Caregiving: Being Able To Say I’m A Carer

Um, yeah, hello. My name’s Juniper, and I’m a carer for my mentally ill husband. It’s taken me six years to be able to say that without hesitating, tripping over my words or bottling out altogether and saying nothing. Oh, I don’t mind saying that I’m married to someone who is mentally ill, what I struggle to say is that I’m a carer.

Mr. Juniper has struggled with mental illness all of his adult life and has been under the care of a fantastic psychiatric team for just over three years now. In this time, there has been no denying Mr. Juniper’s mental illness. There has, however, been massive denial on my part that I have been his carer.

But over the past year, I began to find myself being more at peace with the term. It started with, what turned out to be, a painful experience of looking at where Mr. Juniper was in what we tentatively call his recovery. He has stabilised to the extent that visits to Accident & Emergency have gone from being a handful every month to perhaps one or two every year. This was a massive improvement, it was a tangible one – fewer stitches, fewer drips, fewer cold nights in A&E waiting rooms – it was, in hindsight, a small part of Mr. Juniper overcoming his struggles. For him to have reached this massive goal of ending his self-harm, everything that was driving him to that point still had to be dealt with somehow. Self-harm is not generally considered to be the best of health kicks to go on, but as it turns out, therapy and medication aren’t a bundle of fun, either.

That’s where I saw myself having to take on more of a role as his carer. Trips to A&E? They felt like a piece of cake compared to supporting Mr. Juniper through therapy and medication. Is it easy seeing your loved one in such emotional distress that they reach the point of needing A&E? Of course it isn’t. It’s horrific, if I’m honest. But those episodes did have something going for them: they were simpler.

Being in therapy would be even harder than it already is for Mr. Juniper if he weren’t on medication that gives him a nudge towards stabilisation. And in the Juniper household, medication brought with it more cause for me to recognise my role as carer. Some people are fortunate enough to hit upon the best medications for them with relative ease. For Mr. Juniper, even with aforementioned fantastic psychiatric team, it has taken years to find a good mix. That period of discovery saw Mr. Juniper go through some very hard times and saw me really begin to feel the strain. Medications have to be given time to work and I know that for many people and their partners, the medication changes can be harder than the illness itself.

One medication effectively turned Mr. Juniper into a zombie, and while I lost my husband to sleep and withdrawal, I also had to take on everything that he simply couldn’t do. His body worked. He could manage all the basics. But that was just it. The basics. It was a time of seeing, very painfully, how his mind was letting him down in a very big way. He wasn’t harming himself, he wasn’t engaging in the same impulsive behaviour, he wasn’t experiencing the same thoughts of hurting himself on a big or small scale. He wasn’t Mr. Juniper.

Other medication changes meant he would become physically ill and mentally unstable in the weeks that his body took to adjust. Changes that meant he withdrew from day-to-day life and the running of our family was entirely down to me.

It crept up on me, what I was having to do. On their own, the changes didn’t seem so hard, but altogether they did make an impact. It was home, husband and the measures that were keeping him from A&E. They added up.

As medication stabilised and we reached the point of a combination which did good things for his brain, instead of turning him into a zombie, my role as carer changed again. The definition of my caring for him changed again.

Coming out of the zombie period meant more support, more planning and more awareness of the outside world. Caring began to mean more listening, more comfort, more liaising with his psychiatric team. I had to think more about how we did things, how long he could cope with being on his own or whether we would have to do something together. Caring meant seeing where his limits were and how we worked around them, whether that was going out to the shops or having to make a phone call; it meant helping him implement what he learned in therapy at home and in the world at large. It also meant more uncertainty as we explored uncharted waters, and making sure I was prepared for whatever might surprise us.

Admitting I was a carer meant acknowledging just how ill Mr. Juniper has been. Accepting that three years of fantastic psychiatric care were just the beginning. Accepting that having the phone numbers for the psychiatrist and CPN (Community Psychiatric Nurse) close to hand wouldn’t be changing for some time to come. Accepting that although Mr. Juniper is no longer a zombie, I still have to take on the lion’s share of keeping our household and family in one piece.

Being able to say I was a carer meant being able to balance how I felt about what I was doing and that it didn’t mean sacrificing who I am. I loathed the idea of being his carer because hey, I wasn’t his carer, I was Mrs. Juniper and I was married to him, not his mental illness. It took Mr. Juniper himself to help me be okay with calling myself a carer. He has been able to say he is mentally ill and not let that define him. So, despite still catching myself at times thinking, “Pfft, I hardly do a thing,” I am slowly feeling more at ease with acknowledging that my support for my mentally ill husband takes me into carer territory, and that I am one of many discovering what being a carer means to them.

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Juniper

Rarely to be found without herbal tea nearby. Team Unicorn. Often in pyjamas. Also: TEAM KATNISS!

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