Tag: crisis

I don’t want to bring only despair

I am sorry I have not written in many weeks.

I am shattered.

There seems to be no end to the pain and suffering my husband and others I care about are going through. No end to how many times we are brushed off or turned away by all those who should support us. My husband is seriously ill physically and mentally and we are utterly overwhelmed by what he is dealing with and the fear of what’s to come and the frustration of being passed from department to department in the hospital, ultimately left to cope alone.

It feels like fighting and screaming for help in a massive black hole I’m at the bottom of whilst the people I would have depended on stand way above me at the edge of the pit and sneer and laugh at me. And it’s so many times worse because I’m crying for people I love to be heard and helped and understood, not for me.

I’m exhausted. I’m in a huge amount of pain. I’m struggling to do more as I’m “supposed” to but the pain is worse and worse and I don’t know how much more I can take. Physically, so many small things are now really difficult. So many things I want to help my husband with, I’m physically unable to. I’ve been going through a very bad time with family realising how the abuse I suffered is actually not over and people whose behaviour I excused, actually perpetrated abuse; how control and manipulation is still happening in my family and hurting vulnerable people.

Worse still, family members refuse to hear me when I speak out about what’s happening, precisely because I’ve been abused – they use this to say that the problem is me and that I’m the one with a sick view of the world.

This negativity and exhaustion and despair is not what I want to bring to this blog. I want it to be honest but I don’t want to write time and again about hurt and loss. When I started this blog I wanted it to be about hope. Holding on to hope is very hard right now. Lots of days I can’t write at all. I desperately want to share good things and desperately need to be more thankful. When I’m so low all I can do is try to walk through the day and I have no words left.

I need to figure out what changes I can make to shape this blog differently; to still be honest but write more consistently and change the balance of what I post about.

Ginny xxx

Again, and never again…

[This post mentions abuse and discusses painful mental experiences. I am currently safe.]

A couple of weeks ago I found out someone I love was being abused. Had been for months or years. By a trusted person. How did I not know? Blind. Does it make me as bad as the abuser if I didn’t know? That’s just one of their tricks so you won’t tell, a distant part of me says, but it doesn’t make a difference.

Today I found out my fiancé has been much more ill than I knew in recent weeks. How didn’t I know? We’ve been with each other a significant part of each day. How could I not know? How stupid and blind am I? Insensitive, I must have been too selfish to notice. Spoiled, bad, ugly, brat, greedy, you haven’t said sorry enough, no one has done as little as you, the voices join in.

Today, in a way (too personal to him to write about) a point of security we had counted on for our future is gone. He’s / We’ve been tricked again, lied to again, lost again. Probably what is lost can’t be got back. Stupid me. Stupid me for trusting again. Every security I’ve counted on has been pulled from under us. Stupid. How could I not know this was just a dream and would be the same?

But I did really need it to have any chance of coping, the sick broken me says.

I’m watching my dad be put down, manipulated, knocked back by my step mum. Whilst she is emotionally abusing me, and doing what she can to confuse and control my relationship with my dad. And I believe she is hurting another vulnerable member of the family too. My dad appears blind to what she is doing to him and to me. A frightened but angry child in me is screaming, how can he not know?! Why won’t he do something? Look what she’s doing to him… and why won’t he help me?(That last part I’m so ashamed of.) Which is ironic and hypocritical of me, given what I too have been blind to. I should not be surprised at least, as he remained blind to my mother’s far worse behaviour.

I feel as if I’m fragmenting into too many pieces.

Too many voices are screaming in my head, repeating my guilt, to make me doubt and paralyse me. They will kill me with their screaming and the noise and pain and reliving, unless I cut myself. There are too many parts of me and they all have voices too and it’s dangerous. There’s another voice too though, and she’s saying, never again. This stops now. Act. Make it different this time. Get help. I don’t know how. I don’t know how to choose when I and the people I love have always been used or tricked or abandoned in the end. But I have to stop this somehow.

Whatever I write seems to trivialise what happened to her

I stopped where I did in my last post as I feel too horrified, confused, guilty and so much tumbling round my mind, that I can’t write more. It feels awful and incomplete to leave it there. I don’t want to trivialise it and feel as if I have done, somehow. I can’t write more right now. I’ll try again in a little while or a couple of days’ time.

Xxx

What can go unseen, again

I’ve just found out that someone close to me has been suffering the most awful abuse.

It has been going on for years.

It has been horrific. Even what I know, which I am sure is only a small part of what has been done to her.

She was already so vulnerable.

She is a kind, generous, caring… good person. Of course, bitterly, the abuser took advantage of these good traits, taking advantage of her desire to give, desire to help, desire to forgive or to give another chance.

I had been sure someone was hurting or pressurising her but I didn’t know who or how. It’s frighteningly astounding what can go unseen.

Xxx

This boat is sinking

This boat is sinking

I feel rubbish that all my posts are negative at the moment. Like I can’t say or do anything good anymore or be thankful when there’s so much I really should be thankful for – am thankful for – but I’ve lost touch with it all.

Every single time there’s going to be a short moment or peace or rest the next disaster happens. That’s been life pretty much since I remember and I don’t even have things that bad. It’s stupid. Stupid because it’s insignificant in the scheme of things; when there’s so much deeper suffering everywhere around; stupid because I’ve got this far so why can’t I carry on.

But I’m running out of energy and mind and hope and everything else.

My fiancé’s been rushed back into hospital again today after months of fight with the doctors and being dismissed and going round in circles. We don’t know what’s going on or what they suspect or why they are doing the tests they are now. I’m useless for him because physically I’m so ill at the moment I have been in bed, unable to get up for more than a few minutes at a time.

All I can see right now is confusion, being overwhelmed, people I love hurting, me letting people down, mentally breaking apart.

We are going under Lord, is it nothing to you, the apostles cried out to Jesus as the boat was overwhelmed with the waves. I don’t know how much more storm we can stand right now. Where are you, Lord Jesus?

Xxx

Losing Lily

TRIGGER WARNING for discussion of suicide, of deaths of people suffering mental health conditions, and of failings in mental health care. If you are in mental distress, caution is advised in reading this post.

A NOTE: This post mentions anonymously the death of a person who had recently left the care of a service I worked in. There was an investigation into the circumstances of the person’s death and the investigation has now concluded. I want to make clear that this post discusses solely my experience from my point of view and my knowledge of the situation, my thoughts and feelings. It does not reflect the position of the service I worked in, or of any other person or team involved in the person’s care.

During the time I worked in a specialist community and inpatient mental health service 7 or 8 years ago, two of our patients died. One lady had moved away to a different part of the country so hadn’t been in our service for a couple of years when she tragically died from an overdose. The other lady had just left our inpatient ward (as far as I know against doctors’ advice but assessed as having capacity to make her own decision in this regard) and gone to live independently, but deteriorated rapidly within weeks and died 4 months later. I’ll call her Lily*.

At any one time we were working with several other patients in my eyes dangerously close to death – because of their drive to harm themselves (by overdose and substance use and so on), because of their suicidal intentions, and/or because their organs were so damaged physically by the effects of their mental health conditions (starvation and other eating disorder or self-neglect symptoms leading to heart failure or diabetic coma, for example).

We were working constantly short staffed, physically and mentally unwell ourselves because of the workload and emotions and conflicts and fear of making mistakes, within constraints of time and policy that often felt out of our hands, trying to provide a service fair and the best for everyone, but knowing we could not give enough.

Lily has never left me. She’s come to my mind every week or so since the winter she died. I was a secretary, not a clinician. I didn’t know Lily as much as I got to know some of our other patients. She was intelligent and wanted to do well and was very driven for her goals. She made close friendships with a couple of people on the ward. Yet, she really needed love which I think she often didn’t find where she may have most expected it. She really did start to get better but something very painful remained impossible to reach. Sometimes I wonder if she was hurting so much she’d had enough. If everything was so locked in and disconnected from the people she needed and wanted to trust, that in her pain it felt like time to go – if she didn’t choose exactly when but she did know she’d quietly slip away.

We didn’t reach her. Even as she got a little better, we couldn’t reach through her pain. We didn’t catch her. We didn’t keep her safe when she was slipping. We lost her.

There was an investigation – many investigations – after Lily’s death. The final investigation ruled that the harm she suffered, and her death, were avoidable. I just now read the start of the report of the last investigation and horror and panic and confusion took over. The room swayed and spun and I couldn’t breathe. I’m still freezing cold.

Her life is on my hands. Not mine alone, and not the service I worked in alone because several other services were involved – but I was there.

Of course we had not wished to reject her or abandon her or disown her or her care. One of the worst things is that a lot of what was judged harmful in the report, were either actions in line with procedures we were taught to follow to give safe and fair and consistent care to every patient in the service, or matters that within the constraints we faced, we could not personally control. But whichever, it wasn’t right or safe for Lily. Consistency and guidelines and constraints are one thing but every individual patient is in very individual circumstances at very individual risk. Procedure under huge constraints imposed from outside, doesn’t make account of that.

What do we do when the steps that were supposed to have been good or safest or standard, or following established guidelines, or the best we could give, or taken in faith in the decisions of those we work for and trust, were actually steps that led to a death?

Personally, what should I have done and what do I do now? My heart is screaming at me, you did not speak up, you did not speak when you had concerns at what you heard, you did not act, you did not follow your gut – you followed instructions instead, and you know this wasn’t the only time.

Good intentions or having tried to follow what was supposed to be good enough, or even best, count for nothing now.

I’m reminded of my mother and her care and deterioration; how we were locked in an agonising cycle of her discharge, the same crises repeating, her deterioration and readmission, worse and worse every time, all of us knowing what would happen but all held powerless by legislation that didn’t allow us to put in place a few simple steps that would have kept her safe. Ultimately an adult judged to have capacity to make a decision is allowed to make a decision that will harm herself, allowed to cut herself off from sources of help, allowed to deceive everyone who wants to help. Even when those decisions and actions are the work of a delusion founded in deep-rooted, severe psychosis. My mother couldn’t be more different from Lily but I see similarities in how the hands of those who wanted to help were rendered powerless.

In my head when Lily stares at me, slowly fading, I don’t know what to say, and everything I should have said back then echoes around me.

(*not her real name. Again please note that the opinions and thoughts and experiences mentioned in this article are mine alone.)

Ginny xxx

How do you love someone who is hurting his/herself when it feels you can only watch?

WARNING: this post mentions self-harm and suicide and the point of view of carers of people who are struggling.

How do you love someone who is slowly hurting his/herself – and you wonder if actually, they’re taking their life gradually – when it feels like you can only watch?

I don’t mean how do you feel love. That’s not in question. It’s your love that aches and burns and cries inside you.

But how do you give love?

When it seems you can only watch. Watch, wish, long, weep, beg, scream, shake (you – and them?), speak but only shout into the distance, only shout up against a rubber wall that bounces your words of concern and pain and fear and help and whatever it may be right back at your heart – where they metaphorically stab you and mock you with their futility.

And the love you want to give is lost somewhere.

Your loved one get relentlessly weaker with irresistible self-consuming power. And you are powerless. Love does not force or fight and does not demand to control another person’s choices. Love can not force another person to choose the healing of their body or to choose life. The pain-and-longing part of your heart, when you love someone who’s breaking, might for a time wish it could force it, but the very centre of love knows really that it cannot be forced.

And then you cry.

Even if you cannot and do not want to make them choose, you wish you could at least penetrate the rubber wall, so that love could be heard for a little while.

****

I’m in this situation right now, actually with two people dear to me, and I don’t know how to give love.

Ginny xxx

So far beyond the limit

I am so stressed and strained beyond the limit. I’m trying to care for my fiancé. I can’t. He’s yet again been discharged from A&E, this time with DVT having been told he could have a pulmonary embolism at any time. No plan in place. Vascular problems, tumour, hernia, unidentified lump in his stomach, knee operations, diabetes, hips going to need replacing… how much more, how much longer Lord? Why? I’m screaming and crying inside. How much worse he must be feeling. Again and again after every emergency and discharge we are no further forward. All the risk and pressure falls right back on us. I can’t do it. I’ve been overloaded for weeks or months. Way beyond the breaking point. I need it to stop. Already I’m drinking with my medication to try to get knocked out. I cannot cope with yet more emotion and pressure. Cutting, bingeing, purging, everything is worse. I have no mental health support now, nor does he, so what can I do? Time has slowed down. I’m hearing things. I need it to stop. Please God, I want to say I know you will answer and not turn away from us forever. But I can’t see You or hear You or feel You. It’s been a long time that way. Xx

Please plan your crisis 24 hours in advance…?!

WARNING – discussion of suicide, suicidal thoughts, emergency services

Am I expecting too much? I don’t think I am. Yet again I and my friend are being bounced around from service to service when he/we are most in need and so many opportunities for giving help missed. But I’ve certainly been made to feel I am asking too much and am a nasty person and more importantly, yet again my friend is left in avoidable danger.

In my local area, there is a specialist phone line for people in a mental health crisis, accessible via 111. This is a pilot, I believe, which may be rolled out in the rest of the country. According to information published about this crisis line, it is for patients, family, carers, friends and professionals, you can get an assessment of your needs, help, advice and visits, it is available 24/7, every day of the year. It is supposed to help you get more specialist help more quickly than if you have to go to A&E.

I phoned this line today because my friend is suicidal and today is a very “risky” day for him. He has specific plans and whilst there does seem to be a part of him that wants to keep going and not end it today, and I think it’s possible he will get through, I’m very worried about him. He was promised to get help from the crisis home treatment team, but he had one phonecall in which they told him to phone services if he felt worse. They have not assessed him or visited. The community service he was seeing haven’t put anything in place.

I wanted to get advice what to do and how to help my friend. I wanted to raise the alarm that he hadn’t had the agreed support and I was apparently the only person who is going to be with him today. I needed to ask some advice for me on how to cope because I’m getting very near another complete breakdown myself. I don’t know how to avoid me losing it and flipping out again when I want to be helping him.

So I phoned this line. First I was told nobody was available but brief details were taken and I was told I’d be phoned back in a few minutes. 1 hour 20 minutes later, having heard nothing, I phoned again. There was no record of my previous call. “You didn’t speak to me before, how would I know the details?” asked the operator. I went through everything again (painstakingly  spelling every name and number about 6 times…) I was told that I had not been told I would be called back today. Er, yes I was, I was told I would be called back in a few minutes. “Oh no, we have 24 hours to respond.”

But we’re talking about someone potentially about to end their life here. Don’t you think that might necessitate an urgent, even immediate, response?! Isn’t this a crisis line?!

They made no assessment of the situation, would not listen when I tried to tell them the home treatment team input had not been delivered as agreed, gave no advice except for if he attempts to end his life, call an ambulance. What about any support that might stop him getting to that point? What about any professionals putting help in place? At the very least, any advice to me? At the moment I seem to be the only person doing anything today to keep him safe. I have no training, I do not know how to help him, I am ill myself and close to breaking point. I am terrified what is going to happen and whether he’ll still be here in the morning.

I tried to impress the urgency of the situation and that a call at some point within the next 24 hours was not soon enough seeing as he planned to end his life today. The so called crisis line told me that I simply had to calm down, that I had to realise they have plenty of other referrals to deal with, that they are very busy and it is not very nice for me to suggest they aren’t doing anything (not sure how I did that?), and when I insisted on speaking to a manager she continously talked over me and threatened to end the call. I was told that they had told me about plenty of other ways to get support. They had not suggested one single thing.

I would expect more from a crisis line. I would expect immediate response when someone is suicidal. How can it possibly be okay for them to say, sorry we’re too busy? I would expect the promises in their literature about getting assessed, supported and visited by mental health professionals to be fulfilled. There is no mention in the literature that they may do nothing for 24 hours. I would expect professionals to be ensuring my friend’s safety today, not me. I want to be there for him, I want to listen, be a friend, offer comfort and encouragement. I am happy to stay with him when that helps, as I will today. But I should not be the only one doing something to stop him ending his life. Is it really too much to ask? I don’t think so. He has asked for help and so often been turned away. This has been a pattern for him just as it was for me in my care. If harm comes to him today in my opinion it will have been completely preventable. That is not to blame services for the state he is in, but they have failed to provide support they agreed to, could have and should have.

I don’t know why I keep on having some hope in services that they’ll do what they promise. I’ve had enough demonstrations to the contrary. I’ve given up on help for me but I don’t give up so easily for a friend. I suppose it’s natural to have some trust in those we believe are there to help and protect us and that instinct doesn’t disappear quickly even when it’s proven wrong. If I could expect the total absence of support it wouldn’t be so distressing. I’m not looking for sympathy though it probably comes over that way. Just very angry, bitter, lost and scared.

Ginny xxx

Hospital

My friend has been admitted now (see my last post).

He was in much more danger than I realised. I’m not putting specifics to keep confidentiality and to avoid any unhelpful triggers for readers.  He only told me after we had parted earlier. He didn’t want me to know and be scared. Then he went to A&E but didn’t go in. He was scared. He felt huge guilt too I think. He was confused and distressed and we lost contact and he was walking or lost in the hospital grounds I think. I got there as quickly as I could in a taxi phoning security to search for him. Thanks be to God for Security whose officers tracked his car. Thanks be to God that he did make it into A&E. I still don’t know exactly how.

Again I didn’t want to leave but he really preferred I did as his anxiety about hurting me (which he has never done) was so high. I spoke with the nurses and we all agreed is best for me to come back in the morning. He’s being cared for…he’ll be on a drip…he’s not alone…

I’m scared. He was so weak and drowsy and in and out of consciousness / awareness.

I’m hurting. Shaky. Scared. Exhausted. I don’t know what to do with all I’m feeling for him and the overload in my mind and chest. Hurts to breathe.

I know I have to accept right now I can’t do anything. The doctors caring for him can do something. God can do… more than something. Still I feel so horrible for everything I can’t do and all the good I see in him where he only sees what he calls poison.

I place him in your hands dear Lord Jesus. Hold him please tonight. Whatever happens now.

Ginny xxx