Is My Care Plan Written About A Stranger?

When your care plan doesn’t reflect you and your needs

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There are times when I feel Mental Health professionals just do not understand Dissociative Identity Disorder and what it’s like to live with it. There are times when I feel that I am judged by my time in hospital and it appears assumptions rather than facts about me rule the day. Unfortunately the arrival of my much awaited care plan signalled it was one of those times. It’s clear from reading the document which outlines my care needs, the interventions put in place and potential signs of relapse, people still need educating about D.I.D.

I knew it was unlikely to be positive when the boxes which stated I and my carer or significant other had been involved in developing the plan were marked ‘ Yes’ . This is the first time I have seen a care plan in over a year and neither I nor my family have been consulted about it at all. More frustratingly I guess is the fact we have only received a copy because we have asked repeatedly if one still existed.

It seemed strange to see a note attached to the plan which my care coordinator had written saying ‘we can discuss any amendments on my next visit’, amendments I thought, I want to re write the whole darn thing! Yes it’s that bad really, which is sad given I’ve been with this particular team for over 8 years and they know about my diagnosis. It’s even more bewildering given that some though perhaps not my current care coordinator have been given specific training on Dissociative disorders.

I’m more conscious though of the glaring misconceptions that stare at out at me, the plan has a list of skills and support they expect my PA’s to provide none of which mention dealing with my alters; the many parts of me. The person who employs my PA’s hasn’t been consulted about these either so was rather taken aback when I showed them the care plan. My PA’s are now meant to be specialist mental health care providers apparently, of course they aren’t, because to have this would cost far more than the Local Authority will fund. But my PA’s do provide valuable help, support and assistance on a day to day basis and they help deal with and interact with the many parts of me. That’s a skill in itself and one that needs to be recognised…but it is not even mentioned in the plan.

My community mental health team seem to think I can just stop switching, on command! The plan states ‘carol to undertake independent activities where she is required to remain in an adult state’. I liked the word ‘required’ it seems so out of sync with what it is like living with D.I.D, after all I can try and manage my time, juggle the needs of the various parts of me but I can’t just switch off the switching. Yes I try at times to stay focused, it takes a great deal of effort, I know I still switch from one adult me to another and at times will suddenly descend into a child part. I’m working hard to work in cooperation, watch and observe as little parts of me take control of this body we share, but I have no ability to ‘remain’ in an adult state at command. It’s simply not yet a feasible option.

I’m quite good at covering it up and people who don’t know me well may not even notice the switches that take place, but that’s the same for most people I know with D.I.D. The majority of people I interact with don’t notice the internal struggles that go on constantly as I try and remain at least aware of what my parts are doing. But I’m still losing time, I’m still having periods each day when I wonder what the hell I have been doing. I have to balance my time and my days to try and give myself a fighting chance each day and yet they expect me to just on command remain adult. I wanted to laugh because they refer to the time I don’t have care and they assume I stay adult me in this time. This is more than half my week and yet they assume I can just be an adult! I think they might be surprised if they saw me at these times, because their assumptions are so far of reality it’s quite sad.

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Take for instance the other day I had no PA’s I watched cartoons well my little me’s did, and then we had breakfast which was chocolate. (I observed but had no control). Then I lost time, apparently I snoozed and had a mid morning nap before even more cartoons. The rest of the day I switched from one part to another and back again, some were adult parts, some teens and some little parts. I think I failed if they expect me to ‘remain adult’ oh well I live with D.I.D., the professionals clearly don’t understand it.
The plan goes on to talk about how my daughter and I are meant to monitor and report back any risky behaviours and it says ‘ increase periods of stabilisation and reduce the risks of self harm or harm to others’ I have never harmed others, the only person I ever hurt was myself. I find this assumption so offensive, just because I have self harmed, just because I have been in secure hospital settings does not mean I have ever been a risk to others! How dare these people treat me as if I maybe a risk. I’m going to be asking for their proof that I have ever been a risk to others because I know I haven’t and I want the comment removed.

The plan outlines my signs of relapse, well given the signs they suggest are indicative of a relapse I should be in a hospital right now. Well dissociating on a daily basis is deemed a sign of relapse and having flashbacks is too. I’m doomed if these stay on my list, I have D.I.D for goodness sake of course I will dissociate! I also want to know which individual never has arguments with their family, because if I do it’s a sign of relapse. Yes seriously the signs are so silly even my family are dumbfounded by them.

Finally there is that solutions box to relapse, it’s great even though I have no PRN medication it’s listed as a technique to use. But worst of all 5 years after my last hospital admission the threat of readmission still remains, the plan states ‘if risks continue to escalate to a level above carols ability to cope in the community consider hospital admission’ why? Surely there has to be other solutions first, maybe extra therapy. They assume increased dissociating is a risk, with such signs in the plan I can’t win, if relapse and risk are dissociating, if it’s having arguments with my family how can I win. I have a dissociative disorder of course I will dissociate and when I’m stressed or have increased anxiety I will dissociate more frequently. That doesn’t mean I need to be locked away in a hospital. It means I need help maybe support to deal with the stress and the anxiety, why do mental health professionals still look at the problem they can see and not the cause.

My plan is an absolute joke, it’s so poor it’s insulting and as I maybe changing teams soon it needs more than ever to be right. I don’t need a battle right now I want them to just get it right, to understand me and my D.I.D, is that too much to ask?

Copyright DID Dispatches 2014

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CHANGE

CHANGE

 

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Facing a period of change & uncertainty – I am slowly realising why I find change so hard

This week I have faced some changes in my daily life, for the past 21months I have had a regular Personal Assistant one who all parts of me had become used to. This was a person who we felt comfortable being ourselves with, a person who wasn’t going to run a mile if we suddenly switched alters, and who seemed to understand D.I.D. This week that person has moved on to pastures new and thus the search now begins for a new person to help support me.

This of course is not so straight forward, finding people who want to support someone like me is never easy and I need someone who is doing this as a vocation and not just for a wage. I have had my fair share of support staff since I left hospital and we have had seen both good and bad examples of support staff.

Given I am trying to lead as normal a life as is possible with Dissociative Identity Disorder I don’t need people to treat me as if I’m incapable or some sort of invalid, I need people who empower, encourage and support me. I guess I need them to help me redevelop skills that I lost during my lengthy stays in hospital when I did become institutionalised and to learn skills which because of my past have never really fully developed yet.

My PA’s are the lifeline that helps particularly when I switch alters to ensure we keep safe, that help us when we struggle and find ourselves ruminating or with thoughts of desperation and self harm. They are if I’m honest a crucial element of my being able to stay out of hospital, I don’t think that I could have stopped that revolving door of admissions without them.

When I first came out of hospital I hadn’t made a meal or a drink in more than 2 years, I had literally done no activities of daily living unsupervised for over 30 months it was so deskilling. I remember at the start asking for permission to make a simple cup of tea, I felt intimidated by the kettle, I hadn’t used one in what felt like forever and I certainly hadn’t been allowed to just get a drink at anytime of the day or night.

Hospitalisation was dehumanising in so many ways, imagine having to ask for every single drink being forced to drink from a plastic beaker and knowing the staff control everything and could and did quite often say No to a drink. Well that was what life was like for me in the secure units, it was simply controlling, demeaning and soul destroying. Acute wards were slightly better there was a drinks machine that operated set hours and as long as it worked offered some choice, but still the staff or the hospital managers dictated the times we could drink, often 8am till 11pm. One ward I was on allowed 6 drinks per patient per day which worked as long as no one used your allowance as well as their own, thus robbing you of a drink. The staff seemed unable to see the injustice if a patient managed to use all their allowance and other patients too. It was just simply impossible for extra drinks to be provided it felt like a form of control and one I never quite settled with.

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So when I came home it did take a while to get use to the fact I didn’t need to seek permission anymore, that I had freedom and choice. It was the same with food, I’d lived in a regime of set meal times, set food and often not that tasty either. If I’m honest the control I endured was similar to that I faced as a child, my main abuser was a primary care giver and she controlled most of what went into my mouth. Food wasn’t fun very often in fact it was a form control and punishment, thus to this day I have a problem with eating. Being in a controlling hospital environment didn’t help me deal with my eating issues it just exacerbated them and recreated traumatic situations and triggered past memories.

Because of the control in hospital and the deskilling it caused my support staff are important and they help me in so many ways, I am certain that currently they are a necessary part of my life and so finding a new one is a challenge. I need to replace my PA as quickly as possible in order to maintain progress, this is an important issue I am so determined to maintain the progress  I have made thus far. The departure of a PA is  always going to result in a period of change and uncertainty, it’s simply impossible for such events to not cause change and uncertainty, but this is something we have to deal with.

So now as one chapter ends my family and I face a bit of a challenge as we search for a new PA, and belief me that isn’t easy especially for someone with Dissociative Identity Disorder. As one of the difficulties that I have is that I find trusting people really tough and of course it’s not only me who has to trust but all the alters too. Now yes I understand my alters are parts of me but all those parts need to learn to trust individuals and because of the past we all have issues with uncertainty, new relationships and having to basically learn to trust a stranger.

Then of course there is the issue of change, having a new PA is a change which won’t be straight forward or easy. I find change really tough to cope with be that a new person, new place or new situation change is fraught with anxiety and leads me to feel really unsettled and destabilised. I’m already having to do work internally about the changes we face in preparation of a us finding a new PA. I have spent the past couple of weeks preparing myself and my alters; the other parts of me, for the departure of the PA who had become part of our regular routine.

Change is tough for many reasons, but I guess I lived in chaos for years, my childhood was filled with change, be that different homes, schools or abusers. Change usually meant something bad in those days and I believe it has shaped how I view change to this day.

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In the past year I have faced many changes, I have lost one therapist and gained my psychologist, a significant friendship has ended, a relative has died, my care plan has changed and now this current change. Yet if I’m realistic we have coped with all the other changes this past year we have dealt with them and survived so there is a chance, a good chance that we will deal this latest change.

I am aware of the issues, aware of my difficulties with change and trust and I have the support of my family who want so much to ensure we employ the right person to help me keep moving forwards. Perhaps we are slowly over time getting better at dealing with change, it’s just a challenge after all that we have to face and deal with.

Hopefully in a few weeks I’ll be able to write about how I’ve coped with this change to my daily life, hopefully it will be a positive update. I guess I can hope that this change is going to be ok of course I don’t know and that’s what’s scary, but then in all truth nothing in anyone’s life is ever certain. My main task right now is to try and keep all of me settled so that we can deal with this change, so that we can overcome this legacy from my past of fearing change and learn to deal with the issues of trust and change. Wish me luck!

Copyright DID Dispatches 2014

 

 

Adventures in the Kitchen

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Learning to work collaboratively with my alters
Success comes in many forms and for someone like me it comes in ways others might just take for granted or feel are insignificant.

Yet I am slowly beginning to realise with the help of my psychologist that I can attempt these small steps of progress which seem alien and unfamiliar. Now not everyone with Dissociative Identity Disorder is the same, but for me I lack many skills which are crucial to everyday life. I switch alters in the kitchen and find cooking a bit of a disaster and I have spent so many years in this fog of dissociation that many developmental stages of life have passed us by.

I can at times be terrified of the phone ringing, overwhelmed beyond belief by paperwork and it’s not uncommon for me to pay a bill twice due to forgetting it’s been dealt with. Many things trigger me, well various alters are impacted by different triggers, sounds, sights, smells and events, the biggest issues being the bathroom which impacts a younger part of me and food which causes huge issues for us too; so having support has enabled me to function a little better.

However with support and guidance I am trying to help build relationships with the differing parts of me, my alters in the hope we can deal with some of these issues and learn the skills we have lacked for so long. A big part of this is about developing trust internally, building self confidence and utilising techniques we are only just learning about.

My psychologist is encouraging me to keep working at internal communication and to use this to try and encourage me and my parts to work collectively. Now of course I don’t have ordinary verbal dialogue with the alters, it is very much a one sided conversation inside my head currently yet that gives us hope.

Yesterday I set myself a challenge which I could only hope would work, my PA was off sick and the family were busy but we needed to eat. I’m terrified of food at times, we certainly feel guilty and bad for eating it’s as if somehow my default position is that we are not worthy of food and it’s bad, dangerous somehow. Eating disorders plagued us in previous years but I have now come to accept that we have to eat even if I don’t want to; otherwise the family and others will force us too anyway. This has led to one alter having a sweet tooth and eating children’s sweeties, but the rest of me eat out of duty with a sense of eating because we have to. Hence today food isn’t fun and the kitchen is frightening and triggering, so we often switch during meals and our skills in the kitchen are poor.

Yet with a sense of we need to eat in my mind I knew we needed to make tea, my worst fears were cooking two things at once as we burn things and switching mid way through leads to disaster. Following advice from my psychologist I broke down tasks and gave the other parts of me the task of telling me when the toast was ready, whilst I would focus on cooking baked beans. The tension was palpable in my kitchen but I kept telling myself and the alters we could do this, we’d be safe and I believed in them. Now I wasn’t alone in the house my son was around but due to his own disability needs he requires care so I gave him the task of if you smell burning tell me and if mum switches turn things off.

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We had no idea if this would work I had visions of burnt toast and burnt beans, really I am normally that bad on my own but I knew we had to try. It was I guess taking a calculated risk but it was a risk worth taking if we want to move forward. I couldn’t of course be certain any other part of me would listen, take notice of what I’d asked I had to trust them and yes that felt scary.

As I felt myself being pulled to look at the toast I began to believe this might work, the outcome was edible beans on toast. Yes we had managed to work together for a few brief moments, not to switch but to collaborate at achieving tea. I felt like I was having the longest internal dialogue with the alters as I ate, praising and thanking them for their help as I had been advised to do. I was in truth giving positive reinforcement to the other parts of me and in some ways to myself Carol, yes I felt pleased and in many ways proud of myself and the alters. I know I was exhausted afterwards it was extremely tiring and I hadn’t expected that strangely.

This simple tea was a huge success for us it was a step forward and it needed recognition, some of my alters had listened to me and acted as I had requested. I am so proud of those parts of me.

Whilst I cannot be certain we will achieve this type of success in the future we will certainly be trying again in the hope that me and my alters can learn to work together as a team.

Copyright DID Dispatches 2014