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I clearly recall the shock of recognition I had when, some months after my son had been diagnosed, a mental health professional asked how I was handling my grief.
“Grief? Me? But he’s alive…?” And then, “Yes. Of course that’s what it is…” It was almost a relief. Finally I could identify the awful, heavy feeling that had dragged along with me as each day I continued putting one foot in front of the other.
Finally I could begin to articulate my engulfing sadness that my beautiful boy had already lost almost a year of his youth to this awful, awful illness that I found so hard to understand. I grieved that his friends had moved on from him – they didn’t understand either and at 20 they didn’t have a second to waste as they hurtled on into their own futures. I grieved at not having been able to prevent this dreadful illness, at not being smart enough, and at somehow being responsible for his pain...
It took a while to realise that some of my grief was for the loss of my hopes and dreams for my son, some of which, if I was honest, were actually quite different from what he’d wanted for himself. I’d wanted him to go on studying and get a good job, then travel the world before settling down (not too far from us!) with a suitable girl who would make him happy… He’d wanted to travel, and said he’d worry about jobs when he needed to and didn’t ever want to settle down, and in any case, he didn’t want to be like us and have no life outside work! Like all parents, we believed we could see his potential, we hadn’t wanted him to make the mistakes we’d made, and we wanted him to ‘go straight for the gold’. But he’d been more interested in the journey, and wanted the freedom to go off the beaten track and investigate everything along the path…
Yes, I grieved for my beloved son; I ached to see his hurts, his confusions, and his fear. I grieved to see him trying so hard to be brave, only to be struck down by the betrayal of his own mind which couldn’t differentiate between the real and the unreal.
But my grief, my sense of loss, was also for me, for my innocence, for the loss of my perfect family. After years of sharing my son’s triumphs, joys and aspirations with my own circle of family, friends and acquaintances, I could no longer do this. And I was angry that this should have happened to me, who’d tried so hard to do it all the right way.
It helped me to talk about my feelings; it helped me to read books on grief and loss, and the various stages one goes through. It’s true, much of it is not the same, but there are similarities and I knew instinctively that, whatever the course of my son’s illness, we would never be able to go back to those earlier, simpler days. And there was grief in that too …
Out of my grief emerged the seeds of a greater tolerance, a greater sense of empathy, and an acceptance that what is, just is. I began developing the capacity to treasure each smile, each small moment of pleasure, each little joy. And I came to truly understand that, as much as I could feel my own pain, the pain he felt was much, much worse. From this realisation came a feeling of genuine compassion for all sufferers of mental illness, not just for my son.
There are some things in life that I cannot change. There are others I can change and I choose to make these my focus. You never forget. I’m not even sure that the pain will ever go away. But you can learn to live with it. (Mum)
Caring for someone with a serious mental health condition is life changing. The grief and sadness that you feel when you realise that the person you once thought you knew is suddenly a stranger is profound. You are robbed of your dreams and hopes for your loved ones’ future. The conventional wishes for a successful happy life are no more.
I remember distinctly realising one day that the person my sister had become, was the person I now had to learn to love anew. I had to let go of my expectations for the well person and this was so challenging. It made me feel very angry at times. She was not going to become a confident singer/actress as we had imagined. In reality she was a beautiful young woman struggling to survive every single day.
Small achievements, like getting out of bed for the day, were the victories we would learn to celebrate. I would sometimes look at her childhood photos and just cry. When she was paranoid and argumentative I would wish it all away and resent the ugliness of mental illness. When she died I felt relief that the madness was over but absolutely devastated that we had lost her for eternity. I still want her back. The pain remains fresh. (Sister)
My daughter’s illness has been very heartbreaking for me because at times I have a loving caring daughter who tells me she loves me so much and that she would die without me. At other times, I have this cruel daughter who wants to hurt me so much and does. Many a time I’ve gone into my room and just cried and cried. I don’t let my other children see how I grieve, because I love them too, and they have their own little families to think of. (Mum)
...After about two months, there were signs that my son was becoming unwell again. He had lost weight and was looking exhausted. However, when I convinced him to see his doctor he would always present as being "fine". He just needed to take it easy. He moved out of home and had less contact with the family. When we did have contact the communication we once had were no longer there. I felt like a stranger to my son with whom I had always had a close relationship. Feelings of sadness and loss were overwhelming. I wanted my son back, the son that would give me a hug when he came home, the son that always had a smile and a joke to tell, not just for me but for everyone. Eventually, my son came home so unwell that we were scared of him and for him. I wanted help, but no one could help us. He was over 18 and if he wouldn't accept help voluntarily there was nothing we could do until he became a threat to himself or us. That day eventually came and he was admitted to hospital under an Involuntary Treatment Order. There was a huge sense of relief as we felt he was now safe. But there was also an overwhelming sense of betrayal, as I knew he dreaded the prospect of going to hospital again... (Mum)
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