Making the Transition to Compassionate Care

16
1997

The U.S. has approximately 38,000 state beds available for psychiatric patients, with the average length of stay about 10 days.  During the past four years, one of my siblings cycled in and out of psychiatric hospitals and occupied one in New York State for over two years straight. They were being treated for anxiety and depression.  While hospitalized, their condition worsened to the point of being considered catatonic.  Mental Hell-Care: My Sibling’s Story, published at Mad in America, details their experience.

In the article, I used gender-neutral language to protect their privacy, but at this point, my sibling, who is my brother, is aware that I am sharing his story and has given me approval to continue to do so.

During his hospitalizations, my brother was under the care of over a dozen psychiatrists who believed it was in his best interest for them to try and control his mental health and behavior with a combination of various psychotropic drugs and electroconvulsive “therapy” (ECT).  The doctors ignored his request to stop taking the drugs.  His physical health suffered to the point that he became completely disabled and unable to speak and advocate for himself.  His psychiatrists refused to admit that the drugs caused him any harm and petitioned the New York State court to force him to be under their care for an additional six months.

My sister successfully advocated for my brother and obtained permanent guardianship in June of this year.  There were many delays in obtaining guardianship, and the legal fees were very costly, totaling over $6,000.  After guardianship was approved, the judge ordered my brother to pay state attorneys an additional $3,500 from his pension.  The cost of treating my brother’s anxiety had already led to catastrophic medical expenses, with his insurance companies paying out over one million dollars over the course of his commitment.  His medical bills total more than half a million dollars and he does not have the ability to pay them.  Eventually, they will ruin his credit and force him into bankruptcy.

Nurturing Progress

Since July 2020, my brother, who is now 62 years old, has been settled in his home and is going through psychiatric drug detox.  My family set a goal of creating a sustainable, structured, therapeutic, and healing environment for him based on compassionate care, meeting his nutritional needs, and therapeutic interventions supporting the recovery model.

My brother is now under the care of a psychiatrist who is extremely compassionate and fully supports our family’s decision to implement a harm-reduction approach.  His psychiatrist continues to advise us on nutritional supplements and therapeutic interventions that will enhance his recovery.

Because his condition upon release was so severe, we needed to employ the services of skilled nurse’s aides.  We were blessed to be able to afford several months of 24-hour care and to find compassionate caregivers who committed to help my brother through what no doctor or hospital would agree to help him do: namely, taper off of the benzodiazepine that he has been dependent on for over four years.  Medicare paid for some home care services, including physical and occupational therapy to help him recover his strength and ability to care for himself.

During his psychiatric hospitalization, my brother was literally starving to death as the toxic effects of the drugs paralyzed him to the point of being unable to eat, drink, or speak.  By the time he was released from state care, he had lost 95 pounds and looked like a Holocaust survivor.  It was the patience and experience of a single, at-home caregiver who sat long hours by my brother’s side, reading to him, saying prayers, and encouraging him to drink small cups of whole milk, suck on ice chips, and eat slices of watermelon that finally restored his ability to eat and drink on his own.  His aide was extremely compassionate and recognized that a large part of my brother’s condition may have been the result of sensory deprivation while in psychiatric wards.  He made suggestions to help stimulate my brother’s senses, including purchasing a heated-massage, lift-reclining chair; using a weighted blanket; playing healing music; and using color therapy.

In August of this year, my brother experienced several brief periods of fully awakening to his normal self and was able to vividly explain his experiences.  He told us that he’d felt like he was existing in a parallel universe and he thought we were all dead.  He expressed the full gamut of human emotions, from fear, confusion, and nostalgia to a sense of humor and an appreciation of life.  His memory and physical abilities were temporarily fully restored, and it was as if he were experiencing his surroundings for the first time in years.  He proved to us that staying positive and not giving up on him was worth it, because he is fully determined to recover.

The COVID pandemic has made it difficult for me to travel to New York and help out with my brother’s care as our family had originally planned.  This past fall, however, I was able to visit him on three separate occasions and, within days of my visits, he showed remarkable improvements in posture, coordination, attention, range of motion, and verbal communication.

Dehumanizing Hospitals

The time I spent assisting my brother caused me to reflect on my own experiences in psychiatric wards.  I considered the many factors that negatively impact psychiatric patients during lengthy forced hospitalization, with social isolation and loneliness being among the most significant.  Psychiatric facilities have many unique challenges involving risk management and safety that restrict a patient’s freedom and autonomy.  Some of the safety measures taken at facilities may be very traumatizing for patients and do not create therapeutic environments.  The conditions of these facilities and the nature of coercive psychiatry have dehumanizing effects on patients.

For many reasons, facilities that provide inpatient psychiatric services have very limited visiting hours and, with the ongoing COVID pandemic, family visits are further restricted.   At the hospitals my brother and I were in, I witnessed very few visitors coming to see other patients.  Patients I met and spent time with were obviously very lonely.  I remember seeing people playing solitary or putting puzzles together by themselves for hours on end.  Overall, these places were typically understaffed, and staff members spent very little time engaging patients, contributing to a detached environment for both the residents and their caregivers.  Many staff members also seemed like they were dissatisfied with their jobs and experiencing burnout, showing little compassion for patients and in some cases, being just plain mean. The treating psychiatrists spent just a few minutes with the residents every few days.  Sometimes a full week would go by before someone was seen by their psychiatrist.

Individuals involuntarily hospitalized in psychiatric facilities are typically not allowed to have access to their cell phones or electronic devices.  Under coercive psychiatric treatment,  patients can also be legally denied access to the internet for days, weeks, or even months. Visitors are not allowed to bring in cell phones or electronic devices for patients to view, either.

For many medical patients, the internet can play a key role in engaging and empowering them to understand and choose among their healthcare options. But for the vast majority, this type of empowerment may come at a much slower pace; as members of a marginalized population, they are too often deprived of the opportunity to access this information.

Typically, psychiatric patients have no television, radio, or phone in their room.  Some wards only have payphones, or a shared phone with limited use, so patients have very little contact with the outside world.  Televisions and radios are usually housed in a dayroom and controlled by staff.  For safety reasons, furniture and windows may be bolted down.  Beds are usually small and uncomfortable, with pillows covered in plastic.  Activities, entertainment, exercise, food, and even water can be limited.

Use of showers may be only at set times during the day.  Personal hygiene items are also very limited, and patients most likely have access to only a few travel-size items like toothpaste, shampoo, hand lotion, a cheap toothbrush, and a small pocket comb.  Items such as dental floss, mouthwash, conditioner, hair care products, hairbrushes, beauty supplies, blow dryers, and razors are usually not allowed.  Men are allowed limited use of electric razors.  Most individuals discharged from a lengthy stay in a psychiatric ward are in need of a haircut.

Patients are typically allowed very few possessions, only specific clothing items, and limited gifts from visitors. Unlike in a medical hospitalization, cheerful flower arrangements are not allowed and get-well cards seem rare.  During their stay, patients are typically required to wash their own clothes and change their own bedding.

While staying in psychiatric wards, not having access to even a pen and a tablet of paper really bothered me.  Sometimes the only writing utensils available were broken crayons.  I hated not having a calendar, so I would make myself one to keep track of the date, holidays, family birthdays, and when my bills were due.  Other patients asked me to make them a calendar too.  During one hospitalization, a family member brought me a set of watercolors and to entertain other patients, I painted pictures of whatever they requested. I would also make birthday cards for patients who had no other form of celebration.

Many patients are admitted to psychiatric wards unwillingly during a crisis situation.  Some of my fellow patients only had the clothes they came in with and, without visitors, they had no access to other clothing.  I was always blessed to have family visit me during my stays and bring me whatever I needed.  Very often I would give other patients in need one of my sweatshirts or a new pair of socks.  If a fellow patient needed a different size, I would ask a family member to stop at a local thrift store to get them some extra clothing items so they would feel more comfortable during their hospitalization.  I enjoyed getting to know the other patients and helping them through difficult times simply by showing them compassion, playing simple games with them like tic-tac-toe, and getting them to laugh a bit.

Needed: Compassionate Care

I feel my brother was harmed not only by psychiatric drugs, poor nutrition, and dehydration but also by the lack of compassion, social isolation, and dehumanizing experience typical of psychiatric facilities.  Among the family members and caregivers that have been involved in my brother’s case, I have witnessed how he responds best to those who exhibit a tremendous amount of patience, understanding, and compassion.  We have strived to ensure my brother’s home is a healing environment so that everyone involved in his care will benefit.

For the first time in four years, my brother will be waking up on Christmas Day in his own home.  The home he purchased 28 years ago and worked hard to maintain.  His home is clean, bright, and cheerfully decorated for the holidays.  He has the freedom to eat when he wants and plenty of healthy food choices.  Family members and compassionate caregivers visit him throughout the day, and he and I FaceTime daily.  He is gaining weight, looks healthier, and is becoming more alert and responsive.  He now shares his home with a roommate who understands his condition and provides compassionate assistance as needed.  Our skilled nurses have been absolutely amazing and an essential part of making his transition to homecare.

By sharing my brother’s story, I hope to increase awareness on the dehumanizing aspects of forced psychiatry and the positive impact of compassionate care. Moving forward, healing environments for psychiatric patients are critically needed.  Last January, Upstate University Hospital in my hometown of Syracuse, New York, proudly announced the opening of an eight-bed inpatient psychiatric unit for teens. The unit features a comfort room where patients can calm down with weighted blankets, bean bag chairs, music, and muted lighting.  Patients have a private room and access to an activity room for art and music therapy.  More facilities should consider this model. May the new year bring us all restored hope and positive change.

 

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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16 COMMENTS

  1. Psychiatry is a disabling and worse, killing machine.
    It’s disgusting that they might consider themselves as human and
    yet able to watch your brother’s deterioration, leaving
    you to be his real doctor to clean up their mess.

    Your brother was lucky to have you. Psychiatry gets away with murder.

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  2. Sam,

    Thank you so much for taking the time to read my brother’s story and I greatly appreciate your comment.

    One of my mentors in life suggests starting thoughtful discussions with a definition.

    Overall, what I relate our “Mental-Hell Care system” to the most is a dehumanization process. The process of dehumanizing is what successfully aids in the masses in failing to see main stream psychiatry as a “killing machine” and advancing change.

    Definition of dehumanize
    : to deprive (someone or something) of human qualities, personality, or dignity: such as
    a: to subject (someone, such as a prisoner) to conditions or treatment that are inhuman or degrading
    b: to address or portray (someone) in a way that obscures or demeans that person’s humanity or individuality
    c: to remove or reduce human involvement or interaction in (something, such as a process or place)

    My brother is one of my most favorite peeps in my life. Before taking psychiatric drugs, he was so laid back, hardworking, down-to-earth, humble and just a lot of fun to be around. What I love the most about him is he is a no drama kind of a guy and someone you can trust. When he turned 50, he started taking his health seriously and became physically fit through a lot of exercise, good nutrition and martial arts. He set a great example and encouraged others to have a healthy lifestyle. As a manager in a grocery store, he could run circles around employees half his age. Somehow, someway, between his physical fitness, martial arts training and a lot of family support he managed to survive the “killing machine”. It took a large family who said a lot of prayers for us all to get this far.

    I had a much shorter experience in the “killing machine” and I know for sure there is no way I could have survived the living hell that he is now slowly pulling himself out of.

    Considering my brother’s case and that of many others, it was his primary care physician, not a psychiatrist, who first prescribed psychiatric drugs that ended up tossing him into the “killing machine”.

    During the past four years, I have participated in dozens of family meeting regarding his care. I have a lot of experience advocating for myself and others, so I had an arsenal of information at my disposal to do battle against very arrogant practitioners who were drugging him to death, while profiting the hell-care system. Keeping my cool was not easy, but I tried very hard to consider the psychiatrists, MDs, nurse practitioners, social workers, aids, cooks, security guards, all of the staff at these facilities in charge of billing/administration/public relations and the attorneys we dealt with are also humans who because of our current paradigm of care and misappropriation of funding, have become dehumanized themselves. I feel sorry for them for having lost their ability to care about those being slowly poisoned by drugs.

    I did my best to communicate in a balanced way, trying hard not to accuse anyone but also not to excuse anyone. My approach was to try to maintain integrity, be respectful, document EVERYTHING and educate by laying out the facts of his case. Admittedly, there were times I failed at trying to control my sarcastic nature and Italian hot headedness but I am human too. Luckily, one of my amazing sisters who is actively involved in his care was also at the meetings and our “good cop/bad cop” routine worked well to drive home the message.

    I like your description of a “killing machine”.

    Machines are used in business for mass production, so if we analyze main stream psychiatry as a business, not a profession:

    It is the concept of “mental illness” itself that empowers the business of psychiatry as having the medical experts whose job it is to label humans and add them to the system.

    If we consider “mental illnesses” as nothing more than descriptions based in psychoanalytical concepts of a wide variety of moods, thoughts, behaviors, feelings, sensations, personalities, ways of being, habits etc. that psychology experts have categorized and determined to be “abnormal”, not just for humans, but for animals who are also prescribed the same drugs as us.

    As a business, main stream psychiatry has successfully used products from the pharmaceutical industry to help market this concept and sell it to the masses, most of whom choose to pay for the expert’s services.

    Without doing a physical exam or any diagnostic testing, a medical psychology expert is able to quickly determine another human’s abnormalities and acts as a salesperson for the company who has manufactured products to treat the perceived human abnormality/abnormalities.

    The psychiatric consumer is purchasing and consuming hazardous products so they will hopefully become a more normal human being.

    Forced psychiatry is an especially unique business concept because consumers who are determined to be abnormal people are forced to contract services the expert who determined they need their expertise. The person labeled abnormal can be court ordered to purchase and consume the products the experts guess they will need, all while the expert and the product’s manufacturer openly admitting these products are defective and can make the consumer worse, kill the consumer, or make the consumer kill themselves/others. The experts and the courts don’t care about side effects the forced consumer must endure.

    What other business has this power? and with no government oversight?

    What other products could have TV commercials openly admitting this product is known to be defective, might not work at all, might make you worse, might even kill you, or make you kill yourself/others and still be in demand?

    Other products would be recalled. Other products would have refunds.

    It is because of a demand for the human psychology expert, that the “killing machine” business evolved into a very successful, unregulated powerbase of authority in our country.

    As a society, we bought into this sales pitch and it is our society that is turning a blind eye to the “killing machine”, partially because we lack social connectivity and knowledge of alternatives.

    The only reason why I have a passion for advocacy, is because I have been through it myself and I was blessed to find alternatives that worked for me. I am also considerate and respectful of those who claim to have had success using psychiatric services/pharmaceutical products and even ECT.

    The only way to dismantle the “killing machine” is to find middle ground and create a wide-spread awareness of alternatives and best practices.

    I think a lot of people involved in trying to shift the paradigm feel like they have been either preaching to the choir, or spitting in the wind.

    Our family’s goal is to stay positive, give gratitude and create a healing environment, recognizing human compassion.

    I first became aware of MadinAmerica.com by coming across CCHR, then PsychRights and then ISEPP (formerly ICSPP).

    I am greatly appreciative of the effort of Robert Whitaker and all of those involved in transforming MIA into the powerhouse that it is.

    With all of the challenges we have faced during 2020, and realizing just how dehumanizing the hell-care system is, I am adopting ISEPP’s motto of “restoring humanity”.

    Yes, we are stuck cleaning up their mess, but because I’ve seen too many times where our angels have come through with a last minute Hail Mary pass for us, I have no anger towards anyone. I am just grateful for all that we still do have. Everyday is a gift.

    Once again, thank you so much for reading and have a great day 🙂

    “On the mountains of truth you can never climb in vain: either you will reach a point higher up today, or you will be training your powers so that you will be able to climb higher tomorrow.”

    Friedrich Nietzsche

    4/20/20 Dr. Jennifer Daniels – “Interview with a Healer”

    https://youtu.be/ABQI-_d-wCE

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      • Evan,

        I greatly appreciate you taking the time to read this post and your comment made me smile.

        Twenty years after finishing an associate’s degree I was blessed with the opportunity to continue my education. After being in the work force during that time, going back to school as a nontraditional student was one of the most enjoyable time periods of my life. Like most nontraditional students, we appreciate educational opportunities much more than we did in our youth and we see things through very different perspectives. We also are more driven than most students and end up ruining the curve.

        I was blessed to meet many students who took a liking to me and appreciated partnering up with someone who took learning seriously but could still make them laugh.

        One of my all time favorite compliments I have ever received in my life came from a professor who I had great respect for. He was also a practicing attorney who worked on high-profile cases. He was passionate about teaching and it showed.

        After getting into a debate situation with him and it was obvious I was successful in getting most of my points across, he stopped, looked at me and said, “I just love your tenacity” he then took the papers he had in his hand, rolled them up, and swatted me over the head and laughingly said “but I hate that you are right, will you please stop, I can’t take anymore!”

        That was the first time in my life someone described me as having tenacity and I like it.

        Not everyone appreciates tenacity, especially when it pushes a truth they are not ready to handle.

        I can think of a few psychiatrists who had me for a patient and really did not appreciate my tenacity at all.

        Thank you for valuing that quality, it means a lot to me.

        “It is better to light a candle than curse the darkness” 🙂

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  3. Maria, thank you for the very eloquent response. It popped into my mailbox, although I don’t
    see it up in here yet. Sometimes it takes a bit to catch up.

    I agree, that psychiatry itself is caught up and in this dehumanizing, it becomes
    self directed, yet they seem to have the power to withstand the pain.
    I suppose most emotions being gone. I have seen deep seated anger there, and perhaps
    it is the one way for them to detach.
    I’m least concerned about their wellfare, as they do not need advocacy nor protection, nor pity.

    But I am elated that you chose to all stick together and stay connected, as family and friends.
    Your response brought me to tears, and I hope something good comes out of each life that
    got hurt by a power that does not have to answer to anyone at all.

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    • Sam,

      Thank you so much for your kind words and thoughtful response. I respect and understand your opinions.

      My beliefs are the only way to truly fix the problems that exist, is to openly and fully understand why they exist.

      What were the circumstances in our society that allowed psychiatry to design the “killing machine” and why does it still exist?

      Bob’s book Mad in America and CCHR’s Industry of Death Museum provide the history behind the creation of the “killing machine”, and Bob’s other books, along with hundreds of other books, documentaries, nonprofits, papers, websites, and other resources evidence the destructive nature of the “killing machine” and advocate for change.

      With so much information and effort being put forth for so long, why have we failed to reach the critical mass needed to dismantle the “killing machine”?

      The labels of “mental illness” place individuals into the most unwanted class of people in our society.

      More than any other piece of information regarding the history of psychiatry, the words of Justice Oliver Wendell Holmes upset me the most.

      Holmes, known as the “Great Dissenter” for his eloquent minority opinions, wrote these callous words in the opinion of Buck v. Bell, a 1927 Supreme court case upholding a Virginia law that authorized the state to surgically sterilize certain “mental defectives” without their consent:

      “We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices, often not felt to be such by those concerned, to prevent our being swamped with incompetence. It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes.”

      Holmes concluded his argument by declaring that “Three generations of imbeciles are enough”. The sole dissenter in the court, Justice Pierce Butler, a devout Catholic, did not write a dissenting opinion.

      The “Killing Machine” was allowed to be created by our society to deal with our unwanted.

      The paradigm will only shift when we reach the critical mass. We need more weight on our side, we need an alliance.

      Unlike other the so called “National Alliance” on “Mental Illness” NAMI, we have no celebrity advocates who will stick their neck on the line for us.

      https://www.nami.org/About-NAMI/Who-We-Are/Meet-Our-Partners/Influencer-Ambassadors-Supporters

      What gives NAMI the right to suggest the United States has a national alliance on “mental illness” anyways?

      Report comment

  4. I too have been forcibly medicated for over 18 months (which is nothing compared to your brother’s experience). I was arrested, and served 18 months of conditional release from an Ohio County jail. While I was under conditional release, I was forced to take several heavy duty psych meds. I was under the care of the county psychiatrist, who diagnosed me as schizophrenic. Then schizo-affective. Then bipolar. The meds changed, sometimes abruptly, throwing me into withdrawals. When the withdrawal was bad enough and I went into psychosis, I was forcibly put into a psychiatric ward on 2 occasions in the past 3 years.

    Once it was a friend who notified the county sheriff that I was in psychosis. Suddenly my house was filled with police cars and an ambulance, and I was taken against my will, jabbed with needles of God knows what, strapped to a board, and taken to a local hospital for monitoring. I was transferred to the psych ward and stayed several weeks, somehow convincing my attending physician that I was no longer psychotic. My husband cared for me upon my arrival home.

    The second time, I went to the hospital voluntarily because I was rapidly tapering off clonazepam and hadn’t slept in several days. Even though I went voluntarily, I was treated horribly. Once transferred from the local ER, to the Cleveland clinic Akron General hospital (where most of the staff remembered me) in the early morning hours, I was “disinfected” (strapped down and washed very roughly) and shown my room. I had a roommate the first night. But I was put in a single room after that, so I didn’t have to share a bathroom with a slob.

    Twice in ten days I was thrown into solitary confinement, for unknown reasons. The room had no air, and it was August. The second time in solitary, I was forced to accept 2 shots of Haldol. Whenever I questioned what meds I was being given, I was told that there was no time to answer my questions. One of the nurses was very nice and explained everything to me. But she was the exception to the norm. I was constantly threatened with solitary confinement if I didn’t just take what I was given.

    I developed a UTI, of which I was certain due to blood in my urine. Their response was to make me wear depends instead of underwear. Once I was released I went straight to my GP and was diagnosed with a bladder infection.

    I was once awakened by a nurse flashing a light into my eyes. I think they thought I was dead, and were checking my pupils. I never had much sense of whether it was day or night, but this was in the middle of the night. I was told to go back to sleep. But how do you do that when you’re suddenly awakened like that??

    I could go on and on about the injustice I’ve experienced. I have anger issues which I’m working through in therapy. I have finally found a psychiatrist who I think I can work with, to get me off my remaining meds. Cross your fingers that I’ve learned from prior taper attempts, to go as slow as I need to go. And that this new, holistic psychiatrist will let me taper at my own pace.

    18 months of Abilify injections gave me tremors, and of course, there’s a drug to control them 🙁 I’ve been free of the injections for a little over a year now, and the fog has mostly lifted. I feel a sense of peace and Positivity. At 52, I’m looking at years of slowly tapering.

    Thanks for telling your brothers story. I hope he makes a full recovery.

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      • Thank you Sam. It’s been a little over a year since I stood up for myself and said a firm NO to Abilify injections, and additional psych meds. I’m elated as well! I do believe there is life after years of poly drugging. And I have a good team of doctors and a therapist who has been through it himself. Life is sweet now

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    • Krista,

      I greatly appreciate your response, especially as it seems like this is the first time you have posted a comment on MIA.

      May I ask, are you new to MIA?

      I have so many things I would love to comment on from what you wrote but it’s late and I only like to write when I have time to respond thoughtfully.

      Briefly, I would like to offer encouragement and say

      1. your writing style is a lot like mine, not flowery or playing up the drama, more factual and point blank, personally, I write that way because I think it is a “safe” way to put information on the internet that involves very personal details. Too much information just opens the door for criticism, no thank you, we have been through enough
      2. what you wrote is clear, concise and well-organized, I am guessing you have a background that was dependent on strong organizational skills and that has been a plus for you
      3. what ever you are doing to recover, it is working well for you
      4. please consider submitting a narrative to MIA because I really enjoyed reading your comment and found as much value in reading your comment as you did in my post

      I’m so glad whatever it was that led you here inspired you to share your story, all my best, Maria

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  5. Maria, thank you so much for this post. I was wondering how typical my daughter’s hospital was, and I now know that it was typical. I am so sorry for what you brother and your family went, and still going, through. I hope that he will make a full recovery – it seems like there promising signs, and he is fortunate to have such sister

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