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.



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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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.


‘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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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.