Trust us we care, but not about you

In November ’17 and July ’18 our family experienced a brush with the Mental Health system in NZ. This is kinda how it went.

Ah Mrs Jeffels, great news. After a weekend that must have been most difficult for you, on account of your husband being a missing person and all that time you spent speaking to the Police, we are very pleased to be able to advise you that he is safe.

Cue relief. Some desperate grateful howling. A great deal of embarrassing snotting.

– Where is he?

-Ah well. We can tell you that this afternoon your husband acknowledged that after three days of being lost he did indeed have a broken leg and self-admitted himself into our regional hospital.

-I am beyond grateful to hear this news. (Cue – more howling and snotting.) So, how is he?

-He is safe and receiving treatment for his broken leg. He is not in great shape.

-Yes, I am aware of the broken leg. It’s the same broken leg you told me was a problem in November when you released him from Mental Health Respite, into my care. Though, I must say you missed a trick there as you didn’t hear him say that he was motivated to do away with the pain of the broken leg for good. You missed that bit because he entrusted that raw information to his wife. Along with the information that he’d out-psyched the Psych by the way. When I advised you, you released him into my care and advised me to hide all the pills and sharps in the house. For three months I had panic attacks if he was out of my presence for fear that he still wanted to do away with the broken leg pain, for good. You did follow up of course. You rang to ask him if he felt like causing himself harm. I was the one who put the sharps away and prayed for safety and desperately worked and begged for enough income to pay the bills and provide for us all.  How is the broken leg now?

-Well ah, that’s tricky. You see, as he self-admitted and he didn’t sign a release form we cannot tell you much except he’s here and he has a broken leg.

-Right. When can I see him?

-Can’t tell you that.

-When will he be transferred to Auckland?

-Can’t tell you that.

-You say he’s in ‘bad shape’. What does that mean?

-Can’t tell you that.

-But he drove his car down there, where is it and can I pick it up?

-Don’t know sorry. Don’t have details.

-Can you put me through to him.

-No.

-Can I talk with the nurse who was going to call me with all the details but kinda forgot. (I know, you’re busy!).

-No. I’m not Anita so I can’t say anything. Anita’s not here right now.

-But you are aware that he has been a missing person and has been missing for three days. That the police were concerned about his safety and his ability to deal with his broken leg without medication and yet they entrusted me with the details, because y’know,  I’m his wife. I’m the one who has been living this broken leg with him, day in day out in sickness and health, for the past ten years.

-Sorry. No form signed. There’s nothing I can do.

-But you are aware that this particular form of broken leg is clinically known as deceptive and sneaky and unpredictable? It lies, cheats, distorts reality? I mean, you’re a broken leg specialist, you know this, right?

-Yes. But we’ve examined him and our professional opinion is – we do not want to be held accountable for breaching patient confidentiality.

-But the police and other emergency services have acknowledged that I am the woman on the ground, the one who deals with the broken leg and all the pain and harm it causes him, me and our family, for the past ten years, why can’t you?

-No signed consent.

-Did it occur to you that he was so broken and ill and suffering in pain with the broken leg that he was not compos mentis enough to even think of signing a release form? Or perhaps the broken leg was whispering paranoid thoughts into his head. That’s happened before. I have been the bad guy when the broken leg is playing up, for the past ten years, in two countries. You’ve examined the broken leg for five minutes. I know this man, the good stuff and the bad. Despite all the crap – and believe me there’s been truckloads – you really think I can’t handle the truth and don’t deserve to be party to the information I need to care for my husband once he leaves your fine politically correct establishment?

-No form. Don’t get stroppy. We will not tolerate our staff being abused. There’s nothing I can tell you.

-So, it’s good enough for me to live under the extreme stress of this kind of broken leg, the trauma of a missing person and grave fears for his safety, and to be expected to cope and provide for the treatment and the day-to-day care of my husband and broken leg, but now that he has actually been found (thank God) and is alive I am not entitled to any information about his condition?

-No form. Sorry. It’s the rules.

 

And that my friends is why the mental health system is failing us as a community. You see the people on the frontline – the Mums, Dads, wives, husbands, children, brothers and sisters – we carry it all yet when we ask for the information we need to cope we are told we do not require that information. We are the broken down wine-drinking terrified ambulance at the bottom of the hill. We silently advocate, cry, love, pray for our very ill loved ones yet when it comes down to it, we are not privy to the information we need to provide our family members with our full support. We are the epitome of the nurses who clean up the shit and are never able to gain insight into the patient notes. Obviously, we wouldn’t understand them, doctor knows best.

Yet most of us know our loved one’s illnesses well. We know when it twists the truth in their heads and stirs them to fear us, or hate us or abuse us. We know when the glass turns fun-house glass and the truth is distorted. We dodge the verbal (and sometimes physical) punches and we keep going. Not because we are martyrs but because we truly love them and that’s what family does.

Beyond the social media campaigns that champion asking for help always shot in clean, warm kitchens, we are the unsung force that keeps our families going. Our kitchens are not clean, by the way. There’s dog fur on the tiles and last night’s chips left in the pan on the stove. We are tired and stressed and scared and yet no one thinks to ask us what we think is best and right for those we have sacrificed our peace, for.

When the Tvc’s and Facebook campaigns are done advocating for awareness about suicide and mental illness, we are the ones cleaning up the shit and the vomit and the drink and the mess. We are the ones who cry as we pray as we bargain for sleep. You’d think respect and access to the information we need to help our loved ones, would not be too much to ask for.

Begin again

Image from Pixabay CC

Chris Cornell is dead, and my Facebook feed is full of grief. And posts offering hot cups of tea or coffee and open doors to all who harbour the same kind of desperate suicidal thoughts that plagued the rock star.

But not mine. I don’t feel sad for the man himself.

I feel sorry for Vicky, his wife.

He is gone. He is no longer here to feel sorry for. No, I feel sorry for Vicky, his wife, the one left behind to begin again.

I  know how hard it can be when mental health problems worm into the heart of a family, and once lodged there in all that fleshy, juicy love and care, digs in and starts to poison it.

It’s true that I’m not familiar with the star’s music so perhaps that explains my inability to share in the public outpouring of grief. Or maybe it’s just because I am full up with sorry. 

I’m sorry for the woman who lost her soul mate. I’m sorry for the days, months, years before his death, that were filled with pain and anger and frustration. For all those bitter tortured arguments that lead to tears alone on a bed wondering if he would ever return from wherever he had stormed out to.

I’m sorry for the terrifying sense of responsibility. When you’re the well one in a relationship common wisdom would have it that you are responsible for the care of the other. You analyse the spat out words. Did he or she really mean ‘I hate my life’? How much, did he mean it?  Would he actually act on it?

You’re not the only one who lays the weight of responsibility directly at your feet. Our social services and our overburdened medical services do too. Oh sure, they can write the scripts and deliver the medical remedy, but it is the family who is sent straight back home with their messed-up loved one, to enact the care prescribed by the doctors in their tidy consulting rooms.

They’re the ones asked to monitor the taking of medication. To become immediate medical specialists in recognising signs of deterioration, to try and make do and mend. It’s a mental health crisis out there. So many people hurting. So many people with depression, but God forbid you or your loved one is diagnosed with the less trendy malady – bipolar or schizophrenia.

I’m sorry for the sense of loss. The happy ever after that didn’t happen. The anguish that comes from feeling there’s no way to stop the runaway train and the inevitable tragic end to the journey.

I’m sorry for the guilt. I’m sorry that no matter how hard she tried, how careful and supportive she was, it wasn’t enough to stop him. I’m sorry for her regrets. I’m sorry for her anger. And her soul-destroying guilt.

It never could be enough. We are not responsible for another adult. To ensure the quality and longevity of his life was never her responsibility, but I know she won’t hear it.

All those open doors on Facebook and all those empty tables resplendent with hot drinks and homemade biscuits are pointless hollow gestures.  Damaged people don’t often scour the streets looking for open doors. It’s hard enough calling an anonymous telephone number and crying for help. It’s even harder when they tell you, that your pain or your loved one’s pain is not enough. It doesn’t merit immediate attention. 

‘But if you could just pop down the road and find an open door…’

And let’s hope you don’t feel that way on a weekend when only crisis teams can help. Is it a crisis? How do you know? When they wheel his body away?

Of course, it is dreadfully sad that Chris’ last days were so tortured, that he so desperately needed help and couldn’t find it. It is tragic, but I still don’t cry for him. Funerals are never for the dead, they are for those still living but dying inside.

The helpers who tried to help.

The helpers who reached the end of their patience and kindness and compassion, and had nothing more to give from the empty shell.

The mother who couldn’t reach the son.

The friend who didn’t want to butt in.

The child who lost his Dad and he doesn’t understand.

The Facebook friend, with her well-meaning door wide open.

The wife who tried so hard and now feels this maelstrom of emotions – anger, guilt, fear, loneliness.

The ones left behind who realise just how temporary this life is. How fragile.  Who did what they could. The ones who have to begin living again when they don’t know how. I feel for them with all my aching heart.