I have been given the opportunity to contribute a blog post to the Involvement blog at Nottinghamshire Healthcare NHS Trust. For Carers Week I shared with them my own blog about caring for my dad who has Alzheimer’s. As is the way with the supportive carers and mental health communities, the Involvement Team kindly guest posted one of my own blog posts and offered me the chance to write another one for them – so here it is. I am also posting this on my own website.
I thought I’d share a little of my own journey as someone who has lived with mental health problems all their life but has recently experienced the double impact of becoming a carer.
I have a mood disorder. Variously, over 54 years, I have been given the labels ‘bipolar’, ‘schizoid’ and ‘recurrent depressive disorder’. I don’t like labels. Occasionally they can be useful – for instance if you need support from medical practitioners when dealing with the benefits system – but mostly they stick us in boxes and make it harder to climb out.
The big turning point for me, in dealing with my mental health, was when I accepted that this is who I am, that there was no simple biological explanation or miracle cure. This is my natural way of being and I simply had to tailor my lifestyle accordingly.
I stopped trying to hold down a full-time job and went part-time. I stopped my battle with the side effects of drugs and worked with a psychotherapist to manage my mental health without medication. It was a long process and my mental health still impacted heavily on my life – I lost several jobs because employers were unsympathetic or discriminatory and relationships were a minefield – but for many years I managed a reasonable balance and pretty happy life.
Then came caring. First my uncle, then my mum with the early stages of vascular dementia, then, after she died, my dad. I have lovely sisters who help as much as they can, but they both live abroad. I worked part-time and had some degree of flexibility, but the older members of my family all lived 200 miles away. I couldn’t take a half-day off work to take my dad to the hospital, I had to take three or four. Eventually, at the beginning of this year, I gave up the struggle and resigned my job – which was, ironically, leading the wonderful Compass project that supports carers of people with dementia in Nottinghamshire.
Caring, for me, is long distance. One of my blog posts Long Distance Caring – How to Stay the Course addresses the particular problems of this situation (find it at: https://annedegruchy.co.uk/2015/05/18/long-distance-caring-how-to-stay-the-course/). Yes, there is a care agency going in to help with my dad’s day-to-day needs, but we have to manage the package, as well as trouble-shooting multiple problems and health needs. There is my dad’s social life and lifts to co-ordinate, his house and dog to maintain, and his finances to deal with under power of attorney. There are crises and visits at short notice. Dad is determined to stay in his own home, and who can blame him? However structure and routine are important to me, and all this change and coming-and-going has been challenging and distressing. It has not been good for my mental health.
I had a breakdown at the end of last year, and another not long after stopping employed work to focus on caring, but at last I feel the tide is beginning to turn. In an attempt to make sense and something positive out of all of this I have registered as self-employed and returned to my writing. I hope to publish my novels. My blog is part of the process of putting my work out there, and I hope people might like to have a look at it! Share the link to my website and you’ll make one carer and weary mental health battler very happy…
© Anne de Gruchy
IF YOU WANT TO KNOW MORE ABOUT THE INVOLVEMENT TEAM…
Nottinghamshire Healthcare NHS Trust provides integrated healthcare services, including mental health, intellectual disability and community health services. The Involvement Team work within the Trust to ensure that service users and carers are involved in service planning and scrutiny of their services. They also provide volunteering opportunities and collect and analyse service user and carer feedback.