acarerseyes

Through the eyes of a carer for someone with a mental illness


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Its the little things

Well today was another big day really, Chris and I went to hospital for babies anatomy scan to see our growing baby and make sure all was well. I am 23 weeks and babies fine, was wiggling about happily. As with my previous pregnancies baby never plays ball and had it’s head right down low in my pelvis so they were having problems with seeing the brain and babies face, after some gentle manipulation and tipping me onto my side we convinced baby to let us have a peek and all is well. It’s slowly starting to sink in now as well.

It is little things like Chris coming with me to my scan today that mean the most to me. I am sure most people who are in the role of a carer feel the same. We appreciate the little things in life because more often than not we know exactly how big it is for the person we care for to do some of the things others take for granted. I was in counselling earlier today and we were discussing the fact that I hold on to the little things Chris does and I collect them into a box in my head where they are stored as memories, when things get rough or rocky I pull the box out and take a look at all the memories I have gathered in my head from all the years we have been together and I hold onto that. It helps me to remember that we have got through the bad times before and we can again, and when we are in better times I know he will always give me another reason to add to my box of little memories stored in my head. I am going to share with you a few of the memories that are held there like our first Christmas together and we went Ice skating in York outside and it was snowing, Chris had never been before but he was better than me, I was falling all over the place and Zoom, he was off. Also after I gave birth to Emily, my mum stayed with us for a week which was lovely, but I got really upset after she had gone home, Chris didn’t have to ask any questions, he put his arms around me and cuddled me, told me he would always look after us and he didn’t let go, his arms make me feel safe. I also hold onto when the hospital sent me home when I was in labour with Emily because I ‘wasn’t in labour’ I got through the front door of our house and I was pushing, he called labour and delivery who said they would call an ambulance and send  a midwife. Ambulance control rang Chris and told him what to do, he did looked scared, but he reassured me and he didn’t leave my side until he had to let the ambulance crew in, even then I wasn’t alone as such as he had passed the phone to me so I was talking to ambulance control. I haven’t forgotten the times he has sent me flowers, bought me chocolates, after what happened last year, explained in the blog ‘Some things can be prevented’ and he ended up in hospital, he organised along with the help of his dad for flowers to be delivered to our address, I was so shocked to receive flowers, a balloon and a teddy. He has sat up with me while I’ve been ill, he has helped me when I have felt down, his thank you’s say more than a thousand words and he doesn’t need to tell me he loves me all the time because he makes it known.

Everyone gets wrapped up in the bad things and boy there have been a lot of those but today something came out of my mouth that is very true, if I wrote a list of good/positive/happy memories and a list of bad/scary/horrific memories my lists would probably be more or less equal. Just because the last couple of years have been awful overall doesn’t mean we haven’t had happier times, it doesn’t mean the year before that wasn’t a lot better and more of the happy memories were made there than now. It’s those I need to hold onto, those I hold in the box and those I need to remember to think of when times are tough. No one would turn around to someone who was caring for someone with Cancer/MS/Arthritis or any other physical condition and say ‘why are you looking after them, I mean what do they give you in return?’ so don’t say that to me just because he has a mental illness, he didn’t ask for it like people with physical conditions don’t ask for it either. It can happen to any of us.

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Following on from ‘if you leave, we will call the police’

I just thought I would point out that my post titled ‘if you leave, we will call the police’ I am not referring to the times Chris has attended A&E because he has self harmed. I am talking about the times when he has taken over 50 different tablets and isn’t in a very good way either mentally or physically. Of course there has been times he has self harmed and needed medical attention and made the unwise decision to leave and the staff and myself included have been happy to allow him to take that option because there is no reason to say otherwise.

I also want to make it clear that I absolutely HATE being in that position, where for his own safety I do not want him leaving and by no means is it a decision I take lightly. He knows this and when he’s been well we have discussed the fact I would request a Mental health act assessment if I deemed it necessary because not only do I want him to get through the tough times and make it out the other side, so does he. If that means he spends awhile detained in hospital he rather that that loose his life… that is words out of his own mouth.

I have walked out of a psychiatric unit many times having just left him there in bits, I’m not going to lie; I cried all the way home on many occasions. It’s one of the hardest things I have done, to me it felt like I was walking away from him, leaving him alone and scared but I knew I couldn’t do it anymore, I couldn’t keep him safe and they could. In a way I felt a failure, like I had let him down when actually I was doing what was best for him and what he needed to get well again. Doesn’t make doing it any easier though. There is also a huge element of relief as well though that I don’t need to sit up all night and function again normally the next day, I don’t need to be on constant guard of medication, house keys, money etc that someone else was there to help him and allow me the time to recover, get my energy back and sleep properly again. I don’t doubt what I have done because like I have said before and I will say again, the ‘Thank you Sarah for helping me, for never giving up and walking away’ is the biggest thing I could hear, and I cannot put into words how much hearing that means to me.

A well Chris is a Chris that wants to live his life, it’s only when he is very unwell does his brain make him believe he ought to die. I wont let Chris die when I know that isnt what he wants. I really hope this makes sense.


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Poems I wrote in 2009

I was having a look through files on my computer this morning and came across a couple of poems I wrote for Chris back in 2009. I had completely forgot about them to be honest, as I have written quite a few poems over the years. In all honesty I doubt he even remembers we have them either! However it was nice looking back on them, so I thought I would share them with you, because after all there is more to me than just a carer, I am his partner.

I will

I will be there when there is no one else for you
I will be there for as long as the sky is blue
I will never walk away when you’re in need
I will comfort you like a friend indeed

I will walk with you when times are rough
I will make your life a little less tough
I will cuddle you every single day
I will make your life complete in every way

I will walk the oceans out at sea
I will promise you you’ve a friend in me
I will touch your hand just so you know
I will be there everywhere you go

I will hold you in my heart forever
I will always want us two together
I will be there till the day I die
Then I will look down on you from the Sky!

There isnt anyone is this world!

There isn’t anyone in this world
Who is as kind as you
Would do anything for me
Like you always do

You brighten up the room
Just by walking in
Bring a lot of happiness
When life’s a little dim

There isn’t a better father
Or a lover too
Who can makes us feel
As happy as you do

We love you just as much
Just don’t always say
I hope that we all show it
Each and every day

So thank you Chris so much
Just for being there
To show us every day
Just how much you care


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‘If you leave, we will call the Police’

One of my biggest problems regarding Chris’ care is the Acute Trust practically ignoring his mental health and the Mental Health trust refusing to see to him until he’s declared medically fit, the latter I can understand. So what does this mean for Chris? Well after attending A&E for an overdose, for example, he has to been looked after medically first and foremost, and in the case of an overdose it normally requires so many hours under observation at the very least. Now you try telling Chris, who has attempted to take his own life, would rather people just left him alone and doesn’t really want the help to stay put and allow them to do their jobs, it’s not easy. Most of the time there comes a point when agitation and thoughts are too much and Chris starts to get his things and leave. More often than not when I myself approach staff and explain that Chris is leaving and I’m concerned for his safety and wellbeing the reply is ‘if he leaves, we will phone the police’. Now in my eyes, this isn’t good enough, for a start what is to stop him walking out the hospital to the main road and under a car? He could have done that before they have so much as dialled the number for the Police! Also every time A&E/the ward/hospital have carried out their action and called the cops, Chris is always home, there for, what exactly are the Police meant to do? They can only ask him to go back.

There has been two exceptions to this, once when he was in Coronary Care and he was going to leave I spoke to the Dr looking after him and he said if he tries to leave we will section him and security would be asked to sit with him and follow him everywhere. The other was a lovely doctor in A&E who had security around to make sure he didn’t leave. Apart from those two occasions it’s always them mentioning and then involving the Police. Now if they deem him unwell enough to need to be dragged back by Police officers it’s their job and a duty of care to Chris to stop him leaving in the first place with the power they have to do that!

As part of yesterday’s meeting I bought this up with the Mental Health trust and asked them what the Acute Trusts policy is around Mental health, and was rather worried they didn’t know themselves and wouldn’t be surprised if the Acute Trust didn’t even have one. However, I have now asked to see what the Acute trusts policy is around Mental health to see what, if anything is meant to happen, and then I am hoping to make my feelings known to the Acute trust that I think what happens at the moment is unacceptable and dangerous. I had a consultant Psychiatrist agreeing that it would be completely inappropriate to let someone who had overdosed leave the hospital alone on the basis ‘we will call the police to bring them back’ he said they shouldn’t be allowed to leave until their mental health had been assessed by the appropriate person.

This is something I am currently looking into and hope to have some answers soon. I will keep you updated on how this goes, what I manage to find out and if they are willing to listen and perhaps encourage a change on how it currently appears to stand.


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Complaint Meeting

Yesterday both Chris and I attended a meeting about the complaint I made last September regarding Chris’ care after an overdose. I am not going to go into this in great depth because its ongoing at the moment and will be far easier to write about it all when it’s over. I was very concerned how Chris was going to handle it and on Tuesday he was showing a few worrying signs due to anxiety but he was determined still to come with me. Although the outcome was positive, we got an apology, they admitted certain things had gone wrong and didn’t for one moment give us the impression they weren’t listening and they weren’t trying to help, and Chris could see all that and agreed, it still brought everything back to him from a very difficult time in his life.

Last night he was very suicidal, and wanting to harm himself, we discussed me locking all the medication away again and I would keep the key on me, which is what I did. He was very distressed, but after the emotion of the day, we were both prepared for how bad he could feel, so it wasn’t so much of a shock to either of us. I am very proud he came with me in the first place and managed to sit in quite an intimidating room without running away from it. Luckily he always finds himself more tired after his depot injection, which he had, had yesterday morning so this helped him sleep along with his other medication. Although I still have a close eye on him and the key to the safe he seems better than he was last night, I don’t really want to jinx it though because it can change so quickly.

With regards to where we are up to with the complaint, I am waiting for the final report to be written up, though I am happy they have fully investigated what happened and I have answers and also the action they will take to improve what they do and make sure it doesn’t happen again. It’s slightly more complicated because mental health is one trust and medical wards etc is a different trust. He overdosed so started in one trust and then was handed over to the psychiatrists which are under another trust. I hope this is making sense; this however has made it clear I need to speak with the medical trust about their mental health policy and more importantly find out what it is and how they are meant to implement it. Will blog all these things in the future with what happened and then the outcome.


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Some things can be prevented.

There has been a lot of talk on twitter lately about the false opinion people seem to have that people with a mental illness are immediately violent or criminal. This isn’t true, very few are, but when your brain is seriously unwell, especially for things like psychosis, things can happen that the person has very little to no control over. It keeps reminding me of a situation that happened ages ago now.

Last year, without any warning and in a period of time Chris was suffering from Psychosis he attacked me. I say it was him, it was his body but it wasn’t his mind, I wasn’t even looking into his eyes, I was looking into eyes I didn’t recognise, because he wasn’t behind them. Unless you have seen this yourself you will probably find it very hard to understand what I mean. It was completely unprovoked, and at a time Chris was seriously unwell.

One Sunday I had been sitting down with him in the living room, he had been complaining of bugs crawling under his skin and taken an overdose a few days before and had been hearing voices. The whole of the previous week I had begged several health professionals to section him because I was worried sick about his mental wellbeing and they hadn’t listened to me, even our GP. He had been lying on the sofa for awhile, his arms covered with cuts, when he got up all of a sudden and started saying really random things before going into the kitchen and smashing it up, you couldn’t see the floor by the time he had finished, he came into the living room where I was still sitting and started to smash that up as well. I begged him to stop and that he was ok and would he sit down, he threw something at me, I have no idea what it was, it missed thank goodness, then he returned to the kitchen. I stayed where I was and he came back into the living room and held me against the back of the sofa, with something to my neck, all I could think it was, was a knife. I begged him to let me go, not to hurt me, he let me go and walked away, it was a screwdriver in his hand, he dropped it, grabbed the car keys and sped off.

I locked the door, and dialled 999, why? Not because of what he had done to me, that was the least of my worries, but because I was worried sick about what he was about to do to himself. Two hours later the Police showed up, I gave them all the information, I answered their 27 domestic violence questions or whatever they were and told them I was worried sick about him, gave them all the places he goes when he’s contemplating suicide etc. They took his registration number and circulated it so that any ANPR would pick it up and officers were aware. They then left.

Awhile later I received a phone call from an officer who had found him ‘safe and well’ but Chris was refusing to talk to me and they were going to get him checked over at A&E. I thanked the officer and went about sorting the house. I thought that perhaps finally they would see how unwell Chris was, how much he needed help and he would now get it. How wrong was I! I have since found out that the officer took him to A&E an ordinary doctor decided he was fine so the police returned him to his dads. I also found out they had found him at his dads and were about to put the door through when he answered it.

Just a few things to add to this.. Chris hadn’t before that or since laid a finger on me, he’s shy, gentle, kind and very supportive and protective, it was completely out of character, entirely.

Could this have been prevented? Yes it could, if they had listened to me, he was even under the care of the Crisis Team at the time. It didn’t need to happen had they have done their job.

What happened after this? The crisis team visited him at his dads the following morning, he seemed ok to them, and he was still in his own world to his dad. That afternoon Chris had completely broken down, he was suicidal, he couldn’t stop crying, and he was scared because he was struggling to recall the previous day. His dad rang the Crisis team and told them they needed to admit him and he wasn’t taking no for an answer. All afternoon they wouldn’t with the excuse ‘he was fine this morning’ then ‘we don’t have any beds’ then ‘the manager doesn’t agree’ Chris had a doctor’s appointment booked for that afternoon anyway so I agreed to meet him at the doctors and we saw her together. He told her what had happened, what he had done, to this day thinking about the state he was in, the tears pouring from his eyes; he was shaking and visibly very ill, makes me really upset. She said she would ring the Crisis team and ask for him to be admitted as a matter of urgency. She was lovely, Chris returned to his dads were he received a call to attended a psychiatric unit, his dad took him up. He spent two weeks in hospital.

Is he some violent man I should be scared of? Not at all. Am I scared of him? Not in the slightest. He was very ill, he didn’t know what he was doing, I have seen Chris get cross before, of course I have but it was nothing like that and looking back it upsets me because all I can see is this very fragile person that no one would help. That day services hadn’t just let Chris down, by completely ignoring all my concerns they had let me down as well.

 

 


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Bipolar, BPD, big difference in care.

Back in 2009, Chris and I suspected he had Bipolar, before this he just thought he was depressed and that one day he would get himself through it so had left behind all his care in 2007 when we moved to London for a year. However in 2009 thinking it could possibly something along the lines of Bipolar and with how unwell he had been decided it was time to get him to the docs and discuss being referred back to psychiatric services. While he was being passed about from Psychiatric SHO to SHO in 2010 they all agreed Rapid Cycling Bipolar and although his care rather disjointed with seeing so many people he was treated pretty well and they helped as much as they could.

However, one day while Chris and I were seeing his GP and he casually mentioned his BPD diagnoses from 2005, to which I thought ‘what on earth’ yes we then found out that back in 2005 completely unknown to both myself and Chris that he was diagnosed with BPD, but everyone failed to tell him. Now this could have well meant that when we moved to London he would have moved his care to down their knowing he would need it however what you don’t know you can’t do anything about. So when we next saw the psychiatrist we discussed this with them and then they had them both down with a question mark over them.

From the day his BPD diagnoses was used everything changed, the difference in the care he gets now compared to when he was classed Bipolar is huge. Health professionals look at him like he’s a time waster, like he needs to ‘get over his issues’ you name it they have thought it or worse said it! A lot of people are still stuck in the days of ‘BPD can’t be treated and anyone who was more complex or difficult gets put into that group’ where as now it’s supposed to be seen differently. This comes back to being told things like ‘we can’t section someone with a personality disorder’ and ‘I asked if he had a mental illness, not BPD’ both out the mouths of doctors!

The worst part of all this is, they are pretty sure he’s got BPD but they are also pretty sure there is other underlying issues like a mood disorder of some kind as well, and until we have any idea of what is going on properly he is BPD and treated like he’s a pain in the ass. I would just like to point out his social worker and our GP don’t treat him like that in the slightest and are very supportive for they see Chris like I do, for who he is.