A carer's story from Dumfries and Galloway

I care for my partner, who 9 years ago was finally diagnosed with obsessive compulsive disorder after living and struggling with it for all his adult life. Both he and I knew very little about this disorder, although he was only too aware of what it was like for him and the havoc it had already wreaked in his life.

Typically, we were both left to struggle on alone, post diagnosis. Gradually a care team evolved – over several years.

I didn’t feel this was anything to do with me. They didn’t involve me and I didn’t feel it was anything to do with me. Meanwhile the impact of the OCD on our lives and relationship was profound.

Five years on, and my partner’s CPN ( since moved out of region and been replaced) mentioned to me that NSF Scotland (now Support in Mind Scotland) in Dumfries and Galloway would be a good place to look for support for both of us. He explained that there was a carer’s support worker. This was the first time the word ‘carer’ had been attributed to me and initially it didn’t seem relevant.

It felt like an indulgence. I was his partner who supported him, ‘managed’ many aspects of his life for him, and struggled with the effects of his illness. A carer was someone who pushed wheel chairs and helped wash and dress.

Several months later I contacted the carer’s support worker and we met at the NSF Scotland centre in Annan. At this stage I was not acknowledging the implications for myself of my partner’s illness, and of my evolving role as carer.

Consequently I still felt this meeting was irrelevant and, in fact, a case of me wasting the time of Support in Mind Scotland. I hasten to add that this was entirely my perception, and nothing to do with the support worker! It was simply a case of my mind and ears where not yet open to the whole situation that I was in.

Maybe a year later, as things grew increasingly more difficult and my despair grew, I again contacted Support in Mind Scotland for support. A new support worker was by then in post (a manager filling the role on a temporary basis) and this time I was ready to ‘spill the beans’ about the whole mess that my home life had become.

The support worker treated me with great sensitivity and professionalism, and really validated my carer’s role for me. Over several sessions at the centre in Annan I really began to see that it wasn’t my imagination, I wasn’t over reacting, and I was still a person within the situation who had my own needs. My needs, at that time, were quite simply these 1-to-1 sessions that gave me space, a voice, and offered me advice.

The carer groups were mentioned to me but at this stage of my internal chaos I was not comfortable to ‘go public’ with my situation. It was more about beginning to accept the situation for myself.

These sessions got me through a very dark phase. And as a result of the time with the support worker I began to feel more empowered within my home rather than a helpless victim of circumstances.

Another year on, and a new carer’s support worker in post, I again hit a dark patch. A couple of 1 – to – 1 sessions again helped me to see light at the end of the tunnel, and this time when the carer groups were suggested, I felt that it would be a good thing to get involved with. At this stage it was less for the social side and more to do with the many really relevant guest speakers that are always invited along.

So, I started to going to the monthly group meetings in Dumfries, and quickly realized that I was not alone in my chaos. I became able to laugh about it, rant about it, share it.

The Dumfries and Galloway Support in Mind Scotland carer’s support is now my first ‘port of call’ when I need information, advice or help through another dark patch. One e-mail or phone call is all it takes to get help. There is nowhere else to get this ‘one-stop-shop’ service.

A great example of how it all works for me is my carer’s assessment. I was totally unaware that such a thing existed, but as I sat and listened to more and more anecdotes and guest speakers at the carer group meetings making reference to these mythical things, and being encouraged by the support worker to pursue one for myself, I began to feel that, yes, it was something that I should pursue.

Of course, it wasn’t that simple! It was only through the involvement and persistence of the carer support worker, and her involving further professionals, that I finally had a successful outcome.

More examples of how this Support in Mind Scotland ‘one-stop-shop’ works for me are the contacts that I have made via the support worker. Carer stress management training days, a place on the 2010 Prospect weekend, a social worker of my own are just some of these examples.