How much can you give of yourself before it’s too much? And what do you do when you reach your limit? Nazanin Boniadi ("Hotel Mumbai") reads Tara Ebrahimi's essay.
This is an unofficial transcript meant for reference. Accuracy is not guaranteed.
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Oh the from the New York Times and WB. You are Boston. This is modern. The stories of love loss and redemption. I'm your host magnet Chakrabarti the if you've ever
a caregiver, you might have wondered how much
can you give of yourself before it's too much. And
what do you do when you reach your limit tower ever
He gets at those questions in her piece, a sister's comfort, if not a cure,
it's red by Nazarene, Boneyard III, who stars in the new movie hotel room by its playing.
and select theaters and nationwide. On March, twenty ninth.
The first time my younger brother attacking said his teeth were falling on the floor. My family
was concerned, but we
Leave it was a passing manifestation of anxiety from the dental surgery he had recently been through when he complained that his teeth with sliding down his throat and that he didn't have a mouth we exchanged uncomfortable looks
But when he started walking around with a mara in his hand and his finger in his mouth for days on end, we knew hoping for the best was no longer sufficient
Within six months, stacking had lost both of his jobs and had become violent at times from dishes
and grabbing the steering wheel and swerving the car when riding with my parents.
You're not doing anything to help he scream at them.
I'm in pain. My teeth are gone. You don't care
and took him for consultations to see if other dentist recommended more procedures to do with his mouth pain. But it was clear to me
This was no longer about dentistry enough. I said to my parents: we need to consider psychiatry.
Although tucking had been found to have development delay and fairly severe a d at a young age, he had managed to
in normal life well into his teenage,
He stayed in the school system for as long as he could
painting and work and life skills programmes. It was doing data entry at the airport and held a steady part time job as a greater trader chose. His situation was complex, as is often the case for people who fall into the gray space between severe intellectual disability and bodily.
development delay. He knew he was different from others in their early twenties recognised that heat.
really have any friends and that he would never
go to college is too old to siblings. Had he wanted nothing more than to get his driver's license, but he was happy at times, especially when he was socializing. Then he had the dental surgeries and it was as if a song
which in him had been flipped after a series of root, canals and teeth extractions. He woke up
his final round of procedures and anesthesia and was never the same.
my parents emigrated from IRAN and my siblings, and I were born here typical of immigrant families desert cultural disconnect between generations, and this is painfully evident in our conflicting attitudes towards the mental health profession,
I am a proponent of its benefits, while my mother and father are skeptics.
According to my relatives, exercise and diet are all you need to alleviate anxiety and,
Socializing and parties at the only treatment for depression, but now,
even my parents were worried and they were willing to try anything. So we began seeking
at your help, for what eventually would be referred to as tacking psychosis and delusional thinking.
because of his previous diagnoses. He was already in the social services system, which in all state consists.
Of a labyrinth, thin series of hoops and hurdles and bureaucratic insanity that not even the most educated and competent can easily navigate
after years of trying new case workers, psychiatric programs and all kinds of medical and mental health, doctors and specialists. My parents had reached the point of paralysis.
They were lost in a system, they didn't even believe in. They had become almost as lost as packing. So I took over
I'd never given much thought to social services. As a
Galicia, is near the bottom of my list as a healthy, educated upper middle class woman. I cared about the economy, student loans, education
and being a first generation, persian american foreign policy
my crash course in this world was sobering from
I my job and my own mental, well being and pursuit of fixing. My brother, I spent my
aids and nights researching what to do for him contacting other families sorting out his benefits, dealing with Medicaid and cooling programs. I made spreadsheets and lists
came up with a plan of action and then another one when the first plan failed and another. When the second plan failed.
the day, tacking grab the steering wheel of my car. While I was driving my elderly grandmother in the back seat, I went into panic mode. Something had to change now.
So I drove to the emergency room where we waited eight hours for him to be admitted to the psychiatric ward.
During his two week, stay, I visited twice daily, spoke with his therapist and made an outpatient plan with his caseworker.
I knew the medications he was on and had been on the whole complex history of his teeth and his delusions. I knew every day
Intel and had told the story so many times to so many people that it felt like my own one day
his caseworker said to me. What,
need to understand. Is that he's not going to be fixed? He'll have good days and bad days he's trying, but don't ever forget that he is a person he isn't just an illness. I had forgotten when it was time for talking to leave the psychiatric ward for an out patient.
A halfway house for people with mental illnesses, I called a dozen times a day and could never get a response on the status of his anticipated stay. So he never went.
After he was released from the psychiatric ward into my custody. I was.
Unable to reach his case manager at the hospital. Despite my constant phone calls emails and voice messages which were alternately, kind, threatening and pleading. Although
Jane, had moments of lucidity and progress, they were few and far between and becoming ever fewer and father between. I didn't know what else to do. I was scared and tired and felt like a child who needed an adult to lead the way so I gave up there. I said it I came up. There was just too much work with too little pay off and fought you sad. So I dropped the whole thing. No more doctors, appointments, no more meetings with casework is no more hours spent researching facilities in programmes your weak
I told myself is this your brother? He has nothing and you have everything, but I just couldn't do it anymore, helping him seemed to require that I lose myself into his care and cause, and perhaps it's shameful, and perhaps it's not, but I could no longer do that.
Still, I lay in bed at night worrying about what would become of him. I cried and had panic, attacks and prayed to God to send me help, but really what good would it do for attacking it would make no difference in his quality of life. Slowly I adjusted my thinking. I asked myself what are the things in my power? I can do to make him happy instead of creating spreadsheets and placing fruitless calls, I took him shopping for cool clothes, so he could feel more confident rather than taking him to doctors. I took him out to lunch every
with a week or whatever restaurant he wanted, I invited him to parties and barbecues. I organized at my house included him in conversations, cracked, open, a bottle of beer for him and treated him like the twenty three year old dude. He was we made pizzas. Together, we cleaned out my car. We talked about our parents. Sometimes his finger was in his mouth and sometimes it wasn't. Sometimes he was quiet and lost and other times he'd laugh and tell stories about something funny. Our father did those times when he was deeply mired in the darkness of his mind. I didn't think my presence made any difference or bought him one millisecond of joy but other times when he would smile the way he used to. I knew that even if he couldn't understand or express how he felt
writing tomato sauce on dough was a nice fun thing for us to be doing, and I loved him for giving those moments to me once at an assessment for Mental Health Day Programme, a specialist asked him. What do you want for yourself packing shrugged, as he often did come on tat? I pressed what you want. He thought for a moment.
Finally, he said I want to normal life. I want to work, I won a girlfriend and when a car I like people, I want some nice friends. I had to turn away ass. He spoke pictures. I knew I couldn't give him any of those things. I'm tired of this pain he added finger in his mouth. Then he laid his hand on my shoulder and left it there. For the remainder of the interview I blew the weight of my brothers head on her shoulder has at stake good. Firstly, as I could it wasn't much, but it was something.
That's not an inventory reading, Torah, Abraham
is SA a sister's comfort if not a cure will catch up with Tara after the break
before the work messages begin to pour in
let's get our selves a good morning a good morning as a moment to pause and ease into the day. It's a moment to run and chased the sunrise or its.
at least settle into your routine a good morning.
is a moment to be present to find clarity and be grounded for the day ahead. Good days start with good mornings and good mornings start with Yogi Tea Yogi tea tease me to do more than just taste good. I love spelling, be my boyfriend and I often play spelling bee together
I mean sitting next to each other playing individually and not cheating. Sometimes when I open up spelling bee- and I see that you have completed a few words on your own, I feel a little betrayed in salary
it may have happened again. I have one friend
who I will send screenshots from spelling bee of inappropriate words. Then I always get nervous. I sent it to my parents or something like that.
me and my dad. We like a sponge together, and I wish to point out I it said
a c K. P, o t
yeah right nice
I'm same as earth's the digital puzzles editor for the New York Times. You can try spelling bee and all our games at N times dot com, slash games.
every hemi is thirty. Four now and are modern love. Peace came out seven years ago.
her brother recently turned thirty and tourism
That, though, he's doing better in some ways he's declined in others,
He is struggling with pretty
severe obsessive, compulsive disorder
with depression and
a slight psychosis.
A couple of other ways and paranoia- and things like that, but what I find
incredibly interesting about his situation, and I think what makes his situation really you
I can actually very hard to deal with is that you
developmentally delayed he's real. Really
capable of expressing himself in the way that you are, I would be able to which makes hand
his mental illness much harder.
it makes it
impossible to really diagnose him in any sort of meaningful way. Tacking
with his father in Virginia and has for the past decade. He has helpers, who tutor
mentor him, but he struggled to get and hold jobs, and since this.
peace came out, Tara has moved to Chicago, but
did recently go to court to become one
his guardians, mice
my father and my mother, are all co guardians which is not on
a legal responsibility, but it's also the kind of risk
sensibility where
you,
can no longer say I'm going to
with my own life, I mean my life is now incredibly entwined with his
and will be for the rest of my life. That's all
It's a tremendous responsibility and a tremendous burden. Tara,
her brother, often and
time spent long stretches of time with him to help take the pressure off their father
just last summer in July I spent two weeks in Virginia just
in him and it was definitely the hardest. Two weeks of my life, he
Struggles with severe Gore phobia now, but he
has really severe ADHD. So
kind of in this really tough place where you know he
gets bored really easily because of his severe eighty eight. He can't entertain himself. He doesn't want to watch tv. He doesn't want
play games, he doesn't want to read. He doesn't really have the attention
and to do any of those things, but at the same time he can
really go outside. So it's this.
Constant struggle of what are we going to do today? I mean, I remember, waking up in the mornings and it would
six thirty in the morning and I would think to myself. How am I going to get through the next fifteen hours Torah says
at. The bottom line is that her brother is not going to have the kind of life she would want for him.
He has moments of happiness and joy here and there, but you know
and Clay their few and far.
Between, and I think that his life is
a hard one. You know he wants a girlfriend.
He wants a job he wants friend
And these are things that he will never have and I think part of dealing with
the sadness that comes with that is acceptance
and knowing that.
There's not a lot that
can do to change those things, but there are things I can do to make sure that when I am with him he is
happy and having those moments of joy. As for what the future looks like for them.
Horror, says it's uncertain, especially now that her
other is, in his late seventies,
not entirely sure. What's going to happen, and it's a very scary thing for me, my plan
One is to bring him to Illinois where I live
And to kind of get
into the mental health care system. Here
and to set him up in some kind of group assisted living facility, and just you know, that's where
he will be, and I will be the one
after him in the one taking care of him, but not the one who
is going to be providing that day in and day out care, because, frankly, I'm just not equipped to do that
and she's not sure how she'll balance everything when she's married and has her own children, luckily ever
partner, whose very understanding right now and no
taking is going to be a huge part of my life forever, because
you know, I'm not going to ever give up my brother,
Abraham me she's a writer and editor and is currently working on a book about her relationship with her brother. She lives in Chicago more after the break. I love felling, my boyfriend and I often play falling, be together by together. I mean
ing next to each other playing individually and not cheating. Sometimes when I open up spelling bee- and I see that you have completed a few words on your own, I feel a little betrayed in salary,
it may have happened again. I have one friend
who I will send screenshots from spelling bee of inappropriate words. Then I was get nervous. I sent it to my parents or something like that.
me and my dad. We like a sponge together, and I wish to out I it said
a c k, p o t
yeah right nice
I'm same is risky. The digital puzzles editor for the New York Times. You can try, spelling bee and all our games at annoying times dot com, flash games.
Daniel Jones, editor of the modern love column for the New York Times says this essay gets a lot of questions about caregiving power
going to spend your time. Are you going to spend your time managing and resenting it or is maybe a better expression of love enjoying that person's company? What are acts of love? What do people want from us, and what can we give that? Those are the questions at this.
I asks and she arrives at a place that sort of comfortable
seems to be better for both of them
and here's inborn thing I connected most with in this that really spoke to me was
Tourist journey and in helping her brother was so human and she kept so deeply about him, but
all you know we will have a ceiling that we hit, and that doesn't mean we aren't helping others it's just the best. We can do
Thank you to knows any for reading this week's piece, her Newman,
He is who tell them by playing in theatres nationwide on March twenty ninth next week
Natasha Leone of Russian Doll Manhattan may have a scarcity of affordable apartments and parking
but apparently it has no shortage of older widows and comely divorcees, many of whom wanted to date.
I newly widowed father whenever I visited him at his Upper EAST side apartment
it was not uncommon for us to be interrupted by the doorman, calling up to say
a lady just left a bundt cake downstairs. What am I supposed to do,
With all these women, he would say
feel bad, but there are just too many.
Modern love is the production of the New York Times and W B you are Boston, NPR station, its produced, directed and edited by Caitlin. Ok,
original scoring and sound design by Matt Reed.
Adler's our executive producer, Daniel Jones,
the editor of modern love for the New York Times and adviser to the show special thanks to you,
the henig on your stringy and merely at the New York Times.
Here for the modern love like cast was conceived by these a Tobin magnitude.
see you next week.
Transcript generated on 2022-04-16.