Life | 9 months ago

Caroline (not her real name) got in touch with us to tell us about the torment she and her family are going through in trying to cope with their brother's episodes of psychosis, whilst they also struggle to come to terms with the death of their father.

She and her family are desperate for any help they can get. This is her own personal account of what they have been through. Her details are with the editor.

Some readers may find the content of this article distressing.

*****
A year ago this week I lost my Dad.

He died suddenly and without warning, on the holiday of a lifetime with friends. It was almost two weeks before we could even get him home. I live with my Mum and my brothers. I'm the eldest, in my late twenties and the only girl. My youngest brother is not yet a teenager.

I wish this was a piece about grief.

I wish I was writing about how we coped, how far we've come, how we've dealt with that pain, picked up the shards of our broken family, and pieced them back together around the gaping hole of that loss.

But it isn't.

The truth is that my family hasn't been given the chance to really grieve, to take the time to nurse our wounds and pick ourselves up again.

My brother is very ill.

Advertisement

He has been struggling with his mental health for most of his life. He began to self-harm in his teens, and was an unhappy child. We lived abroad and he never really fitted in. As he grew older, he began to self-medicate, relying on alcohol to numb his pain when doctors and medication didn't help.

By the time our family realised how serious his problems were, and that he needed help - help he was both unwilling and unable to look for himself - it was too late. He was an adult, and that means that, in Ireland, we are denied any right to help him when he is not in a position to help himself. To date he has made multiple suicide attempts.

In recent years, his mental health has been steadily in decline. He has become more withdrawn and unhappy, medication hasn't helped. He stays up all night, and spends his days dozing or glued to a screen.

His self-care is non-existent. He eats nothing for days, then binges on fast food, eating all around him before being overcome by guilt. Showers are a rare event; personal hygiene is not part of his life.

"It's like living in a horror film"

His situation worsened when he graduated from college. Without the grades to proceed to Masters level, and unable to gain the work experience that might get him in a back door, he was unable to progress into the workforce. He feels worthless. He began steadily drinking more, and abused his medication.

He withdrew from his friends, lashed out at his family. Due to the levels of his self-harm, we have had to remove the door of his bedroom.

We feared that the next time he were to make an attempt on his life, we would not be able to reach him. He pulled his window half off its hinges once in an attempt to claw his way out, screaming, "Let me jump, let me die!" It took three people to hold him down.

Advertisement

Our situation was becoming unliveable. He refused to go to therapy in any meaningful way, and we couldn't make him. He was slowly killing himself, and the stress was taking its toll on our whole family.

Then my Dad was taken from us, and he spiralled out of all control.

In the immediate aftermath of my father's death, he experienced extreme psychosis; screaming and screaming for hours that he had killed our father, slamming his head into walls until he split it open. For a family already so distressed by my Dad's sudden passing, the stress of this was indescribable.

His self-harm increased exponentially, he was covered in cuts and burns and we would wake up to find trails of blood dripping through the house. The walls are full of holes where he has broken them with his fists and his head.

We have become desensitised to these sights, reassuring ourselves that as long as he still breathes we have hope.

He screams. With no warning, out of the blue, and often. Day and night.

We are woken at 3am, 4am, by violent screaming. It's like living in a horror film. He insists that he has to, always has to scream. I have lost count of how many times in the last year we have had to call an ambulance, how many times he has been coaxed and bullied and carried to the hospital in varying states of consciousness, or driven away in the back of a police car, my mother and little brother crying, all of us exhausted, scared, defeated.

We spent last Christmas wiping our tears and trying to have dinner together, as he kicked and screamed and raged outside our front door. It would not have been safe for us to let him in.

Advertisement

"Everything is screamed"

The psychosis worsened. One night, he ran down the street in the middle of a storm, barefoot and wearing just his boxer shorts, all the while screaming and screaming that he would throw himself in front of a car and it would all be over.

He is often not in his right mind, and speaks frequently of wanting to die. On this night, he was admitted to the psych unit in our HSE catchment area, and in the calm of the next few days - in the eye of the storm - we planned my father's funeral.

My brother was released to lay our Dad to rest. He smoked by the graveside and shook as Dad was lowered into that hole in the ground. Later, he sneaked away from the afters to drown his sorrows, eventually staggering back to our house. More screaming, more delusions, our shattered hearts breaking into even smaller pieces. Not even that day did we get the peace to say quietly goodbye. That's a luxury we still have not had.

Since that night, my brother has only deteriorated further. He continues to experience psychotic episodes. In the back of a Garda car one night, he tried to set a book on fire. His violent behaviour is increasing. He smashes things around our home in his fury. The slightest, most innocuous thing sets him off.

We have been punched, kicked, bitten. Verbal abuse and threats are part of the fabric of everyday life. Two of my brothers have suffered serious bite wounds. In the grip of his psychosis, my brother is a trapped animal; an unintelligible, writhing, flailing, spitting thing made of teeth and claws and terror.

He has threatened to burn us in our beds, cut our throats, murder our pets, skin us alive, throttle us, kill us. Everything is screamed. We try to stop him from hurting himself. In his delusions, he believes we are trying to kill him, and it takes as many as five people to pin him down, waiting for the next emergency service to arrive.

Recently, we celebrated my Dad's birthday. Family visited to reminisce and to be together. My brother sneaked out, and got so drunk that he passed out in our front garden. In itself, this isn't unusual.

Advertisement

Our neighbours are used to the sight of him sprawled in our yard. He's too heavy to lift, and at least if he's already on the ground he can't hurt himself any further. On this night, he stopped breathing. My brother turned blue, and began choking on bile. We were unable to resuscitate him ourselves. My mother thought she was going to lose her son.

'Do Not Resuscitate'

Over the ten days that followed, my brother was hospitalised seven more times. He has twice actively attempted suicide, washing down a cocktail of painkillers and tranquilisers with spirits.

A few weeks ago, two young women found him passed out behind some bushes. He told us he was meeting friends that night, a rare thing, a tiny ray of hope.

When he was found, he had 'Do Not Resuscitate' written on both of his forearms in permanent marker.

He blames us for not allowing him to die. He is afraid we are trying to hurt him and kill him.

Three times, he has been admitted to the psych unit. Each time he is sent right back home, for the same thing to happen again. My youngest brother has had to hear him tell us how he will kill himself, that he wants to die and hates us all, and graphic descriptions of the harm he will do to us.

He will switch in an instant, then a grown man sobbing great, broken-hearted sobs, crying out how sorry he is, how worthless he is, how no one can help him.

Advertisement

We want to help him, but the mental health services in this country have failed us, time and time again. My brother has a bone-deep fear and mistrust of authority. He hates the psych unit. The other patients frighten him. He doesn't understand that he is doing the same to us. In his mind, he is always the victim.

He is also clever. We know he has been lying to his doctors. We have found court psych reports wherein he has hugely underreported his symptoms. The psychiatrist treating him has no real knowledge of the extent of his condition and suffering.

We have tried to talk to his psychiatrist on many occasions and she will not engage with us, saying his problems stem from his drinking but we believe that they go much deeper and than the drinking is a symptom. We don't fully know what he tells her.

My brother and my fiancé wrote to this psychiatrist, explaining the severity of our situation, and our desperation, and requesting a family meeting. We've yet to receive a response.

"Still, we cannot get a meeting with his psychiatrist"

For our safety, the family GP and Gardai have told us to seek a protection order, but all that guarantees is that when (not if) my brother breaks it, he will be arrested, and he will be charged. We don't want to send him to jail, where he will only suffer more. We want to find help for him.

We have tried to have him committed, again and again, but we keep being told that it comes down to the drinking, and that his mental health problems are considered separately - in spite of how intricately woven and inseparable they are. We know that centres for dual-diagnosis exist, but getting him referred into one, especially when he refuses point blank to accept in-patient treatment, has proven an impossible task thus far.

We have been told, over and over again, that while my brother drinks, there will be no help for him. That legally, there is nothing that can be done. The fact that his substance abuse and his psychiatric problems are so intimately linked is not addressed. It is denied.

Advertisement

We have sought second, third, fourth opinions. We have been told by GPs, psychologists, psychiatrists, the Mental Health Commission and other mental health professionals, that what he needs is an extended period of observation and diagnosis.

We have been documenting his psychiatric episodes, and have hours of video and audio recordings - we have him on camera threatening us, attacking us, screaming, harming himself, seeing things, talking about things and people that aren't there and don't exist.

He exists increasingly in an alternative reality. Recently he wedged his upper body, half-naked, into our dog's sleeping crate, insisting that he would sleep there and the dog was to take his bed, his speech then dissolving into screams and nonsense.

He smashed his head repeatedly into the tiled floor, tried to swallow his cigarette lighter, choking on it. My mother attempted to take it from his mouth: he bit into it and swallowed the fluid. He had no alcohol in his system at this time.

We have this episode filmed. Every medical professional we have shown it to is incredibly concerned, for our well-being and for his. Still, we cannot get a meeting with his psychiatrist. She will not discuss his treatment or diagnosis with us, in spite of the fact that we are his carers, in all but name.

My mother can barely leave the house. We are prisoners in a volatile war zone, in ever-increasing danger. The doctor insists that while he drinks at all, they can do nothing to help him, that he should not be brought to her, that we are not to keep bringing him in, though it is other medical professionals who make those decisions, not us.

My brother drinks because he is in pain. He is sick. He has no hope. He sees no other way. He won't stop, and short of chaining him up, we can do nothing to stop him.

He is not of sound enough mind to make decisions about his welfare. If he does not get the help he needs, he will die at his own hand. He will kill or seriously injure someone else. This is not idle speculation - my other brothers have scars.

Advertisement

"Where did it all go wrong?"

My brother is being neglected. His insurance, which we could ill-afford since we lost my father's income, said they would not cover psychiatric illness as some of his difficulties precede the cover. He is now not insured. Our financial situation is tenuous - our income consists of my entry-level salary, and a small amount that I make on the side.

Weekends don't exist for me. Two of my brothers work part-time, but they have college and other expenses. We do not have the resources to throw money at this, and even if we did, my brother will not accept voluntary treatment. He doesn't believe his life is worth saving, but he is not mentally in a position to make decisions about his treatment.

We must rely on the HSE and it's as if the HSE is leaving him to die. My family is being neglected, being made to live with this daily abuse. We are all suffering. We sleep with one eye open, jerking up at the slightest sound for fear of what he has done to himself this time.

We lock our doors. He pounds on them late at night. The anxiety we live with follows us through our daily lives, infecting everything and every day.

In the dead of night, when things are at their most extreme, we often have to whisk away my little brother. He has already seen too much. His own mental health is suffering. All of ours is. He keeps asking, "Where did it all go wrong?". We have to lock away any medication, anything sharp.

The kitchen and living room are locked every night so that my brother cannot easily send our home up in flames, either by accident or design. We lock the doors to protect our pets.

No one is protecting us. We live in a constant state of fear, anxiety and exhaustion. We get so little sleep. My mother needs a break from the worry, to pick up the pieces of the life she had. I want to be able to plan my wedding, and my future.

Advertisement

The others deserve the space to study, and to have a childhood. Sometimes, this doesn't feel real. How could it be? And underneath it all is the constant pain of my father's loss; a wound with still-ragged edges that cannot even begin to heal.

The views expressed are those of the author based on her own personal experience.

*****

The Minister for Health's Office and the HSE have both been contacted for comment.

The HSE say has responded saying, "Given that the woman has written anonymously, it is really hard for us to provide proper signposting without knowing where the family is based." They have provided some resources for the family to access and JOE has passed these onto the author of this piece and listed them and other resources below.

Shine

(not-for-profit organisation funded through the HSE). Shine has 7 Resource Officers across the country that can work with and support the family directly. Depending on where the family members live, Shine can also provide counselling and family focused programmes. The Resource Officer can also act as advocate if so desired. They can meet one-to-one with the family to provide practical information and supports. Their Information Helpline is 1890 621 631.

Information on how to access and area map:

Advertisement

http://www.shineonline.ie/index.php/our-supports-an-services

Services info:

http://www.shineonline.ie/index.php/services

http://www.shineonline.ie/index.php/education-courses

Information on HSE Authorised Officers:

http://www.hse.ie/eng/services/list/4/Mental_Health_Services/dsc/communityservices/Authorised_Officer.html  

Some other sources that might be of use:

Pieta House

The Samaritans

Console

http://www.mhcirl.ie/File/Leaflet_InvAforRMPs.pdf

http://www.citizensinformation.ie/en/health/mental_health/admission_to_a_psychiatric_hospital.html

http://www.yourmentalhealth.ie/Mind-Yourself-Support-Others/Concerned/Supports-for-carers-family-and-friends/ 

Read more about:

Mental Health, JOE Blogs, Editor's Pick 2015