acarerseyes

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


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Phoning, chasing answers.

Today I have to make a few phone calls, you would never have guessed I used struggle to ring anyone, would you? Those days have long gone since looking after Chris. Anyway his current CPN has been off for a planned two weeks, She was due back last Tuesday however we were informed yesterday that she hadn’t returned and the Crisis team or Home Treatment team, whichever they want to be known as said she wouldn’t be back for another two weeks. Now as much as I am sorry she isn’t well enough to return and obviously wish her well this does leave me concerned as to where this leaves Chris again. They hadn’t made any arrangements for if she was to be off longer and the crisis team only works with people for a maximum of four weeks, this would mean they are looking to taper off their support soon but with what in place?

So today once again it falls upon me to ring up the CMHT manager and find out exactly what is going on and what kind of support they are putting in place for Chris until his CPN is well enough to return to work.  I can’t help but wondering why this always happens to us? Chris already has issues around trust but they aren’t exactly helping to make that any easier at the moment are they when over the past couple of months his social worker left, his CPN has gone on sick leave and he’s been given numerous stand in’s for her which appears to have withered out to nothing.

I know this morning they are all more than likely in their weekly team meeting so I plan on calling later today to find out exactly what is going on and thank my lucky stars that once again Chris has me to help him, what about those that don’t have someone to fight their corner? What happens to them?

His CPN had been due to see him today and if the crisis team hadn’t of spoken to us about it last night then Chris would have been unaware that she wasn’t even back yet. Wouldn’t have been a nice way to find out when she would have failed to turn up for the appointment with him.

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‘How do you do it?’

I am often asked ‘how do you do it?’ ‘How do you cope with everything?’  And the honest answer to that question is, I don’t know, I just have too with not a lot of choice. The thing is I just have to keep going regardless because without me I am not sure what would happen. That in itself is pretty hard, living knowing I can’t just break down. I am not going to lie though, over a year ago now when things were dire I went to see my doctor, the one who is currently on Maternity leave, I kept my issues with her and Chris issues with the other doctor, just so I was treated for ME. Anyway I remember telling her how low I was and how I felt stuck, how I couldn’t bear the thought of living like this, waking up every day to what I had to deal with but I couldn’t bear the thought that if I took the only way out I would leave my children without their mother. It was an awful feeling, I felt trapped, like I didn’t have a way out.

Anyway I battled through it with a lot of hard work and belief that things would have to get better. I don’t often go to church, I do have a faith, I believe in God and when things are bad I pray that someone or something will help me through. In time things did get more bearable, and the trapped feeling disappeared.

I had counselling earlier in the year, at first I didn’t know if it was going to be of any help but it was amazing, because by voicing aloud my feels I was able to recognise I have naturally got coping mechanisms I didn’t realise I had.  The thing about that meant I realised that for one I didn’t get through it because I was ‘lucky’ this time and two that I could apply the same mechanisms and strategies again to help me through the next time.

The stress of professionals that were meant to be helping made everything so much more unbearable, all the time I was thinking we were fighting them, that they were working against me and not with me.  I still feel now that there is a lot of responsibility placed on me to look after him that sometimes gets in the way of us just being a couple, they forget that what they provide for five minutes, half an hour, maybe even an hour, I provide pretty much twenty-four hours a day seven days a week.

Tonight the Crisis team came out, Chris has been very depressed, was feeling suicidal prior to their visit, they came to explaining medication to me and said they were giving me a week’s worth of medication. I trusted that is was why wouldn’t I? Until I checked it once they had gone and realised that they had given me two weeks’ worth, so now I have loads of tablets in the house that I am not comfortable with because he has been known before to get the key to the safe and overdose. It takes away some of the impulsivity but that is about all. He is seeing our GP tomorrow, I shall be handing them to him.

So touching back on the whole how do I cope thing… An amazing mum who will give up her time every evening regardless of what she is doing to listen to me ramble on, the sheer fact I have to manage no matter how hard, the coping skills I have already learnt and most important of all, Love, I love my girls and Chris more than I could explain and more than anything I know they love me.


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The dreaded letter

Today is the day I have been waiting anxiously for, for some time, I knew what time of year it would be but didn’t know exactly when the dreaded letter would slip through my letter box onto the carpet below.  Today was that day; I picked up the letters and on the back of one read the word I fear… ATOS!

Inside the envelope a letter, a pink form and a stamped addressed envelope, the letter explaining exactly what we were meant to do and how long in which we had to do it in. We need to fill in the pink form by a set date, send it back in the envelope and wait to hear if Chris would then need a medical, also known as his work capability assessment. To put it very bluntly having to prove to the government how unwell Chris is which means him working at the moment impossible.  It means dragging every little detail up about how his life is effected and how he is feeling.

Getting a letter from ATOS will never have good timing but landing right at the moment when I am trying to keep stress to a minimum for Chris is just horrendous. His mood changed straight away as I try and reassure him not to worry about it and we will take one step at a time. First step to fill the form in and send it back, then we shall see what is suggested from there.  I just hope that I can keep him safe after we have dragged up everything again in which to complete the form, as you can imagine how distressing it can be to start raking it all up whilst already feeling very depressed.


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Update on housing

Without having to go into the whole story, we aren’t moving and wouldn’t have been even if Chris was well enough because the tenant whose house we were having wanted to extend the date on her ‘Termination of Tenancy’ form for the goodness knows how many time! This lead the housing provider to advise her that she withdrew it all together which for us was a blessing in disguise with Chris not being well enough to move now anyway. It does make me cross because a big trigger for him was all the messing around when it came to moving.

Anyway because they pulled out they can’t take us off the list because it was completely out of my control. So it’s back to the drawing board, but it is a weight lifted off my shoulders for the time being.  It is one less immediate worry to contend with, it is a shame this woman was then as nice as pie giving me this news considering the way she spoke to me last week.

 

The previous post about housing can be seen here.


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Lets kick you while you are down.

At the beginning of August we were offered a chance to move to a bigger house, although I knew it would be really stressful I also knew at one day we would have to do it. We accepted and were told we would be moving around the 20th August giving us two weeks to pack our belongings and move. My mum bless her had made the trip all the way up from her holiday in Devon in order to help us and we had packed everything up. We rang the people dealing with our move once all the non essentials were packed to confirm more information when they decided to inform us we wouldn’t be moving now until the beginning of September.  I wasn’t impressed they had left us to find it out and hadn’t contacted us themselves sooner.

As we were getting closer to the beginning of September and the girls going back to school, we were sat in the doctors when Chris phone rang, it was the person dealing with our move, she was informing us that we now wouldn’t be moving until the end of September because of a ‘court case’ to do with the previous tenant, though the court case was nothing housing related. She told us she would keep us up to date about what would be happening. This appeared not to be the case and a week ago we gave her a ring asking for an update, there was apparently nothing else to tell us. So deciding that there was nothing we could do anytime soon I put the move to the back of my head.

Sadly as you already know, Chris took a huge overdose on the 8th September, and is currently very unwell and involved with the Home treatment team (formally known as the crisis team) Knowing that we are in no position at all to move house at the moment I decided to try and contact the woman dealing with us. She was unavailable so I left a message and commenced the wait for her to get back to me. I waited and waited and waited.

Yesterday Chris gets a call to his mobile, it was this woman, she wanted to deal with him, he spoke to her for awhile before the call was ended with her ringing him back. He was starting to get upset about what she had been saying but was ringing back once she had spoken to someone else. I agreed with him that when she rang back he would insist she spoke to me because at the moment he isn’t well enough to be dealing with problems he doesn’t need to deal with. She called again and Chris did exactly that handing over the phone to me.

Now I found myself in the most awful situation I had possibly ever been in, explaining how drastically our circumstances had changed, how things were nowhere near stable enough to move. I had to go into detail about how bad things had been with Chris at the weekend because it was almost like she didn’t believe what I was saying, like I would be making up some like this! It was awful, she constantly spoke over me, she didn’t listen to what I was saying and even more she was now going to be removing us from the housing list if I didn’t move and there was nothing I could do about it. Time and time again I was having to try and explain that had we moved when she stated we would have been moved ages ago, how with Chris how he is things can change quickly and this wasn’t my fault but by moving in these circumstances could be detrimental to us as a family. By the time this conversation was finished, she had reduced me to tears that were now pouring down my face, I felt completely drained, she had made me feel like a complete inconvenience, like I was making her job harder and that I should just do as she says and move or I would be punished, punished because my partner is too unwell at the moment.  Again I had to wait for her to speak to someone and ring me back, a conversation that again I knew I didn’t want to have with her.

She rang back, I was only just getting myself together from the first attack, she told me I could have until Friday 21st September to think about it and if I didn’t agree to move after that I would be removed from the housing list. I could barely take in what she was telling me anymore, the fight in me had completely vanished, I didn’t need this, and I didn’t need someone else to start making life any harder than it already is. I ended the phone call, I will seek support of any professional agreeing to back me up and if at the end of the day they still take us of the list then so be it, right now moving house would be like I said before detrimental to my family, the family I am doing my best to protect and if that means they remove me off their housing list because Chris is unwell then be my guest.


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They could only make it worse part two.

This is the second installment, the first can be found here.

After finally getting Chris referred to the Crisis team they had told his CPN that they wouldn’t be making contact until the following day to make arrangements to come out and see him so his CPN had checked with me I had the number for the emergency duty team and if need be we were to attend A&E if things were extremely bad that night.  Our doctor had already arranged to ring Chris on Tuesday evening, so when she rang and I started to fill her in on the events of the weekend she made arrangements for Chris to go and see her at the surgery. We went up there Tuesday evening and she was pretty shocked at what had gone on, she was even more surprised that Chris didn’t even know when he could resume his medication after the overdose because I myself hadn’t want to give it him and risk poisoning him further.  She wrote to his consultant psychiatrist and gave us the letter to hand to her the following day at depot clinic.

Dosed up on Zopiclone Chris was ok for the night, I however was far from able to sleep after the day’s events, I couldn’t relax or switch off for sheer worry about what was going to happen and if things were actually going to get sorted. As much as it was difficult to get out of bed and start my morning i knew once again my children and Chris needed me, brave face applied I started my day.

Once all the girls were once again dropped off to school and playgroup I went with Chris for his weekly trip to the depot clinic, while we were booking in we asked if he could speak to his consultant, the lovely receptionist rang through and the doctor agreed to come out and see him, we sat down in our usual seats and waited until the doctor came out. We had barely sat down when she came over to see us, I handed her the letter from our doctor, she read it, the shock of her face said it all before asking how he was and deciding that she would leave it up to the Crisis team to decide when they wanted to start it as they could monitor it. She then said she would contact our GP and let them know. We then sat back down and commenced the long wait for his depot injection.

On arriving home after his depot and having picked the two girls up from school and playgroup, dropping them off to Grandads we started our wait for the crisis team, they were coming out to do an assessment and see if they could help Chris and if they could, in what way.  They arrived and the feeling of dread lurked in my stomach as i know from past experience the crisis team always goes one of two ways, it either really helps or more commonly causes a crisis themselves by making things even worse. They appeared friendly and were trying to help; they seemed a lot more organised since their reshuffle at the beginning of the year. They asked Chris loads of questions and though I couldn’t help but pick up on the number of times they made reference to the number of times Chris had been under them before, which was beginning to get a bit uncalled for. They then brought up the issue of the KEY, the one that locks the safe, the one that I keep on me except for at night when I am sleeping, the thing that takes away some of the impulsiveness of Chris to overdose. Chris explained that he had been able to sneak the key off me, now as if I don’t already feel bad enough myself then it feels like all eyes are on me while the ground swallows me up for being such a rubbish carer.  They continued to talk to him at one point referring to the fact that ‘I’m sure Sarah would rather sleep with the key than risk you taking an overdose’ that is where in my opinion they crossed the line, joke, no joke, I don’t know, it wasn’t funny nor appropriate and honestly if I am having to go to such lengths as that to keep Chris safe then it sure begs the question, should he be in hospital?

Once they had made arrangements to sort out his new anti depressant with his consultant and get back to us on when he could start it and a time that was suitable to visit again they had left and the house was restored to its once quiet self.


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They could only make it worse…

****Some people may find this triggering****

It all started last Friday when Chris had been struggling for days becoming more and more impulsive and suicidal, not sleeping properly, not eating, threatening suicide. He had given his CPN a call and asked to be referred to the crisis team. She decided she would speak to her manager and ring Chris back that afternoon. When she contacted him back they weren’t going to refer him to the crisis team because ‘they wouldn’t accept you at his point’ but agreed that he needed someone to take her place while she was on leave, she then said she would ring Chris on Monday to ‘see how the weekend has gone’ and with that they ended the call.

On Saturday Chris was having an awful day, he couldn’t settle, he was agitated, he wasn’t himself at all, he didn’t seem right but I couldn’t really put my finger on anything directly. That evening he left the house and I wondered where he had gone, I tried not to immediately panic as sometimes he does randomly take himself off for a walk etc. Next minute I get a text from Chris saying he had taken a load of tablets, well I felt sick, and dread and panic shook my body. How was I here and he goodness knows where with tablets poisoning his body. I managed to get hold of him and convinced him to ring an ambulance if he wouldn’t tell me where he was. He did and was taken straight to hospital.

On arrival to hospital Chris was placed in Resus, his speech was slurred, could hardly walk, he was short of breath, very confused and his heart wasn’t working correctly.  I had checked the safe and found a huge chunk of medication missing, more or less all of what he is prescribed had gone, and once again I felt sick, thinking he must have taken around thirty plus tablets. He was moved from Resus up to a medical ward where he was placed onto a cardio telemetry to monitor his heart. All this was happening while I was at home, worried sick and unable to leave my gorgeous girls to be with him, especially as Cora is breastfed. I didn’t sleep for worry, I didn’t know what was happening and I was scared of losing the person I love dearly, the father of my children.

The following morning Chris had an ECG and was told if everything was ok with his heart they would be able to get a psychiatrist to come up and see him. He had the ECG and thank god all was well, the doctor rang for a psychiatrist to come and see him and Chris began the wait. He waited and waited and waited until the evening was in sight, he then asked a nurse about what was happening, they found out the doctor would be up to see him between the hour of four and five.

The psychiatrist arrived and spoke very briefly with Chris about what had happened, how he wanted to die, he hadn’t regretted it and that he still felt suicidal. It was agreed he would refer him to the crisis team and if Chris needed help in the meantime he was to call them. Chris left the hospital to come home and notify me of all that had happened, it turned out he had taken almost fifty tablets. I was pleased to be able to cuddle him, kiss him, I was pleased he was ok, he was alive.

Monday came and he wasn’t great, I was trying to keep him busy, five o’clock came and went and his CPN hadn’t called. He was really struggling so decided to ring and speak to the crisis team about the referral as he hadn’t heard anything. They told him they had spoken to the doctor on the ward and he hadn’t referred him and to contact his CPN in the morning. Chris was now feeling even worse than before, his emotions were building and I was worried. Once I was sure he was asleep i began to cry, and cry, and cry, how could this be happening again? How can this be?

Tuesday morning, I woke up from my half dozing state after one awful night of trying to sleep with all this worry with the raw emotion from the night before. I got the girls to school and playgroup and returned home to make a phone call to the CMHT manager, I needed to do something, I couldn’t just leave it, I was appalled and upset, extremely let down, not only me but they let Chris down too, they had let our family down.  I picked up the phone, dialled the number and waited for the familiar voice of a receptionist to pick up the phone, I requested to speak with the manager and then waited, the annoying hold tone beeping down my ear, my heart beating fast with upset and worry.

I explained what I knew of the conversation between him and CPN on Friday, what was going to happen, and that she had never rang the day before. I then went on to ask if he knew about the events of the weekend, they didn’t have a clue, no one realised, no one had been told and now it was his job to go and find answers to my questions. He was to ring me back as soon as he had any information for me, I hoped he would.

A couple of hours later i received the call back from the manager, he had been able to contact the crisis team who had informed him that the doctor had gone to make the referral but once speaking with colleagues had taken it back and decided against it and then well just forgot to tell anyone, including the most important person, Chris in all this. Not only hadn’t he referred him he had also then not even notified his care coordinator that any of this had even happened over the weekend. To top this off the crisis team then wouldn’t take a referral off the manager because he is a CPN and was basically out ranked by the doctor who had decided it wasn’t necessary. The plan was then to see Chris at home and get up to date information on how he was and if Crisis team was still needed then they would base it on more up to date information. This went ahead and his CPN agreed Crisis team needed to be involved and went back to complete the paperwork for the referral. She put it through and the crisis team accepted.

To be continued…..