Category: Caring and Carers

I want to make changes in this blog

I want to make changes in this blog

I want to make some changes to how I write this blog.

A lot of everyday life feels @&)!%*€ awful at the moment. My husband has cancer and is having major stomach surgery next month. He has 3 other operations due and that’s assuming there aren’t complications of the March surgery. It has been horrendous since November trying to sort out our state Benefits and just when it seemed it was sorted, I was told I had to have a reassessment of my disabilities for one of my Benefits and had to complete a 25 page form and send around another 20 pages of evidence in with it. I have a face to face assessment 9 days before my husband’s surgery. This brings with it the worry my Benefits will be stopped or reduced if they decide against me. My disabilities are all worse than when I was last assessed but you hear nothing but horror stories about Benefits assessments. Our money could get cut off whilst my husband is in ICU after the operation. We have other financial worries as well. We have had a whole series of let downs from people that should be helping us, including doctors and nurses and support workers. We’ve been brushed aside and labelled as worriers or nutcases because we have mental health problems – when in actuality my husband has multiple tumours in his body. When I have severely painful disc damage and degeneration in my spine. We have complex and deteriorating family relationships to work through and little support.

I could go on.

I want to scream. I don’t know if I’m crumbling or exploding but I feel I’m on the brink of going to pieces. I don’t know when I last slept through the night. The nasty angry dangerous version of me is getting out more and more as dissociation takes over. Right when I need to help my husband.

I need to make this blog different. I have become more and more sporadic in posting. When I’ve posted at all it has been sad and angry, as the result of an overflow of emotion or a need for an outlet of some kind. Having that “let out” is important but I don’t want it to be all this blog is. When I started writing I wanted to be able to express myself and also to be honest about what living through mental and physical health conditions is like. A lot of that is difficult, but there are good times and strengths too, and I want to reflect that. I want to reflect learning and gratitude too. I want to try to explore different aspects of my conditions and what helps. I want to post regularly, with more structure.

I need to make plans for how to change.

Ginny xxx

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

I told him what I see. He explained it away.

I told my dad today about my concerns over how he’s being treated by my step mum. I told him I’m worried for him. I told him about how she’s treating me and other people in the family. He denied it is happening. He denied any possibility that he may be being treated very badly and that he may not realise because he has had so many previous years of emotional abuse. He says there is no problem for him. He put my experience and my concerns for him down to the fact that I had harmful experiences when I was abused when I was younger and that means I perceive interactions now as a repeat of what was done to me back then when actually nothing is wrong / there is no similarity, and that my “world view” may not be a good one because of what was done to me then. Basically I am wrong, I am the problem, and there is nothing wrong at all in how my step mum behaves to him or me or others. He denied events that have happened, denied things that have been said, and bought totally into my step mum’s view of me as a failure, a let down, spoiled, the problem, unwelcome, at fault… he even upheld her emotional attacks on me as being fine and my feelings essentially as being because I have problems.

It was pretty much what I had expected would happen but he had a much deeper rooted explanation than I was ready for, for why things are not really as I have experienced them to be. At least he did not deny my experience. But he explained it away in such a manner that it secures my step mum’s casting of me as the difficulty and her as the perfect spouse and mother figure.

My concern was primarily for him and how he is being treated but she has cast me in such a role that no concern I raise, no event I try to discuss will have weight with him.

It is rather as my mother did, drawing my dad in to such an extent that he would not hear when I told him multiple times about her emotional, physical and sexual abuse. She could invasively abuse me pretty much in his presence, emotionally taunt and threaten me for hours on end partly in his presence. At the time he supported her, joined her in her emotional attacks on me, often continuing himself afterwards; somehow he ignored her physical actions to me… and then later when at long last he listened to me (when I was an adult, hospitalised) he claimed no memory of any of the events. He was that drawn into her world.

His blindness now both traps me again and leaves me alone. Traps me where I cannot reach him to warn him what is happening as he just won’t hear me. Leaves me alone because it feels universally declared that I’m mad, I’m wrong, I’m the problem; what I’m experiencing and seeing isn’t real. It feels like all the power has been handed back to my step mum. I feel as I did when I was a child; alone and my sense of reality torn to shreds.

Xxx

If he doesn’t realise he’s being abused, what do I do?

I’ve gone too long not saying anything. I need to talk to my dad about what my step mother is doing to him and to me.

What happened to my other family member, who was being abused for months with no-one’s knowledge, has made it clearer to me that I need to speak out. I know what can go under the radar; how for those closely involved in the abuser’s world, it can be impossible to see what is happening. And look what went under the radar when I was abused as a child. I’m trying to separate myself from my anger about all the times I “should” have been helped. Right now it just shows me how important it is to not let it go by when you see abuse happening. Another event that has made it clearer to me that I need to speak out is that third parties have commented on my step mum’s behaviour and how my dad is and how another vulnerable member of the family is treated – this was not based on what I told them but on what they themselves observed. It isn’t just me being crazy, or misinterpreting because I’m too sensitive because of my early life experiences, or imagining it, or because I subconsciously resent my step mother so somehow want bad towards her. It’s really happening. Then on top of this, my social worker and a psychologist I have been seeing at the pain clinic have both said to me that for my wellbeing the only course of action may be to restrict contact with my step mother. This is on the basis of the limited number of incidents I’ve described to them from the past 7 years or longer.

It’s really happening. It’s sustained (worsened actually) over time. My dad has no idea or if he does see it wants or needs to ignore it (because he thinks it’s normal? Because he thinks he deserves it? Because he doesn’t know what to do?). My step mum has been able to convince other members of the family that she is perfect, blameless, that she is the one being mistreated, that I am the one mistreating her or causing the problems, that I am the one doing wrong to my dad, that another person in the family is again a cause of problems and to be ostracised (and she has orchestrated this ostracisation), when actually they are vulnerable and desperately in need of help.

As well as being angry with my step mum, I am angry with my dad. This is totally wrong. Misplaced. I feel furious anger at my step mother’s abuse going on unseen and unchecked, even when it is done in plain sight. Why do I have any anger towards my dad? My anger should be only towards her, and the immense control she exerts and deception she weaves, which allows her behaviour to be unacknowledged, unnoticed or excused. That’s all part of her abusing. Does abusers’ behaviour somehow get you angry with the wrong people too? Or is it because all the feelings are brought up from when I was a child needing my dad to help me, trying to tell him what she was doing? Because I can’t really understand why he couldn’t see what my mother was doing to me and what she was involving him in back then? He was deceived by her but he also did wrong, but that’s another story.

However, I am left with the fact that again he’s in a relationship where he and others are being abused, and either he can’t see that it’s happening or he can’t / won’t take action. I don’t want that to repeat for him, for anyone else I care about or for me. It went on 30 years in his relationship with my mother. I don’t want him to go through more years of abuse, never taking action or only taking action when much more has been lost. He is fit but not so young anymore and if he were only to realise what’s happening when he’s elderly, it would seem all the sadder.

I can’t force my dad to take action. I can’t pull him free from the situation. What I can do now, which I could not do as a child, is try to openly tell him what I’ve observed and what I’m worried about. I can also tell him how she behaves to me. It’s likely he won’t believe me or will refuse to acknowledge it. This is what has happened when I’ve told him previously what my step mum has been doing and it’s what happened when I told him what my mother was doing when I was a child. But now I’m not a child. My safety and my world do not depend on him believing and saving me. Sadly, his safety does depend on him acknowledging what is happening to him.

How do I help him do this? How do I raise what is happening without him being so hurt and angry that I’m saying it that there is no chance he will be able to reflect on how she’s treating him and how he’s feeling? How do I do it without him stopping talking to me at all? Then there would be no chance I can help him. If he just utterly blanks it all and changes the subject, or leaves (both have happened before), what then?

Whilst he is not isolated as we were when I was growing up, in a remote village in a shut up house, nobody allowed in, no relationships allowed outside the home, he is isolated in a different way. Apart from his work, the world he’s in is still hers. Her part of the world, her house then the house she chose, her choice of leisure activities, her friends. Almost everyone he has contact with outside his work is her world. Potentially controlled by her. I can think of nothing he does separate from her, apart from his work. I can’t think of any friend he has contact with who is not first hers. No way he spends any leisure time away from her, except for the rare occasions she goes away on holiday without him for a couple of days, or the rarer occasions he comes to see me without her. It seems there would be nothing and no-one to help him move away from her control.

This is worse than I thought.

Xxx

In Athens

In Athens

I thought I’d share with you some of the beautiful things we’ve seen and experienced in Athens so far.

There are countless interesting churches. In the rear of this picture is the main Greek Orthodox metropolitan cathedral, The Cathedral of the Annunciation, recently refurbished, whilst in the foreground is a centuries-old church known as Little Metropolitan, really St Eleftherios Church (which we haven’t managed to go into yet as it is often shut, unusually for this area). On our last trip here my fiancé and I prayed outside under the moonlight, giving thanks for each other and asking God’s guidance during our engagement.

This past Sunday we were able to go to Mass at the Catholic Cathedral of St Dionysus where we found this very peaceful portrayal of St Joseph and the Christ Child.

There are several people we need to buy gifts for and also we are going to bring some non-perishable Greek foods home to form part of the meal after our wedding. So we went through the Monastiriki which is a set of narrow, winding streets packed with little open-fronted shops selling jewellery, leather bags and sandals, T-shirts, traditional dresses and embroidered shirts, icons, crosses, ornately covered Bibles, food (olives, baklava, Turkish delight, sweets, herbs, stuffed vine leaves, olive oil), drinks (lots and lots of Ouzo and Metaxa brandy miniatures), replicas of Ancient Greek artefacts and statues, toys, and countless souvenirs (some tackier than others – apparently you can fit a picture of the Parthenon onto everything from a teacup to a wooden replica of a certain part of the male anatomy!!).

It’s worth looking up, as well as at the shop fronts, because there are often pretty balconies above you and twisting grapevines where doves sometimes sit.

With new sensory experiences around all day long, I have needed to balance busy hours with down time, and we are so fortunate to have a pool at the hotel to cool down or rest beside.

My fiancé has been utterly impressively amazing at getting me and my wheelchair around – not at all easy when the streets are cobbled and up / downhill. I’ve been really concerned he will wear himself out caring for me. I walk where I possibly can but it is not much at all. My fiancé’s love is a deep blessing I never could have imagined existing. I want to help him rest and care for his own needs too.

I will post another Greece update with more photos soon.

Ginny 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

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