breath, and just "go". Hey, sweetie. You are sunbathing, huh? Sunbathing? Huh? I

stop by the clinic, get the medication for my grandmother. There are many of her medicines here. Eight to ten tablets a day for certain diseases she has due to her age. My mom takes only two types of tablets, one for the thyroid, and the other for Alzheimer's, which she takes twice a day. I don't really remember how it happened. I got confused, forgetting stuff. At least it was diagnosed, you know? Dementia. DIAGNOSED WITH ALZHEIMER*S Many people say, "wow, she's really young. It cannot be happening to her". Sometimes I think to myself "No, I don't believe

that's what it is... I don't think it's Alzheimer's". But the symptoms are undeniable. If I go to my mother's 5 days a week, she'll be wearing the same clothes. The same clothes! I can't fool myself saying it's just deep depression. It isn't. My mom doesn't know this disease, you know? By that name. She has no idea it's Alzheimer's. I think she doesn't get it. So, it doesn't hurt. It's bad to spend the whole day with nothing to do. So, I do the crosswords. No, I didn't work too many hours because after she got married Anderson

started working with her, you know? I was a little... kind of confused. I missed it in the beginning. Now I'm used to it. She cried and said "Renata kicked me out. I've been working with her for so many years and now I'm out because of Anderson." She got nervous because she ran out of money. She couldn't afford her cigarettes. I pay for her cigarettes, you know? Renata paid R$ 100,00 per week and M*rcia would pay for other minor costs of hers. She would pay for her hairdresser, mani, pedi. Now it's all on me. When I

got there, my grandma used to say "your mother got sick because you took away her job. Because you took away her income". No, you better go. -The packages are heavy. -I know, but there is no other way. These are the new magazines going to the newsstands to be sold. We separate them now and I set the itinerary with the newsstands where we're going to deliver them. The 999 is already there. 40072967, right? 3009? It's wrong, isn't it? 3009 was there... I gave you something else. It's wrong. So, when there is any mistake, I pay for

it. If the newsman complaints that a R$ 50,00-magazine is missing, then they take it from my paycheck. We started having too many mistakes and I got nervous. We used to argue because I couldn't understand what was going on. For me, she was just lazy. For me, she wasn't sick. I gave her a magazine and said "look, the sequence here is 100. You have to look at all pages who's got the 100 and you put in the amount". Halfway through she said, "what number did you say?". We repeated "100". Two minutes later, she was like "what

number again?" That's how it started. We needed a cart to put the magazines in to deliver them, and then I couldn't return it, because she couldn't remember who she took it from. So, we decided it would be better if she stayed at home. That's what I thought. I said "You stay there, and I'll try to find something for you to do there. Something you like to do during the day". But she was very sick already. At the publisher's I could control somehow. But who would do it elsewhere? If she was doing it right, if she

was sick. People see you as unable, you know? In the beginning I used to say to Anderson "if she'd continued working with me she wouldn't get sick". I blamed myself a lot. -Did you take the key? -Yes. We've been working together for about five and half years. Our routine hasn't changed because our work didn't change. But her routine did change. She has to go to the doctors with her mom, more often, that changed a lot. She has to give her much more attention, so she has less time for us. Leisure time decreased a lot. On

average we deliver in one night to 27 newsstands, about 80 km from here to our house. Five days a week, from Sunday to Thursday, rain or shine. -Did you get the card? -Yeah, sure. It's here in the bag. -We're late, as always. -Tell me about it! -I hope they see us. -Yeah. -I came home 4 AM. -Really? Geez. It was hard to get up. If I knew Rodrigo was home I would've asked him to take you and I'd meet you there, but he never tells us when he's going. There's never a set time. Like he's

the big boss. Today I think my brother participates much more when I'm not here. Because we don't run into each other. Because I live with my mom and my grandma, it's harder on my sister. I get from work, go to bed, sleep. The next day, I get up and leave. I'm never home on the weekends. So, I do think it's a bit too much on Renata. Just asking her to cut the thyroid medication for me, that makes me nervous. Because she has to come here even though Rodrigo is here. But I scolded him this week.

I told him "Renata has too much on her plate. You do this for me" And he did. But I don't trust him. I really don't. I feel bad. Because that's not who I used to be, you know? The whole situation, you know? The neurologist... You get a piece of paper from the Doctor's and it says "dementia". That's also a shock. Deep inside I think "Will I be ok? Is it really dementia?" Some days I'm very shook up. I get very nervous, but what can I do? If I just think like that I'll go crazy. I

try... I don't really know where this is taking me... this problem of mine. Toilet paper, -sausage. -Hold on, mom! I think I wrote it all wrong. Toi... toile. No. Read here. Yeah, it's wrong. What's missing here? Toilet. Toilet paper. It's the I. The I. You didn't write it. You wrote "tolet". Read back and you'll see. Take it easy. Hard, huh? And it's wrong. If I get nervous... But why do you get nervous? Sometimes I come here twice. My mother forgets something. EVERY WEDNESDAY AND SATURDAY FRESH VEGETABLES WELCOME Toilet paper. Mayonnaise, I think it's there. Mayonnaise

is here, isn't? -No. Mayonnaise is over there. -On the other side? Oopsie. She and the other lady help me. Where is the butter? It's... Because even if I write it down I come here and look for it. I'm used to this store. Afraid? I'm afraid of doing things wrong. Because it's always my fault. Always my fault. Do you need a bag? Didn't I bring one? Yeah, put it there. -No, you didn't. Did you forget? -Yeah. Some days I don't remember anything. If I ask my mother what she had yesterday for lunch, she knows. Holy smokes,

aren't I recording anything in my head? My mother is 80. That's what makes me angry. But I remember everything from my past, my younger days. -Renata lying in my living room. -On the couch. Yes. On the couch in the living room. Rodrigo near the fern at home, in my house too. -Ours. -No, I used to live by myself. -Mom, it was the two-story at Godofredo. -Whatever. Then Rodrigo fixing that TV over there. No, not that one. That's a Philips, mom. -Then it's mine. -It's mine. That was mine. -You had another one. -Whatever. It's just you,

huh? That's funny. Only you can participate. You don't include me. It's just bickering. For silly reasons. She waits Renata or Rodrigo to get home to speak ill of me. To tell them I did this, she's done all that. She wakes up early. It's not my fault. Not really. No way. But I help with the food, I do. Although she... Mom, you are who you are, right? You do everything, right? I'm not going to say anything else. No, I'm not going to say anything. I'm sorry but I'll be quiet. That will only make me more nervous

than I already am. "M*rcia, cut this cabbage", and she does it, you know? "Watch the rice" and then she says "no, you watch the rice". I'm talking about the water. The water. No, I don't do anything. Enough! I'm not going to say another word. But my grandma doesn't get it. I don't know if she can't accept it, that she is 81 and her daughter, who is 55, is in this condition. Or if she thinks my mom isn't sick. She doesn't want to do anything. She doesn't want to cook, she talks back to me. Renata should

be going through this, not me. I think if I was with her 24/7, as my grandma is, It would be much more difficult. I pray to God to not take my grandma. Because they are both there and I used to tell Anderson "what if my grandma dies?" and he said "don't suffer in anticipation. You can't plan this". Because I've always planned everything. Renata and planning go side by side. "There is no point in suffering now. If my grandma dies, I'll have to bring my mom to live with me because...". Today my brother lives with her.

I think I need to help, you know? We need to sit and talk and take a little of this weight off of her, you know? I have to pay more attention to my grandma, my mom. And my sister too, because she's going to need help, right? That's obvious. It was hard for me to get used to the idea that I could get pregnant. Because I'm stuck with them... but everybody tells me that "you need to move on with your life, right? Because they've had their opportunity. Your grandma did, your mother did. So, you need too".

Look how cute this one, Renata. Check the size. That's L. I've never had a friendly mother and daughter relationship. It's always been a contest. Today I feel she's lighter and smiling more than before. -Do you like it? -I think it's cute. Now, what if it's a girl and a boy? Then I found out it wouldn't be just one. There's two of them. But I haven't freaked out. I can't explain. I want to include her in this new cycle of my life because I can see she's very happy. She's always asked me for that. "Won't you

give me a grandchild?" And I was like "calm down, mom. It's not like that." Even after her diagnosis she still talks about it. So, I don't want her to feel incapable. I think I made her feel that way sometimes. I don't think I'll be confident enough to say, "I'm going to take a shower, you keep an eye on them". Today, I think I would do this. With her condition as she is today. In a few months, who knows? -Bye, thank you. -Bye! -Thank you. Good luck! -Thank you. I can make an extra cash, you know?

It helps. I make cake and sweets for events. After a long night of work, we had to make this cake today to deliver it tomorrow morning. It's a wedding cake. I'll have to stop working in the evening, but I think I can keep working from home. It's not going to be easy to take care of two and my mother and grandmother. But I think I can handle it, as I've always had. Today, all I can think is: God knows everything. Despite my mother's situation, He gave me a present. So, He knows I can do it,

right? I think it would be good for my mother, even if she doesn't remember that in the future. THROUGH THICK AND THIN They call it Jardim Imb*. I've moved here in the 1970. This land here was for sale. It was a huge ravine. We bought it. There was no asphalt, anything. There was no natural gas around here and the police didn't come. There were just holes on the "street". My husband, the father of my daughters, left for work and I helped the mason. We didn't have money to pay for an assistant, so I did this

job. Then he got sick. He had Chagas Disease. He died and left us the car debt and the girls were very young. They were like 13, 14. I talked to myself "now what? I'll manage it. I started selling snacks on the street. Before Daniel, I was married to Joel for 18 years. The father of my daughters knew Daniel. He lived right here on our street. He was a foreman, he watched 3,500 workers. But I though he was very full of himself... He was strong, tall. One day I rented my vacant store to a pizza place.

Then he pulled over on his car and I went to talk to my tenant. He knew I was a widow. I was very thin, with a red strap dress. Then he looked at me and said "Are you alright? Yeah, you are definitely alright." I said "I'm fine". Then he asked me to sit next to him. We got to talk, he asked about my daughters, and this and that. Then he asked, "Can I give you a kiss?" I said "yes". Dear Lord! That kiss. Then he kissed me and from that kiss on and kept kissing to

this day. CIVIL MARRIAGE CEREMONY Then we lived together for 5 years. Then I told him "Hey, there is going to be a collective marriage. Do you want to do it? He said, "yeah, I do!" Look, hon, you were so tall. Dear Lord! How did you get to be at my height? Look! I remember. If you said you didn't remember I'd punch you. Look, we are going in. Here comes the bride. Keep looking, hon, so you'll miss how pretty I was. Strong man. I felt safe, right? It was so good! It makes me want to marry

you again. It was very nice. I got nervous. Today... Oh Gosh, that's how things are. Everything ends. So help me God, He will give us health, so we can enjoy all this for a long time. After two, three years of marriage the disease started to show. Where's the sponge? Don't throw it on the floor. -It's cold! -No, it's not cold. It's so hot... Raise your arm! Come on! Raise your arm! Sit down. Sit down on the chair. Sit! Give me your foot! Give me here. Now turn off the shower. There. Look. Look the faucet there.

Good! Raise your foot, ok? The other one. When he is going to put on clothes, I say "give me your foot". He stops to think. It takes a while for the brain to send the command. Because I'm very... "go on, for Christ's sake, give me your foot." Then he does it. You barely slept last night, huh? Right? Take the medicine first, then you take your coffee. Let it cool. He went to the doctor. "Mr. Daniel has Alzheimer's? The doctor said it was Parkinson's." "He has both". "Jesus Christ! I hit the jackpot!" Put it in your

mouth. Drink the water. He doesn't know where the bathroom is, where the bedroom is. If he wants to pee and I don't go with him, he will do it on the floor. Or he gets up, takes his clothes off, stays here. -Here, eat your porridge. -There is porridge? There were times that he didn't recognize me. He said stuff like "let's go", - "let's go where?", - "let's go home", - "but we're home", "no, let's go because Maria Jos* is at home". I said, "but I'm Maria Jos*", - "you're not Maria Jos*. You're the other lady".

"I'm not Maria Jos*? So, you have two now? Maria Jos* and Me? Oh My!" Coffee is taking too long. -Right, Mr. Daniel? -Yes, madam. "Yes, madam". He doesn't like it when I call him Mr. Daniel. He calls me sweetie, but doesn't want me to call him Daniel. I said, "it is Mr. Daniel and that's it!". Someday I'll bring the son of Lampi*o here. My, My! I'm Maria Bonita. You like to laugh. We had a pretty good life. I wouldn't change the ten years with him for the 18 I lived with the father of my daughters.

He was my first boyfriend, my first love, everything. The father of my daughters. But six months after my marriage he started beating me. He made us suffer. He beat me and my daughters. He beat the hell out of me. He put a gun in my head. Daniel, even when he was healthy, was very kind to me. Always respected me. Always said good things about me, and he still does, right? Now he is upset that I yell at him. Sometimes I want to kill her. We end up fighting, you know? But we've always gotten along. More

at peace than at war. Wash your mouth first. No, I know. Come here! Up here at the sink. You're 6 feet away. It looks like you're afraid of the sink. Too much work! Brush it! You see, I yell at him, but then I regret it. C'mon! Your wallet, so you won't lose it. You keep saying I take your money. It is gone. How much is missing? Sit here. He's still looking for the 11K he says were in his wallet and that I took. See that? Mr. Daniel walking around with 11K in his wallet. That's only

for the rich. -Don't say it out loud. -I'm not. That's right! Move. I'll put it in your face. Otherwise it gets flaky. There! Pretty boy. It's hard. But it's what they say... Through thick and thin. I'm not going anywhere. -Really? -Absolutely. It makes me sad. To see him like that... I lose my temper, but the girls understand. They say "mom, go ahead and cry, but you need to go out". I say "I can't go out and leave him behind." Everywhere I go, I take him. Everywhere. DANIEL ALVES PEREIRA TUESDAYS AND THURSDAYS, GABI - MORNINGS Close

the door. Give me your hand. Let's go in. I came here to Bom Jesus Community Center to exercise, because it's near my home. We don't pay anything. We just show up. I come here for him, to stimulate him, so he can come. He exercises, but he can never keep up, you know? Like the rest of us. But he tries. The trainer is always helping. He likes it, you know? Hold your knees with both hands. Let's go. Let's try and hold. You have to hold your own leg, sir. -Just a little. -Keep holding. He complaints because

I tell him how to do it. He says "I only have one instructor. I don't have two." So grumpy. So many things have changed. We used to go dancing. We just went out. Some days, when we were still dating, even after married, we just got out. "Sweetpie, let's go out!". It was like 10 PM, we took our old car... We went for pizza, we went dancing, we went to parties. Then... it all ended. When I go to the farmer's market I ask him to go with me, but he doesn't. He doesn't like it. Since my

daughter stays at home up to 2 PM, I take this time to do my things as she watches him. I go to the seamstress, to the market, I do all the things I have to do. I take the car to go faster. I stay with him in the morning, and my mom stays with my daughter in the afternoon. We help each other. She got to know him pretty well, right? I believe not everybody would bear this. Because many people stay married while it's good. Or when they profit somehow. But when there's nothing... She's not like

that. She does it out of love, I can see that. She loves him. If it were someone else, if he needed some other relative, he would be abandoned. She takes care of him. I think his sons and daughters should be watching him. I have seven kids. I feel... neglected by my own children. They were different. When I had some power over them... "Let's go to the beach? Let's go somewhere?", it was better. If I miss it? Sure. Their friendship... when they used to visit me. Once a week, at most. They come and hug me... and

that's it. I tell him: "I'm going to the market, so you better behave". "You treat me like a child!", he says. "I'm not saying that. I'm just telling you to behave while I'm out. Cristiane will go to work and you'll be on your own for a while." Then when I get home, he's sitting there, poor him. I think he's afraid of doing anything. It seems he's on his best behavior when I'm out. When I'm at home he makes a mess. -What else, mom? -That's all. Thanks. -Just that? -I didn't know I had a son that

big. I like to go to the farmer's market when it's almost closing. Things are much cheaper. R$2,00 of that seasoning. Before he got sick, it was better, because he used to drive... It was totally different. My life turned upside down. I do everything in a hurry. When I'm mad because he's stubborn, I tell him "I'm going to the farmer's market, I'll take my time. I don't care. I don't care about you". Yeah, right! When you're out your mind boils. If I could I'd go out of town every month. I love to go out, to travel.

I used to do that a lot. I love to dress up. Today, I don't have time to have a mani. I consider myself a caretaker. You have no idea! People tell me to "hire" me. If I could, next year I'll find someone. Next year I'll quit my car. Then, I'll get someone to take care of the house for me. At least, once, twice a week. I'll take care of Daniel. I don't want anybody watching him because... it's not jealousy. It's because he gets too shy. He prefers me taking care of him. So, it would be

pointless to find someone to watch him. I rather have someone taking care of the house, doing laundry, cleaning. I can do the laundry, because I like it. But I'm the one watching him. I trust me better than anyone else. You're better today, huh? Lifting your foot from the floor. Down. Sit over there. I'm here for Mr. Daniel's diapers. 120 diapers. -It's ok. Thank you. Bye. -Don't mention it. Bye. Besides the diaper, he makes use of a very expensive medicine, I get milk, everything I can from the government... Anything I'm entitled to, I go for it.

Sit down! When I'm going to cut your hair, you decide to get up? Huh? No. Stay right there. Every time I take him to get a haircut, it's like R$10,00, R$15,00. I do it for free. I shave his beard, cut his hair, trim the mustache. I do it all! The only thing I don't do is wiping him. Not yet, right? He's a baby. In the old days I had to do it like this. Now, you're just as tall as me. That's for the lucky ones. We grow after dead. Get up! I have to trim your

mustache, ok? You keep talking and forget to do your job. Remember that day? I went to trim your mustache and cut your lip? You got mad. So macho. The pain! Oh, come on! Now let's do your eyebrows. -Oh... ok. -Easy! I'm the one doing it. Daniel was very determined. He was just like me. He didn't depend on anyone to do anything. He'd solve any problem. With the family, his workers, his life. He was the leader of the pack. And now... he's like that. I'll slap you. What a joke! Hey, you better respect me. I'm the

joker. Don't touch me, Maria. It's not fun anymore. He got mad. Tenderness, Love, respect. For the little time we've been together, I can't say anything bad about him. He's always respected me. One time he talked to me in a way I didn't like, so I told him "never speak to me like that again, I've always respected you and I don't want you saying these things." Something like that... I don't remember exactly. He said, "Okay, sweetie. I'm sorry." He never spoke to me like that again. So, why should I be bad to him? I have nothing

to say. I don't know if he would do the same for me, But I'm going to do it till my last day. The only thing I'm really afraid of... is me being gone and he'd be left alone. I'll always be by his side. So help me God. WE DON'T MAKE PLANS FOR THE FUTURE DISTRICT OF BRASIL*NDIA NORTHERN S*O PAULO My father is from Minas Gerais. He decided to come to S*o Paulo and see what would happened. He wanted to have his own place. He brought my mom to see how things were around here. She said

she wouldn't live here because it was not "livable". It was in the middle of nowhere. At first, it was just his house and then things got bigger, you know? He built a floor there and rented. Then he built another one there. He rented it too. He wanted to live on his rents, you know? Then, as his daughters got married he gave them away. Old people used to bury their kids' belly button when they fell in the backyard, you know? Ours are buried here. We live all together here... that's how my dad wanted. He never wanted

us to go far. Before he died he asked us to take care of our mother. That's where my sister used to live with her husband. DENISE SANTOS MIRIAM*S DAUGHTER That's where I live with my mom, my father, and brother. Here's where my aunt Doca lives with her husband. There's where my aunt Daniele lives with her kids and son-in-law. Here's where my grandma lives with my aunt C*tia. Last, but not least, here's where my uncle Paulo lives with his wife. Mom, whose house is this? This one here? This is Doca's. Doca's? No. It's yours. -Mine? This

house? I'm not sure. -That house is yours. I don't know anything about that. She forgot that that's her house. She remembers things from the past. She forgets the living and bring back the dead. -Do you live on your own? -No. I live with Lourdes. -Sometimes with Lourdes. -Your sister already passed away, mom. -Lourdes is dead? -Yeah. Before Alzheimer's, my mother was a fortress. We noticed she was weird because she lost weight. Why is she losing weight? I didn't know much about this disease. It was like, "oh, Alzheimer's. Oh, forgetting". Ok. I didn't know about the

weight loss. I didn't know about this changing problem, you know? You're looking at the person, calling the person, -and not recognizing. -Who am I? -Oh, you're Bi*. -Oh! What am I to you? -Granddaughter. -No, I'm your daughter. We go her way, you know? We laugh with her. Sometimes, she laughs, sometimes she wants to cry, sometimes she's aggressive. We have to go her way. -How old are you? -Forty... Forty, Forty-four. Wow, 44? Isn't it 89? Excuse me. I don't know. -Don't you remember? -No. I have to look at my ID. There's going to be a party

today, isn't there? -Party? Where? -Here. For you. -I don't know about that. -Nobody told you? -Nobody said anything to me. -There's going to be cake. We'll sing "happy birthday". Isn't it your birthday? -When? Today? -Today. Really? Okay. We're going to celebrate, 89 years old. She sees the movement, but she has no idea it's for her. That is a cruel disease. What's in the cake? That's not the cake, mom. That's mayonnaise. Really? It's very smooth, isn't it? What do you mean? What's smooth? The top is smooth. When is cold she usually goes "go put on a

sweater, kid". She's like that. Always taking care of people. Without a shoe, without nothing. Not even a sock. Nothing. Everybody helps. We have a rotation. She stays here in the morning and gets lunch. Then she goes to Miriam's and stays there until 6 P.M. Then she goes to my house again, so she has something to eat. Then she goes up. This week she's sleeping at Bi*'s. Next week she's going to sleep at my sister's, C*tia's, down there. It became a habit to me. One day at my sister's, one day at my place. So, it won't

be too much just for one. Go ahead. -Folded, right? -No, for you to fold. -You have to fold it. -Iron tomorrow. Since my father left his pension, we can handle it. Since I became her tutor, I do most of the stuff. Whatever my mother needs. If I say "clothes. This one is too big for her", she goes and buy. She used to buy diapers. Now we get it from the government. It's like that. Medicines. Miriam takes care of the money. Miriam is, as we say, the financial department. She's not just our grandmother, she's our mother.

She raised all her grandchildren. She helped our mothers taking care of us. If my mom was going to spank us, she'd go "not my granddaughter". She replaced my mom. Because my mother was absent, She was my mother, you know? I'm not just her granddaughter, I'm her goddaughter. We have to help as much as we can for what she did to us. Mom! Grandma! Grandma! She's always been affectionate. She played, laughed, always bringing us together. It doesn't matter how much time God will give to her, it's important to us. Because she's the mainstay of the family.

It's because of her we all get along, you know? She has that disease, but she likes to have fun. She has fun, she laughs. That's a way to deal with the disease. We're all going through this. She lives in her own world now. We have to deal with this the best we can. We found out about this disease 5 years ago. Saturday, after you left, my sister and I went to church. When we arrived home, grandma was paralyzed on her right side. She couldn't raise her hand. Mom! Look this hand here. Squeeze! Squeeze! We're waiting

for the ambulance to take her to the hospital. The ambulance took her to Hospital de Taipas. They said she had to be admitted. She had a stroke. I ask God to give me the strength, because I'm not ready to lose my mom. Today is just another day. We're going to visit my mother. To visit my mom. We hope we find her well. God willing, she'll be fine. Soon she'll be back with us. She'll be back with us soon. God willing. That's it. We are going to find her better than she was yesterday. Times like these

we... we are already close, but we'll become closer. Because she'll need it. Let's see how our patient is going. Good afternoon! -Where's Juvenal? Isn't he coming? -Look, Juvenal is here! Say something. -Hi. How are you? -I'm fine, thank God. I haven't seen you there. You're short. -You can prepare the table. -Prepare the table and begin the dance. She's thinking of the dance. -Where's Juvenal? -Who? Juvenal hasn't come for lunch? -Juvenal hasn't come for lunch? -You just spoke to him. There he is. Hi, again. -You got a new outfit, huh? -Oh, is it pretty? It's pretty.

Today, thank God, she's feeling better. IMAGES PROVIDED BY DENISE, MIRIAM*S DAUGHTER Slow down! It's almost there. Come on! Hold there. Come down now. The step. Watch that other step. Another step. It's touching here. It's touching here. Let me hold. Down now! Down now! There! There you go, Mrs. Cida. I brought her home from the hospital. I paid for her exams, I don't trust public services. She's a public servant. She can use their hospital, but it's too far. You have to go where is closer... and better. Now it's hard because she doesn't move any more, you

know? In the old days, she would be with the broom in her hand. Sweeping the backyard. She was the only seen the dirt. She came here for coffee. She came here for lunch. She'd go downstairs and upstairs on her own. So much so I wanted to put her downstairs. But my bathroom is up there, so there's no way. We made a bed for her there. That's where she stayed. All her daughters are responsible for her hygiene now. Because two have to do the job. Two or three. Because she can't move her legs, so one person

has to hold her legs. Even the little ones, Andreza, Nandara and Alessandra, have to help. I'll cut very small pieces, okay? She used to be more independent. Despite the disease, she was more independent. She ate by herself, she did everything by herself. And now... -I had a good lunch, thank God. -You already had lunch? -Yes. -Who gave you food? -I had it after lunch. -Did you cook your lunch? Really? I often give her lunch. But if someone passes by with a plate of food, she says "I haven't had lunch yet. Nobody gave me food". Other

times she hasn't had lunch, but she says she did. "No, I've eaten already. I've eaten already". Like now. I don't know why she's not refusing it, since she says she's already eaten. -It's hard for me to eat twice. -Is it hard for you to eat twice? It's hard to look at her like that every day. It's hard. We don't make any plans for the future. We try and live the present the best we can. Okay. Now you do it. Do it. Raise your arm. No. Not that one. That one. Raise it. Up and down. Go

on. Raise it. Yes! You're so smart! Did you tell Juvenal that she sat on the chair pedal? Did she fall? We overlook for one second and she's doing a mischief, right, Mrs. Cida? You do your mischiefs, don't you? Do you agree? See? Yesterday my other niece brought the walker. The grandchildren do what they can too. Let's take a walk to the kitchen? Yeah. They got together and gave her the bath chair. The other grandson gave her the wheelchair. For her, we all get together. Go on, Raise it. Look here. That's right! She stood on her

feet holding the bath rail. I started crying because I couldn't believe my eyes. Go on, I'm holding you. Wait! Let me go first. Go on. Go ahead. I'm holding. Go on. Go. Go. That's it! The other foot, go on. Put the other foot down. While my mother is breathing, my life, and I believe my sisters' lives are for her. Watching her, taking care of her. Seeing her in that condition... I leave it up to God. Maybe it would be better if she leaves us. God knows. We miss her a lot, you know. That person from

the old days. Thank God, I'm very happy with my grandchildren, my children, my daughter-in-law. Thank God. God bless you and multiply. Amen! PAULO'S MOTHER PASSED AWAY AND HIS AUNT IS IN A NURSING HOME. HE DIED ALONE IN 2018. VANUSA BECAME HER MOTHER'S GUARDIAN RIGHT BEFORE HER DEATH IN 2018. SHE DIDN'T PASS THE TEST FOR NURSING ASSISTANT. RENATA GAVE BIRTH TO HER TWIN BOYS. DURVALINA PASSED AWAY. RENATA AND RODRIGO ARE TAKING CARE OF M*RCIA. MARIA JOS* STAYED BY DANIEL'S SIDE UNTIL HIS DEATH IN 2018. CIDA WALKED AGAIN. SHE DIED JUST BEFORE HER 90th BIRDTHDAY. THE FAMILY

IS STILL TOGETHER.

Alzheimer na Periferia // Alzheimer on the Outskirts