acarerseyes

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


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Seeing things, AWOL.. I am drained!

I think it is fair to say at the moment I am mentally exhausted, not really a surprise there though is it? I am worried most of the time at the moment about the deterioration in Chris and I am not sleeping particularly well or restfully. My evenings are spent visiting him and to have to watch him so distressed takes a lot out of me, worrying is truly exhausting.

On Thursday night I was sat in his room waiting for him to come back from smoke break, he was taking longer than normal but I wasn’t worried because staff are sometimes too busy to keep to the exact time. I sat and waiting getting increasingly bothered by the fact Chris was still not back. A nursing assistant knocked and came in, he was removing the vomit bowl Chris had been sick in, he grabbed the bowl and I asked where Chris was. He said he didn’t know and that he has assumed he was in the toilet, I said he wasn’t then he told me he would be back in two seconds. I felt slightly sick by this point wondering where he had gone. I sat and waited for two more minutes when another nursing assistant came in and asked if I had seen Chris… ‘no, but could you tell me where Chris is because he went down for a smoke’ she said ‘oh, would you like a cup of tea’ No actually I didn’t want a cup of tea, I wanted to know where Chris was, I had had enough of waiting in his room and walked the corridor to the nursing office, there was staff looking everywhere, it was clear they didn’t actually know where Chris was either. Nursing assistant F told me to come into the office and said they were presuming he had gone over the wall at smoke break. I felt sick, I couldn’t stop shaking and as they were still trying to work out what to do I asked to sit down. Before waiting for anyone to reply I sat on the nearest chair I could find, relieved to sit down before I fell down I was trying to stop myself from shaking.

The nurse had told me that the person who had taken everyone down for a smoke hadn’t even realised that Chris was down there and because there was quite a few of them it was hard to keep tabs on everyone. In other words they hadn’t even realised Chris had jumped the wall. I listened to her on the telephone to hospital security and then reporting a missing person to the Police again. I couldn’t believe this was happening again, not to mention she had said ‘this isn’t like Chris is it, has he ever done anything like this before’ clearly either forgotten Sunday or didn’t know about it to begin with.

Chris came back awhile later, he was distressed because he had been seeing the person who abused him as a child everywhere, and he had followed him back to the ward. Once Chris had finished answering questions with the staff we both went back to his room where he was getting more and more distressed, for a good ten fifteen minutes he was telling me that this person was standing in the corner and he wanted me to ask him to go away. There wasn’t anything in the corner, or anywhere else in his room, but it was clear that Chris was seeing something that I could not see and he was scared. I spoke to the staff before I left about what was happening and they agreed to try and get a plan in place with the doctor the following day and tried to encourage me to go home and get a good night sleep. I was exhausted and even more drained than to begin with from all the worry he had caused.

Leaving the airlock the door clicked shut behind me and I began to walk down the stairs to get my taxi home. I got half way down the first set of stairs and saw a nurse who has always been great and Chris gets on well with, I filled him in a bit about what had happened and various other topics of conversation because I hadn’t seen him since Chris last admission at the beginning of the year. I felt better that there was going to be someone good, looking after him and maybe that peace of mind would allow for a slightly better night sleep for me. I made my way home feeling slightly better that at least for tonight he was in very capable hands.

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Powerless to help.

Tears ran down my face as I tried to come to terms with what I had just witnessed, I had to make it home from visiting Chris without breaking down anymore than I had already, I tried my hardest to slap on a smile for the taxi driver who whilst not pointing out I looked upset, seemed a little awkward when talking to me. I was exhausted, drained and really worried, I had never seen Chris like that before and I didn’t really know how to deal with it. It was now ten o’clock at night, I walked in through my front door and clicked it shut, had a brief chat with Chris dad who had been looking after the girls and saw him off into his taxi home. I felt a huge weight pushing down on my head and shoulders as I climbed the stairs, got myself ready for bed and hid under the duvet where once again I was alone to cry.   4 hours previous….

The bus pulled into the bus stop outside the hospital; I thanked the driver and hopped off, walked along the pathway to the main entrance of the hospital where I checked to see the time, I was a little early for visiting so I sat myself on a bench for a few minutes while I checked twitter. Upon checking the time again I made my way over to the building where the psychiatric wards are, in through the main doors, two more sets of doors, a lift (that still doesn’t work properly) and to the first floor, into the air lock where I pushed the bell for the ward that Chris is on. I waited and waited, until finally someone came to let me in. I signed myself in and made my way to Chris room, his nurse saw me and called me into the office for a quick chat, she asked me to see her before I left so I could feed back how he had been. As I walked down the corridor I couldn’t have prepared myself for what I was going to have to deal with or the emotions I would go through.

I did as I always do, gave him a big hug, he was in tears, Chris doesn’t normally cry, but today he looked desperately upset, tired and extremely mentally drained. I asked how he was, he told me he wasn’t having a good day, but wasn’t able to say much more through the tears that rolled down his face. I sat there and listened to him, he didn’t really say much, he wanted some juice, so I agreed to go to the shop for him and pick the juice up, told him I would be back shortly but not to follow me to the doors.

Once I had returned from buying his juice and staff had let me back inside I once again walked the corridor to his room, I knocked and he let me back in. He was still in tears, shaking and visibly distressed, it was awful to see. I sat beside him, he said he was going to be sick so I passed him one of those snazzy hospital ‘hats’ yeah a vomit bowl! He was sick and said he didn’t feel very well, I told him I would let his nurse know, she checked his physical obs but apart from a slight fever, he was otherwise ok. He sat on the end of his bed and just sobbed and sobbed, he was being hit with flashback after flashback, he was shaking, his head in his hands I rubbed his back and told him he was ok, he was safe and that no one or nothing could hurt him. Tears ran down his face and onto the floor as he begged and begged me to make them stop, I felt helpless. I went back down to the office to find his nurse, who had just nipped out with another patient, I waited for her to come back just outside Chris room.

I spoke to his nurse once she had returned and said I was so concerned about Chris, she agreed, he had maxed out on his PRN medication and she was struggling with suggestions on what to do. She entered his room and saw him sat sobbing at the end of his bed, she crouched down to his level, rubbed his back and started to talk to him, asked how she could help, gave him ideas of writing things down and ripping them up and said she will try and get him reviewed with the doctor again soon. As she left to get some paper she asked if I was ok, I smiled and nodded. How can anyone be ok watching this?

Visiting was finished, I said a heartbreaking goodbye to Chris and walked out of his room, my head was hurting as I tried not to cry, and I walked to the nurse’s office where both his nurse and nurse E were sitting. They asked how things had been, I said awful, they agreed he had had a really bad day and that he was struggling to cope, they reassured me that they were keeping a close eye on him. I burst into tears explaining that he had been begging me to make the flashbacks stop, his nurse told me not to cry or I would set her off before placing her arm around me. She then told me to give her a call in the morning to find out how his night had been and told me to get home and look after myself as much as possible and that even though they know I will worry regardless he really would be ok there with them. She walked me down to the doors, told me that I knew where she was and let me out. I walked into the stair well, the lock on the door clicked behind me, never before had I seen Chris like that, I have seen him distressed, many a time, but this was different, this was something I hadn’t seen before.


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Three amazing nurses.

I often complain about mental health services, their staff, wards CMHT, home treatment or crisis teams because of all the bad things that have happened and continue to go wrong but I wanted to highlight something that has really helped me over the past couple of days. I wanted to explain what has helped me deal with difficult circumstances recently and how I greatly appreciate the staff that helped make things easier for me as well. Three nurses stood out to me in particular, why? Because they all had the time to make sure I was ok in all of this, for once I didn’t feel forgotten. It has been the opposite, normally my health pros are great and Chris lot forget me but right now Chris lot are great and my lot have forgotten me, because he is in hospital my ‘problem’ has gone, but the reality is far from it.

I knocked on the office door because I was worried about an area of self injury I had seen on Chris, nurse J invited me in I told her my concerns, she was able to reassure all of those, she listened and answered any questions I had, I was able to give her information about Chris that she didn’t realise and she assured me they would do more to hand the information over so all staff were aware. She took the time to make sure I felt ok and told me to come to them anytime because that is what they are there for.

After Chris had done a runner on me the other day while he was on leave nurse E was letting me outside for some fresh air, because I really needed to get a bit of space and pull myself together before I went back in. She could tell that I was worried and asked me if I was ok, which she then declared a stupid question because she could see I wasn’t. She spent awhile talking to me about what had happened while we both try and processed it, she was really understanding. Again before I left to go home that evening she waited until Chris had gone away from the door and re entered the air lock where she could talk to me alone, to make sure I was ok. I must admit, not at all something I am used to but something I really appreciated.

Then yesterday nurse S, who happens to be his named nurse, was walking back from looking after Chris on a general ward, she came across me in the corridor where she stopped and spoke to me, finding out how I was and what I thought of the situation. She stressed that I needed to look after myself as well, I know but it is hard. I explained his social worker was now on three weeks of leave and that was really difficult in itself because what I would normally ring and speak to her about I now didn’t have anyone. Then she surprised me, she was like ring me, ring us, it is what we are there for.. was I hearing right? Did someone actually care that this is hard on me too? Then she expressed that on Sunday when she had seen me in passing on her way home and I told her Chris had run off that she had spent all day at home worrying about Chris, she had rang the ward a couple of times for updates and didn’t rest until she knew he was ok. For the first time ever someone actually made me see how much they care, that even when they are rushed off their feet and don’t come across at all like they have the time to care they clearly do. I am so pleased she shared that with me; it has changed the way I see them and that a lot clearly care despite how they initially come across.

So over the past couple of days despite everything that has happened and how awful things have been, I really felt that someone was making sure I was ok and for the first time ever I didn’t feel forgotten. This gave me a glimpse into really good care, services that actually care. What those nurses said made more of a difference to me than they will realise.


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Escorted leave Chris went AWOL

013Sunday, what an eventful and emotional day it was. The plan was, to go and see Chris after lunch, take him out for his hours leave and then once he was back at the ward say my goodbyes and go home to makes the girl’s tea, bath or showers them and get them into bed nice and early for school on Monday. It was all going so well, I had got on the bus and headed up to the hospital, my day to that point had been uneventful, helping the girls with their homework and drawing and colouring in pictures. The bus journey was alright, as good as getting a bus is ever going to get I suppose. The bus pulled in to the stop outside the hospital and as always half the passengers got off alongside me. I walked down the pathway to the main entrance, people coming and going, standing around smoking, chatting laughing, some visiting, some patients and then even the odd staff member. It was quieter there on a Sunday than it is during the week. I walked through the hospital and out the other side and made my way over to the building where Chris was.

I walked to Chris room, knocked on the door and waited for him to let me in, gave him a hug as I usually do and he said he wanted to go out. I asked how he was feeling, he said he was feeling suicidal but was hoping the walk would help. I knew his flashbacks were really severe because he had told earlier that morning and again was hoping being out would be a distraction. We walked to the nurses office where his named nurse was on duty, Chris asked to go out with me for awhile, she checked his section 17 leave but didn’t have a copy so asked that Chris got his for her, we did, she was happy and walked us down to the doors. Along the way she was asking Chris how he was feeling, he said he felt suicidal but when asked if he had any plans he said no and was hoping going out would be good distraction. She double checked with him before letting us out and wishing us a good time.

We went to the hospital shop for a drink before sitting down on a bench; Chris made a smoke and suggested we went to the local fuel station to get some tobacco as he was running short. I agreed, at the station I picked up some Mars chocolate ball things to nibble, we paid and then left. As we were heading back along the main road to the entrance into the hospital nearest the ward Chris without a word just ran straight across the main road, four lanes of traffic and off into the distance, I stood for a moment shocked before grabbing my phone, I didn’t have the ward number stored or the credit to ring anyone. What do I do was going through my head as I part ran, part speed walked all the way back to the ward. Through the doors to the building, I pushed the button for the lift but it was taking what felt like hours, finally it arrived and I got in it, up to the floor above and hopped out. I pressed the doorbell to the ward and waited; ‘hurry up hurry up’ was being repeated in my head. A nursing assistant and nurse finally came along on their way home and let me through, neither either noticed or let on to the fact Chris wasn’t with me. I walked hurriedly through a set of double doors straight into his Named Nurse ‘How did it… Where is he’ she said, she too making her way out to go home. I told her he had run off, asking if I was serious she called to a nursing assistant in the office to speak to me. I made my way up to the office and they got me in and closed the door.

I could feel pins and needles creeping through my arms and legs, I was out of breath and I felt sick, a nasty feeling that I might pass out was sweeping over me as my ears and head buzzed. The nurse on was lovely, she telephoned the Police who were out looking for him straight away. I listened to her giving his description occasionally asking me to give information, she said he was by no way a risk to the public but he was to himself and then I heard words that will stick with me for awhile ‘we are concerned he will try and kill himself’ my head dropped and I fought off the tears, I can deal with thinking about that but for someone to say it, it felt even worse. Another of the nurses offered me a chair and I sat down, where it was just a waiting game. Awhile after he had ran off from me he appeared on the ward, the nurse took him to his bedroom where I followed, he looked pretty dopey and clearly had taken or done something. She managed to find out he had overdosed and the only reason he came back because he didn’t know where else to go. He looked awful, was pale, shaking, drowsy and getting more and more unsteady on his feet. She left to call the doctor, the rest of the day was spent waiting on doctors and blood results right up until visiting had ended and I finally made my way home, feeling emotionally drained from everything that had happened and trying to make sense of it all.


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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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#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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Worst ward round… ever.

I don’t know where to start really, my head is a jibbering whirlwind of mess that has been building up for quite an amount of time with nowhere to go other than round and round. I don’t even know where to begin and more importantly don’t know when it is ever going to end. I haven’t blogged in quite some time, being ill, the children being unwell, Chris in and out of general wards, his care (not that you can sometimes call it that) and just so many other things. Today though something happened and when I don’t feel like I can explain things to someone, when my head is in a bit of a muddle, I thought I would turn here, to my computer screen with my white little piece of Microsoft Word paper, my keyboard, mouse and most important of all my blog.

I wouldn’t say I am an emotional person, don’t get me wrong, I cry when something awful happens or someone passes away, I cry with good news, a moving piece of music that’s played or seeing how much Chris suffers.. Ok maybe a bit emotional then, or maybe just caring. It is just something that is in me, it comes naturally without any force at all, so naturally that I don’t really realise what I do until it is pointed out.

I arrived on the psych ward today half an hour early for Chris ward round, this was after what might as well have been a military operation of childcare organising and to be honest it is all about the time keeping, mess it up and you’re in a muddle from there on in. As always the ward round had been made to suit every single person in the room except me, you know that person who lives in Chris house and doesn’t do much… That’s me! Anyway today’s time was particularly horrendous because it didn’t just land over one school run but the two I do at lunchtime… thanks to a friend I managed to wangle it so that all children were being picked up, cared for and most importantly, happy.

Once let in through both the doors, signed the book, pushed my way through various doors and acknowledged the staff members who had bothered to say hello to me I found Chris room, knocked and walked in. Sat on his bed, in a little room with nothing more than a place for clothes, a desk, draws and a shower room was Chris, this had been his ‘home’ now for almost fifteen weeks. I gave him a hug and waited until we were called through.

To my surprise I was called through on my own, this tends to usually only happen if I had requested it, if there was something they needed to know but I didn’t want to be so blunt in front of Chris for example. I walked in, to be met with quite a few pairs of eyes from various professionals and found myself a seat, I promptly sat down. The psychiatrist started saying that they didn’t have any evidence of what I was describing of Chris, just like the fact they don’t believe he has migraines or the fact he was ever being sick… or perhaps anything to do with Chris at all.  He went on to say they had looked back at his admission history and that is when these words came out of his mouth…

‘Up until 2005 Chris had, had two hospital admissions, then he met you and has since been in hospital more than six times’ I was shocked but instead of taking offence straight away I let him continue… to be met with more sentences about how we have four children and how I must be stressed and other ‘health professionals’ have said that this is having a negative effect on me…

I had heard enough, I opened my mouth and managed to get out a very tearful ‘are you trying to say this is somehow my fault?’ I was met by an echoing ‘no no no’ from around the room. I held my hand out in front of me before I had to listen to anymore and said ‘sorry I need a moment’ I got up to my feet, could hear everyone talking as I left the room, I was shaking, I felt sick, and was just so shocked. Outside the room, waiting, was Chris and his advocate, they could see there was something wrong with me and I asked Chris just to let me into his room, I could barely stand up.

I felt like no matter how hard I tried to stop the tears that every time I spoke they just came out again, that what he had said no one should have to listen to. Even worse that something that I told Chris that had happened to me actually contributed to his flash backs starting up so bad again at the time. Should I feel guilty? No, I never intended to cause him hurt or upset, I had no idea, and instead of exploring loads of causes it just felt like well before he was with you he was fine and now he is terrible, must be me then. This psychiatrist hadn’t even seemed to have looked at his general admissions either to see how many overdoses he had actually taken and attended hospital for even before he knew me! Here was me thinking they couldn’t possibly blame me for anything else….

Once I had returned to the room and they had back tracked over most of what was said, this psychiatrist unable to look me in the eye what so ever, the ward round finished and I was so pleased to get out of there. I was stressed, hot, exhausted, my head was now banging and I was trying to do everything I possibly could to hold back the tears.