acarerseyes

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


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Things could look different two years from now.

So the assessment is tomorrow for the first of the two specialist hospitals where they want to send Chris. I have so many questions, uncertainties that I am hoping to clear up. There is talk that it could mean he isn’t allowed any contact with us for as much as the first 6months but it will just depend how this specific place works. I know Chris is dreading it and to be honest, so am I because everything has gone from just planting the ideas to this is what we are doing very quickly. It is exhausting thinking of everything all the time though, my mind is on constant overdrive.

One of the things I keep thinking about which will have a big impact on everyone and us as a family is the financial implications, how will this change the set up of benefits, this will probably only be his address postally, where does that leave me with my tenancy and our current benefits. These are all things I have adding to the fact that soon Chris might not be living here anymore. Will the children be allowed to see him and when, do they do their best to make sure family/friends/carers are still a part of a person’s life? I don’t know, there are so many questions I don’t have answers to and I will need to bring up, but at the same time if I am feeling emotional, will I be able to?

The other thing I keep thinking about is, two years being worst case scenario is a long old time to be away from everything. What if he doesn’t cope coming back home and fitting back into a routine with the children and I? What if I can’t cope having him back home, especially if he comes back and struggles again as much as he does at the moment. What if his whole outlook on life changes? That he thinks to continue to get well he wants to continue life on his own? There are so many different ways of looking at it, I feel like we have really hit rock bottom now and we can only try making positives out of the situation, life is going to have to change, in a way I never wanted and is far from ideal.

I start my Maths and English courses on Tuesday, in all honesty I cannot wait, and it will be the goal I need to help see me through the next few months.  I would at some point like to go and complete an access course at college with the outlook of going to university to be a nurse.

Things could look hugely different in two years time…


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One step closer

One step closer…

My head is saying one thing and my heart another, all I can think of is what was said in yesterdays ward round and the assessment arranged with one of the Private sector units for Friday. The only way I can explain at the moment how I feel is lost and even then there aren’t really words to explain the pain I feel inside. I don’t know what I was hoping for yesterday, maybe that they would have a change of plan? Other ideas? Who knows, but what I had confirmed was that we were really going down the road of sending Chris to somewhere which would hopefully give him therapy, keep him safe and eventually allow him to come home and live a more for filling life.

Sounds good doesn’t it? The flip side is, these places are far away, with four young children and the inability to drive I won’t get to see him very often. There is no saying this will help Chris and he could give it a go and come home the same, or worse. I know we won’t know until we have tried, but that doesn’t make this feel any easier. He would be going for a year to two years, which to us adults is long enough, but to children that is huge, if we take worst case scenario of 2 years, Cora would be three and a half by the time he came home.

The girls at the moment have no idea, I am not telling them anything until I know the unit he is going to, that the funding has gone through and then have some plan on how on earth I am going to break this to them. Every time I think about it my heart breaks, they are my babies, I want to do everything in my power to protect them, make them happy and most important of all make sure they know they are loved, so much. I know that him going to a unit is better than me having to tell them Daddy has died because he committed suicide but my word I cannot explain to you how much it hurts that it has come to this.

I want to cry, scream and shout, I want to wrap them all up and take us all far away, and I want to make this go away, find a cure and just make everything better. I want to hide, or just sleep for a long time hidden away anywhere to just not have to wake up tomorrow and think of this again. I know the reality is it won’t go away, I have to face this now because out of the three options (1. Chris commits suicide 2. We continue the cycle of hospital admissions until he commit suicide 3. The unit) which would you choose? It isn’t really a choice anymore is it?

It is so easy for health professionals involved to sit there thinking of xyz, I know of only one person who has realised the massive impact this is set to have on me and spoken to me about it. No one thinks that this will leave me as a single mum of four, that my support will have to change because I won’t be considered as caring for someone anymore, that they won’t have fixed the ‘problem’ they will have just given me different ones. A nurse said to me ‘but Sarah you won’t have to lie there at night worrying about him anymore’ I broke down in tears, and thought, No I will be lying there at night, lonely, wondering if/when he will be cuddled up beside me again.

Friday looks set to be a tough day, the next month looks set to be no better, but I just keep reminding myself to ride the storm, it will pass and bring with it a rainbow out the other side. Until then it is ok to feel like this, don’t put pressure on myself and it will be ok.. why? Because I always make sure it is.


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Preparation Chris’ Birthday…

I stood staring at the birthday cards in front of me, ‘Daddy’ ‘Dad’ they all read. I was in town, on my own, I felt a little bit lost actually, I normally have at least one of the girls with me or Chris, but rarely will you find me on my own. I didn’t know what to do with my hands, where to put my bags or anything because I am so used to having a pushchair with me. I was there to buy cards and presents for Chris, because it will soon be his birthday, I was trying to think about it positively and make things a little special for him, I know he finds birthdays hard but I always try my hardest because maybe over time they will get easier. Anyway back to staring at the cards…

I picked up a card, Daddy was written on the front with a little picture of badgers below it, the words were gorgeous, I could feel the tears welling up in my eyes. I opened the card up continuing to read and think about the words, that is when the full force of my emotion hit me…  daddy card

Every word hit me, it rang so true, but my mind always wondered back to how sometimes he was too unwell to even realise this, because being mentally unwell is so cruel, it can take away any belief anyone loves or cares for you no matter how untrue it is. I managed to pull myself together and disperse the tears; I walked over to the lady at the till and paid for the cards I had chosen for him. I walked out of the shop, having paid, placed the cards into another bag and went to find him a present. This year the girls won’t be waking him up with smiles on their faces, cards and presents, he will be waking up on a psychiatric ward, feeling like no one even cares about him. This makes me even more determined to make sure that he has some element of a special day in while he is in there.


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Keeping my head together

It is hard enough keeping my head together at the moment when all I seem to want to do is quietly fall apart. I try and take comfort in what those around are telling me regarding Chris but today it has become evident that not everyone shares the same opinion, before I was almost set on everyone thinking that the whole moving him to a unit thing was what would be for the best but now his social worker is back she takes a slightly different opinion on it. This makes me feel like I am constantly being pulled one way or the other about what is best and what will be happening and it is exhausting, trying to get my head around him going, him staying, him coming home and all other possibilities. It is fair to say at the moment no one really knows.

I know this will take time and nothing happens overnight, but then there is some questioning that Chris could change in the next month which changes their options, the way I see it, if they think that then how can we make such a huge choice for a year to two years of his life based upon three weeks of severe distress and high risk? Yes ok I understand he has been in this cycle for awhile etc, etc but I still think that with everything lately there is an element of understandable distress with recent events.

My head is spinning with options, my heart saying something else and I just want to crumble into a ball of tears and forget about the world for awhile. I know it isn’t helpful but I am hurting with all this too, and hurting a lot, a lot more than I tend to let on. It doesn’t help anyone if I cry, it definitely doesn’t help Chris, and so I try getting from one day to the next without showing my true emotions. I don’t know the answers, I don’t know what lies ahead anymore, but I do know it will be difficult, I know that it is only going to be about making it hurt a little less rather than not at all. Tears fall down my face, a path they have travelled so many times before and all I can hope is that one day things will be ok and this is all but a distant memory.


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Treatment for Overdose commenced

Following on from ‘Chris found, overdose taken… A&E it is..’

bruisedChris was taken into a paediatric cubical at some really early hour of the morning; a relief nursing assistant came and took over allowing the other one to go back to the ward. Chris was lying on the trolley; I was sat next to the nursing assistant on chairs next to his bed. The nurse came along and took bloods from him while we waited for the doctor to come along, that took long enough, she asked what had happened, did some examinations and basically said we were waiting on his blood results to come back. The results were taking their time but understandably as the place was pretty packed, hence Chris being in a paediatric cubical, I heard that they were intubating someone in resus, someone had walked in after being stabbed and various other dramatic events.

I sat talking with the nursing assistant to keep myself awake if nothing else. It was heading for three o’clock in the morning now and I was struggling, as is normal of hospitals it was so hot which was adding to my fatigue. Finally at around three in the morning his blood results showed he needed treatment and was started on a drip, he was struggling to keep himself awake, which in a way was good because he wasn’t at risk of running off. The nurse came in and started his drip, he said he was trying to get him a bed and would be moving him up to AMU as soon as he could. He left the cubical and I could hear him talking about all the people they had gone into ‘red’ meaning they had been in accident and emergency over the allowed time (set by government) and had now ‘breached’ but what were they to do if there wasn’t a bed for them on AMU or a ward yet?

Finally at around half past four in the morning Chris was taken up by a familiar porter to AMU and put in a side room, once he was there I decided that I had better get home and get some rest and I would find out how he was in a few hours time. I walked down the corridors until I reached the main entrance. I booked my taxi and waited, not for very long thankfully, I don’t really remember much of the journey home. I was exhausted, I lay on my bed, still fully clothed and glanced at the time, it was almost five thirty in the morning, the girls would be awake soon, there was now no point in trying to sleep, so I stared at the ceiling and started to process the hours before.

(Photo. Bruising from the cannular. Chris arm.)


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Chris found, overdose taken… A&E it is..

I sat back down on Chris bed, my head still spinning with thoughts about where he was, was he ok, why had he run away? I was just trying to work out what to do; I didn’t know the night staff and sitting here seemed pointless. My phone started to ring, I glanced down and saw his dad was calling, ‘Sarah, he is here, he has just gone upstairs to see the girls’ I asked if he was ok, told him I would tell the staff because they would need to let the police know. His dad asked him if he was ok and it was then he told him that he had taken an overdose. I told his dad to keep him there and I would speak to the nurse in charge, who at the time was trying to get medication given out, he locked up the treatment room and asked me into the office where he took all the information he needed and then suggested I went home.

How do I go home? I mean I know how to get there, I know that is probably the best place for me, to get some sleep but how do I sleep now? I left the ward, not knowing what was happening, so I telephoned his dad and asked, the police had just shown up and were going to take him back until he said he had taken an overdose, obviously with the officer not being medically trained to deal with it she said they would have to request an ambulance to take him to accident and emergency. I agreed with his dad to wait there until he arrived.

I made my way across the hospital grounds, it was dark, damp and miserable, I was starting to feel a sense of relief that Chris had been found and was somewhat ok but I was getting tired, very tired. I stood outside the entrance to accident and emergency and watched the ambulances coming in and out then I heard an ‘excuse me’ I looked behind me and a tall young man stood there with his hand in a cast. ‘could you help me put my coat on please’ I responded with of course and helped him get his arm into his sleeve, I asked him what he had done to which he replied, broken his hand and now needed it pinning. I asked him how it happened and then the questions turned on me. ‘So how come you are here?’ he said. What did I say? Would he just think I am some stupid idiot like most people, wasting her early hours of Saturday morning standing outside accident and emergency waiting on someone who had taken an overdose. I thought to myself no Sarah, tell him the truth, and don’t worry about his opinion, your tackling stigma in small ways. So I told him it was complex and explained he was on another ward when he went off and took an overdose that Chris was currently sectioned and I was waiting for him to be bought in by ambulance. He said he was sorry and seemed genuinely concerned, wishing me well and hoping Chris would be ok. As it started to rain I put my hood up over my head, he suggested I wait inside in the warm but I refused saying I was ok. He said goodbye, I told him to take care and he walked towards the main road.

An ambulance pulled in and the doors opened, Chris got out with the crew and was taken into the ambulance triage area, I had followed. The nurse was quite dismissive ‘we can’t have him here he has to go back to the psychiatric ward, it’s for their SHO to deal with not us, we have spoken to them and they agree he can go back..’ So we all hopped back into the ambulance and around the corner to the ward, the ambulance handed over to the nurse in charge who I had said goodbye to not so long ago and they left. He called us into the office where he explained that Chris would be going back to accident and emergency with one of their members of staff. What a complete nightmare this was turning into now!

Walking back over to the main hospital with Chris and the nursing assistant in the cold and rain, back to where we had just been, booked in at reception, took a seat and waited… and waited.. It was now half past twelve, early hours of the morning and he had only been triaged, the waiting room was quiet busy, ambulances were constantly bringing patients through and I wondered if I would be getting home anytime soon.

Continued…


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That feeling when Chris is AWOL, never gets any easier!

I had gone to visit Chris getting there for between six and half past like I usually do, I know he had been really struggling all day because I had spoken to him on the phone a couple of times to be greeted with his distressed tone and he had been quite upset. I sat on the bed talking to him, asking if staff had spoken to him like they assured me they would when I rang that morning with my concerns. He said they hadn’t, which was slightly annoying as I had told Chris that I had spoken to them and why because they would be going to speak to him and telling him they knew I was concerned, and I obviously didn’t want him to think he couldn’t trust me so I told him, but then when it didn’t happen it makes it slightly worse.

The ward was somewhat chaotic, didn’t seem very settled, I usually only have to walk down the corridor when coming in to tell what the atmosphere in there is like and today it didn’t feel great. Chris had given his ‘red card’ to his named nurse for the first time ever, so as well as being so pleased I also knew how bad he was feeling. I was trying my best to distract him, he had used up his PRN, we spoke for awhile, I suggested going and making a brew. Standing outside the little kitchen, more like cupboard, his nurse handed me some details just as Chris finished making his brew, she asked him how he was, he said really struggling so she asked if me being there was distracting enough and he said yes. By this point I was actually thinking to myself, it really isn’t and I am struggling with him but they all seemed so busy that I would try and make do for now.

Chris went down for a smoke, and because visitors aren’t allowed down the back I usually sit in his room, today however I needed to get some air and clear my head and didn’t want to spend fifteen minutes staring at the walls of his room. I went to find a nursing assistant to let me out, I followed her to the ‘air lock’ and she asked how I was and stated that it can’t be easy for me and I said not really and struggled holding back the tears. She apologised for making me cry and I told her I would be back in awhile anyway. Leaving the air lock and walking down the stairs I couldn’t hold back the tears anymore, thankfully there was no one around anyway, trying to hold it together I walked to the garage to get a bottle of water.

Once back on the ward with Chris he was still struggling and I was feeling somewhat useless, he seemed to be getting worse not better, I followed him as he went to ask for PRN and then once again the fire alarm went off. He couldn’t have PRN until 9 o’clock and it was only approaching eight, he walked back to his room, not saying a word, once again I tried distracting, talking about anything I could think of before we sat in silence for awhile. The fire alarm had stopped ringing and his room was once again quiet, I asked him if he was ok and he didn’t answer. Announcing he was going to make a brew he walked out of the room, I sat and text a friend to try and pass the time, it had been a while but sometimes if there is a queue it can take some time but when staff came to do ‘checks’ or ‘obs’ or whatever they like to call them (basically making sure person is a) there and b) ok/alive) and asked if he was in the toilet I said no, he went to make a brew. It occurred to me that unless she hadn’t checked the little kitchen that she hadn’t already seen him and he had been awhile so I went to have a look myself.

I walked down the corridor to the kitchen, he wasn’t there, I saw the nursing assistant and she shrugged her shoulders at me, this is staff language for ‘we don’t actually know where your loved one is either’ now I felt sick, very sick and worst of all I had another patient stood in front of me with what appeared to be delusions of grandeur and while I am not normally phased by this he was well into my body space and I was struggling to get anywhere near the office door to alert Chris nurse or at least the other one on duty that Chris was missing. I wanted him to a) stop touching me and b) move out of the way and then staff to actually answer the door. For the first time ever I felt vulnerable, because my head was all over the place and I felt far from ok or strong. The ward wasn’t settled, the staff were stressed and now I was knocking on the office door giving them another problem. Don’t get me wrong the two nurses on shift are two of the best on that ward but I still felt awful knocking. His nurse was on the phone so the other one answered the door, he said he would go and look for him; he then sent the nursing assistant to go and look and told me to knock again once his nurse was off the phone. I did and told her, so she walked the third corridor, so once again I was stood outside the nurse’s office wondering where Chris was, if he was ok and what the hell I was meant to do? I started to shake, I felt too lost and upset to cry but the shaking was relentless.

Luckily it wasn’t long before the first nurse was back, he invited me into the office and explained the back door was still open from the fire alarm, that he probably went down there and over the wall out the back. I felt sick, writing this now still makes me feel sick and upset. They rang hospital security and then the police to report him missing, it was awful, and why was I sat in this office again? Why was I going through this again? Only difference was this time the rest of the ward wasn’t ok, they were short staffed, patients weren’t exactly settled and then there was a new admission, except I am not even going into details on that one but it was far from straight forward. Basically I found myself sat alone in Chris room, staring at a wall in tears. I curled myself up on his bed with my head in my knees and cried. Where was he? Why had he done this? Was he ok? I didn’t want to be on my own, I couldn’t stop thinking of everything in my head, tonight of all nights I didn’t feel strong enough for this.

After I had calmed down a little I sat myself up properly and thought I had better text his dad in case he turned up at our house, I was just doing that when his nurse came back and asked if I wanted to sit there or come back to the office with them. I didn’t want to be in there way but at the same time I didn’t want to sit there and continue to think all these awful things. I followed her back to the office and sat down on one of the chairs where I waited and waited… still no news on Chris and now with hand over approaching I knew I would have to go home or sit in his room again.

Continued here…