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


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My observation of three psychiatric wards while visiting.

Sometimes I am like a fly on the wall, well hopefully much prettier and a little more noticeable, when visiting Chris in hospital, whether it is psychiatric wards or general wards. I am not there to do a ‘job’ and I am not the patient, so I get to see things from an outsider’s point of view which I think many people forget. It is while making visits to different psychiatric wards, in different areas with different layouts and staff that I have noticed an array of differences, some of these will be just circumstantial, like visiting a ward that has more acutely unwell people in it than perhaps at a time when it is quieter. Despite all these wards being in the same trust, there really is a big difference in the care. Obviously this is all based on my opinion and what I have seen whilst in and out.

One of the most noticeable things is environment, I have been to a ward through two heavy duty metal doors on the first floor with a long corridor, multiple bedrooms leading off it, two TV lounges dotted amongst them and the nurses office plonked in the middle. The corridor doesn’t see daylight, it is artificially lit and quite frankly depressing despite the obvious paintings and decoration to try and brighten it up a little. The only access to outside space is every two hours for smoke break down a set of stairs to an enclosed little garden around the back.  It is a mixed sex ward, patients have their own bedrooms and shower/toilet room as well and they have recently added a female only lounge.

The other ward I have visited, also on the first floor through two wooden doors with nice little windows in them, has a more communal feel, you walk into a huge communal area, with tables and chair, a comfy area with television, the nurses office overlooks it all and more importantly windows letting in sunlight, none of this artificial light business. It is mixed sex but unlike the last hospital I described it has female bedrooms off one way and male bedrooms off the other, the females also have a female only lounge. The only access outside is again for a smoke break and then patients are taken down to a square garden area in the middle of the building. This has a slightly nicer and less isolating feel to it than the first one.

Finally the last hospital ward was set on the ground floor through a single wooden door had a mixture of artificial light and daylight coming into the corridor, it was another mixed sex ward with bedrooms off the corridor and multiple activity and lounge rooms. There was a nice size dining room with doors going out into a secure area in the middle of the building but patients were not allowed to come and go and again had to wait for allocating smoking times to be let outside. There was a range of notice boards and displays and the nurses’ station was again plonked in the middle at the end of the corridor.

Each gave a very different feel, some more welcoming than others; some just made even me feel more miserable to be there even if only visiting. The other massive thing I have noticed is staff, they too make the place what it is, if you have a miserably laid out ward with amazing cheery staff who act like they love their jobs even if they rather be elsewhere then it takes off the doom and gloom you feel about the layout.

Staff from the first hospital are a mixture of really amazing, welcoming and friendly who really try to do their best while running around like headless chickens because of the pressures being thrown at them, to those who rather be anywhere else, huff and puff at having to do something so inconvenient as letting me out of the building and walk around with a face of thunder. Let’s just say I don’t think I have ever seen them quiet, relaxed and able to just have friendly banter with patients, sad fact but true.

The second hospital, staff sit in communal areas even if just in a corner while they fill in paperwork and fill out observation sheets, they seem to engage more with patients because they want to, rather than feeling they HAVE to. There is always someone around so you don’t have to go looking for anyone and they encourage patients to be there with them rather than isolated in their rooms with nothing to do. They don’t rush around like headless chickens and they feel more relaxed so in turn so does the patients they are looking after. It was rare you found one who wanted to be anywhere but work even if that’s how they were actually feeling, I never got that impression.

The last hospital has a calm atmosphere and while the staff tend to only be found at the nurses’ station they seem to be relaxed and chatting, no one seems busy and they seem to have the time to chat with patients and make sure everyone is ok. They on the whole look happy to be in their jobs and don’t look in a hurry to be anywhere but. They were always available to answer any questions I had and if they couldn’t they always went to find someone that did.

So it wouldn’t surprise you now if I told you the first hospital had the most amount of unsettled patients, also seemed understaffed often, the alarms are always going off, staff are always everywhere and while that isn’t the case all of the time it is more often than not. The second hospital had the occasional incident, the alarms rarely went off, patients seemed more settled and relaxed. The third hospital, I never once heard the alarms go off, never saw a staff member run anywhere, patients were more relaxed and the one occasion that someone did get distressed it was quickly dealt with in a very kind and caring manner which meant it didn’t escalate.

Ok I get it, this is all based on the circumstances at the time I visit and obviously things will change depending on patients, staff at the time, staff numbers, the only thing that remains consistent is the layout. I do believe layout plays a part, if only because I feel very differently from one to the other as a visitor. I just thought I would write my observations down. I know which one I would rather be in, Chris is currently in the first one.  Wouldn’t it be lovely if everyone had a ward well lit with sunlight, access to outside space to come and go as they please for fresh air, friendly staff who don’t feel rushed off their feet because they maintained a well staffed ward and in turn want to be at work every day because they were able to take care of their own mental wellbeing. This would allow patients the space to improve and go home.  Would be lovely wouldn’t it?

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‘Look after yourself Sarah’

Sarah SmallI keep trying to do the right thing, that thing about looking after yourself? Yes that’s the one, it doesn’t always come naturally to me but I am getting a little sick of being told every few minutes that that is what I should be doing. To be honest at the moment I am finding life a huge struggle, and you might wonder why, why now? Well I wish I could tell you, but at the moment there isn’t really much I can say on the matter, it is just something else I have to deal with that is making what was already a dire situation so much more difficult to deal with. I could have happily kept plodding along as normal but this situation I have now found myself in, so unfamiliar and such a long and bumpy road ahead feels so alien and difficult for me.

So the other day I dragged myself to see my GP and speak to her about everything that had been happening and once again the same old topic of conversation came up again; antidepressants. I still have the same problems, I am still rubbish at remembering to look after myself so likelihood is I will only forget to take them anyway and taking them hit and miss will be more damaging than not taking them at all. Secondly, how I feel is more circumstantial than anything else, wouldn’t you feel pretty miserable if you had all this going on? Thirdly despite how ‘gross’ ‘disgusting’ or anything else you may find, I am still breastfeeding Cora, yes she is over one, yes she doesn’t need it anymore but NO I don’t want to stop and more importantly neither does she yet. Now I don’t care how many times someone is to tell me it is ok to take them while breastfeeding, I am effectively giving my 14month old anti depressants.. All be it a tiny weenie amount, and that, for me personally doesn’t sit right. I will take risks with myself but I will not risk Cora. So after accepting I will this time take the prescription and ‘think about it’ I left again.

Call me what you like but we all have choices in life and at the moment that is my choice, I am currently having counselling but I have come to the conclusion that I don’t find short term counselling helpful because I have a long term problem that isn’t just going to go away over night so I am in the process of looking into more longer term counselling. I have said it before and I will say it again, it is a terribly lonely place being a carer, not always all the time but the majority, and throw young children into the mix and it is even more so.

I was quite lucky that when I had finished crying to my GP, I came across one of the receptionists I know quite well who was locking up, I was trying sooo hard not to show my emotions, though my face was obviously flushed from crying and I was really quiet. She showed me out the back door, because she had just locked the front one and as I left she asked me if I was going to be ok, well that was it; never ask me if I am ok when already on the brink of tears. Bless her she didn’t let me just leave and instead invited me back in, where she listened for awhile and told me to remember where they are if I ever want to nip in for a brew and a chat. I actually really needed that chat and actually went home with less weight hanging above my shoulders.


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#dearmentalhealthprofessionals

Dear Mental health professionals

As a carer of someone with a mental illness I am often the person who gets to see a lot of what happens from both points of view, I see yours and I see that of the person I care for but my voice is often lost or I feel not listened to. I understand that you are often over stretched, underpaid, tired, carrying your own problems, have pressures and constraints from higher up and while I find it really sad and I wish it was changed none of it even crosses my mind at 4 o’clock in the morning when I have four sleeping children and my partner, who I care for in complete crisis and lack of services outside ‘normal hours’ means I somehow have to make it to 9 o’clock to seek any help.

You see for me, I don’t get any let up, I cannot go home at the end of my day or shift and sit down and relax, fall asleep knowing that I don’t have to think about any of it until the next day because I have to live with it, even when Chris is in hospital, the problems don’t just vanish because this is my life. I often feel, sadly by some of you that you take me for granted, that I am the first person you will blame when Chris isn’t well, be it because I didn’t lock up his medication, I fell asleep and he left the house or any other number of other factors. Yet I am the last person a lot of you listen to or even think to speak with, I sometimes feel forgotten until you next need someone to shoulder the blame or responsibility. I just want you to work with me, I am there to help you because I love the person I care for very much, I have eight years worth of understanding, please don’t talk to me like I don’t know him at all. While I don’t hold the qualifications you do, while I am not even considered to be employed and I often tackle the daily stigma around all of this, I know more about him than you likely ever will, because it is me who has been his constant for so long.

Despite all this there have been a few of you who have been nothing but supportive, understanding and have done anything you can to make things feel a little easier, I just feel so sad that the number is so small. For me it isn’t about doing things that are huge, it is such small things that can make such a difference to people like me, a ‘how are you?’ or a ‘thank you’ is often all it takes to make us feel valued too. A couple of weeks ago a social worker took the time to thank me for all I had done leading up to the person I care for being detained under the mental health act. I was already finding that occasion extremely difficult and it helped to hear someone had recognised the part I had played in all this. Perhaps more of you can voice your thanks to family/friends/carers like me?

I want to thank all of you for the work you do, the time you take and the stress you all endure to help those with mental illness and distress. I hope you remember to look after your own mental wellbeing and to continue fighting the stigma that has always surrounded mental illness. I couldn’t look after the person I care for without your help, and without your help it is likely he wouldn’t be alive now, he would have left four children without a father and a piece of my heart would be forever missing so for that I am ever grateful to you.

Kind Regards,

 

Sarah, full time mental health carer and mum of four.

 

This blog was inspired by the Hashtag set up on Twitter, you can read more about this here on Storify and a blog by OT, Clarissa


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The Dentist is now a privilege

I constantly feel like I am fighting and fighting for everything at the moment and to be honest I am so tired of fighting that when I went to the dentist to make an appointment this morning and was told I had for the second or maybe even third time been taken off their patient list, I didn’t want to have to fight anymore. I was half expecting it after having to miss my last appointment; you know the bank holiday weekend… yeah it was on the Tuesday after that and I spent most of my time in the hospital and a lot of that without any means of communication at all.

I should be used to it though, after all I have already had to write them a letter and meet with the manager before to get myself back on the list, they have it in writing about my situation and while I understand they are running a business I cannot always adhere to their cancellation rules. Today I feel like going to the dentist is a huge privilege, something that someone, like me has to accept that I will always have to fight for. As if it wasn’t bad enough I had to miss it and have been in pain it is now even worse I need to find a new practice, further away which will add even more stress and problems into the situation.

This morning I pushed the pushchair into the empty waiting room of our surgery, I held my hands up and apologised for missing my last appointment the dental nurse once again said she was pretty sure I had been removed from the list, before asking my name and checking, indeed I had. All I could do was turn around, the feisty Sarah who fights for Chris long gone and the Sarah who struggles to get her own needs met reduced almost to tears. I didn’t want her to see I was upset, I didn’t say anything, turned the pushchair around, pushed the button on the automatic door and left. As the cold air hit my face, so did the rain that had started to fall. I couldn’t hold my tears in anymore, I pulled up my hood to protect my hair from the rain and began to cry.

Luckily there was no one around, I walked out of the gated car park and onto the pavement, where I stopped and made a couple of texts. You might wonder why I was crying at what seemed something so trivial, it isn’t, when you spend your life fighting for anything, you spend nights awake with toothache and can’t do anything about it because of caring responsibilities and then when things finally settle down you cannot see a dentist anyway because they lack any compassion and understanding to your situation that they are actually aware of it is far from trivial.


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Just the one left behind.

lonely sarahI have to be brave, when all I want to do is fall to pieces, it doesn’t help that most of the people I speak to don’t have a clue how it feels to be in my position. That became evident with the comments such as ‘well think of it as a break’ when he went into hospital and then all the ‘don’t go and see him every day, you need to think of yourself’.  Then most of the health professionals talk like they are trying to understand but really they don’t, and unless they have been in this situation they never really will.

I rarely open up to anyone, because in all honesty it is just easier to be ok. In all honesty, it hurts, of course it does, every time my girls ask to ‘save Daddy some lunch’ or ‘I love and miss my Daddy lots’ do you know how hard I struggle to keep my heart from breaking, my tears from falling? I cannot begin to explain how difficult it is, and how I often feel a loss for what to do. Everyone presumes the moment Chris goes into hospital that we will be fine because our ‘burden’ has been removed, maybe physically but he doesn’t just disappear from our lives, minds or all of a sudden everything is fine. He leaves a hole in our home, I hate anyone calling him a ‘burden’ I don’t doubt for one moment if I was ill he would do the same.

The worst thing about listening to those around me saying all these things they think are helpful is that it pushes me away, I close into myself even more, because I don’t want to listen to the reply, because that in itself hurts me and I don’t want to hurt anymore than I already do. I just want people to listen, there isn’t anything they can say to make it ok, I know that, if there was we would have done that already.


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The wait for a bed…

The assessment was over, the paperwork almost complete and the wait for a bed had commenced. The section 12 doctor and the consultant psychiatrist had both left, the idea being that once a bed was found the AMHP would meet up with the psychiatrist and she would fill in the hospital. Chris social worker stayed awhile, while the AMHP rang the gatekeeper, who happens to work for our home treatment team (used to be known as crisis team) and applied pressure on them to find him a bed. It wasn’t the most professional arrangement I had ever seen, with the gatekeeper rejecting his calls and then turning the phone off all together. The gatekeeper is also making home visits as part of the home treatment team and it is generally a really bad set up in my opinion.

Chris social worker now had to leave, she had an appointment she had to keep for three o’clock and it was now heading for almost two! Once she had said goodbye to Chris and wished him well, I showed her to the front door, then she said something that shocked me, almost brought me to tears and something I had never heard before. ‘Thank you Sarah for everything to have done in helping us with Chris over the past couple of weeks’ This touched me, I told her how much I appreciated hearing that and that no one had ever said it before, she then told me ‘I don’t always say it Sarah but I really do appreciate all your help in this too’ I once again thanked her for acknowledging me because I am so used to being told how I must do xyz for Chris and then get the blame when things go awry. Today I was being thanked, a thank you that I will never forget and when things are tough I will use to pull me through.

I walked back into the living room; Chris lay there on the sofa, I sat down next to him and started to talk with the AMHP about his job, his daughter, my girls, the weather and anything else that helped pass the time. Every now and again he would make a phone call to see what was happening with the bed situation. At half past two we were told they were trying to get someone moved to a different hospital and that the bed in our local hospital was going to be likely after they had done some ‘bed shuffling’ indeed this was too good to be true when at almost half past three we were told that he would be going half an hour’s drive away. It was then we were informed that an overnight stop and transfer back wasn’t looking likely because there were already a lot of people waiting on beds in our local hospital. My heart sank, I knew there was no way the girls would see him there and I would struggle to visit, there was however nothing I or anyone else could do about it. I helped Chris gather his belongings, looked into his eyes for the last time, before kissing him goodbye and watching him leave with the AMHP, he was being taken in the AMHP’s car without the need for bothering any of the emergency services.

As I watched them walk away I felt my heart sink once more, it was over, the house was silent, everyone had gone, it was just me and I didn’t know where to start first, the girls, the lack of tea, who do I call, what do I do? The girls, they are always my number one priority and they were still with Grandad, I dialled his number, informed him of what had been happening and asked how the girls were doing. I told him I needed to nip out for their tea before we got them home, he told me not to worry, they were fine, to do what I had to do and to give him a call when I was back home. He would bring them back in a taxi to save me having to go all the way out again, which was really lovely of him.

I grabbed the house keys and my coat, I opened the front door and stepped out into the front garden, the cool air on my face was much welcomed, I hadn’t eaten all day, my head was starting to thump and I was unbelievably tired from my very early start. I hatched a plan in my head of where I was going, first stop the doctors, second the chemist, third stop would be Tesco and finally back home. I walked towards the doctors with my hands in my pockets, thinking about everything I had just been through, it was spinning around in my head. The streets seemed quiet, almost eerily so, I was trying to keep the tears away, I felt lost, for a moment I wondered if everything was real, I felt such a very tiny person in a massive world. It is a strange kind of feeling, one I get when overwhelmed with emotions, I looked into the sky as the rain fell on my face and wondered what life would hold for us all now. I reached the doctors and left a message for both our GP and community nurse, I left there and made my way to the chemist, I needed some paracetamol for my ever increasing headache. I was now so deep in thought I left without my change, he called back after me but I said he could keep it, forty pence, meant nothing to me in the grand scheme of things. I decided to try and get hold of my mum, she didn’t have a clue what had been going on, I didn’t want to worry her while she was at work. I text her to ring me, expecting her not to get the message straight away, today was different, my phone started to ring.


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Assessment under the Mental Health Act

cnphotography2Yesterday is definitely up there on the list of the hardest days of my life, it all started really, late Thursday night when unbeknownst to me Chris had left the house at almost midnight and I didn’t know where he had gone. This time I didn’t panic, I told myself he would be ok; he would probably go to his brother’s house and return at some point in the morning. I kept waking up with worry, each time trying to reassure myself, wondering if I should call the police or not, I really didn’t want to bother anyone, but at the same time I was worried. I woke to a gentle tapping on my shoulder; I glared over at my phone to get some sense of the time, it was almost four in the morning. I squinted and rolled over, where sat behind me was Chris, he didn’t look good, not good at all. He told me I needed to stay awake, he said he was scared, by this point in my head I was freaking out, on the outside I was trying to be calm and all I knew was to listen to what he was telling me. I asked him if  he was ok, I could feel the bed shaking, he couldn’t keep still, I could just make out his face in the shadow of the small amount of light shining through the curtains, he looked very distressed. He then went on to explain he didn’t feel safe, he wanted to take all the tablets, he wanted to run away and throw himself into a quarry, he wanted to die. I held his hand, told him I was there for him and suggested we sit together for awhile.

Needless to say I wasn’t going to be going back to sleep. I sat up, pushing my pillow back again the hard wood of our bed, I knew there wasn’t much I could do except listen, and I did, for a good half an hour while he talked, not always did he make sense. He grew more and more restless, going up and down the stairs for a smoke, then to try drinking a brew, then because he simply didn’t know what to do with himself. Now the clock was approaching five in the morning, I knew his social worker was due out at half past nine and we just needed to somehow get to then, I suggested he take a haloperidol, he had already taken one so I was starting to run out of ideas, I just kept talking with him and listening. On the outside I was ok, inside my heart was breaking.

Around six o’clock the girls were rising and I had already managed to grab a quick shower while Chris was sleepy enough to just stay where he was and not attempt anything. Now I was going to have to juggle the girls, a very unwell Chris and the morning routine of getting them to school and the little ones to Grandad’s while we saw his social worker. I was quietly wishing to myself that I had indeed a couple more sets of hands because this task wasn’t the easiest on the best of days. Anyway I managed it with ten minutes to spare, I got everyone to where they should be with just enough time to get home and tidy up any aftermath of the morning before his social worker was due to arrive. Chris was still in a state, he couldn’t keep still, I was conscious not to take my eyes away from him for too long because he was on the edge and it didn’t take a genius to see that. I had just managed to make him a brew when I heard a ‘knock knock’ on the door.

I was relieved to see his social worker standing in front of me and promptly let her in, Chris at that moment in time was still standing in the kitchen. I showed her into the living room and told her to take a seat, she asked where Chris was and then asked how things had been. I told her to put it simply things had been a nightmare; I was very worried and didn’t know what on earth to say. Chris came walking in, shaking, and sat down on the sofa, his social worker went on to ask him how he was, what had been happening. It became very clear to her very quickly that Chris needed help, and asked if he would be admitted into hospital, she wasn’t happy to just leave him at home when she deemed the risks to be so high. Chris wouldn’t go to hospital, he refused, and he kind of agreed he could see that is where he needed to be but that wasn’t where he was going to willingly go. His social worker then make the decision after only being here about fifteen minutes, to get back to the office and speak with an Approved Mental Health Professional (AMHP) for advice before she put in a referral for a Mental Health Act (MHA) assessment. She said she would be in contact with me shortly to let me know what was happening and spoke to Chris to make sure he was going to stay at the house and not wonder off anywhere.

Shortly after she left I was talking to Chris and realised he was about to take another tablet, as far as I was aware he had already had the maximum amount of tablets he is prescribed so anything more he was now taking was technically an overdose. He told me it was Haloperidol, I went to the safe where the medication is kept, and checked the box, there was far more missing than should be. It turned out he had taken six now by around half past ten, so I locked them up and put the key safely into my back pocket before texting his social worker to let her know. She replied to thank me for the information and she was just waiting to speak to an AMHP.

Meanwhile my health visitor showed up, I have a great relationship with her, she is very understanding and supportive and whatever is going on she makes sure to record. Chris was safely asleep after having three times the daily amount of Haloperidol he had been prescribed. It was nice to just sit down and chat to someone, get out my thoughts on what had been going on and she just listened, after all there isn’t that much more she can do. Before she was about to leave the phone began to ring, I went to answer it, it was the AMHP he asked what had been happening and decided we had reason to set up an assessment, after explaining how it all worked, he said he would ring me back when he had managed to set it up.

At eleven forty-five or there about, the telephone once again rang, I answered, it was the AMHP, he had set up the assessment and to my amazement it was for twelve forty, while he hadn’t managed to get our GP out because they were busy, the on call psychiatrist was actually Chris consultant and the section 12 doctor was the same one that had been involved in his previous assessment that led to his section at the beginning of the year. He said he would see us shortly; I thanked him and hung up the phone. I made my way up the stairs, casting my eyes out of the window to see the drizzly rain falling from the sky, I went to our bedroom where Chris lay asleep on the bed, and I tapped his shoulder gently and asked him to come downstairs. It took some convincing and I said he would be able to sleep on the sofa but eventually he made his way down the stairs and into the living room where he sat down, swung his legs around and lay his head on the soft cushions.myeye

Just after twelve thirty there was a knock on the door and to my surprise his social worker was standing there, I was confused for a moment until she said that some of them where here so they would come in but the section 12 doctor was on his way. I showed them through into the living room where they gathered on our corner sofa and the AHMP drew up a chair from the table.  His social worker offered me her seat which I politely declined. Chris had sat up and was uncontrollably rubbing and shaking his legs; he almost looked close to tears. His consultant started to ask a few questions while the AMHP went to our front door and showed the last of them into the living room. I sat down on the floor opposite Chris as they continued to discuss recent events, the conversation was bouncing back and forth, all the time Chris staring into my eyes. The conversation turned to me, I explained what had happened the past few days and the events that morning leading to where we were, I said I felt I had done everything I could but I could no longer keep him safe. The AMHP said that he had made a call to our home treatment team before they came out but that wouldn’t be an option because they ‘have no spaces left.’ I said we didn’t find them much help anyway, that they couldn’t usually provide the support Chris needed in these circumstances and his consultant agreed before turning to everyone and saying I think we need admission to hospital. They asked Chris if he would go of his own accord, to which he gave a firm no. The AMHP turned round to everyone and said ok then Chris we are going to detain you under section three of the mental health act, all the time making sure Chris was aware what was happening. I looked into his eyes, eyes that hadn’t moved from mine, I was really struggling to hold it together, in my head all I could say to him was ‘I am sorry’ not because I could carry on like this, not because I didn’t think this was for the best but because until you have been me you will never understand how truly difficult doing this to your partner is and you will never understand. His social worker just knew I wasn’t ok as I stared into the wooden grain on the floor, while everyone was filling in paperwork she turned round to me and said ‘are you ok Sarah?’ I simply said I was just tired and thankfully her phone rang.

The wait for a bed now began…