Molly works on the Peer Support Line for Bipolar UK. As well as this, she is also, technically, a ‘carer’ for someone with bipolar disorder. Which has its own rollercoaster of emotions too.

Carer is not a term I love in all honesty; the person I look after is someone who is an adult, and who for the most part is perfectly capable of caring for themselves, but their varying capacity because of their diagnosis does mean that I am also sometimes partially responsible for their wellbeing, and though the word ‘carer’ doesn’t always fit me, it’s something that I am incredibly proud makes up a part of who I am.

I recently ran a Support Group for people who also fit this definition; those who love, sometimes live with and care for someone with bipolar disorder. A topic was raised that we realised, upon reflection, was not something that we had often seen discussed, and I thought that it was incredibly important that this experience was shared, if only to show other carers that they weren’t alone.

This topic was grief. Grief, in the traditional sense of the word, is mourning the loss of someone or something which you once had but has gone forever. Grief for carers, however, is something very different. In my experience, it is a deep, gut-wrenching sadness about not the person you love now, but the person they could’ve been. I’m grieving for a future that has never and will never exist. I’m filled with grief for someone who, for the most part, is doing well! They’re happy, mostly stable, and living their life in a way that suits them, and yet, on occasion, I am struck by a sudden wave of mournful sadness.

I know, if you’re reading this and you haven’t had this experience, it probably sounds very odd. It’s one of those ineffable feelings; the German language probably has the perfect word for it! As a carer though, this may be something you know all too well. You grieve for the person, you cry for all that they are experiencing and what they have lost, whether or not it’s something they feel they are missing. You grieve for all the pain they have had, or the pain they may feel in the future, and this grief amalgamates with all the worry you have, and all the love you have, and becomes a strange solution you carry with you for a long time, sometimes always.

I remember recognising this for the first time very distinctly; I was on my first ever family holiday abroad, a momentous and much anticipated occasion at age 20 or 21. I was spending time with my family by the pool, and realised I had forgotten something in my dad’s room. I borrowed his room key, and quickly bounded up the stairs to pick up the forgotten item so I could return as soon as possible to splashing around in the pool, or laying under the hot, Mediterranean sun like a lizard on a rock. I opened the door to the hotel room and was struck by the darkness; my dad had left his curtains closed, and as my eyes adjusted to the light change I saw all of his bits and bobs strewn across the room; a half-eaten bowl of cornflakes, a toothbrush, socks and a shirt and a pair of goggles he’d insisted on purchasing ‘just in case’ we got the opportunity to go snorkelling (we didn’t). I stood in the doorway looking at this, and suddenly my eyes filled with tears. I sat on the bed in the darkness, crying, with a tightness spreading across my chest. I had never felt so sad; not when he disappeared for a period during an episode and we had no idea where he was or what he was doing, not when he came home after a psychiatric meeting in tears as his medication change hadn’t worked, not when I spoke to my family about his psychotic episodes and all the pain he had experienced. I felt like a fool- he was downstairs, laughing and having fun, he was more well than he had been in a long time, and he had not had an episode in years. But the grief I felt shattered me; I had never felt anything like it. It felt like I had been reminded of someone I had lost, like a plan I’d suddenly remembered I’d never finished with them and would never get the chance to again. There were times when I was younger when I felt embarrassed or nervous or worried about him, but I had never experienced anything like this. As I looked at the small, cluttered, dark room, I suddenly couldn’t stop the images of who he could’ve been flashing through my mind. Would he have been able to get up earlier and open the curtains if his medication didn’t make him so drowsy? Would he have been able to take us on this holiday when we were little if his mania hadn’t pushed him to spend huge amounts of money? Would my parents be staying in the same room, in love and together, if his diagnosis hadn’t had such a powerful impact on his interpersonal relationships? Would he be more like his brother, able to stay in further education or hold down steady employment? Or would he be like his dad, balanced and soft and warm? Then, as many people who are carers reading this will know, you are hit by waves of guilt. I felt so terrible for crying about who he could’ve been, when who was, who he is, is someone I am so happy I get to call my parent. Someone who is kind, loving, funny and silly, warm and welcoming, generous and understanding. As I have gotten older, and through the utilisation of Peer Support Services like those offered at Bipolar UK, I have come to realise that who my parent is is not defined by his diagnosis, but in those moments its effect is undeniable.

The grief still hits me sometimes; sometimes there will be a situation which reminds me of the stark differences between my dad and all the men in his family without the diagnosis. He told me recently that he was lonely during the pandemic, and this single word cut through me in the same way opening the door to that room did. Thanks to the knowledge I have gained during my time managing this relationship, and thanks to all the myriad of things I have learned working and volunteering for Bipolar UK, I was more prepared, but even if you read all the books and talk to all the people possible, this feeling never really goes.

When this subject was raised in the meeting, I felt that I should write this article, to remind carers that you aren’t alone in this. You are not alone in worries about the future, upset about the past, or grief throughout. I’ve found that talking about this helps, and that with time things do get easier, but this can be a tough journey for everyone involved, and we are always here to talk through any aspect of it you need a bit of extra support with.

You can find out more about joining our Carers’ Support Group by emailing the team directly at [email protected] and about accessing our other Peer Support Services by emailing [email protected]