Making the Transition to Compassionate Care

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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.

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.

  2. 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.

  3. 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.

      • 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

  4. 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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