‘Happy’ mother’s day

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.

While Jezebel is generally to be avoided, kudos to them for their recent discussion thread about Mother’s Day and toxic parental relationships. If you’re in that situation, you may find the discussion thread sympathetic.

Courage.

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Article: Factors Affecting Disruption in Families of Adults With Mental Illness

Perspectives in Psychiatric Care 

Volume 50, Issue 4, 1 October 2014, Pages 235-242

Factors Affecting Disruption in Families of Adults With Mental Illness

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

Abstract

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.

Citation

ISSN: 00315990 CODEN: PEPYA Source Type: Journal Original language: English
DOI: 10.1111/ppc.12047Document Type: Article
Publisher: Blackwell Publishing Inc.
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Article

‘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.’

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On the radio: Where there’s a will, there’s a relative

The Canadian public broadcaster has a Sunday morning omnibus program that this morning did a piece about financial abuse of the elderly through the manipulation of wills. In my case, my bi-polar mother has been trying to bribe her daughter into liking her for decades. Fortunately, my sister is estranged to us but one of my fears is that she’ll come out of the woodwork.

There’s some family experience with this. Another cousin got ahold of his grandmother’s chequebook and helped himself to seveal thousand dollars.

Moreover, my sister has a history of selfishness, I regret to say. She lived rent free for a decade at a relative’s house and I am sure has ‘reframed’ this as a gift in her mind. Anway, although the specifics of legal issues may differ in your jurisdiction but the psychological and social implications of people fighting over an elderly person’s money are probably the same.

In particular, the panelists discuss the well intentioned but potentially disastrous things that families do like apportioning money ahead of the death or incapacity, and conflicts between what the bank wants and what the lawyers want, et cetera.

There is far more at stake now than ever before. According to a study published this year, about one trillion dollars will change hands in this country over the next two decades. This has been identified as the biggest inter-generational transfer of wealth in the west’s history.Sunday-Edition
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Two articles from Psychology Today

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.’

Read more about this here.

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.”

Read more about this here.

 

 

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Article: Why Canada’s reliance on unpaid care is not sustainable

This article appeared recently in Canada’s Globe and Mail newspaper.

Why Canada’s reliance on unpaid care is not sustainable

 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.

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.

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On the Radio: How a little town in Belgium may show us how to care for the mentally ill

A documentary aired on CBC Radio 1 that may be of interest to some of you.

Once, there was a tall, elegant woman in her 70’s, who lived with a family in the small Flemish town of Geel in Belgium. Her name was Louise, she spoke four languages and liked to discuss the lives of princes. At night she would stand by her window and pick up messages from the sky. She had spent decades in a mental institution. Then her doctors sent her to live with the family. She stayed for 30 years. The grandchildren loved her. The foster mother grieved when Louise died. Then she took in another “guest”.

That’s what families do in Geel. Look after people who suffer from schizophrenia, from obsessive compulsive disorder; psychiatric patients with serious mental illnesses. And they’ve been doing it for hundreds of years.

There is nowhere on earth quite like Geel.

It all started, legend has it, in the 7th century with a fair haired Irish princess named Dimpna who fled from the advances of her father, across the ocean to Belgium. He followed her, found her and murdered her in the town of Geel. Dimpna was canonized and became St. Dimpna, patron saint of the mentally ill. Geel became a religious shrine, a site of pilgrimage. Today it’s an internationally recognized medical shrine, the gold standard of community care for psychiatric patients.

Karin Wells‘ documentary is titled, “You Belong in Geel“.

Listen here.

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Yeah, well….

A bit of wisdom from the web comic Cyanide and Happiness.

crack

Endless Endurance

Broken Ankle

(Credit: DNY59 via iStock)

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.

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Guardian: Housing the mentally ill in the US

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’

 Thomas Dart: America’s jails are the new mental health asylums

 Are you a caregiver for someone with mental illness?

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, Geraldine makes 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.

Once in supportive housing, mentally ill people rely less on other expensive services, according to a University of North Carolina Charlotte study from February this year.

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 its 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 estimatesA 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 involuntarily at 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.

Incarceration is a fairly common fate for people with severe mental illness. Jails house 10 times as many mentally ill people as state hospitals,according to an April 2014 Treatment Advocacy Center report. The three largest state-operated mental health facilities in the US are Cook County jail in Illinois, LA County jail, and New York’s Rikers Island jail, where a homeless veteran on anti-psychotic medication was “baked to death” in March.

 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 personfor 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.

Geraldine, mental health
 Geraldine has been looking after her son for 20 years. Photograph: Amanda Holpuch for the Guardian

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 to apply 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.”

 

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Guardian: Anti-depressant Rxs surge in England

Researchers reveal surge in antidepressant prescriptions between 2008 and 2012

Antidepressant tablets
Antidepressant tablets. Photograph: Garo/Phanie/Rex

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.

 

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Daughter allegedly pushes wheelchair mum to floor for ’52-years of sh*t’

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.


 

Boozy Florida woman allegedly tossed elderly mom out of wheelchair saying ‘for 52 years of s–t!’ 

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.

© NEW YORK DAILY NEWS
Tuesday, May 27, 2014, 6:26 PM
Patricia Tavernier was out celebrating her 52nd birthday Friday when she allegedly dumped her 73-year-old mother out of her wheelchair, allowing her to hit her head on the cement.
LAKE COUNTY JAIL — Patricia Tavernier was out celebrating her 52nd birthday Friday when she allegedly dumped her 73-year-old mother out of her wheelchair, allowing her to hit her head on the cement.

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.

A witness at this Tavares restaurant told police she saw Tavernier carry out the cut-throat act before getting into a fight with her sister.GOOGLE – A witness at this Tavares restaurant told police she saw Tavernier carry out the cut-throat act before getting into a fight with her sister.

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.

ngolgowski@nydailynews.com

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Let families sort it: Mental health care in the US

The first instalment in a series on the state of mental health care in the US finds a system grossly insufficient to handle demand, leaving many patients, and their caregivers, to fend for themselves.

America’s mental health care crisis: families left to fill the void of a broken system

The first instalment in a series on the state of mental health care in the US finds a system grossly insufficient to handle demand, leaving many patients, and their caregivers, to fend for themselves

 Share your story: are you a caregiver for someone with mental illness?

Woman striking a match in a dark room
‘There wasn’t a single moment of horror,’ Jennay Ghowrwal said of her mother’s health. ‘It was kind of like a slow burn.’ Photograph: Chloe Cushman/Guardian

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 tearsThen 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 with whom 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
 Jennay Ghowrwal at home in Baltimore, Maryland. Photograph: Ruth Spencer for the Guardian

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, in retrospect, 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.

Ghowrwal estimates 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.’”

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Full-length documentary on-line about bi-polar caregivers

Family Matters: Surviving the Bi-Polar Journey is a 2010 documentary film from Canada about four families, each with a bi-polar person. You can watch it on-line for free at the British Columbia Knowledge Network.

The film is by Marie Frymire. Family Matters follows four families as they struggle to support a loved one with Bipolar Disorder,one of the most commonly diagnosed mental illnesses:

Ted’s daughter Kristy,21,has just been told she has Bipolar Disorder. Both have difficulties accepting the diagnosis and the need to seek help. Theresa’s 27-year-old daughter Valerie was diagnosed several years ago. Now Theresa fears that Valerie might be repeating her own mother’s tragic struggle with depression. Melanie and Keith have been married 24 years and have two young sons. While Keith struggles with the most severe type of the disease,Melanie has been keeping the household together,sometimes by sheer force of will. Melanie finally begins to realize that the one person she’s forgotten to take care of is herself. Denise and Michael,married for 44 years and happily retired,are only now beginning to learn how Michael’s illness affected their daughter Samantha while she was growing up.

Learn more about the film.

Documentary Film — Family Matters

Documentary Film — Family Matters

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Podcast – Living through someone else’s bi-polar illness

There’s a podcast in America called Conversations about Mental Illness. It has many episodes about various mental illness subjects, including PDST for ex-servicemen, parents of schizophrenics and other issues. Its extensive back catalogue may be worth a look for you.

One episode that goes back a few years is with a mental health expert  and social worker whose own husband — a psychiatrist no less — suffered a massive bi-polar episode after going off his medications. One of the things that comes out of her interview is that she and her husband isolated. They had no outside support, lived in a remote location, and tried reinventing the wheel in managing this situation. Amazingly, these two mental health experts had no experience with or knowledge of the caregiver community.

After his final manic episode, her husband sunk into a year-long depression that resulted in his suicide. His wife, Judy Eron, a psychotherapist, wrote What Goes Up, which you can find on-line.

Listen to Episode 23.

You can also visit Judy Eron’s web site to find out about her speaking engagements.

 

Book cover of What Goes Up by Judy Eron

Judy Eron — What Goes Up

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Who’d have thought Cracked Magazine could be so accurate

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.

5 Ways Growing Up in a Broken Home Screws Your Love Life

Cracked Magazine Cover

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Public figures open up about mental illness in the family

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.

Hartford Courant

As Mental Health Issues Rise, Politicians Open Up About Family Experiences

March 15, 2014|By DANIELA ALTIMARI, The Hartford Courant

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.”

Personal Insight

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.”

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Video — Living with a bi-polar parent or partner

Several people discuss the massive centre of gravity of having a bi-polar person their lives.

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Quote… Unquote

“…nothing can wear you out like caring about people”

S.E. Hinton

That Was Then, This is Now

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The impact of caregiving on your career

The nice people at Linked In had a piece about what caregiving can do to your job and job prospects.

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.

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Video — Women living with men who have depression

Take home points: take care of yourself and get help.

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How not to talk to the mentally ill

I probably come over as an awful person but believe it or not, my frustrations over caregiving for mentally ill family is — I hope– very compartmentalized. That being said, my rants here are rooted in frustration. However frustrated I or you become, it is my belief that we’re ethically obligated to be civil to our mentally ill relatives or simply walk out.

Two years ago I struck up a friendship with an American who came to Canada working for a continental environmental group. I explained early on that Global Warming can be difficult to sell to Canadians as a problem.

Screen Shot 2014-01-02 at 10.46.03 AM

Our first cold snap of 2014 shows why.

Several things happen during the post New Year’s deep freezes. Everything requires more energy, cars don’t start and require boosts from tow trucks that are so busy their drivers stop answering the telephone, pipes burst, you’re never quite warm enough — even in the shower, skin dries out, et cetera.

The worst of it is over by St Valentine’s day but yeah, we’re in the thick of it at the moment. But we’re supposed to be the mentally fit ones. We’re supposed to be the ones who are capable of self reliance. We’re supposed to be functional.

Therefore there was no excuse what so ever for this copper who lashed out at this mentally ill homeless man as happened here last night. I am sympathetic to his frustrations but we must be better than that.

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Putting the ‘No’ into ‘Noël’

Raymond Briggs - Father ChristmasThe icy hand of Christmas is around my throat once more.

I am faced with the most damnable inconvenience. My mother fell in her old folk’s home last week. She’s okay but it’s probably a combination of sleep apnea and a slowing metabolic rate that means her medication should be adjusted. However, for reasons known only to ambulance dispatch, she was driven to a hospital way off on the arse end of Creation. It’s an hour and a quarter drive in each direction thanks to this week-long storm.

The thing is, my aunt and her sister is apparently coming to town and Wodehouse jokes aside, since my dad died that’s it, the manufactured landscape can be avoided. When ever I was distant from home on Christmas, or nothing much was doing, bacon and eggs was a find Nativity dinner for me. Or, I’d do a ‘Jubilation’ dinner and be at a Chinese dinner with the Jewish families.*

The Pavlovian distaste I have for Christmas is probably deeply set. Of course, each culture has its gift-giving season and I’m sure that people all around the world have similar reasons for being less than thrilled with their celebrations.

It’s not that I was deprived. On the contrary, I had a great suburban childhood and a closet full of toys but looking back, I seem to recall that my dear mother was hospitalized in ’83 which means she’d been going off the rails for at least ten years before that but like the boiling frog, I took it for normal.

Christmas is a button that can be pushed on her.

That’s fair because each of us has one or two psychological points of heavier than normal gravity. But in her case, this translates into ‘The World Owes Me a Blank Cheque At Christmas.’ Basically, she mewls and protests endlessly a Christmas that [INSERT PERSON] has ruined Christmas by [INSERT OFFENSE]. Coupled with her tendency to spend all day bellowing orders at people like Cleopatra herself, well, I happily stayed in the kitchen and pretended to be a butler during all of the Christmas gatherings.

Well, since her husband (and my dad) died in 2010, I’ve stopped pretending. I don’t celebrate Christmas. Dad loved the groaning board full of food but I’m not much for the feast and since my mother is in a retirement home where meals are prepared, I wash my hands of it.

Now to my dilemma.

With my aunt coming into town, bloody drives out to a suburban hospital to spend time with someone whose idea of a greeting is a howl of indignation and threat to take you out of the will, will probably be on order for days on end. And my aunt will probably want to have dinner.

Perhaps I could tell her my vehicle was stolen. And that I’ve gone to work on the boats or rigs.

Just let me be the grouch that I am. And you should too. Look if all you have in common with your family is a bloody last name, for Chrissakes don’t go to the Christmas feast if you don’t want to.  You are under no obligations here except the ones you choose. Really.

I wish you a very merry Bah Humbug.

* One Christmas I was at a Chinese restaurant and reading the New York Review of Books. I recall because a Jewish politician was on the cover, probably Perez just before his body finally had enough of him and decided upon a stroke. Some jews who seemed to have New York accents were being hosted by some people who were local. 

We struck up a conversation and their questions seemed to take an uncomfortably acute interest in my biography. I realized that my bearded chin, the newspaper cover and the date conspired to give an impression. I somehow worked in into the conversation that I was not Jewish. At which point I was berated by a few of them for not being at home with my family!

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Duty and -18°

My mother’s annual winter falls come twice per winter. These seem to coincide with cold-snaps.My suspicion is that she’s tripping over a bathrobe, long flannel trousers and slippers despite the walker.

Well, it’s eighteen below right now and windy. Time to go to the hospital to check on her.

Entertainment for Caregivers

Dramas  for caregivers. Let me re-phrase that…filmed dramas for care-givers

  • Away from Her (2007) – A man coping with the institutionalization of his wife because of Alzheimer’s disease. This Canadian drama stars Gordon Pinsent and is based on a short story by Nobel Prize winner Alice Munro.
  • Harvest (2011) –  Three generations are drawn together by their patriarch. This film portrays a family that awkwardly yet delicately hanging on to what was, what now is and to one another.
  • Dear Frankie (2005) – This Scottish film is about a single mother who keeps a secret from her young deaf son in an attempt to protect him, but ends up having to hire a man to portray the boy’s father for a day.
  • The Straight Story (1999) – An old gent wants to visit his sick and estranged brother but has no car. So, he climbs on his lawnmower and sets out on a rather unusual road trip.  Oscar-nominated performance by Richard Farnsworth.

Comedies

  • Return to Me (2000) – A man unwittingly falls for the woman who received his late wife’s heart through a transplant in this gentle comedy.
  • Throw Momma From the Train (1987) – Crossed signals between strangers result in a half-arsed plot to kill the world’s most irritating mother.

Other  films addressing care giving issues

  • Dad (1989) – A man returns home to his mother care for his ailing father in this multigenerational look at the various joys, sorrows, and opportunities that caregiving affords to family relationships.
  • Marvin’s Room (1996) – This beautiful and truthful film follows two sisters, one of whom has given up her own pursuits to be a caregiver to her father and aunt. When the caregiver herself becomes ill , the other sister and her two sons come to help out. The depiction of the nature of caregiving is amazing.
  • Proof (2005) – A young woman caring for her mentally ill father confronts family issues and fears of inheriting her father’s disease. Literate adaptation of the stage play makes a touching statement about trust in relationships being more important than gaining empirical evidence.
  • The Wedding Gift (1994) – A British couple faces the challenge of a lifetime when the wife contracts a mysterious and debilating illness. Wry humor helps them cope in this lovely, bittersweet depiction of the unique difficulties faced by spousal caregivers.
  • Harry Brown (2011) – A pensioner whose wife is passing is prevented from being with her during her final moments because of thugs running amok on his estate, so he does what Michael Caine does best. Yes, this  isn’t a movie about caregiving for the mentally ill but it’s Michael Fucking Caine.

Maxims

BelieveLand

BelieveLand

  1. People who do not do the caregiving may have opinions but the ones who do the caregiving have the votes.
  2. There is no strategy for family caregivers of the bi-polar. Only tactics. The job of a caregiver is to be like the captain of a ship travelling the ocean with a hole beneath the waterline. Your job is to get the ship pointed in the right direction.
  3. Families reduce to one caregiver for the bi-polar relation.
  4. Virtually every article you will read about being a caregiver for a bi-polar parent will be useless if it addresses symptomatic emotions rather than causes.
  5. Social workers will not help the caregiver until the caregiver is also a mental patient.
  6. The best a bi-polar caregiver can do us install processes to reduce the severity of damage caused.
  7. The bi-polar parent can end up respecting family caregivers in inverse ratios to the amount of contact had with those people.
  8. Therapy doesn’t CURE anyone, it really just gives an individual a forum for feedback where possibly awareness and insight on how to change thinking and behaviours may result. (I realize that this is a sweeping statement but this is a blog for caregivers to family members with disabling mental illness.)
  9. Calling people on their lies accomplishes nothing. So, if a bossy relation makes demands, and you’re in private, say nothing. The person is in a point scoring game about family politics where only they know the rules.
  10. To paraphrase Batman, you don’t have to save anyone.

 

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Photographing a Mother’s Descent Into Mental Illness

Photographer Joshua Lutz has published a book of his own family photographs. So what you say? Hesitating Beauty documents the slide of his mother into mental illness using family photographs.

Image from Hesitating Beauty, © Joshua Lutz

Image from Hesitating Beauty, © Joshua Lutz

Here’s an article at Mother Jones about the book.

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.

You can purchase this book from Photoeye, BookDummyPress, Amazon and Barnes and Nobel.

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Family Photo Albums

A year or two ago, my mother decided to throw nearly everything out. A blessing in some ways except that the kept all of the junk and gave away all the good stuff. This included my possessions. She picked through my boxes in the basement, took what she wanted and threw out anything she didn’t understand. It’s important and not important, I guess. I’m still kind of pissed off about it, oddly.

Anway, I, of all people, ended up with several generations of family photos. Yep, the one person in the family who’s not going to be having kids. My family tree has has fruit, but on other limbs. Back tracking a but, my Dad had an older and younger brother. This side of the family is busy reproducing.

My mother had one sister. Neither I, nor my sister are having kids and my aunt is a spinster. Their dad was an undiagnosed mentally ill alcoholic, and their mother — if being passive-aggressive was an Olympic sport — could have been the country’s team captain. So, it’s no surprise that my family tree’s got some dead branches in it. So, what to do with the kilograms of family photo albums? As it happens, I’ve a pal in the same state. He’s the one member of his family not having kids and one corner of his flat had boxes of family photos. I mentioned to him that I was going to fill up my vehicle with my photo albums and spend a day driving to my nearest relative.

His nearest family members were in the same location so I offered to deliver his albums. Fortunately, he has the same sense of humour and we agreed to play a joke on the next generation by swapping family albums. Have find sorting it , posterity!

I Will Never Have… © XKCD

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Get You and Your Parent on a Do Not Call List.

Telephone marketing is a huge deal in the United States. Unfortunately, it can be taken to excess by some companies which is why a recent feature in America is the Do Not Call List.

If you’re new to caregiving you and your parent  may be at home all day, a prime target for telemarketers.  If you and your care receiver have had enough of irritating and potentially dangerous sales solicitation calls from telemarketers, add your telephone numbers to the National or state Do Not Call Lists. This is a good idea for several reasons:

  • It is annoying and time consuming to be interrupted by telemarketers all day.
  • People may be talked into paying fees for prizes.
  • There is a risk of revealing social security numbers, credit card numbers, and other personal information to crooks.

The National Do Not Call List is a function of the American Federal Trade Commission. There is no cost to enroll. For information on identity theft and other consumer issues, select For Consumers. There are a few exceptions to the national list, including calls from charities and political candidates. Telephone solicitation is less of an issue in Canada, Australia and the UK.

 

Family Heirloom from 5 Second Films

In case you’ve not heard of it, Five Second films is a web site that promotes, well, you guessed it — five second films. Here’s one of interest to us: Family Heirloom.

Thankfulness

A long while ago, things got hot for Henry Frobisher and so he decided to give piracy a rest and become an explorer. Well, he ended up freezing his arse off in Northern Canada and promised his crew that if they got out of this mess, they’d have a big feast of thanksgiving.

And, with respect to our American cousins who’ve a pathological need to be first in everything*, every year since them, in an unbroken line, there have been thanksgiving autumnal dinners in the new world.

I generally hated the holidays and even now their appearance on the calendar generates a pavlovian response to flee. As we were let out from school, there was always a sense of dread. My bipolar parent would generally make life intolerable to everyone because being a pest at the holidays was a wonderful way of drawing attention to herself.

Well, here’s a real lesson in thanksgiving from photographer Jessica Hilltout. Take a good look at these snaps the next time you are lamenting that you don’t have a bigger house, or the latest gizmo.

Happy Thanksgiving, everyone.

Normal Rockwell Parody

Normal Rockwell Parody

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Article: Who Cares for the Carers

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.

The article, by Judith Cameron. article posits that it’s in the NHS’s interests to engage with caregivers.

‘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.

 

 

 

The Guardian Logo

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Audio: Caregiver Burnout and a Depressed Family Member

About Families for Depression Awareness is an organization in America helping recognize and cope with depressive disorders to get people well and prevent suicides. According to their web site, the group’s mission is to:

  • To help families recognize and manage the various forms of depression and associated mood disorders.
  • To eliminate the stigma associated with depressive disorders.
  • To unite families and help them heal in coping with depression.

The group has several podcasts, but one is of particular interest to us. One of their recordings deals specifically with family caregiver burnout.

Bring Me Sunshine

Bring Me Sunshine

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Article: Caregiver stress and the Mental Health Commission of Canada

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.

Hoping to improve the situations for the tens of thousands of families in this situation, a group of 45 B.C. families sent suggestions to the Mental Health Commission of Canada with the hope that the Commission would adopt them and help support families. Their suggestions were sent via e-mail and were widely distributed, according to the article. The commission defines itself as “a catalyst for transformative change” with the goal to, among other things, “improve services and support.” The organization arose from the report Out of the Shadows at Last — Transforming Mental Health, Mental Illness and Addiction Services in Canada in 2006. It received federal funding in 2007.

Read more…

The pressure is good for you

Caregiver to the Mentally Ill Maxim #2

A while ago, I put forth a maxim in a post. It was essentially people who do not do the caregiving may have opinions but the ones who do the caregiving have the votes.

  • Maxim #2 – There is no strategy for family caregivers of the bi-polar. Only tactics. The caregiver is like the captain of a ship travelling the ocean with a hole beneath the waterline. Your job is to get the ship pointed in the right direction.

There is no strategy. Just tactics.

Audio: Family Caregivers Unite — A radio program

Physician Gordon Atherley was born in Britain, practiced in Canada and now is retired in America. His golden years are being filled with activism for family caregivers.

He has a weekly radio program about the subject of family caregiving called Family Caregivers United. You can listen to the program over the internet. Some of the past episodes have covered topics such as family caregiving and:

I encourage you to visit the web site and browse the back catalogue of shows.

Family Caregivers Unite Radio Program

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Radio: Balancing life as a family caregiver

One of the hardest jobs many of us will take on in our lifetimes is caring for loved ones as they live longer. The impact upon our careers will be increasingly significant. Balancing work, with your own health and busy lives can be a real challenge. CBC Radio One has a program in British Columbia called Radio West. You can listen to the April 23, 2012 edition as host Rebecca Zandbergen interviwed columnist Star Weiss to discuss the issue. The interview is very short but one point is hammered home:  financial planning for elder care when your parents have complex co-morbidities will make your life as a family caregiver easier.

CBC Radio West

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Video: Caring for mentally ill family members

The health show Tonic recently broadcast a segment on the difficulties of caring for relations with mental illness. Tonic is shown on the Australian Broadcasting Corporation network and covers health issues generally.

Tonic

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Carer’s rights — and obligations

A few weeks ago I noticed a woman who was clearly having trouble walking a dog. I offered to help. Basically, the demented Dalmatian was walking her.

She was talking care of a neighbour’s fido and, well, wasn’t used to being around canines.

‘He’s not doing it to be bad, he’s an animal. He doesn’t know any better so he’ll just naturally push any limit’ I explained and gave her some tips on how to be the pooch’s alpha.

The same can be said of our bipolar relations. i was thinking about this when reading about advocates for the rights of caregivers. I’m slightly ambivalent about this sort of thing outside of a professional context. Unlike an employment contract, we’re binding ourselves to our mentally ill parents out of a sense of duty. Having set this expectation for ourselves, we are obligated to be civil.

No matter what repetitive stupidities come out of your bi-polar parent’s mouth, keep quiet. Having set yourself up as care giver, and you’re supposed to know better. Just don’t say anything. While I have been sorrily tempted to make a rude gesture behind my bi-polar parent’s back, or when reaching into a string bag, I have never done so. I have told her to fuck off and occasionally laughed in her face, but those were immediate reactions and hopefully few and far between.

You don’t owe your bi-polar parent anything, but having put yourself in the situation, I think you’re obligated to be civil, at least when within ear shot. After all, we’re supposed to know better.

This is the part of my job I hate

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Video: Caregivers and Bossy Siblings

The sibling, or other family relation who swans in with no end of helpful advice for the caregiver is the subject of this video.  My own family dynamic is not so complicated but for those of you with more centrifugal forces inside your family, this recording may provide a platform for discussion.

I’ve mentioned this video before in another entry, but it might have gotten lost in the shuffle.

Here’s that video again.

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Carer’s Discussion

The UK charity Rethink Mental Illness, in addition to its other good works, has a web site where there is a discussion forum for all mental health issues and types but, of interest to us, is the section on carers.

Here it is. 

Rethink Mental Illness Logo

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The Barometer

I started this web diary because I had no-one with whom to talk about being a bi-polar caregiver. I seriously have no idea how others cope but I have noticed one thing: when I start posting more, it’s because things are getting harder.

What’s your barometer?

Things are going easy now but my bi-polar parent was in the hospital recently in account of pneumonia; but even that was comparatively simple since it merely involved my stopping by after work daily and so in addition to being busy, there was little impact on me since I wasn’t having to anticipate things six moves in advance. I have noticed that things get hard when she is ‘control’ or at least has veto over something. The sale of her house was a colossal effort because every single thing that needed to get done was the end of the world. She’d periodically call people involved to cancel instructions or give strings of contradictory requests and orders clearly counter to her own interests. (Like remove the fireplace, thus devaluing the house. Great job, Mum.)

Things like managing her mother’s bank account are a source of conflict. She has power over her mother’s finances and every once in a while we need to do things like order cheques or move money about. Driving my mother to the bank results in a predictable drama. She gets out of the vehicle and then starts making demands, holding the process hostage for some out of proportion ‘reward’ like a vacation in some warm country or the like. She’s accomplished nothing with her life, so any power she does have, she swings like a claymore.

As that her house has been sold and her money locked away in investments where it’ll be hard for her to do anything foolish, I guess the next major point of conflict will be her will and mandate — again.  She had a will but when I criticized her treatment of me, she wrote a libellous letter, full of invented incidents and half-truths and so it’ll probably not stand a legal challenge if my sister, the drugs-addicted stripper, decides to contest.

I’ve told my mother to shove her will up her arse; I shan’t be blackmailed because at 11 p.m., she’s decided I must drive across town to bring her an orange. Having been through the will process, and the mandate process, I fail to see why I need to take more days off work to certify paperwork that she’ll rescind the next time she gets in ill humour.

Another issue that has come up is tax time is when she is suddenly throwing her not inconsiderable girth about. She is suddenly in charge and demonstrates it though tantrums and nonsensical demands.

Back in the day when she was living at home, and her husband was alive, every family event was a fireball with plenty of secondary spot fires. Lots of engineered dramatics, basically I’d come stay in the kitchen, eat in silence, wash up and leave. Now that house finally sold, and she’s in a retirement home, her finances are regularized, perhaps a regularity will develop.

Still, if I am writing here a lot. It probably means I am on a short fuse.

Identify your barometer. For my father, it was alcohol, incidentally.

The Typewriter

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Audio: Caring for a partner

What happens when home is no longer a place of refuge from the world of work, but a place of work?

That was one of the many interesting observations made by a man who is caring for his wife with MS on this interview that was aired on BBC Radio 4’s Women’s Hour last week. While not directly concerned with bi-polar parents, there’s enough common ground that I believe you will find it of interest. Jenni Murray speaks to Roger Firth, who’s cared for his wife for the past 10 years, and to Jean French from Carers UK.

One of the interesting remarks was not to think about the long term. Of course, this is against what I have been advising. The take on it was that taking too long a view may be morale sapping and you never know what the future holds. Perhaps something that seems impossible this month may be workable next month as circumstances change.  I guess it may be a bit like running up hill: staring at the top when you’re chugging away can be dispiriting. Work on the road immediately before you and let the top of the hill get to you when it gets to you.

All in all, worth a listen.

BBC Radio 4

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Now-ness

A week ago, before my bi-polar parent’s pneumonia, I posted an entry exhorting the caregivers to go out an enjoy life. The missive was occasioned by a look at the park in front of my flat. Here’s that view.

For now, enjoy the now. Yes, your bi-polar parent can be damnation but you can enjoy life or be ruled by one fact of your life. You call.

The Median and the Park

Lessons from Running

Last year I was training through the pain until finally I couldn’t ignore my knee.

My left leg had no strength, and no matter how hard I trained, or rested, or iced, my pain-free distances got shorter and shorter. My left knee was a hinge with no power to it. Finally, I paid for an MRI and a visit to the doctor who was convinced I’d a torn meniscus.

‘Your knee is fine. No pathologies,’ the doctor said.

‘Well, that narrows it down,’ says I. ‘Send me to psych!’

‘Not so fast,’ my quack fired back, and ordered me to go see a physio therapist. I presented to the next doctor in my trainers and running kit. I explained the injury, lied about my mileage, and then underwent the physical exam. I was asked to stand, lean and pose like a model. Then I went on the bed and was put in yoga poses while being told to resist or push. When on my right side, with my left leg behind me, I was asked to raise my leg and resist as the doctor pushed my left ankle downwards with two fingers.

My leg collapsed.

The physician offered a witticism and we tried it again with the same result. I could resist very comfortably with my other leg probably because it is my dominant side.

I shall let you look up Iliotibial Band Syndrome on your own, but basically, my stride is not perfect. My instincts are to use momentum rather than muscle to swing my legs forward. This resulted in a atrophied gluteus medius, or lower arse muscle. The result was that the fibrous band keeping the leg apparatus in good order got too tight. It pulled my kneecap from its grove as my leg muscles got bigger. The treatment is trivial: I do leg lifts of various sorts to build up and recruit the unused gluteus muscles. This evens my stride and I am now pain free.

The lesson here is that working harder and longer can cause atrophy in some areas despite overall strength. I am proud of my knowledge gained through various caregiving experiences. I like to think that despite my impatience, it’s an ethical thing to do and hopefully it makes me a good person. Besides, the are worse things to be than useful.

But, doing the same things harder all the time may cause other parts of my life to atrophy and that must be guarded against.

Anatomy of ITB Syndrome

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Care and feeding

Last week my bi-polar mother was taken to the hospital after taking ill with pneumonia. She was out of it for the first day, and spent the night in the critical ward. The next day she started to be well enough to eat but was so weak that the food was at greater risk of ending on her Johnny Gown, so I picked the bowl and fed her the pea soup.

I felt an internal fog horn go off, the grim klaxon of duty. ‘Let’s just get this over with’ I thought, and began feeding her. At the second spoonful she remarked ‘You should try to do more for me.’

A few years ago, when my Dad was on his last legs, I groomed him and fed him all the while cheerleading him into the grave as the pancreatic blastoma ate his guts. I had a 359-degree blind spot about what was happening. However, this time, with my bi-polar mother sapped by the lung infection, understandably, not her fault but the thought that went through my head  was that she’s already used up more compassion than four people get in a lifetime. That aside, at the moment she flat out couldn’t eat and despite the years of acting like a manure spreader at garden party, that couldn’t be held against her at that moment. It would have been unethical.

The focus of these rants is to help me think aloud and I have been reading a lot about caregivers rights when tending to the mentally ill, but we cannot have any cogent discussion about rights without obligations. She needed to eat, and not assisting would have been cruel. Despite my occasional tendency to laugh in her face and tell her to ‘Fuck off’  you can’t sit on the fence out of exhaustion. If you’re exhausted, get help but the withholding of critical care — food in this instance — even though I’d be dancing if the Old Man’s Friend had come with a tighter embrace — would be unethical.

It was overwith in a few minutes. Sure an orderly would have done it eventually she needed the nutrition. And given her tendency to only want to eat sugary fruits, a bit of pea soup wouldn’t have killed her.

Of course, her remark that I should try to do more for her was childish. But, it was a reaction of helplessness. I remember once when my grandmother fell and in the immediate agony of the fall, manufactured a reason to blame the only other person in the house for the event. People do strange things when they’re prone with pane. Don’t hold it against them.

Remove Yourself from the Equation

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