On April 17th, 2017 something terrible happened to someone I love, and on that day I became a carer. This was also the day I lost my voice. I could still make myself heard and understood, but I found I had no words to describe the events and feelings that were rocking my world. Since that day I have struggled to write, and I often sit with a blank screen in front of me. In the past I always found writing easy, and often wrote for pleasure, or as a way to reflect on my experience. But lately, the times that I do manage to capture an idea I find that the words seem to lack substance by the time they reach my page.
I also found that I was losing my voice around others. Well-meaning friends and family who wanted to encourage and share their concern would ask me for updates. I found myself unable to provide more than a “doing okay”, or “coming along” because I could not give them the answer that they craved, the answer that I also craved. I wanted to be able to report about a life restored to normal, to offer hopes of new developments. I didn’t want to talk about the realities of a “new normal”, and I certainly had enough grief of my own without taking on theirs as well.
This inability to communicate about grief, about change, about anxiety, it painted wide streaks of loneliness across my days. I desperately wanted to talk about it all to anyone who would listen, but I couldn’t think of a way that didn’t feel selfishly skewed to be about me. I couldn’t figure out a way to explain the fears and worries that kept me awake at 3am, and whenever I tried I fell to pieces. Though many people want to be there for you in these moments, very few of them are prepared to deal with a full meltdown of emotional control. So instead, whenever I heard a story in conversation or watched a show that was even a bit emotional, I wept. Not because it was sad, but because I was sad and had no outlet.
It’s been about a year now, and I no longer burst into tears daily, but I still haven’t really found my voice. However, I have had some time to reflect on my experiences of becoming a carer. I can see that the adjustment to my new role was traumatic and sudden, but I am learning to take each day individually rather than imagining the vista of thousands of days in my future just like this one. I recognise that my experience is only my experience and I cannot base my assumptions of the caring role of others on my realities. But it has struck me how glibly, how easily I used to write and talk about “listening to voice of the carer”, when my own experience has been one in which my voice as a carer was inaccessible. Even if I had had the time and mental energy required to fill out a survey or attend a focus group, my voice deserted me at a time when I desperately needed it to shout about what I needed and what my family needed.
I don’t write about this experience because I feel the need to explain myself, I write it for others who are who I was before April 17, 2017. I would have thought that in my situation I would have been more prepared, or at least more adaptable. I have spent the last 28 years working with people living with dementia and with their carers. I have talked with them, laughed with them, and cried with them. But my professional experience has taught me far less than I had imagined about the reality of becoming a carer myself.
If someone were to ask me tomorrow how they could hear my voice as a carer, and get my input into the services I or my loved one needed to access, I would say: be flexible with me, this is less about your questions than you realise. It is about my life, and some days my voice may be available to me, and some days it may not. It is not like recounting a mildly difficult trip to the grocers, it is about pulling apart the complicated layers of Velcro that hold my life and my memories together and hoping the right stuff spills out. Take the time to build my trust and recognise that if I am able to tell you what you want to know, use that information carefully, respond to me empathetically, because you may have been the only person I have been able to tell.
The DSDC is running a series of educational workshops for carers and volunteers who support people with dementia. If you would like more information about this programme or how you can be involved in the DSDC’s efforts to support and educate family carers please contact us at firstname.lastname@example.org or 01786 467740.