It’s been a while since I’ve posted. You may take that as a given that things are going sorta kinda okay with my bipolar mother. Now that she’s in a retirement home so many things are easier including mandatory family obligations such as Mother’s Day.
a Psychiatric and Mental Health Nursing, Frances Payne Bolton School of Nursing, Case Western Reserve UniversityCleveland, OH, United States b Community Health Nursing, Frances Payne Bolton School of Nursing, Case Western Reserve UniversityCleveland, OH, United States c College of Nursing, Marquette UniversityMilwaukee, WI, United States
Purpose: This study examined relationships between vulnerability/risk and protective factors, and family functioning in women family members of adults with serious mental illness. Design and Methods: Using a descriptive, correlational design, this secondary analysis examined characteristics of the family member with mental illness (e.g., diagnosis, level of care) and measures of caregiver stigma and strain, client dependence, family disruption, sense of coherence, and resourcefulness. Findings: Family disruption was greatest in women who provided direct care and whose family member had major depression, followed by bipolar disorder, schizophrenia, and panic disorder. Sense of coherence and resourcefulness were associated with lower family disruption, but did not mediate the effects of caregiver strain.
Practice Implications: Interventions restricted to one family member may be insufficient for improving the family functioning.
ISSN: 00315990CODEN: PEPYA Source Type: JournalOriginal language: English
‘Those who use emotional cutoff as a coping mechanism often ironically end up trying to replicate their prior relationships in their new ones in order to fill an emotional hole or make things “different this time’ reports this article from Psychology Today. The reason why I bring this up is, as PG Wodehouse once wrote, the icy hand of Christmas is about our throats once more.
And of course this means my mother is wondering why she has no relationship with her daughter. My bi-polar mother really wants a Normal Rockwell family but it’s not n the cards.
Well, my mother is mentally ill and I strongly suspect her daughter (my sister) is as well. I keep telling my mater matris to focus on the good in the here and now and not to obsess over what she can’t change in other people but frankly two mentally ill people are a lot to handle. I’d never tell her this but the two of them staying apart from each other may be as good as it gets.
The article goes on: ‘Sometimes willful estrangement is a necessary step a person must take to protect themselves. However, it’s important to note that estrangement can also happen because of a lack of skills to resolve common conflicts.’
Why Do Some Siblings From Troubled Families Turn Out Fine, While Others Flounder?
This article looks at dysfunctional families and touches upon how one person can get saddled with caregiving.
‘To illustrate, say that one sibling is the “Chosen One” who has agreed to fulfill a dysfunctional role: He’s the one who never gets married so that he remains free to never leave home – in order to keep an eye on an ailing mother after a father runs off. Let us further suppose that the Chosen One suddenly says to Mom, “I can’t do this any more. I’m moving out so I can have a life of my own. You need to find someone your own age to take care of you!” and actually moves out (Mind you, this is something most people playing such a role are highly unlikely to ever do).
‘If he follows through, he will usually first suffer universal condemnation from every relative he has.’
The Twelve Red Flags of Dysfunctional Helping and Giving
Sometimes our helpful intentions give way to dysfunctional helping and giving. The solution isn’t to stop helping altogether; it’s to set helping boundaries once telltale signs of unhealthy helping appear. I call these signs the “Twelve Red Flags of Dysfunctional Helping and Giving.”
Why Canada’s reliance on unpaid care is not sustainable
Contributed to The Globe and Mail – Published Thursday, Oct. 02 2014, 8:55 AM EDT – Last updated Thursday, Oct. 02 2014, 9:00 AM EDT
Nicole Bernier is an advisor with EvidenceNetwork.ca and research director of the Faces of Aging program at the Institute for Research on Public Policy.
The unexpected and largely unreported good news about homecare in this country is that the vast majority of Canadians who receive home help or homecare for a chronic health condition are getting all the services they need.
According to a recently released Statistics Canada article, 2.2 million individuals representing 8 per cent of Canadians 15 years and older, received homecare in 2012. Most of these individuals, 1.8 million, consider that over a one-year period they received all the services they required (such as personal care, transportation or household maintenance) to help with their daily activities. Only a minority, approximately 15 per cent, said they had unmet homecare needs.
Fully meeting the needs of the vast majority of homecare recipients is a notable achievement for Canada, considering this country has no national homecare system, and considering that provinces, which have jurisdiction over homecare, are known for anemic budgetary expenditures in this area.
So how does Canada achieve so much with so little? Canada has a heavy reliance on informal, unpaid caregivers.
Informal caregivers consist mainly of spouses and adult children of persons with homecare needs, but may also include their other relatives, friends and neighbours. Women are more likely to be caregivers and to provide more care hours than men, and spouses are the first resort for care.
Together, 8.1 million informal caregivers provide an estimated 70 to 80 per cent of all homecare in this country, free of charge. Every year, they are saving the public purse an estimated $24- to $31-billion – no small amount. Thanks to their major contribution, formal services paid by taxpayers play only a subsidiary role in home help and homecare provision.
Paid providers from public healthcare agencies come into play when unpaid family care is not available or is insufficient, and when other options, volunteer or private, are not viable either.
So what’s the problem?
Unpaid caregivers typically want and prefer to provide the care to their loved ones, rather than having formal care providers come into the home. But the role can be demanding.
According to a 2013 Statistics Canada report, nine in every 10 informal caregivers provides care for a year or more. One in every 10 provides 30 hours or more of care every week. One in five considers that caregiving impacts their physical and emotional health negatively. Many informal caregivers incur care-related out-of-pocket expenses, miss days at work, or have to reduce their paid work hours. Some even quit their job. For employers, this may translate to absenteeism and lost productivity.
A detailed analysis by the Institute for Research on Public Policy (IRPP) author Janice Keefe shows that only limited and inconsistent financial supports and in-kind services are available to informal caregivers. As a result, caregivers are left mostly on their own to deal with the negative – and sometimes catastrophic – economic, health and well-being consequences.
In other words, unpaid caregiving comes at a cost for the ones who provide it.
Then there’s the reality that not everyone has a network of friends and family they can call on who are able, capable or willing to handle sometimes complex care needs – in many cases, for care needs required over long periods of time. In 2012, nearly 461,000 Canadians 15 years of age and older suffering from a chronic condition needed homecare but had none – formal or informal. What happened to them as a result is left in part to our imagination. But evidence suggests some of the care gaps may well have resulted in individuals unnecessarily entering hospitals or being transferred to nursing homes instead – at a substantially higher cost to governments than formal homecare.
Many Canadians don’t realize that homecare services are not included in medicare, and provinces are not required to provide support and often do so only sparingly. The problem will likely be exacerbated over the next two to three decades, as the number of elderly Canadians needing assistance is expected to double. Demographic trends and changing patterns of participation in the labour force are such that a smaller cadre of adult children will be left to look after their aging parents.
Relying on unpaid caregivers left on their own is not a sustainable solution – and is likely to have serious consequences for Canada in the future. It’s time for governments to step up and care for our caregivers – and make homecare a priority.
An article in the on-line magazine Salon contains the reflections of a woman whose childhood taught her to be independent and not count on anyone. The trouble is, like any set of tools it has a range of applications. In this case, she found a heap of life lessons in breaking one ankle and damaging another after a slip on the ice. The article is called I Never Learned to Ask for Help by Laura Bogart. The article struck a bell with me.
The sound of a bone breaking is surprisingly slight; it’s a quick snap, like a twig under a boot heel. But it traveled up from my right ankle with the force of a sonic boom, and it would echo in my dreams weeks after I took that first step out onto the black ice that sheathed the parking lot outside my complex. My fall seemed as slow as distant thunder, and as quick as a lightning flash right outside a window.
My right ankle, broken. My left ankle, a category three sprain, a mess of screaming ligaments. I’d end up in the E.R., and then in the office of an orthopedic specialist for three consults over the course of six weeks; six weeks in which I was to remain “non-weight bearing” on my right foot and weight bearing (as barely) tolerated on my left. I’d require rigorous in-home physical therapy before I could use a walker to hurl myself short distances, like some doomed animal with its paw in the teeth of a trap.
Whenever I tell anyone what happened, they always say, “That sound must’ve been the worst part.” They speak with voices half-hushed in an odd reverence — as if the magnitude of my injuries merits the awe afforded to natural disasters and the charred matchsticks of houses they leave in their wakes.
That sound, that everlasting snap haunts me, but it’s not the worst part. The worst part was that first moment after my body hit the ice and before the shock set in: the realizations that I’d just lost the independence that armored me against the world and made me feel strong. And if I wasn’t strong, I needed other people. And if I needed other people, I was nothing — just a scaffold, weakened and stripped by a gale-force wind, ready to splinter with the slightest breeze.
* * *
Strong became synonymous with impenetrable when I was still losing my baby teeth. My father prized a kind of can-do stoicism straight out of Clint Eastwood’s greatest hits. There were no tears, only whiskey. No room for fear, for any feeling, really, other than an obliterating anger. He taught me, through his absences — nights passed out on the sofa; weeks when the slightest infraction (a spilled water glass, a yawn that offended him with its timing) provoked an arctic withdrawal, where he wouldn’t so much as look at me — that needing anyone, for anything, was like being a trapeze artist who, mid-leap, reaches out toward an empty swing. He taught me, through his attention — eruptions of fists and hushed apologies — that love, like pain, was something to be endured. And crying always makes it worse.
* * *
My mother lived inside the orbit of her own dependence. She needed him to carry her up every level of Maslow’s hierarchy: to pay the bills, to keep her fed and housed; to be that handsome man with the leather briefcase, to make her the envy of her friends. I saw her helplessness as an unpardonable sin, so self-reliance became my defining virtue.
As an adult, I did everything I could to live alone. I took basement apartments in bad neighborhoods and lived off dollar meals and Ramen. When I broke my wrist in a car accident seven years ago, I eschewed the pain meds, piloted my rental car and brought in the groceries one-handed; went to work and grad school as if (to quote Don Draper) it never happened. I took pride in refusing any offers of help — not because they came with strings attached, and not even because I wanted to impress anyone else; because refusing those offers meant I was self-contained, strong enough to endure a world where oblivious people plow their SUVs through stop signs, where little girls are hit harder for crying.
“Nope, just me” was my anthem, not a single woman’s lament. I found a Spartan sanctity in hauling 50-pound bags of dog food over my shoulders, and in shouldering the bills on my own. My value wasn’t innate; it was earned by being useful, and not just useful — but stoic, heroic in shucking off my needs until I honestly believed I didn’t have them. I was always the one you call whenever you need to collect your stuff from your ex, to bitch about your boss, or just cry.
Losing, quite literally, the power to stand on my own two feet felt more devastating than any beating. I needed help with the bedpan; I needed a washcloth rubbed over my back, and I needed the pain pills that swaddled me in a gauzy numbness. I wish I could say that there was one clear catharsis that cracked me open, but I didn’t have some capital-E epiphany — that redefining strength meant silencing the static of my upbringing.
The change came in a series of moments that were as small and steady as the mechanics of a single step forward: my “work wife” sends me a “Hey Girl” get well card she’s Photoshopped with my favorite picture of Ryan Gosling, brings me lunch one lonely Saturday; a friend who attends the AWP conference in Seattle sends me a care package full of literary journals, postcards and chocolate. The physical therapist who comes to the house twice a week sinks her fingers into the most tender parts of my sprain and tells me how sorry she is that it hurts so much; and one day, a necklace arrives, a tiny wooden pendant with the words “girl on fire” etched in the center.
There is nothing I can do to return the gifts, the late-night “thinking of you” texts, the hours spent walking my dog for me, and the repeated assurances that I was “tough as hell” for following my doctor’s orders, just sitting and waiting for my bones to do their silent work of knitting whole again. I never brought myself to ask for these assurances with words, but the edge in my tone when I joked that it took a catastrophic injury for me to finally catch up on my Netflix queue must’ve betrayed my need for them.
I’m tempted to say that this let me take off my armor, but the image of impenetrable metal being lifted off of me in clean, easy pieces isn’t quite right. My armor was so old, so weathered, that it had rusted over, calcified until it had become a second skin. I did not take it off, so much as scrape it away with every phone call I took, with every time I kissed my dog on her nose and sent her out with an “auntie” or “uncle,” with every time I let one of those “aunties” and “uncles” bring me groceries and cook me a meal.
Bearing the weight of that armor required a constant vigilance. Suddenly free of its heft, its heat, I had nothing to do but focus my energies on healing, and healing meant feeling, and not just anger. I grieved the woman who ended relationships before they began, because she didn’t want to “get in the habit” of trusting a man to care for her, let alone asking him for anything. I grieved the teenage girl who cleaned her friends’ mothers’ kitchens as thank you for allowing another school night sleepover. I grieved the little girl who’d learned that nobody would ever help her when she got hit. I stood (as best I could) on my sprained ankle, head bent in the kitchen sink to wash my hair, and I wept — not just from the pain itself, but from the gnashing fear that I would never get better, would never stop hurting.
* * *
The cast would come off at the end of those six weeks, and the mottled, swollen flesh of my sprained ankle would fade along the usual kaleidoscope of a bruise. Walking back into my old life would not be as simple as putting one foot in front of the other. Both ankles were weak, my doctor said, and if I didn’t take it easy and ask for help, I’d “increase the odds for reinjury.” Those five words weren’t just the hammer strikes sealing the coffin closed; they were the thuds of dirt tossed on the lid. I would need outpatient physical therapy three times a week for several months.
I wobble on balance boards and grit my teeth at the sickly snap, crackle, pop of joints massaged and manipulated for greater range-of-motion, but I’m not strong enough to keep my hold on the leash once my dog saw a rabbit, or to cart in bags of groceries (let alone laundry) while mounting the stairs to my apartment. On doctor’s orders, I ask my friend’s son-in-law to install a handicap bar in my shower: a cold reminder that I can’t stand up without leaning on something far sturdier than I am.
I tell myself that I’ve managed the ins-and-outs of the day-to-day with my father’s college ring indented on my skin, with a throbbing wrist and a hand too sore to make a fist. “This never happened” snakes into my mind, rattles its tail at my pride. Then I try to lower myself into the bath without holding onto the bar; my ankles start to buckle and sway until I grab on for support. And I know that “this never happened” will make sure it happens again.
Strength became asking, “would you mind?” Strength became “I need.” Strength meant knowing that my friends said “not at all” and “of course” not out of obligation or even pity. They said yes out of love, the kind of love my parents couldn’t give me: a hand that reaches out, mid-swing, and catches me before I fall.
A safe place to stay: the struggle to find housing for America’s mentally ill patients
Geraldine, 64, has spent the past 20 years trying to find a safe place for her son. But a chronic shortage of ‘supportive housing’ for people with mental illness has taken its toll, and, as she tells Amanda Holpuch, ‘I know what happens. He ends up in jail’
Estimates suggest somewhere between 70,000 and 96,000 homeless people have severe mental illness.
At any given time, there may be a few hundred homeless people in Seattle’s Pioneer Square neighborhood, huddling under the overpasses from the persistent Washington rain. It’s a familiar place for Geraldine, who has spent the past 20 years caring for her 38-year-old son, who is mentally ill.
When her son is not in prison or in hospital, Geraldine, 64, makes daily visits to a three-block area to bring him food, drink and warm clothing. She knows the color of his sleeping bag, and seeks it out among the dozens of others in between the shopping carts and trash bags. Sometimes he rejects her help. Other times, he gives her gifts to other people on the street.
Often, her son has lost more weight, and his hair is more unkempt. His eyes look distant and strained.
These days, however, instead of going to Pioneer Square, Geraldinemakes aweekly trip to a psychiatric hospital, where her son is being treated for schizophrenia.
It’s the longest Geraldine’s son has been stably housed since his initial diagnosis nearly 20 years ago, but she’s afraid he will end up back on the streets, in prison, or dead – because of the lack of safe, long-term housing available to people with severe mental illness.
“It’s all-consuming. I think about it all the time, even when I’m doing things I enjoy,” Geraldine told the Guardian. “Then I think about him and how he is living.”
Ever since her son disappeared from home as a teenager, he has ping-ponged through jails, homeless shelters, halfway houses and the streets, and Geraldine has spent that time working to find him a safe place.
She emails, calls and meets advocates, politicians and administrators on her son’s behalf. She is not comfortable providing her surname – her complaints within the system have caused her to be a recognized name, and she is afraid those complaints will affect her son’s chances to receive adequate care. She also asked that her son not be named.
Geraldine, who has two other children, believes stable housing is the only way her son can manage his schizophrenia and lead a safe, healthy life. Despite being her son’s primary caregiver, Geraldine doesn’t have the resources to provide him with the so-called “supportive housing” she believes he needs, and which, research shows, could keep him from returning to jail or the emergency room.
Gretchen Locke, at social policy thinktank Abt Associates, has researched homelessness for more than 20 years, and is a firm believer in the power of supportive housing.
“It really does facilitate stable housing, and also reduces the use of expensive crisis care, which is often where homeless people end up. If [people with mental health problems] are not stably housed, they’re more inclined to end up in the emergency room or jail or detox and those kind of expensive safety net services,” Locke said.
“Stable housing can provide a platform for addressing mental illness that may not have been addressed in the past.”
Researchers found that the total hospital bill for 61 chronically homeless adults – 38 of whom had a mental illness – decreased by $1.8m over one year that they spent in supportive housing. Once in housing, residents had a 78% reduction in emergency room visits and a 79% reduction in days spent at the hospital.
Supportive housing programs don’t always pay for themselves, but because mentally ill people tend to use more expensive services, the costs of putting them in supportive housing are often offset by decreases elsewhere, said Dennis Culhane, a professor of social policy at the University of Pennsylvania and the director of research for the National Center on Homelessness among Veterans at the US Department of Veterans Affairs.
“Being homeless involves a range of dehumanizing experiences, and also greatly puts people at risk of victimization and exposure to injury – as well as being marginalized,” said Culhane. “Housing, by its nature, affords people protection: socially, physically and emotionally. So it’s really about transforming people’s quality of life.”
Geraldine is an expert on these type of supportive housing programs, and is a familiar face to workers at one of the programs in Bellevue, which she hopes her son can get into when he’s discharged.
In January 2013, more than 387,800 people were homeless, according to government estimates. A 2006 study shows that 20 to 25% of the single adult homeless population has some form of severe mental illness. That suggests somewhere between 70,000 to 96,000 homeless people have severe mental illness.
The amount of supportive housing is increasing, but turnover is relatively low in those units, and the demand is high.
Left without reliable housing, Geraldine’s son has been hospitalized involuntarilyat least four times. Hospitals are often overwhelmed by the number of people seeking psychiatric care, in part because the amount of psychiatric beds available decreased by 14% from 2005 to 2010, according to the Treatment Advocacy Center.
The alternative to hospital care – prison – terrifies Geraldine. “People tell me to stay away and see what happens,” she said. “I know what happens. He ends up in jail.” Her son has been incarcerated at least 20 times.
Speaking to a congressional panel in March, Cook County sheriff Thomas Dart explained how his jail was an example of the way mental illness has been “criminalized” in the US.
“While some mentally ill individuals are charged with violent offenses, the majority are charged with crimes seemingly committed to survive, including retail theft, trespassing, prostitution and drug possession,” Dart said.
Dart said that in 2013, more than 1,200 men were in the mental health dorm of his jail for an average stay of 87 days before they even went to trial. At that rate, it cost more than $12,000 to house each person, for a total of more than $14m.
“Far too many times, they are released to the community, where the vicious and predictable cycle starts over,” Dart said.
The first time Geraldine’s son went missing, she called jails and hospitals across the western US, eventually finding him at a jail in Arizona, where he was being held on an assault charge. He had been missing for nearly a year by then. Geraldine still doesn’t know how he made it from Washington to Arizona in that time – he left home without money.
She bailed him out of the jail and put him in a hotel room, where he made calls in the middle of the night and flooded the bathroom because,convinced the shower curtain was covered in germs, he refused to use it. Geraldine could tell her son was afraid of her, but she didn’t know anything about mental illness, and assumed his behavior was drug related.
She left; he ended up in jail again. She came back; he was put in a hospital. She moved to Arizona; he was discharged to a halfway house. Then he violated probation by having marijuana in his system and was put in jail again.
“That’s the beginning, and it hasn’t changed,” Geraldine said. “Wherever he is, I fly there, and try to get him help.”
Geraldine is now an unofficial expert on how to get prison guards, hospital staff and municipal workers to give her information they swear they aren’t supposed to tell her. She routinely skirts government bureaucracy to get her son basic necessities, like an identification card he needed in order toapply for benefits.
“I’ve been fortunate – would he push that hard? Or know to? Would he have anyone in his life to do that? Would my sons do that? Even if they want to, I don’t think they would. It’s taken 20 years to learn what to push and what not to push.”
Geraldine conservatively estimates that she’s spent $100,000 on her son in the past 10 years. That money does not include his hospital stays, which are absorbed by the hospital, or jail time, which is paid for by taxpayers.
Geraldine has lost a self-created business and had cancer four times. She started to see a therapist for the first time in March and recently took up exercising again. She works seven days a week, in part because this has been her most difficult financial year ever, and in part to try to take her mind off her son.
In December, Geraldine went to Seattle’s mental health court in an attempt to keep her son institutionalized. While there, she had to take the stand and testify about her son’s mental health. She had to recount the times he attacked her, his stints in jail, the early hours he’d spent pacing outside her suburban apartment and his delusions, including the times that he has believed he is Jimmy Carter, or Jesus. And she had to talk about the premonition he had that, in 2015, he killed his mother.
“You have to say all the worst things you could possibly say or they’re not going to hold him,” Geraldine said. “It’s heartbreaking. It’s betraying. It’s the worst [thing] in the world and you lose all trust.”
While she was in the courthouse, she held the elevator door for a person pushing a wheelchair. When she turned to look at the man in the wheelchair as it came up next to her, she realized it was her son. Seeing him vulnerable and disheveled, she began to cry. That’s when, she said, he told her: “You asked for this, mom. This is what you wanted.”
Of course, that was not what she wanted. Her dream is to be able to afford a home with a guest house, so her son can be in a safe, stable situation and still have some sort of independence. Since that’s a financial impossibility, she hopes she can at least get him a safe place to stay when he is discharged from the psychiatric hospital, a prospect that terrifies Geraldine and could happen any time.
For now, the judge hearing Geraldine’s son’s case ruled that he must stay in hospital. Still, he’s at the best place he’s been since his initial diagnosis. He works at the hospital cafe and is reading books on how to become a peer counselor. While he is safely off the streets, her biggest preoccupation is where he will end up next and how long he will be able to work towards the life they both want for him, one in which he can manage his symptoms before his progress is halted or reversed.
“As a parent you think, I mean, I know I made a lot of mistakes, I worked all my life … Everybody wishes they had done certain things differently,” said Geraldine. “I just feel like, with all of this I still can’t, I still can’t change anything. I don’t believe in living in fear, I believe in being optimistic and hoping that there is an answer and believing in something.”
The use of antidepressants rose significantly in England during the financial crisis and subsequent recession, with 12.5m more pills prescribed in 2012 than in 2007, a study has found.
Researchers from the Nuffield Trust and the Health Foundation identified a long-term trend of increasing prescription of antidepressants, rising from 15m items in 1998 to 40m in 2012. But the yearly rate of increase accelerated during the banking crisis and recession to 8.5%, compared to 6.7% before it.
The report also found that rises in unemployment were associated with significant increases in the number of antidepressants dispensed and that areas with poor housing tended to see significantly higher antidepressant use.
Nick Barber, director of research at the Health Foundation, said that the report, published on Wednesday, was the “most accurate and insightful study of medication in this area in this country” and raised questions about whether people were being treated appropriately.
“The rate of increase in prescribing had been still for some years and does seem to have increased from 2008 so it would suggest that recession and some of the associated problems such as unemployment could be part of it,” he said. “If depression has increased as well as the prescribing the question is: ‘Is it being treated properly?’ There’s also an economic question at the time of recession as to whether we’re using our medicine resources as well as we could be.”
The report says a rise in unemployment and in the cost of living during the recession “could have an impact on the prevalence of mental health problems and require changes in the service delivered”, although it does not specify what those changes should be.
The increase in prescribing was despite the coalition government providing extra funding for the Improving Access to Psychological Therapies (IAPT) programme, introduced by Labour in 2008 to help people in distress access talking therapies. “The question is whether that is just because it’s a relatively young service or whether it reflects that there are delays [in accessing IAPT],” said Barber. “If you’re a prescribing GP with a distressed patient, if you know there’s a delay in this service, I am sure you will be more likely to prescribe antidepressants.”
An NHS report published in January found that while GPs made 883,968 referrals for psychological support in England in 2012-13, only 49% of them led to someone suffering from mental health problems starting treatment.
The Focus on Antidepressants prescribing report, part of the Nuffield Trust and Health Foundation’s QualityWatch programme, which is tracking the quality of health and social care in England, found that over the 14 years covered by the report, the increase in prescription of antidepressants outstripped the rise in depression.
Dr Cosmo Hallström, a fellow at the Royal College of Psychiatrists, said that while the figures were likely to raise concern in some quarters about over-prescription of antidepressants, he saw their increased use as a positive development on the whole, reflecting increased awareness of depression and how to treat it. “There needs to be a spectrum of treatments available,” he said. “Whereas antidepressants won’t be the best treatment in all cases they are of proven benefit and shouldn’t be denied to people who are waiting for something else.”
But he cautioned that they should not just be prescribed without follow-up. “You should review over a few weeks to see whether they are really working or not,” he said.
The researchers also observed wide variation in prescriptions between areas and different GP practices. For example, Blackpool residents were prescribed more than four times as many of the tablets each month per 1,000 people as Brent, in north London.
The report found that areas with more white people, more women, and more people over the age of 65 had the heaviest use of antidepressants, while GPs who prescribed more antibiotics also tended to prescribe more antidepressants, which Barber said “confirmed that some doctors are more inclined to reach for the prescription pad”.
London had a lower level of prescribing, which the authors put down to its younger and more ethnically diverse population, while the north-east, which has high rates of unemployment, had higher levels.
Adam Roberts, senior research analyst at the Nuffield Trust, who was one of the report’s authors, said: “The variation isn’t explained by rates of depression, which is what you would think. Someone with more expertise should look at defining what the appropriate rate is and how the variation is explained. We tried to explain it to a certain extent but we couldn’t fully explain it.”
The authors have created a modelling spreadsheet for GPs and clinical commissioning groups to calculate their expected level of prescribing of antidepressants, based on factors such as the profile of patients in their area and socioeconomic indicators, and compare that with their actual prescriptions.
Researchers also discovered that a 1% rise in unemployment over time typically meant one and a half more tablets were given out per person on a GP list per year. By contrast, comparing practices in different geographical areas, rather than analysing trends over time, did not show clear links to unemployment, although areas with worse housing tended to see significantly higher antidepressant use.
First of all, there are details that are still vague, and naturally it must be underlined that there is merely a suspect in this case, but it appears that a woman pushed a 73-year-old woman from her wheelchair in Florida out of frustration. Apparently the phrase uttered at the time of the incident indicates that this was the result of a process and not a particular event.
Please, please, please. Do not let yourself get into this state. Get help and, naturally, don’t compound your problems with drink.
A lifetime of anything is no excuse for elder abuse, assault, or criminality of any kind including elder financial abuse.
Patricia Tavernier’s 73-year-old mother was reportedly found by a police officer lying in a fetal position in the street after Friday’s incident outside a Tavares restaurant, according to an arrest report.
An intoxicated Florida woman out celebrating her 52nd birthday allegedly dumped her 73-year-old mother out of her wheelchair while telling her, for 52 years of s–t.”
Patricia Tavernier’s mother was found by a police officer lying in a fetal position in the street after Friday’s incident outside a Tavares restaurant, according to an arrest report obtained by the Smoking Gun. A witness told police they saw the elderly woman — who said she had been living with Tavernier following hip surgery — fall and hit the cement head first.
Tavernier then went on to fight and hit her sister with a camera, breaking the lens, according to the restaurant employee’s statement to police. When the officer arrived they reported finding the women’s elderly mother, identified as Karen Judge, injured in the street.
Tavernier was arrested and charged with aggravated battery on a person over 65, which is a felony. She was also charged with misdemeanour battery for hitting her sister with the camera. She was booked into the Lake County Jail before released Saturday on $20,500 bond.
As Jennay Ghowrwal and her brother prepared to leave their mother’s house in Bethesda, Maryland, in March 2011, they got ready for an ugly conversation.
For nearly two years, the Ghowrwals’ 65-year-old mother had been living alone with untreated schizophrenia. She refused medication. She wouldn’t see a doctor. The Ghowrwals’ Sunday visits were a critical part of the makeshift care system they’d created around their mother. And it was when they gave her a weekly allowance.
“That was the worst part,” says Jennay Ghowrwal, 28. “She always asked for more than she was going to get.”
But that spring afternoon, their mother’s demands were more extreme than usual. She demanded $2,000 because, she said, she needed a haircut. Frustrated, and weary of her mother’s emotional instability, Ghowrwal refused. “I said, ‘No, Mom. I’m sorry. We can’t give you that.’”
Her mother went quiet.
When she started to talk, her speech was quick and difficult to decipher. The CIA was after her. Her kids were out to get her.
“If I can’t have control over my life, then they can’t either,” she screamed through tears. Then she grabbed a box of matches from the kitchen table, and lit one. As the match burned in her mother’s fingers, Ghowrwal remembers being relieved, thinking:
“Finally. The moment we’ve been waiting for.”
In the last several years, national tragedies like the shootings in Newtown have put pressure on the government to improve access to mental health treatment in the US. This weekend’s violence in Santa Barbara has reignited the issue. But behind these headline-grabbing mass killings, there’s a much broader crisis.
The most publicised reform came in November 2013 when the Obama administration issued regulations directing all private American insurance plans to cover mental health care equally to other kinds of medical care. These regulations mean, among other things, that co-payments and caps for mental health-related treatment cannot be more expensive or restrictive than for any other type of medical care.
There’s just one problem: while Obama may have expanded access to mental health benefits, the reach of the services those benefits theoretically provide hasn’t kept up. The availability of mental health care in the US remains woefully inadequate to handle current demand, never mind a potential influx of new patients.
Paul Appelbaum, a Columbia University psychiatrist and expert on legal and ethical issues in medicine and psychiatry, used a simple phrase to sum up the biggest problem facing US mental health care.
“Right to care does not mean access to treatment,” he said,adding that “tens of millions of people who did not have insurance coverage may now be prompted to seek mental health treatment. And the capacity just isn’t there to treat them.”
“There really is no mental health system in the US,” Appelbaum said.
“A system requires a vision. What we have is a shapeless void.”
Appelbaum’s blunt assessment was echoed by dozens of doctors, patients and caregivers withwhom the Guardian spoke for an investigation into the US mental health care system. Inadequate access to treatment services and providers all over the country, has left families of the mentally ill picking up the burden, and the cost, of providing care.
The Ghowrwals are one such family.
Jennay Ghowrwal’s mother hadn’t always been sick.
In 1976, she came to the US from Afghanistan on a prestigious Fulbright scholarship. She first settled in Ohio, where she met her husband. In the early 80s, Ghowrwal and her brother were born.
When Ghowrwal’s mother got a job in DC working for the government, the family of four relocated to Virginia. There, they lived an uneventful life, until 1994, when their father died following a series of strokes.
Over the next few years, Ghowrwal’s mother poured herself into her work and rose through the ranks in the Defense Department, and eventually gained a high security clearance position at an intelligence agency. “Nothing seemed to throw her off,” Ghowrwal says.
Though she lived in the US for years, Afghani culture was always a vital part of her mother’s life. While in Virginia, she became a fixture in the Afghan community. “She was always taking on new challenges,” says her daughter. She started a non-profit Afghani women’s organization and even hosted her own public access television show about Afghani culture. In fact, inretrospect, one of the first signs something was wrong, Ghowrwal says, was that she stopped doing her show. But not everything was so obvious.
Passing comments about ever-present government surveillance were justifiable, Ghowrwal reasoned, because her mother worked at an intelligence agency. When her mother complained of workplace harassment, it again made sense; the Ghowrwals were Afghan immigrants living in post-9/11 America.
But her mother’s behavior at work soon became stranger, harder to ignore. She started having crying fits at her desk. She lashed out at colleagues. It didn’t take long before her co-workers reported her to their supervisor, and her employer began investigating her, eventually assigning a psychologist to review her mental state.
“Personality disorder,” the psychologist wrote on the report, and recommended treatment if she wanted to keep her high-security clearance – and her job.
At first, Ghowrwal sided with her mother. “I read the report with the sense that her employer wasn’t being honest – and less with a suspicion that any of that was true. I don’t know why I was so skeptical other than I had never had a sense that my mother was detached from reality,” she says.
Still, although Ghowrwal didn’t yet believe that her mom was ill, she encouraged her to seek treatment for the sake of getting her job back. “But when we talked about it, she laughed and said ‘I’m not doing that,’” Ghowrwal remembers.
After she refused to follow the psychologist’s instructions, Ghowrwal’s mother was fired. She’d been making a six-figure salary, and had premium health insurance. Both were now gone.
Ghowrwal, who had just returned from a semester abroad in Chile, was now faced with an unemployed, unstable mother and burdened with the task of finding out what was wrong – and how to deal with it.
She moved out of her dorm on campus, and back into her childhood bedroom. Without an income, Ghowrwal’s mother was blowing through her savings. Ghowrwal took a job and helped with mortgage payments, bought groceries and paid utility bills. She cooked, she cleaned, she tried to keep her mother calm. Her life as a carefree college student was over.
“I don’t think I realized how messed up I was. I was emotionally unstable and angry all the time,” Ghowrwal says. “I would blow off assignments and my grades really suffered. I failed a few classes. And yet I was unaware that at the center of all this confusion was something truly life-changing.”
Living at home, Ghowrwal watched as the woman who raised her became someone else entirely. She was obsessed with finding a job, but would make up excuses for why she couldn’t follow through on her applications. She demanded her children spend time at home, but her unpredictable behavior made their time together untenable.
“Everything was becoming about the delusions. She started to throw plates during arguments. She once threatened to kill my brother if he married a woman she didn’t approve of,” Ghowrwal says. As their mother became more unstable, Ghowrwal and her brother realized they needed to get her help.
“There wasn’t a single moment of horror,” Ghowrwal says, describing her mother’s deteriorating mental state. “It was kind of like a slow burn, building up to a flame of terribleness that eventually did reach a breaking point.”
First, they tried a tactical approach, asking their mother to seek treatment for their sake. “We told her seeing a therapist might help her be ‘less stressed’”, Ghowrwal says. “We didn’t even bring up medication.” But her mother refused. Time and time again. “We kept asking her, but eventually she started to get angry with us for bringing it up. There was no use,” Ghowrwal says.
Eventually, Ghowrwal and her brother looked into other options. “We started to realize that she needed to be forced into treatment.”
“Involuntary commitment was just sort of a thing we thought logically existed in society for people who needed it,” Ghowrwal says. She and her brother went to court to try and get an order for their mother’s hospitalization. But because of high commitment standards, their petitions were refused.
“The judge basically told us she would have to be wielding a knife in someone’s face at the moment that the petition was made. Or, alternatively, dying of hypothermia in her car.”
Appelbaum says the “dangerousness” standard, which means a patient must be at risk of hurting themselves or others before they can be hospitalized against their will, makes it difficult for the families of seriously mentally ill people to get them into treatment. In order to get their loved ones the help they need, they often have to stand by and watch them spin out of control.
“The most agonizing calls I get are from family members who clearly are very worried about a loved one with a serious mental illness,” he says. “I have to tell them that unless you can make a case that your loved one is likely to harm themselves, or likely to harm other people, or you’re willing to throw them out on the street, there’s no way to get them into the system. The involuntary system is very tightly constrained by these dangerousness criteria.”
Dangerousness was not always the standard for involuntary treatment. Up until the 1970s, a mentally ill person only had to be “in need of care” in order to qualify for involuntary hospitalization. But as the deinstitutionalization movement gained momentum, attitudes toward mental health care evolved. One by one, states found “need of care” to be unconstitutionally broad, and unconstitutionally vague, and narrowed their standards to dangerousness. At the time, it made sense.
“These decisions were issued in an era when a majority of people were being hospitalized in large state institutions, which were typically underfunded understaffed and provided poor care,” Appelbaum says. “The courts were responding to that as well as the more theoretical constitutional argumentation.” One consequence of this change is that today, families have to wait for their loved ones to reach, as some call it, “rock bottom” before they can receive the care they need.
For help understanding the intricacies of the mental health system (and why it was so difficult to get her mother hospitalized) Jennay Ghowrwal turned to her local chapter of NAMI’s Family2Family support group, for people with mentally ill loved ones.
“Hitting ‘rock bottom’ was a theme people would raise [in the group],” Ghowrwal says. “That’s what it takes. ‘Let them fall hard enough and then they’ll get treatment’, they’d say.” For many of these families, this meant letting their loved ones become homeless, suicidal or homicidal.
When Ghowrwal watched as her mother stood in her kitchen, burning match in hand, she knew it was her chance. She picked up the phone and dialed 911.
After she lit that match, Ghowrwal’s mother was, as Ghowrwal had hoped, admitted to a hospital. But two weeks later, she was out again.
“All the doctors agreed with us that she needed to be there,” Ghowrwal says. “I couldn’t understand how she could be let out.”
With the match incident, Ghowrwal’s mother had finally met the dangerousness standard, which was enough to get her committed. But it wasn’t enough to get her treated.
In Maryland, at the time Ghowrwal was hospitalized, a patient had to be deemed dangerous in his or her community to be admitted involuntarily. But, to be medicated involuntarily, a patient had to be deemed dangerous a second time, while in the ward itself. And, of course, a patient who might be very dangerous on the street could potentially pose no issues while hospitalized.
The problem with this, Rebecca Birnbaum, a clinical researcher at the Lieber Institute for Brain Development in Baltimore, notes, is that anti-psychotic medication is critical to treating schizophrenia.
“Without medication and therapeutic sessions, patients and families endure a lot more suffering,” Birnbaum says.
Recognizing the barrier to treatment that the law presented, officials in Maryland finally changed it this year.
Even with treatment, however, some experts say that patients need to be spending more time in the hospital than wards permit.
“In the 1980s, average length of stay was probably 20-30 days, whereas today it’s a week or less in most places,” Appelbaum says. “That’s not a lot of time to stabilize somebody in a psychotic condition or somebody with severe depression.”
For the 15 days Ghowrwal’s mother was held in the hospital, she did not exhibit acts of aggression considered dangerous enough to merit medication. Without the medication necessary to treat her delusions, she was released in essentially the same state that she was in when she was admitted.
Appelbaum says the fall in the length of stay on inpatient units is driven by two important factors: one, a drastic drop in inpatient beds over the years, and two, as demand for beds has increased, psych wards haven’t expanded.
“The public sector in this country has shrunk to just a mere ghost of its former self,” Appelbaum says. “In the mid 1950s there were over 555,000 people at any given time in psychiatric hospital beds. There are fewer than 55,000 [beds] in service today.”
Moreover, psychiatric wards lose money. Their patients are, more often than not, on Medicaid, which has a very low reimbursement rate for care providers. “The returns are just not enough to cover the cost of care,” Appelbaum says. According to him, no matter how many patients cycle through the beds, or how long the waiting line is behind them, psychiatric wards are rarely, if ever, expanded. As a result,patients are let go too early, making it even more likely that they’ll cycle through the system again.
When Ghowrwal went to pick up her mother at the hospital, she says the doctors understood her predicament. “They were like: ‘We get it. It sucks. Here’s what we can offer.’” They sent her mother away with prescriptions for antipsychotics and referrals for community mental health centers.
“We asked our mom, ‘Are you planning to do any follow up treatment?’ and she laughed it off,” Ghowrwal says. Left without any other option, Ghowrwal drove her mother home, which is where she remains today. “As far as I know she threw the prescriptions in the trash,” Ghowrwal says. It’s been three years since she was released, and she hasn’t seen a psychologist or a psychiatrist since.
Faced with few options, and unwilling to watch their mother bottom out again, the Ghowrwal children have taken matters into their own hands.
Jennay Ghowrwal and her brother have, at great personal expense, created a world in which their mother can live on her own and be safe. They check in on her regularly. They pay all her bills. They’ve learned to handle her delusions. It has not been easy.
Her persistent distrust of the government means she refuses to accept any assistance from it. Attempts to relieve some of the financial burden have included tricking their mother into signing up for food stamps. “We got her to sign a random piece of paper, just so we could get her signature,” says Ghowrwal.
Ghowrwalestimates that in the last six years, she and her brother have spent upwards of $140,000 on her care. “Each month, my brother and I spend about $2,000 on her.” she says, adding that her mother has been relying on those funds for about six years. “She’s our mother. I don’t want to imagine what would happen if she was living on the streets.” Throughout her years caring for her mother, Ghorwhal has become passionate about improving mental health care. Just this year, she took a job working for the Treatment Advocacy Center.
If the Ghowrwals lived in one of the 45 states that offer outpatient commitment (also called Assisted Outpatient Treatment), things might be different. Outpatient commitment is a policy in which certain patients are ordered by a court to continue treatment, like visiting a psychiatrist or taking medication, while living outside the hospital. Connecticut, Massachusetts, New Mexico, Tennessee and Maryland are the outliers.
Paul Appelbaum says studies of outpatient commitment programs shows that they do a lot of good for the people who need them. “The data suggests that with that sort of structure, with a court order in place and the services made available, people are much less likely to be re-hospitalized, they are much less likely to end up in jail and less likely to be homeless. All of the major outcome measures that you’d wanna look at for this group are moved significantly in the right direction by outpatient commitment.”
This year, the Maryland House defeated a bill proposing outpatient commitment. But according to Jeffrey Janofsky, director of the Psychiatry and Law program at Johns Hopkins University in Baltimore, making it law wouldn’t be enough to guarantee the program’s success anyway.
“There’s no point in passing legislation if you’re not going to provide the funds to back it up,” he said. “New York has a particular kind of outpatient civil commitment law, but that law comes with millions of dollars of funding for necessary services. The real question in Maryland is, are we as a society going to spend the money to treat patients with significant mental disorder? And we’ve decided, ‘No, we are not.’”
When I was a kid, Cracked was the upstart that tried dethroning the venerable Mad Magazine. Their art was never up to scratch as Mad had some of the greatest cartoonists around such as Mort Drucker. However, Cracked has persisted into the internet age and recently published an article about how growing up in a dysfunctional home can change your outlook on things.
It may be the cynic in me but politicians have two keys to action:
It wins votes
It affects me
I don’t care which is the prime mover here, but a recent article in the American newspaper the Hartford Courant discusses how politicians the US have tried putting mental health on the political agenda.
As Mental Health Issues Rise, Politicians Open Up About Family Experiences
Speaking to a crowd of about 100 people at a West Hartford synagogue last month, Gov. Dannel P. Malloy plowed through his usual set of talking points on jobs, the economy and the state budget.
Then, near the end of a question-and-answer session, someone in the audience asked about mental health policy and Malloy’s brisk, business-like public persona abruptly dissolved.
“By the way,” he said, pausing for a long beat, “One of my own sons suffers from mental health challenges. … I have some expertise in this area personally.”
Malloy has never been big on Oprah-style expressions of emotion. His image is that of a data-driven pragmatist who favors numbers over the politics of personal pain. After broaching the topic of his son’s struggles, he quickly retreated back to the more comfortable terrain of government policy.
Yet the Democratic governor’s decision to mention, ever so fleetingly, his son’s condition signifies a new level of openness on a topic that once was considered none of the public’s business.
In recent months, several politicians have spoken candidly about their family’s private anguish. Creigh Deeds, a state senator from Virginia who was stabbed by his mentally ill son, appeared on “60 Minutes” to press for new mental health legislation.
New York City Mayor Bill de Blasio offered a public statement of support after his daughter, Chiara de Blasio, detailed her struggles with depression and substance abuse in a highly-polished YouTube video.
And Tom Foley, one of the Republicans hoping to replace Malloy in the governor’s office, often alludes to a chronic mental health condition afflicting a member of his family.
Advocates for the mentally ill say a willingness to acknowledge such deeply personal matters marks an important milestone in the long quest to eliminate the stigma associated with mental illness.
“The thing about mental illness is, it’s incredibly democratic,” said Kate Mattias, executive director of the Connecticut chapter of the National Alliance on Mental Illness. “And the wider the array of people who come out and say they, or someone in their family, is dealing with a mental health challenge, the more it moves the dial in normalizing it.”
In 2009, when Malloy was still mayor of Stamford, his then-21-year-old son Ben was arrested in connection with an attempted robbery. At the time, Malloy and his wife, Cathy, released a statement saying their son suffered from an “emotional illness.”
In an interview with the New York Times shortly after their son’s arrest, the Malloys recounted their middle son’s struggle with what they said was a form of depression. They noted other high-profile political families who have grappled with similar issues, including the Kennedys and the Gores.
It was Cathy Malloy who insisted on a public statement. “I think it’s really important for us to say that this is what we’re going through,” she told the Times. “We understand that a lot of other people go through this.
Although one of Malloy’s Democratic primary opponents urged him to drop out of the gubernatorial race immediately after the incident, the crisis was scarcely mentioned in the run-up to the 2010 general election.
But that was before the Newtown school shootings brought a new focus on the need to improve services for people with mental illness. In the aftermath of that tragedy, President Obama promised “a national conversation” on mental health.
Parents of children who have experienced a mental health crisis applaud Malloy for simply acknowledging his son’s affliction.
“I know how hard it is and I commend him for being able to speak publicly about it,” said Mary Jo Andrews of West Hartford. “In some ways, we’ve all bottled it up.”
When Andrews’ daughter, now 18, was admitted to a residential psychiatric program at age 12, Andrews and her husband initially weren’t even sure they would tell their own siblings.
Andrews has since grown more comfortable talking about her daughter’s condition. With her daughter’s blessing, she joined a group of Connecticut mothers who appeared recently on “60 Minutes” to discuss the shortcomings of mental health care for children and young adults in the U.S. Creigh Deeds was featured on the same episode.
“It’s very healthy to share these stories,” Andrews said. “When our political leaders put a face on mental illness, they can be real leaders.”
Mental health remains a difficult topic.
Addressing a group of gun owners in January, Foley said Malloy and the legislature should have done more to help those struggling with mental illness instead of passing a host of new gun control laws.
“I know from personal experience how little support there is here and elsewhere for families with mental health challenges,” Foley said at the time. “I would have focused on that.”
That’s as far as his public comments went. For Foley, who has packaged himself as a can-do businessman, displays of emotion have no place on the campaign trail. The issue never came up in his unsuccessful 2010 run for governor; he only mentions it now in the context of the post-Sandy Hook discussion on gun control.
“I don’t really talk about it a lot,” Foley said in a recent interview. “I consider it a private matter. I don’t want it to become a campaign issue.”
When policy issues surrounding mental health care are raised, he cites his family’s experience in passing. “I’ll only mention I understand because I have this personal experience,” he said.
Foley’s sister, three years his senior,was diagnosed with manic depression, now known as bipolar disorder, Foley said. The family placed her in the Menninger Clinic in Topeka, Kan., one of the nation’s premier in-patient psychiatric treatment centers.
Their mother died in 1976. “My father did what he could but he was in his 80s and then he was gone too,” Foley said.
So primary responsibility for his sister fell to Foley. “I don’t want to imply that she didn’t have good days. Twenty years ago, more than half her days were good,” Foley said. “She’s a lovely person. She and I are very close.”
Foley said he brings up his sister’s experience not to “brag” about his role as her caregiver and supporter but because it has provided him with insight into the problems faced by people with mental illness and their families.
“I almost universally find people are at a loss when they need residential care for a young or middle-aged person,” Foley said.
Foley said he knows that residential treatment is not the right choice for every patient and he is not advocating for a return of state-run institutions. But, he said, the complex patchwork of services that has replaced institutional care has many holes.
“A lot of the supports have gone away,” Foley said. “States had institutions. Those institutions were abandoned in the 1970s for a lot of good reasons, but nothing grew up to replace them.”
Foley said his family’s experience points to a need for more resources and more education. “A lot of families just don’t know what they’re dealing with,” he said. To help them, Foley proposed a public awareness campaign on the signs and symptoms of mental illness.
Malloy’s 2014 legislative agenda includes funding for expanded mental health services for young adults and mandatory mental health crisis intervention training for all Connecticut police officers.
Malloy also is proposing $2.2 million in new funding for 110 supportive housing units for people with mental illness. “That is one of the biggest things that can help people with mental illness stay in the community instead of being hospitalized,” said Kate Mattias of National Alliance on Mental Illness.
And the governor’s budget calls for spending $250,000 on an anti-stigma campaign with billboards and public service announcements to promote an “accepting environment” that encourages people with mental illnesses not to be ashamed to seek treatment.
That’s a point Malloy emphasized in his comments to the members of the synagogue a few weeks back.
“We talk about mental health in all of the wrong terminology,” he said. “So much so that we scare people from actually seeking help. That’s a problem.
“A big part of what we all have to do is … admit who we are and what we are, and who our family is and what our family is, and who our friends are and what our friends have gone through,” Malloy said. “Once we do that, I think it’s one of those paradigm shifts again.”
This piece is about elder care primarily, but the bottom end of the piece has ten points of advice that are worth considering. The very first is to tell your employer what’s happening. I’d qualify this because you really should always treat HR like the enemy but generally that’s good advice. Let them have some idea of what the floor and ceiling are so that colleagues can forecast how much to put on your plate and at what rate.
The neurologist Oliver Sacks had a book I stopped buying because so many people borrowed it and never gave it back. The book is called the Man who Mistook his Wife for a Hat. These are case studies of people with organic brain disorders and how their malfunctioning brains threw light onto the mysterious processes inside this wonderful organ. There’s a chapter about a painter whose work became increasingly abstract. Sacks observed that this transformation was not the result of any artistic insight but the result of a disorder the artist was suffering. My mother’s hobby business was puppetry and I remember how she started off making complex and balanced marionettes with rather fine control systems. He art ‘evolved’ into increasingly primitive, ill-made stick figures.
This, too, was a form of documentation.
My favourite image from the book is visible in the gallery. You can find it at the end. It appears to be a photograph on a pin board, probably from the 1970s from the fabrics, frizzy hair and the film stock. For good or ill, I have cemented in the architecture of my mind an image of Margot Kidder, Carrie Fisher and Margaret (Mad Maggie) Trudeau as a ‘look’ from this period. Why? I guess their breakdowns in the 80s were the fodder for weekend news magazine features when I was an adolescent. Their ‘at home in happier days’ snapshots contrasted with the sensational headlines.
A Guardian article observes that one in three adults may become a carer in the next 10 years, with over 20% caring for more than 50 hours a week, and most doing so without outside assistance. Obviously, the level of care depends greatly upon the condition of the person being cared for, but the impact on the NHS, social services generally as well as the economy may be profound.
‘At the first workshop in Hertfordshire, where my GP colleague knew several of the participating doctors, our presentation was welcomed. A fortnight later in Lancashire, the reception was quite different, and doctors were adamant that the last thing they needed was the additional burden of carers. Surely, they argued, carers were the responsibility of council social care services, not the health service.’ Turf battles aside, there will be family caregivers for physical and mental illness, it is merely a question of how they are supported or not.
Caring for a family member with a serious mental illness (mainly schizophrenia and bipolar disorder) is often extremely stressful for families; it impacts them financially, emotionally, socially and physically, reports an article published recently in the Huffington Post.
Numerous studies have established the at-risk status of children whose parents have a mental illness, few have examined those children in adulthood. The studies that have been conducted are primarily epidemiological, indicating a significantly higher risk of being diagnosed with a mental illness than the general population. (Thanks, Mum.)
The data limitations are addressed in the paper.
Children of parents with mental illness are at risk of psychiatric and behavioral problems. Few studies have investigated the psychosocial outcomes of these children in adulthood or the parental psychiatric history variables that predict resilience.
From a sample of 379 mothers with serious mental illnesses, 157 women who had at least one adult child between the ages of 18 and 30 were interviewed. Mothers reported that about 80 percent of these adult children were working, in school, or in training. However, about one-third had not completed high school, and 54 percent were judged to have a major problem in psychological, drug or alcohol, or legal domains. Although nearly 40 percent were parents of minor children, only about 12 percent were in a committed relationship. Mothers’ bipolar diagnosis was a significant predictor for number of adult child problems.
The results indicate a need for more attention to the parenting status of adults with mental illnesses and to their parenting concerns and needs.
Carol T. Mowbray, Deborah Bybee, Daphna Oyserman, Peter MacFarlane, and Nicholas Bowersox
An article in The Guardian observes that ‘It was precisely when patents ran out on the big-selling tricyclic antidepressants in the mid-90s that bipolar suddenly became the recipient of Big Pharma marketing budgets.’
In the early 20th century the prevalence of manic depression was put at less than 1% of the population, but this figure exploded with the ramification of the bipolar categories. If bipolar 1 was often equated with classical manic depression, bipolar 2 lowered the threshold dramatically. Bipolar 2 and a half, 3, 3 and a half, 4, 5 and 6 soon followed. Today there is even “soft bipolar”, which means a patient “responds strongly to losses”. The World Health Organisation deems bipolar the sixth main cause of disability for people aged 15-44. In children, the diagnosis has increased by over 400%.
Historians of psychiatry have all made the same observation: it was precisely when patents ran out on the big-selling tricyclic antidepressants in the mid-90s that bipolar suddenly became the recipient of Big Pharma marketing budgets. Websites helped people to diagnose themselves; articles and supplements appeared all referring to bipolar as if it were a fact; and nearly all of these were funded by the industry.
Of course, the rabbit in the hat here was that the anticonvulsant sodium valproate received a patent for use on mania at exactly this time. Just as depression had been marketed as a disorder by those who purveyed a chemical cure for it, so bipolar was packaged and sold along with its remedy.
Empathy scores of students in preclinical years were higher than in clinical years. Gender was a significant predictor of empathy, with women having higher empathy scores than men. Students preferring technology-oriented specialties had lower empathy scores. When career preference was controlled, higher levels of debt were significantly associated with greater empathy. Students with high baseline empathy decreased less than students with low baseline empathy during medical school. Students in traditional four-year medical school programs had higher baseline empathy than those in early pathway programs.
We examined the trend of empathy longitudinally; determined differences in empathy according to gender and medical specialty preferences; and determined empathy and career preference differences among students admitted through different medical school admission pathways.
The data for this study were collected using a longitudinal cohort design and included 2652 observations nested within 1162 individuals. Participants were medical students at a university-based medical school surveyed yearly from 2007 through 2010. Empathy was measured by the Jefferson Scale of Physician Empathy-Student Version (JSPE-S), a validated, 20-item self-administered questionnaire. Predictors of JSPE-S scores included gender, age, anticipated financial debt upon graduation and future career interest.
Self-reported empathy for patients, a possibly critical factor in high-quality patient-centered care, wanes as students advance in clinical training, particularly among those entering technology-oriented specialties. In the era of new health care policy and primary care shortages, our research may have implications for the medical education system and admission policy.
Authors Daniel C. R. Chen, Daniel S. Kirshenbaum1, Jun Yan, Elaine Kirshenbaum, Robert H. Aseltine, Ab2012, Vol. 34, No. 4 , Pages 305-311 (doi:10.3109/0142159X.2012.644600)
‘To enliven her was my living’: thoughts on compliance and sacrifice as consequences of malignant identification with a narcissistic parent’
This paper explores the dynamics involved for children growing up with a narcissistic parent. It suggests that as a consequence of a malignant identification children resort to compliance and sacrifice in varying degrees. Compliance, as part of the sacrificial dynamic, also serves as a means for identification, which in the absence of other emotional nurturance the infant and later the child is reluctant to relinquish. Drawing on the personal and professional experiences of both D.W. Winnicott and H.J.S. Guntrip the paper discusses the underlying conflict between absorption into and abandonment from the narcissistic parent. The psychotherapeutic relationship offers a space to acknowledge the systematic interconnectedness that is at the heart of the malignant identification and the terrible dependency involved. Through a good personal relationship a benign identification with the therapist can begin to replace what was previously so strongly held onto. Brief extracts from two incomplete psychotherapies with young men are used to illustrate certain aspects of the therapeutic work involved.
Fiona Gardner, British Journal of Psychotherapy, Volume 21, Issue 1, Article first published online: 17 NOV 2006,
According to a primer published last year by the American Nurses Association, compassion fatigue is “a combination of physical, emotional, and spiritual depletion associated with caring for patients in significant emotional pain and physical distress.” The nurses’ group says several different types of interventions, including workshops, staff retreats and counseling have been shown to help. And such programs may only become more important as demands increase on a shrinking supply of nurses, who shoulder the heaviest burden of patient care.
Lucia Wocial, a nurse ethicist at Indiana University Health in Indianapolis, tells the Health Blog that for nurses, compassion fatigue is often compounded by moral distress — the feeling of being unable to help a suffering patient or do what they feel is the right thing, such as withdrawing life support from a patient who won’t recover when a doctor or family asks for additional interventions. Wocial says Indiana University Health offers resources for staffers, such as a one- or two-day retreat to help them reconnect with the fundamental reasons they went into health care. “We tell them how important it is to rejuvenate, because you can’t take care of people unless you are taking care of yourself.”
The point being for us family members that have no professional support, or formal training, that even the people who undertake broadly based caring as a profession get burned out.
While researchers agree more study is needed into the connection between compassion fatigue and patient outcomes, a 2009 analysis conducted by the Regenstrief Institute and Indiana University School of Medicine found that compassion fatigue was linked to decreased productivity, more sick days and higher turnover among cancer care providers. In numerous studies of the blatantly obvious, nurse turnover and understaffing has been linked to worse patient outcomes and higher mortality rates.
Thomas Lowe, health and safety representative for the New York State Nurses Association, began conducting workshops on compassion fatigue last year that use relaxation and stress-reduction techniques from programs including the Compassion Fatigue Awareness Project. Lowe says such programs could be incorporated into nursing-school curricula “to forewarn [nurses] this is something to expect.”
Compassion fatigue, he adds, can be compounded by an already stressful work environment, where nurses may be pulling extra shifts because of understaffing, and may face verbal abuse or bullying from colleagues.
At Barnes-Jewish Hospital in St. Louis, which is offering a day-long compassion-fatigue program for staffers, Lawrence Marsco, a 25-year nursing veteran who manages the leukemia and lymphoma floor, says the effort has sent a message to nurses that the hospital’s leadership is aware of the issues they face and is willing to help: “In nursing, if you are giving your heart and soul to caring for patients, it is very difficult not to be affected by compassion fatigue,” he says. “This is a way to bring awareness of the issue so you don’t turn into a nurse who is perceived as cold and uncaring, when in fact you are probably the most caring and compassionate nurse of all.”
Currently, in individuals over 65 year of age, prevalence rates of bipolar disorder range from 0.1% to 0.4%. As is the case for bipolar disorder in younger individuals, bipolar disorder may be unrecognized or underrecognized among older adults. While anxiety disorders are frequently comorbid among younger individuals with bipolar illness, the prevalence and impact of comorbid anxiety is far less understood among geriatric individuals with bipolar disorder, in whom anxiety disorders may be underreported. This comorbidity may have serious consequences, since in older adult populations with depression, the presence of comorbid anxiety is associated with more severe depressive symptoms, more chronic medical illness, greater functional impairment, and lower quality of life; the same associations may prove to be true in older patients with bipolar disorder. As with younger individuals with bipolar disorder, effective treatment of the underlying mood disorder is critically important before treating comorbid symptoms. Unfortunately, few evidence-based studies are available to guide the treating clinician in the management of these vulnerable patients, many of whom have additional psychiatric or medical comorbidity.
Sajatovic M, Kales HC, of the Department of Psychiatry, Case Western Reserve University School of Medicine, Cleveland, Ohio, USA. Journal of Clinical Psychiatry, 2006.
Caregivers of people with bipolar disorder may experience a different quality of burden than is seen with other illnesses. A better understanding of their concerns is necessary to improve the training of professionals working with this population. Conceptualizing caregiver burden in a conventional medical framework may not focus enough on issues important to caregivers, or on cultural and social issues. Perceptions of caregivers about bipolar disorder have important effects on levels of burden experienced. It is important to distinguish between caregiversÕ experience of this subjective burden and objective burden as externally appraised. CaregiversÕ previous experiences of health services may influence their beliefs about the illness.
Caregiver burden is associated with depression, which affects patient recovery by adding stress to the living environment. The objective burden on caregivers of patients with bipolar disorder is significantly higher than for those with unipolar depression. Caregivers of bipolar patients have high levels of expressed emotion, including critical, hostile, or over-involved attitudes. Several measures have been developed to assess the care burden of patients with depressive disorders, but may be inappropriate for patients with bipolar disorder because of its cyclical nature and the stresses arising from manic and hypomanic episodes. Inter-episode symptoms pose another potential of burden in patients with bipolar disorder. Subsyndromal depressive symptoms are common in this phase of the illness, resulting in severe and widespread impairment of function. Despite the importance of assessing caregiver burden in bipolar disorder, relevant literature is scarce. The specific effects of mania and inter- episode symptoms have not been adequately addressed, and there is a lack of existing measures to assess burden adequately, causing uncertainty regarding how best to structure family interventions to optimally alleviate burden.
The relatively few studies into caregiver burden in bipolar disorder may largely reflect experiences in the US Veterans Affairs health service, but the findings may be limited in their generalizability. Nevertheless, available data suggest that caregiver burden is high and largely neglected in bipolar disorder. Clinically effective, well-targeted and practically viable interventions are needed. However, services cannot be enhanced on a rational basis without an improved understanding and capacity to measure and target caregiver burden the impact of any change in services be evaluated.
Ogilvie AD, Morant N, Goodwin GM. Bipolar Disord 2005: 7 (Suppl. 1): 25–32. a Blackwell Munksgaard, 2005
A national survey of 1000 Australians has revealed the vast majority of relatives of people with a mental illness are suffering physically and mentally. The report by the Wesley Mission has found many carers, especially young carers, are reluctant to ask for help because of the stigma associated with both caregiving and mental illness. The report is called Keeping Minds Well: Caring Until It Hurts.
You can also hear a quick interview from the Australian Broadcasting Corporation’s AM with Tony Eastley about this survey. According to their web site, the Wesley Mission provides ministry to ‘the vulnerable and marginalised. It includes the lonely, hurt and fragile, the homeless, mentally ill, aged, disabled, unemployed.’
How do you co-ordinate mental health services in a country wider than the Atlantic Ocean when it’s not your responsibiliy?
A forthcoming report in Canada addresses how to intervene early with emotional disorders in other to reduce the severity of the impact on the victims. This new report from the Mental Health Commission of Canada hopes to persuade the dominion’s federal government to take a lead role on mental health care even though health administration in this country is a provincial (which is to say regional) matter. Listen to this interview on on CBC Radio One’s The Current.
In other words, the mentally ill relations don’t have any special rights that supersede yours to sanity. You’re the caregiver and if get used up and squeezed to a pulp, that’s it, so make your own well-being a priority.
Other conclusions are that “These findings can be interpreted as an indication that it is better to organize support groups for different categories of relatives depending on the disorder, which is not always done in practice.” I’d agree whole-heartedly. People at the start of their caregiving journeys don’t need to be around cynical, exhausted villains such as yours truly. And, the nature of the relationship is also an issue, the authors find. For example, a marital partner with severe mental illness is in different with the caregiver than if she or he were a parent or child.
Pim Cuijpers, Ph.D.; Heleen Stam, M.A. Psychiatric Services 2000; doi: 10.1176/appi.ps.51.3.375, From Psychiatric Services.
Here’s the lede: Recently, a colleague at my radio station asked me, in the most cursory way, as we were waiting for the coffee to finish brewing, how I was. To my surprise, in a motion as automatic as the reflex of a muscle being poked, my body bent double and I heard myself screaming: “I WAAAAAAAANT MY FATHERRRRRR TO DIEEEEE!!!”
It addresses many American-specific issues related to the US’s cockamamie medical system but then goes to cover the emotional issues of elder care for people with whom you have elder care relationships and how it may have an impact upon your relationships with your peers: Elderschadenfreude is the secret pleasure of hearing about aging parents that are even more impossible than yours.
Rather than summarize the best bits, I encourage you to read it yourself and then go through what will doubtless be an extensive list of comments. I am sure that there will be plenty of readers who will react very negatively to the article. Give’em a few years…
When mental illness tarnishes your golden years looks at services for geriatric psychiatry. “I’d like to work with family physicians to overcome what I call therapeutic nihilism,” Says Dr. Michael Cooper. Many need to be persuaded that “we can do something for seniors with mental-health issues.” Um, yeah.
Most nurses enter the field of nursing with the intent to help others and provide empathetic care for patients with critical physical, mental, emotional, and spiritual needs. Empathic and caring nurses, however, can become victims of the continuing stress of meeting the often overwhelming needs of patients and their families, resulting in compassion fatigue. Compassion fatigue affects not only the nurse in terms of job satisfaction and emotional and physical health, but also the workplace environment by decreasing productivity and increasing turnover.
We begin this article with a case study of a reactive nurse who did not seek help for her continuing stress. This is followed by a review of Watson’s theoretical perspective related to compassion fatigue. Next we delineate symptoms of, and describe interventions for addressing compassion fatigue. We conclude by presenting a case study of a proactive nurse who avoided developing compassion fatigue and a discussion of future research needed to better prevent and ameliorate compassion fatigue.
Authors Barbara Lombardo, RN, MSN, PMHCNS-BC, Caryl Eyre, RN, MSN Lombardo, B., Eyre, C., (Jan 31, 2011) “Compassion Fatigue: A Nurse’s Primer” OJIN: The Online Journal of Issues in Nursing Vol. 16, No. 1, Manuscript 3.
This article, from Bipolar Disorders, reviews issues faced by caregivers of the mentally ill.
Caregivers of people with bipolar disorder may experience a different quality of burden than is seen with other illnesses. A better understanding of their concerns is necessary to improve the training of professionals working with this population. Conceptualizing caregiver burden in a conventional medical framework may not focus enough on issues important to caregivers, or on cultural and social issues. Perceptions of caregivers about bipolar disorder have important effects on levels of burden experienced. It is important to distinguish between caregivers — experience of this subjective burden and objective burden as externally appraised. Caregivers, previous experiences of health services may influence their beliefs about the illness. Caregiver burden is associated with depression, which affects patient recovery by adding stress to the living environment.
The objective burden on caregivers of patients with bipolar disorder is significantly higher than for those with unipolar depression. Caregivers of bipolar patients have high levels of expressed emotion, including critical, hostile, or over-involved attitudes. Several measures have been developed to assess the care burden of patients with depressive disorders, but may be inappropriate for patients with bipolar disorder because of its cyclical nature and the stresses arising from manic and hypomanic episodes. Inter-episode symptoms pose another potential of burden in patients with bipolar disorder. Subsyndromal depressive symptoms are common in this phase of the illness, resulting in severe and widespread impairment of function. Despite the importance of assessing caregiver burden in bipolar disorder, relevant literature is scarce. The specific effects of mania and inter-episode symptoms have not been adequately addressed, and there is a lack of existing measures to assess burden adequately, causing uncertainty regarding how best to structure family interventions to optimally alleviate burden.
The relatively few studies into caregiver burden in bipolar disorder may largely reflect experiences in the US Veterans Affairs health service, but the findings may be limited in their generalizability. Nevertheless, available data suggest that caregiver burden is high and largely neglected in bipolar disorder. Clinically effective, well-targeted and practically viable interventions are needed. However, services cannot be enhanced on a rational basis without an improved understanding and capacity to measure and target caregiver burden the impact of any change in services be evaluated.
Ogilvie AD, Morant N, Goodwin GM University Department of Psychiatry, Warneford Hospital, Oxford, Department of Psychology, Anglia Polytechnic University, Cambridge, UK