Category: Supportive Community

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

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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

Easter crafts – letting the light shine through

We made stained glass window pictures this week at the day centre where I volunteer with elderly people. In a small group we made three pictures – loaves and fish, the Cross and the sun rising above a tomb with the stone rolled away. Here’s the Cross (please excuse the scribbling where I’ve removed anything that could have identified the location; I’m probably being over-cautious but still…):

I made the templates and then we laid them on laminator pages, filled the designs in with tissue papers then added the top sheet and laminated them. This gave them a shiny finish. Once cut out we attached them to window panes to let the light shine through. My inspiration came from a YouTube video of Christian seasonal craft ideas.

It was trickier to do than I’d expected and tested my patience! The tissue paper did not stay in place easily especially when people with limited movement were handling it. Too easily it could be knocked, or the static between the tissue and the laminator sheets pulled pieces out of place. Surprisingly perhaps, all the clients enjoyed it and persevered. It helped that this week everyone seemed curious and wanted to be involved. With clients who often feel depressed or otherwise unwell, this isn’t always the case. This week the clients’ enjoyment encouraged me to keep going even when I thought everything was going to go pear shaped.

Thanks to one of the other staff members we were able to read a bit about how stained glass was and is made and where the colours come from.

We were very happy to do an activity strongly rooted in the hope of Easter. Of course compassion and generosity and love underly everything we do with the clients and we almost always learn, discover and receive blessings as well. However we wanted to do something explicitly exploring God’s gift to us at Easter. In our pictures, each side of the central Cross, the bread and fish represent Jesus’ presence amongst us, His feeding us, His Body given for us 2000 years ago and still on all the altars of the world; the empty tomb and rising sun represent God’s Son Jesus rising from the dead, as He is with us on earth so He is lifting us up to Heaven to be with Him where He is gone. The Cross itself we decorated in bright colours not dark. The Cross is deepest suffering but also and inseparably, our only hope, because there Jesus restored the ruptured relationship between God and man, so that we can now joyfully call Him Heavenly Father. There God’s light shines through to heal our broken hearts.

This Lent time seems to be passing faster and faster for me and I’ve felt I’m grasping at desperate moments to pray between crises, responsibilities, pain and dissociation. It was important to me to have this little time trying to reflect on the Easter promise with those Jesus loves so much, the frail and lonely. Thank you, Lord.

I’m praying for moments of peace throughout your every day.

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

Miaow!

My houseguest would like to say hi:

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So, here I was reading up and planning to have guinea pigs, when this adorable guy arrived. He’s been a regular fixture for many weeks now since he first “dropped in” at the end of last year but I don’t think I’ve introduced him on my blog before.

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He has previously belonged to at least 2 other households in my block. He’s getting on in years for a cat – we think he’s about 10 years old – but he can still cause enough mischief, between naps that is! I started out agreeing to look after him and feed him over a weekend in the winter, when his owners had serious problems and couldn’t look after him. Circumstances were such that they didn’t collect him after the weekend. They didn’t come back for a fortnight and by this time he was growing used to my flat and, I think, to more regular food and playtimes than he’d been getting.

We have come to an arrangement where I am the main person to feed him and look after him but he goes between my flat and is previous / other home. The couple that had him before are still in difficulties and can’t care for him. So it helps us all, I hope.

I love him. He’s surprisingly affectionate. He loves cuddles. He loves playing with his toy mouse. He usually likes being combed. He even “holds hands” tapping me gently with his paw then letting me take it in my hand.

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He is enchanting to watch when he’s napping, curled up so comfortably and trustingly on the seat beside me, or even in my arms, purring softly, then snoring not so softly, body rising and falling with his breath, smiling (yes really), little pink paw pads uncurling as he stretches out from time to time.

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He is bringing me lots of happiness and I love that I can care for him and make him feel safe.

Ginny Xxx

 

Unenchanted April

I have wanted to post but not been able to find what to write. I’m sorry it has been nearly a month. Even this post I started nearly a week ago. I don’t know quite what’s making it so hard to express how I really am.

My friend’s health continued to deteriorate. I was fighting desperately to get him help as the danger he was in increased. Everyone in a position to keep him safe seemed oblivious to tune dangers and I could see how close he was to the edge but with no professional’s help I could not do anything more than what I can as a friend and that is not enough. It’s terrifying to be the only one knowing and believing the risk and I know that sounds like I am very arrogant thinking I know better than the doctors, but time and time again now I’ve known what’s happening or going to happen, the doctors have done nothing, refused even to listen to my concerns, and the thing I’ve known will happen, happens. The toll is greater each time. He has liver damage, blood clots, he’s starving himself, he is barely even drinking anything, there’s much more I wish I could write but it’s too personal to him for me to feel I can share here.

I don’t know how to carry this knowing.

I cannot save him alone. What someone else can give you, or trying to carry on for someone else, will not ultimately be enough to keep you safe or even alive. (I know this from my own darkest times, when I’ve been irretrievably low, hurting myself and planning to end my life, and someone close to me – who didn’t know the half of it – screamed at me, look what everyone is doing for you – why isn’t this enough for you? The answer is a post for another time but I know if he continues it must not be for me, not just for me in any case, so I alone cannot save him.

I can pray. I can try to give comfort. I can try to give compassion. I can try to show I love him and that he’s a good person not as he sees a problem, a burden, someone who frightens people, is bad, is not wanted, is no good. I can try to help him find some ways to build a safe, stable home and life. We can find short times of hope, happiness and laughter together. He has an immense capacity to love others, care for them and about them, to rejoice when they are happy, to fight to help them when they are hurting and share their pain. But none of that can he do towards himself.

He may die. He may end his life. I don’t know how to hold this knowledge and all the feelings that come with it.

****

I have been in crisis myself in the last few weeks and was in hospital for a couple of days. Then I had help from the crisis team at home for a week. When crises come I still flip out and instinctive reactions and thoughts take over along with the hallucinations just as much as they ever did before I had therapy. My “little child” gets out and she really isn’t very nice sometimes. It’s scary. I feel like a failure.

***

I’m realising that my mobility has got a lot worse in the last year. I’m particularly weak physically at the moment. I was diagnosed with POTS a little while ago (a heart, blood pressure and autonomic nervous system disorder). I’ve a lot to learn on how to manage the symptoms. Being very faint, muscle spasms, digestive problems and poor circulation have been hard to deal with this month. I’m now very fortunate to be in touch with a pain clinic at the hospital and there are some good possibilities from what they can offer, so I must be hopeful.

I really will try to post more regularly again and share happier news next time.

God bless you.

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

Descent into emergency

Kyrie eleison. Lord have mercy. Christ have mercy. Help us in our need dear Jesus, please, Lord hear our prayer.

6.45pm

I feel so scared and powerless right now.

My dear friend is in complete crisis. I’m so scared he isn’t going to make it. I don’t want to tell all his business here. That wouldn’t be right. But he’s been through some horrific things and his mind and body is in utter pain. He could die, through what’s happening to him physically and the risk he’s at mentally.

I won’t leave him on his own right now. He’s massively distressed. He’s too scared to go to A&E tonight. I’m trying to insistently but lovingly persuade him to speak to the out of hours services to see if he can get to another place of safety, or to speak with his GP. Please God he is going to see the GP in a short while in an evening clinic they have. Please God we get there. He is letting me stay with him now. He so did not want me to at first but I could see the danger. Please God, please may he still accept my company and please may he get somewhere safe tonight. (There are very concrete reasons I can see he’s at risk but they are not my business to write here.) I’m in his car waiting for him whilst he’s speaking to someone who he felt he had to go see about an issue that came up earlier; I don’t think this is going to help any right now for him but he really felt the need to do it and I didn’t want to force him not to. Please God please may he come back soon.

I’m barely hanging on myself. I’ve been losing the grip the past week especially. Dissociating, losing time, self harming, huge panic attacks and flashbacks including physical sensations.

A neighbour has started being aggressive and verbally abusive. He’s been pressing me for money for months. He’s been doing the same to other vulnerable people on the estate. He’s been citing endless disastrous circumstances but it’s now coming to light that something else is going on. I’ve sensed things wrong for a while but now it’s becoming clear what he’s telling me does not add up and isn’t the whole story to say the least. It’s getting out of control. I believed and wanted to help him to get help, supported him with getting referred for a support worker and foodbanks. Now it seems nothing is true. I’m afraid for a vulnerable person he lives with. I’m going to have to contact the police I think.

8.40pm

We have spoken to the doctor and are waiting to hear if my friend can get into a safe place with support. There is no space at the moment. Even if he does it is only open til 1am. We’ve gone back and forth with the doctor and out of hours services. All doing all they can but of course there are these limits… and in the end I don’t know who can keep him safe when he’s as far down as he is now, hating himself and hurting himself so much and so afraid of everyone. I’m ripping apart inside. I’ve been where he is, or similar. I know perhaps I cannot do enough. I care for him deeply as a friend. I wish I could rescue him but know despite all the love I can give perhaps I cannot.

9.15pm

I didn’t want to leave him. He has gone to the hospital. The doctor was worried for me and said I should not go with him. He insisted I not go with him. He promised not to hurt himself and that he’s going there. I couldn’t do anything else especially since it’s his car and I can’t drive. We are keeping in touch by text. I believe his promise but I know from being there myself that when you are going to end it, that blackness and blank terror and loss and self revulsion and pain overrides everything, no matter how firm and true and faithful your promises. The doctor told me to go home because she was worried for me but I so did not want to leave him. I cannot save him in the end but I can be there.

9.25pm

He is at A&E now. The situation is far worse even than I knew but thanks be to God he is there. Thanks be to God he’s going to be taken care of…dear Lord I pray he’s met with compassion there as well as getting the physical medical treatment he needs. Please Lord, please can they still help him. Please enfold Him in your love, whatever comes now, if it’s the end or not, please show us Your saving help. In the darkness of pain and not knowing, danger, even death, You are our certain hope and Saviour.

Mother Mary, St Joseph, please offer to your Son in the way most pleasing to Him, everything I offer, everything I do, everything I pray….

Ginny xxx