On Friday, I re-introduced readers to Joan and Linda Bishop, whose two-part story I originally published in February 2010. In today’s blog, we get to read Linda’s own words as she describes how her untreated mental illness slowly takes her life.
Part Two: Linda’s Story
Joan Bishop tried to help her sister, Linda, after she developed a severe mental illness while she was in her 40s. But Linda didn’t want her help. She refused treatment and medication and Joan’s attempt to obtain a guardianship over her sister was rejected by a judge.
After a drunk driving incident, Linda got further into trouble by throwing a cup of urine at a correctional officer while in jail. She was charged with a felony. Eventually, she was involuntarily committed to the New Hampshire State Hospital, but she refused treatment and would not take medication. After a year, she was released without any follow-up.
Because Linda had refused to sign a HIPAA wavier, Joan had no idea that her sister had been discharged until several months later. What follows now comes from a journal that Linda began writing four days after her discharge.
After leaving the state hospital, Linda walked several miles and then broke into an unoccupied farmhouse that had a For Sale sign in the yard.
Oct. 7th
Finally feel caught up on my sleep! Nice and warm last night under an orange ripcord bedspread and big piece of red/black wool-upholstery material. Found crabapples yesterday afternoon – can’t figure out how to put electricity on – otherwise could wash clothes and take a bath. I saw Orion’s Belt outside of the window! Cardinal and chickadee on lilac outside of window… Know I can’t walk far without keeling over – apples are good but they only have 80 calories a piece, plus I look horrible. Clothes are filthy–definitely look like a vagrant or hobo, but I’ve always liked hobos.Oct. 8
So this is my 5th day of freedom – basic synopsis – left NHH at 11 am…then into woods…So here I sit for the second day, have water and apples awaiting further instructions. Can’t walk too far on just apples. Don’t really want to talk to anyone and even attempt to explain the situation… Crying now. Just disappointed again. Don’t see how I can live on apples until Advent.Oct. 10th
A week of peace…Sore place on inside right lower jaw–probably from eating too much acidic stuff and having to chew on that side.Oct. 12th
Toilet situation not good. Looked in mirror. I look drawn and haggard…I bet I’ve lost ten pounds.Oct. 15th
I’m hungry. The days pass slowly.Oct. 17th
Very bored and despondent just because I’m so hungry and apples aren’t meeting my needs. Not real pleased with this situation–doesn’t make sense to be barely existing.Oct. 18
Spent today in bed. Don’t feel good, weak and have headache.Oct. 23
Keep thinking about what I’d like to eat.Oct. 30th
Figure I have a good 300 crabapples which should be enough as I figure I have 26 days to go, but who knows.Nov. 7
Fainted and fell hard in kitchen, hurt left shoulder, upper back and neck. Dear God: I’m trying, but this is very difficult especially since I am in physical pain.Nov. 11th
This is fourth anniversary of Mom’s death. Cold, cranky, hungry and unhappy – eating more than 12 apples a day otherwise I get faint.Nov. 16th
Miserable night…Contemplating my mortality and though my death does not make sense considering everything I have been working so hard to achieve it would be nice to not be in such emotional pain.Nov. 24th,
I forgot daylight savings time, so it really is 8 a.m. not that it matters much in my current life style!Nov. 27th
A lot of hair comes out each time I comb it…probably because of diet. Please God, only let there be a week left. I need a shower and food.Dec. 3rd,
Tomorrow last day of apples. No signs of rescue.Dec. 4th,
Dear God, please save me. I’m trying but don’t know what to do. Amen. Can’t imagine I’ve missed some clue or sign that I was supposed to do anything different than I am.Dec. 6th,
Facing death by starvation was horrifying and traumatic and took quite a while to adjust and consider the whole situation rationally and spiritually.Dec. 8th,
Had two long ‘out loud’ prayers to God in middle of the night something I don’t usually do. Figure he has given me a good brain to figure out what to do, but it’s obvious that what I’m in the middle of and fighting against is too big and powerful and evil – definitely, the tentacles of the monster have spread.Dec. 9th,
Extremely difficult to walk and stay upright. I had no idea or premonition that I would die here.Dec. 10th,
This is the fifth day without food though the three apples I had four days ago don’t count for much.Dec. 18th.
This is my 13th day without food. Fell yesterday when coming in from getting snow for water, hurt left knee, shoulder and cheekbone, writing this lying down – only time I feel good is when I am sleeping because then I forget.
Linda’s body was found in mid-May when someone looked in the window of the farmhouse and called the police. The medical examiner estimated that she died January 14th and listed the cause of death as starvation and dehydration due to mental illness.
“From what I understand, this is an unusual description,” Joan told me.
The police gave Linda’s journal to Joan. After reading it, she decided that Linda had thought someone was coming to rescue her – she often fantasized about a man whom she had met years ago – but she had to stay in the farmhouse or else he would not be able to find her.
“What was most significant and what I would want people to know is I believe strongly that the system failed here,” Joan said. “The biggest frustration is the waste of potential, and how things broke apart and allowed a person to die.”
I am grateful that Joan has shared her sister’s journal. Clearly, Linda was lucid enough to describe such things as the stars and birds. She knew the calorie count of apples and understood that she might be starving herself. Yet, she also had a severe mental disorder.
There are many ways that Linda’s case could have been better handled. I wish that she had been introduced to a caring psychiatrist such as my friend, Dr. Tracey Skale (See Psychiatrists vs Pill Pushers.) She should have had a case manager.
But her story brings us back to the same sticking point that I faced when Mike got sick.
What do we do when someone is sick and refuses our help?
This is a very difficult civil rights question that, I believe, is at the core of so many of our problems. It is not a question that is easily answered. We must protect civil rights. But we also need to help people who are clearly sick. Right now, dangerousness is the criteria and you know how I feel about that much faulty standard.
So how do we change our system so that the Lindas of the world don’t die in farmhouses?
About the author:
I can relate personally; and offer to answer, Pete, your loaded questions. Sadly, Linda is not the first or last in this scenario.I almost got faint reading her story. I, too, have ‘staked out’ in farmhouses, barns, as I’ve wandered, manic, and in denial, refusing all help. Even after complete acceptance of my bi-polar and years of living healthily w/ meds, proving that the veteran mentally ill can relapse into a state of denial. If it were not for concerned citizens who either called law enforcement or my family, I would not be here. There are no psychiatric medical teams strolling the streets and abandoned by-ways, so law enforcement personell and astute and responsible citizens have the best opportunity to help safeguard people who have truly lost their faculties. I want to say tracking and accountability are needed. Every patient in a hospital for 2 or more hours should have a complete discharge plan w/ diagnosis, treatment and meds schedule and a mandatory guardian who will check on them or be with them 24’7. A ‘proving time’ should be set, in which the patient shows personal responsibility/safety. As it is illegal to attempt or commit suicide, these laws need to be virtually enforced.
Hospital and’or medical personell need to be held accountable. If a patient harms himself or others, penalties must be levied against them. Malpractice suits occur regularly for operating room snafus, none at all are on record for psychiatric big blunders.This fact is telling of our throw away mentality toward the mentally ill.
We need excellent lawyers to step up.right now, Kevorkian’s right to die is upheld in every mental institution, evidenced by signage that reads, ‘you have the right to refuse medicine and treatment.’ The mentally ill have a right to live, and they have the right to assume that when they lose their mind and cannot make rational decisions, ( just like the comotose and brain-dead), that the justice of the courts will uphold their right to life. We need the same lawyers who protected Karen Quinlan years ago, to protect the mentally ill from the very same outcome. If civil libertarians want to protect privacy, choices, and freedoms, then they must operate on the premise that all people choose to live. Currently, the ACLU is promoting emotional, mental, and physical suicide. The ACLU perhaps shoud be sued for it’s unlawful contributions to the illegality of suicide. Each time a patient refuses to take meds, thanx to the ACLU’s sign in the hospital, and then kills himself, they are muderers and if anyone cared, there would be lawsuits. And then the money won might be donated for research!
I would like to read the article that is linked in the story above, because our son has a ‘pill pusher’ at the community health center — we don’t have a case worker, and the doctor doesn’t take walk ins. When our son begins to feel a manic episode coming, the clinic’s only suggestion, if he can’t ‘wait until the next visit’ is to go to the county hospital ER. This means hours of waiting, and most likely no admission, because he’s ‘not a danger to himself or others.’ Anyway, I clicked the link, to read the story, but it went to the wordpress site, and I couldn’t figure out how to log in. Sorry about any inconvenience. Thanks for your work.
IDEA #1: EDUCATE THE PUBLIC: Where are all the community service annnouncement commercials for M.I.? I see maybe one alart about suicide every 3 months… Why can’t NAMI promote these service announcements more frequently & with various kinds o fM.I.? Why can’t this tragic story & those like it be placed front & center in the collective consciousness of this country with a critical message: “There but for the grace of god… go I…. (And you… and me… and everyone else in this country!) Nobody is immune from getting mental illness — [at ANY age, not just young adults] –anymore than they’re immune from getting cancer. YOU could be this person in a year…. 5 years… 10 years from now… Help those who can’t help themselves…”
IDEA #2: QUESTION POLICY-MAKERS, CIVIL LIBERTIES & LAWS: There’s an extreme and unbalanced view about “freedoms” in this country as it pertains to M.I., treatment & laws. Is it about our culture of “absolutes/all or nothing?” Like in New Hampshire’s state motto: “Live free or die!” (Does nothing else exist in between?) Or is it about the extreme & irrational fear of “being controlled” by the psyche’s of policy-makers & those who influence policy-makers? Policy-makers who water-down laws with massive loop-holes that make these laws practically useless…. Is it really a fate worse than death to be placed in a safe, healing environment like a hospital, rather than be left on the street to suffer and die under horrific circumstances? It’s gut wrenching to see your loved one’s “personal freedom” taken away when they’re placed in a hospital “against their will.” But isn’t that exactly what mental illnesses do to our loved ones even before any laws take away their “freedom?” It’s the mental illness that takes away our loved ones “freedom” to choose & decide their own lives, health & futures…. not the laws whose purpose is to get them back on their feet & functioning. And yet policy-makers and special interest groups completely & irrationally ignore this point. Why?
IDEA #3: WE, THE FAMILIES OF THE MENTALLY ILL, ARE THE “REAL FIRST RESPONDERS”…. NOT THE POLICE. WHEN WE “FAIL” TO GET OUR LOVED ONES HELP, THEN EVERYONE IS SOCIETY “FAILS” RIGHT ALONG WITH US: Had my brother had a crystal ball to see into his future, before he was diagnosed with paranoid schizophrenia (which began at age 36), I know for sure that he would have told me to do everything humanly possible to save his life & help him navigate his illness. Even if that means allowing the law to place him in a hospital “against his will.” I believe that during a psychotic break, he doesn’t have his own will, it’s the “will of the disease” that is taking wrong turns or even possibly deadly choices… not my brother. We, who are the “real first responders,” with our loved ones illness must do battle against all the blocks, chains and hurdles that trip us up. But tragically, there are so many that eventually we trip up and stumble, no matter how hard we try. We need to continuously show & remind society, that when we “fail” to get our loved ones the help they need, then ALL of society fails.
Nine months ago, my own child almost starved to death in his own bed at home when he stopped taking meds, had a delusional broken foot, preventing walking, and believed I was poisoning him. He lost 25 lbs the month he refused food, and I sat by his bed, soothing his forehead, holding his hand, giving him sips of water and spooning infantile amounts of food into his mouth when he would let me. If an elderly person was allowed to do this in a nursing home due to dementia, that nursing home would be liable for a wrongful death. I’ve often wondered if I’d have been charged with homicide or neglect had I let the situation continue until he died, as parents of certain religious beliefs are, who refuse life-saving treatments for their children with cancer, etc. Yet, the mentally ill are encouraged to make their own choices, which is the right path, unless they are in the throes of complete psychosis, which removes choice. They cannot choose, period. The laws around patient choice in mental illness are frightening; I don’t know what can change those laws, but I am actively writing people who call themselves our lawmakers to relay our story and force a change. That journal rattled me; I think I cannot forget it now, and will include its synopsis in my letter writing campaign. This country has in many ways become a concentration camp for the severely mentally ill. We used to have “snake pits” for the mentally ill. Now we have death camps, at home.
Laura Pogliano
We still have snake pits for the mentally ill. That has not changed. Some of the places are horrible. I would rather die alone in a farm house than die in a snake pit that smells like urine, medicated to the gills.
This story breaks my heart.
We fight for the Lindas of the world every day. I, too, wish I had the opportunity to work with Linda and her family. Today, I will see my patients with Linda’s story in my mind. These needless tragedies must stop.
Thank you so much, Pete.
I saw a few infomercials from Bring change 2 mind. org, a new advocate group by Glen Close, actress. NAMI has the money – their director is well over paid! Shame on NAMI, they should have been doing this right along, and still, are silent on national media. The gov’t NIMH does notheing to educate. Compare to the gov’t infomercials that constantly run on the hazards of smoking cigarettes! The Dept of Health and Human Services, a branch of the federal government is spearheading a national debate on mental health, this year. Now is the time to pester them to put tax dollars to good use. Maybe NAMI needs to re-formulate it’s mission, and get back to basics. They enjoy great funding from drug companies, and have lost sight of their original mission. Mental illness is PREVENTABLE, and that is a fact that drug companies do not like, ’cause they reap profits from drugs. Every disease from cancer to heart disease, gets a lot of air time on PREVENTION!
Not mental illness! We can push for more drugs and responsible, effective mental health care. Or we can do the real hard grunt work of discovering causes, and working together to prevent these illnesses. Only the latter will ensure a better quality of life for our children and grandchildren.
Once again the HIPPA law does more harm than good for individuals with a mental illness and for their families who want to advocate for them.
Suggestion:
NYS’s WRAP program encourages individuals who are currently feeling well to engage in advanced planning activities for their medical, housing and financial needs for a future time when they no longer have mental clarity and find it hard to make personal decisions.This is an opportunity for both the individual and family/friends to plan a safety net for the future.
Terri
I wonder what would have happened to Linda if she had had respectful, caring treatment? There is no indication she did. Who wouldn’t fight to get out of a state hospital? They’re often horrible places. I don’t blame Linda. I wouldn’t have listened to people who offered the kind of care that is provided in state hospitals. Who would?
Instead of people arguing to take away more of our rights, they need to worry about the “treatment” provided to people with mental illness. Some of it is horrible and is the very reason people avoid it and fight to get away from it. I have said it before and I will say it again, people with mental illnesses often fight to get out psychiatric hospitals, yet interestingly they often try to avoid discharge in a regular hospital. It’s because psychiatric hospitals often use threats to gain compliance, rather than offering compassionate care. Patients know the difference.