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

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Our Christmas

Although Christmas was always slightly tainted from the moment everything happened with Chris and he ended up in hospital, I knew no matter how much I wanted to crawl into a hole and hibernate through it I had to try and give the girls a fantastic Christmas. Everything had been bought for them, just everyone else who would have to go without this year, I didn’t get round to sending a single card, let alone any gifts but like I kept telling myself the short term pain of him being in hospital would hopefully lead to the long term of him more well than he is at the moment.

Christmas eve he was granted leave until Thursday, they would keep his bed and he could return anytime that he wasn’t coping. He came home and the girls were thrilled to see him, I explained from the word go that he was only coming home for Christmas and he would then be going back to hospital, as at no point did I want them getting confused with him coming and then going. They accepted this.

It was lovely to have Chris home, to spend time with him and the girls as a family again but on Christmas day it hit me like a ton of bricks again just how unwell he is, how much he struggles with simple things and how he just seemed so overwhelmed by everything. My heart, felt crushed again as the reality once again hit me. He managed to get through Christmas day; my parents came and cooked Christmas dinner so we didn’t have anything to think about. On Boxing Day we spent the day just as a family, but from lunchtime things were very difficult, he struggled with agitation, his thoughts, he wasn’t coping very well and he was asking for PRN medication, to which the hospital hadn’t sent him home with any. That night he spent most of it awake or having nightmares and flashbacks and by morning was shaking, sweating, agitated, anxious, worried and again struggling with everything.

His social worker came and picked us both up and we took him back to hospital where he was having a ward round, they have upped some of his medication, they have said he might be allowed some more leave in a couple of days but would see how he goes and try and get to the bottom of the prolonged agitation. It was hard giving him a hug and a kiss and leaving him behind the doors again, it doesn’t get easier but I know deep down he is in the best place at the moment and we can make up for the time lost once he is home. Next ward round has been arranged for next week.


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It’s Christmas time!

I know I have been quiet for awhile, the past few weeks I am not going to lie have been hard, with a whole range of emotions from relief, happiness, to sadness and anger. You name it; I have probably felt it over the last couple of weeks. Chris remains in hospital where they are monitoring him and changing his medication to suit, they so far, apart from one occasion have been amazing, really caring and I leave knowing they are looking after him, unlike our local hospital.

With Christmas upon us I have been trying to keep myself busy which with four children is pretty easy but every now and again I am reminded as to the reality of what has been going on, and I have lived in an unknown world as to whether Chris would be well enough to have some leave over Christmas or not. I still won’t know the definite answer to this until later today so for now it is still just a wait and see game. As much as I would like him home if only for a little while, I know he is still very far from well so understandably it is causing me worry about looking after him and keeping him safe, although we know he can return at any time.

I have been touched so much lately by other people’s kindness, on many occasions I have been brought to tears. My health visitor ordered the girls presents and dropped them round on Friday, our doctors give out hampers to those who have had a tough year, another of my friends gave me something so special and personal to her to remind me I am never alone, another friend gave me loads of things to make Christmas a little bit more special saying ‘if you can’t help your friends at Christmas, then when can you?’ I have had others help with the girls; some have offered or given me lifts to the hospital to see Chris. Then there are those that have been there to listen, some even at silly hours of the night, and I mean it, I am deeply touched. I am honoured to call them my friends.

I am incredibly lucky that both mum and dad are coming over for Christmas day so some of the pressure will be taken away from me, they can help with the Christmas dinner and the girls and I can concentrate on being a family again if Chris makes it home for awhile. They will be around to help out and share Christmas with.

I just want to take the opportunity to thank you all for helping me through the last few weeks, for listening and sharing your experiences with me. I want to wish you all a very Happy Christmas whatever your plans may be and send love and happiness your way.

God Bless,

Sarah x

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‘I am going to have to section him’

Last weekend was one of the worst I have ever experienced, I spent all of Saturday night trying to keep Chris safe, using distraction of absolutely anything I could think of before giving him his medication and then crossing my fingers that he slept. He didn’t so subsequently I didn’t sleep either. I knew I just needed to get him to Sunday morning when the Home Treatment Team would be out to assess him. They arrived late, but they did call and let us know, which makes a welcome change. I couldn’t be there because I had the girls and didn’t want them to hear the conversation as it isn’t appropriate. I went upstairs with them to make dens and play teddy bears picnics until they had been and gone. I returned downstairs once I had heard them about to leave and after they had walked out the door, having said nothing to me I asked Chris what they had said. He told me they didn’t know how to help him and that he already had distraction techniques in place and that they would write to his social worker with some recommendations. My jaw nearly hit the floor and I went outside to see if I could see them to find out their reasons as to why they hadn’t been able to help but they had gone, I had no idea where but they had just vanished.

Early afternoon Chris went out without saying anything and I didn’t know where he was, I text various family and he wasn’t with them, I managed to get hold of him, he said he didn’t want to come home and that he wished he was dead. I managed to talk to him and get him home, I reassured him things would be ok and he wouldn’t feel like this forever. He came home and it was obvious he was finding things very hard, I tried to keep him busy and suggested he try and have a sleep on the sofa.

I had just started cooking tea, the smell of Pork and caramelised onion sausages was starting to fill the house, between sorting the tea and answering to the demands of the children I hadn’t noticed that Chris once again was not in the house. At this moment in time I needed a few more hands and eyes than I actually had. I went to grab my mobile to ring Chris and see where he was, to find the message ‘No one is going to stop me this time, I haven’t taken my phone. I love you all bye’ I felt sick, my stomach sank, I got my neighbour to grab the girls because once I had checked with family, if they hadn’t seen him then I would have to call the police and there was no way I could make that call in front of the girls.

No one had seen him; the girls were now next door completely unaware, I began to dial 999. I managed to explain everything, at some points barely holding it together, the man on the other end of the telephone was very nice he did everything to try and make things slightly easier and assured me that even though we were still on the phone there were already units being made aware of his description and the areas I suggested he may be. He ended the phone call telling me I needed to stay at home and if I heard or knew anymore then I was to ring them back. I just remember sitting on the sofa with my head in my hands trying my hardest not to fall apart, I didn’t know what to do, I felt helpless.

The police had rang Chris dad and let them know they had found him and that they would be bringing the car back to our house and then taking Chris to hospital. They showed up at the house and I recognised the officer right away, I had dealt with him twice before and he was always very good, never treated Chris with anything but kindness. The other policeman who it turned out was a traffic, asked me how old he was and we all agreed it was just so sad. The officer I had met before said to me Chris wasn’t agreeing to go to hospital so he didn’t have a choice but to section him, he told me he would come back and see me at some point before he finished for the night at nine.

I closed the door to them and I broke down, I walked into the kitchen where I had been previously cooking to see the half cook sausages lying on the grill pan. I messaged my neighbour who told me she was giving the girls tea and she would bring me some round and I was to get the girls once I was ready (she is an amazing friend that is for sure). I couldn’t really eat though, but I knew I needed to force even a little bit in because I would need my strength. I got the girls home and to bed, the police officer came back and we had a chat, before he left and then a doctor from the hospital rang (He had been taking to a POS and not a Police cell) asking me what had been going on recently and I filled them in on everything before she said they would be keeping Chris in and he had agreed to stay informally. I got myself into bed but needless to say it was going to be a looooong night!

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‘The Home Treatment Team is oversubscribed’

Things this week haven’t got any better, if anything just continued to get worse. All his social workers, yes still those ‘temporary’ ones could do was tell him he had an appointment to see his psychiatrist on Wednesday like she was going to be able to perform some serious miracles and make everything go away. I managed to get him to his appointment with a lot less sleep than one needs to function somewhat normally and we sat down in the large waiting room in a notoriously hot NHS building. His psychiatrist called him through so I followed with his social worker and sat down in one of the little rooms where they often do depot injections. His psychiatrist talked through all the current problems, his social worker and I filling her in on the bits that Chris would forget about and giving our own opinions. After making my point about his diagnosis and how I thought he had some sort of mood disorder as well I was expecting her to come back with a few different things but not what came next, that shocked me. She actually said, yes I agree and said it sounds likely he has Bipolar, we discussed mood stabilisers for this and it was agreed he would start taking Depakote.

As much as I was pleased we were finally getting somewhere with what is wrong and how to treat it, I was disappointed knowing I was right; she wasn’t able to perform a miracle and that Depakote takes awhile to work so I would be returning home to face the same things as I had been dealing with all week and I was by this point really tired. After leaving the room the psychiatrist was in he went to ask for his depot, his social worker then dropped the bombshell that no one would be seeing him until Monday. My first thoughts were ‘Monday feels a lifetime away’ it really did, was no one taking me seriously, had my letter fallen on deaf ears?

Wednesday night was awful, I was awake all night, Chris kept leaving the house, he was agitated, suicidal, was suffering flashbacks and then coming back, he ended up drinking a bottle of Malibu before falling asleep at 4am, needless to say I was struggling, and I knew that regardless I had to be up at around half past six when the girls woke in the morning to get them all to school.

All week I have been trying to get people to listen to me, all week I have left messages, spoken into one ear of a person for it to float out of the other one, or so it feels to me! All they kept telling me was ‘phone EDT’ or ‘take him to a&e if things change’ which honestly isn’t the best of things like I have pointed out numerous times before. I managed to get hold of someone yesterday who I had been leaving messages for all week and they cut me short to go to a meeting saying ‘it sounds important so I will ring you back later’ Well they never did, and they don’t work Fridays so today I could have just cried while walking back from the doctors, but there was little point, it was so cold the tears would have probably just frozen to my face. Instead I had to hold it together, I was after all pushing the gorgeous little girl along who was looking into my eyes and it is up to me to make sure she is happy, she makes me strong when I could otherwise fall apart.

My health visitor was due to see me this afternoon, and I just went into everything, explained that I had thought about ringing CMHT again but I didn’t feel they were listening and I wasn’t sure how many times I could listen to them find excuses or problems. At least if I didn’t ring I didn’t have to put up with the upset it caused afterwards things for example wouldn’t be any worse. She decided there and then she would ring them and see where on earth we would get, when she finally got through both his social workers were on leave, the manager was also on leave to our astonishment so she asked to speak to the next manager in line. She started explaining everything that was happening, how there was just little to no support, how Chris was getting worse and that again no one was listening. The CPN who had actually only just given Chris his depot injection last week then asked to speak with me. I confirmed everything that had been going on, Chris disappearing, sitting on edges of cliffs, drinking, suffering flashbacks, not sleeping, struggling to keep himself safe and she asked what I think they needed to do. I again said he needed extra support in the form of the Home Treatment Team  but to this she stated that they were ‘over subscribed and were asking the question does this person need to be in hospital’ and ‘how would you feel about that’ for a start I made it clear the fact they were oversubscribed wasn’t my problem and that yes then he would need to be in hospital. She said she would speak to the team and get back to me. My health visitor left promising to phone me later to discuss the outcome.

Basically what happened in the next few hours consisted of the CPN from the CMHT coming out because ‘the HTT wouldn’t accept a referral without me having seen you’ This was far from ideal with me having all the girls home and not wanting them to hear what was going on, so I kept them playing in their bedroom while she was here. She again went through everything again and then she came out with the line ‘This is an ongoing problem for you though isn’t it Chris and do you agree with me that Sarah is just struggling to cope now’ Well I didn’t let him answer before I cut in saying I didn’t agree, that I had written a letter stating every reason why I felt this wasn’t an ongoing problem how Chris was in Crisis, how the flashbacks, severe suicidal thoughts, disappearing, drinking, not sleeping was all new and only happened when Chris gets to Crisis point. How it was obvious no one was listening to me and that I had sat there at the weekend and wondered what had happened with the Chris I know, because at the moment I didn’t recognise him. At this point tears filled my eyes while I battled to hold it together. She apologised and said she didn’t know about this, perhaps this was the junk the HTT had filled her head with? Who knows?

She said she would go back to the office and make the referral but if they accepted it he would ‘be lucky to get a phone call tomorrow and probably wouldn’t be seen until Sunday anyway’ in my eyes this was at least better than nothing and he now waits to hear off them, if he doesn’t then he hasn’t been accepted anyway. Again who knows?

My health visitor gave me a ring to see how things had gone, once I had explained it all and we had both agreed it was far from ideal she said she had done slightly better. She had spoken to our GP who had prescribed Chris some Temazepam to take before bed in the hope he would be able to get some sleep. At least if he got some sleep he would be safe at night time and I would be able to function better during the day because I would get some sleep too. He then booked him in to see Chris on Monday and see what they could help as well; they seemed to put themselves out more than anyone else has so far. I thanked my health visitor for everything she had done and she promised to ring me again when she was back in on Tuesday and see how things went. Weekends come around far too quickly at the moment, what a week!


The weekend

My weekend, I knew it was going to be hard, I was after all completely dreading it and really unsure as to how I was even going to get to Monday. When you looking after someone in a crisis minutes can seem hours, hours can seem like days and well weeks are more like months or years! Saturday was hard, it was exhausting but just when I thought it couldn’t get any worse Chris decided to down a large bottle of Malibu, straight. That is right, not diluted with anything; this for someone used to drinking is a lot, let alone someone who isn’t used to drinking. I had made an attempt to stop him, suggested other ways he could help himself but he wasn’t listening, I may as well have been chatting to myself. He told me he didn’t want to feel like this anymore, he wanted to take all his tablets and the only thing he could think of right now was alcohol.

Once he had finished the lot he fall asleep on the sofa, he woke acting very strange so I saw him up to bed and said goodnight. I locked the house up, got ready for bed but before I could get into it, Chris started coughing and choking, that was my cue for no sleep tonight. I made sure he was ok, before going back downstairs, I hadn’t even reached the bottom before I began to cry, and the more I tried to stop the tears the more they ran down my face. I was crying because it had just hit me that I didn’t know who this was, what had they done with the Chris I knew, he rarely drinks, he wouldn’t dream of drinking himself like this and be at risk of choking on his own vomit. I missed him, I desperately wanted him to cuddle me and tell me everything would be alright but he couldn’t, for I didn’t know where the Chris I recognise was.

Sunday morning was a blur, I had only ever managed to doze on the sofa on and off between running to Chris every time I could hear him choking to see if he was still ok. I had asked for his dad to come over and sit with Chris and the girls while I grabbed some sleep as I was struggling to function, I was shocked when he agreed. He arrived at 11 o’clock and shortly after I went and lay on the bed. Two interruptions later from the girls Chris was saying his dad needed me to go down because he needed to go, I looked at the clock, he hadn’t even been here an hour. Apparently though it was more important for him to go and have the lunch his mum had made him than to help me look after his son and grandchildren. He left, I sighed, I got on with it.

The rest of Sunday was spent guarding the key to the safe, and talking Chris back from two places when he decided once my back was turned to leave. He was agitated, he was pacing, couldn’t keep still, his thoughts were racing and he just kept telling me he didn’t want to be here anymore, and that we would be better without him. He said he was tired of fighting and tired of living like this. It was exhausting; don’t forget I was also doing all the ‘normal’ things you find any mother doing with four children and a house to run on a weekend. Last night I managed to get him to stay in the house, I gave him a Zopiclone and prayed he would sleep; he went to bed, closed his eyes and put it this way… It was one looooong night!


Crisis Care? What is that? Part Three.

Following on from ‘Crisis Care? What is that? Part Two.’ After rearranging childcare, which involved messing people around, again and making sure my meeting at the school didn’t last too long because I needed to get away pretty quickly, I dropped the girls back with Chris dad and returned home. Only two ‘good’ things came out of the next hour, one she actually turned up and two, she was going to get EDT (Emergency Duty Team) to ring Chris on Sunday. To be honest though that is really all she could have done at half past four on a Friday afternoon, because it was easy and at least it was something.

She asked Chris how he was doing and he wasn’t as bad as he had been at that very moment in time (still scoring suicidal thoughts at an 8 though) but it was obvious by looking at him he was struggling, he hadn’t improved any and the worrying thing about all of this was you couldn’t predict how low his mood would dip again at any given moment in time. I had pretty much resided to the fact that we weren’t going to get any more help than this though and it was going to be a very long weekend indeed. She left saying that she ‘might’ come again on Monday but she didn’t know about times and wasn’t sure so could only let us know on Monday morning, this alone wasn’t very comforting and no doubt I will be the one chasing around again for a time.

We ask for more help, they cause us more bother, I tell them he is in crisis, they don’t seem to believe me and overall I sometimes wish I didn’t need to deal with the added stress they cause as well as the natural stress from looking after someone who is unwell and distressed.

Chris isn’t like this all the time, this is in a period of Crisis, he has been drinking, incorrectly taking his medication, not sleeping, having flashbacks and nightmares and his suicidal thoughts are always between an 8 and 10. He has been pacing, agitated, angry, restless, snappy, upset and crying all the time, blank, he’s said some weird things, doesn’t always feel there is hope for him, he doesn’t really do anything, he rarely talks, in fact I don’t even know where Chris is. Apparently though this isn’t crisis it’s how Chris always presents, I put it very bluntly to his social worker if this was how Chris was continuously I couldn’t do it, I couldn’t live like this 24/7. This isn’t Chris and when are they going to start listening to that, I live with him, I see him at his best and at his worst, I know him inside out and I know right now he needs more support, I have been here before but they choose to ignore me. They make me feel like I don’t know him at all. Keeping him busy is going to be the plan this weekend which is again exhausting; this is going to be one hell of a long weekend!

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Crisis Care? What is that? Part Two.

Following on from Crisis Care? What is that? I thought I would continue explaining what has been happening lately, or more to the point what hasn’t been happening. On Wednesday, his social worker showed up to our house, I handed her the letter and then lead the girls upstairs to their bedroom where we coloured, had a pretend teddy bears picnic, discussed where various foods came from like milk and eggs before Chris appeared. His social worker wanted to speak with me before she left. He remained upstairs with them and I went downstairs, his social worker firstly pulled me up on the following line out of my letter which read ‘Firstly you said that for Chris this is an ongoing problem that we all need to learn to manage.’ She said she didn’t agree with this line and wasn’t trying to say he just needed to deal with it, so I again went over exactly what I meant by it and the fact it was why they weren’t getting other services involved. Not sure to this day if she actually understood but she was pleased I had written it all down for her because ‘it helps.’

The plan was that she would be attending the weekly ‘Team meeting’ on the Thursday morning that Chris consultant always attends and they would discuss things with her there, show her my letter and see what they could put in place with her help, that someone would ring us in the afternoon and let us know what they came up with and see how we continued to move forward. I also went into all my reasons as to why I wanted his diagnosis properly sorting now and the excuse ‘it doesn’t matter because we treat the symptoms’ was no longer good enough for me.  She left saying someone would call us the following day and that was that.

Thursday afternoon I received a phone call, it was the social worker who had visited the previous day and it went something like this:

Hello Sarah unfortunately I didn’t make the team meeting this morning due to a disaster at home, the manager made Chris an appointment for him to see his Psychiatrist but unfortunately that isn’t until next Wednesday. How is he doing? Will he speak to me? Goodbye

I answered how he was with the same as when she last saw him, that he was still struggling and very very low, and that because of this I was tired as well. I had then passed the phone to Chris for him to speak to her but all in all the conversation just seemed pretty pointless. I felt let down though, his consultant didn’t see my letter, she didn’t hear anything off either social worker because one doesn’t work Thursdays and the other had her own issues. Again Chris care was suffering because of other people, my letter seemed to fall again upon deaf ears and again I had to get him to the Friday at least until he next saw the other social worker. Even that wasn’t organised, she doesn’t work Thursdays and the other one didn’t know what time she was seeing him for so said she would ring us in the morning to let us know.

On Friday after being told someone would ring us with the time his social worker was due out it was getting later and later when I had had enough of the waiting and decided I would find out for myself. She was out on visits but the receptionist said according to whatever she had in front of her, he was due a visit at one o’clock. Now having this information I made arrangements for the girls to be looked after. With me being worried about how we will manage with no support over the weekend I thought it imperative that I was there when she came. As I was just arriving at Chris dad’s front door my phone started ringing, his dad had had to come back from town early in order for the girls to be looked after and we had got the girls to him, it was half past twelve, then I get the following phone call:

Hello Sarah, I have just left a message on your landline, I am sorry but I can’t come at one o’clock, I have to go and be an appropriate adult at the police station, I have to go. I will come out at 4 o’clock instead and I know this isn’t ideal because of the children. I hope this is ok.

Well to that I replied ‘I am not happy at all, but it is going to have to be isn’t it, I shall see you later’ She apologised again and put the phone down. I was livid, so angry, again Chris was left because of someone else, I couldn’t understand why she was the only person who was able to go and do this. Why wasn’t the duty worker going? Why couldn’t they have sent someone else to Chris? 4 o’clock seemed pointless; I mean she can’t put anything in place that late on in the day. Nothing really made much sense, that was until I got home and listened to the message she had left on our answering machine:

Hi Sarah and Chris, I can’t make it at one o’clock I am DUTY WORKER today and I have to go and be an appropriate adult at the police station. Please let me know if four o’clock is ok instead.

My thoughts were DUTY WORKER? Thanks for mentioning that before, now if she had of done I would have been able to tell her this would have happened, I would have argued his other social worker should arrange to see him so he is guaranteed to be seen before the weekend to review him and see if anything else can be put in place. Not a rush visit at the end of the day so they can tick a box to say he is still alive and will manage himself over the weekend because let’s face it being seen on their way home gives them no time to do any referrals or get him a bed in hospital. Fine for her who can go home without a care in the world while I deal with the reality of how unwell Chris is. At this moment in time though I had to wonder if she would even make it at the end of the day, who knows how long she could have ended up stuck at the police station. All I knew was that Chris wasn’t getting the care he needed… again!

Story continues ‘Crisis Care? What is that? Part Three’