Heide’s story
Courage and resilience
I first became aware that I had mental health problems when my daughters were aged three and five (though I had always felt something was ‘wrong’ with me for many years before I had children). I became severely clinically depressed and was voluntarily hospitalised for nearly four months. Approximately five months after discharge my children returned home to my full-time care.
On looking back, I recall my then GP advising me that I had postnatal depression following the birth of my first child, however I refused treatment at that stage. I was concerned about what medication would 'do’ to me. I did not understand anything about mental illness at that time and my husband had no knowledge of mental illness either.
When I was four months pregnant with our second child my husband left me, and I moved home to another area, one month before her birth.
Again, I suffered postnatal depression and I did not seek help – fearing my children would be removed from my care. I continually felt suicidal, I self-harmed, was hearing voices & experienced what I now know was paranoia. Eventually I realised I was too ill to function as a mother and agreed, in discussion with my GP, to a psychiatric assessment. However, the situation was so urgent that I was immediately hospitalised, voluntarily.
As I have learnt more about mental illness and how it affects me, I can see that I have been suffering from mental health problems since I was a child. I often self-harmed as a young child and I tried to kill myself several times by eating poisonous plants. At 11 years I overdosed on over-the-counter painkillers with the intent of ending my life, telling no one that I had done so. Fortunately, I survived.
In 2005 we were on holiday when Hannah was murdered in the Sharm-el-Sheik bombings (I still struggle to use the word murder and remember being so shocked when I read it on her death certificate). A terrible struggle ensued for me and for her younger sister.
I suffered from Post-Traumatic Stress Disorder. There was no treatment available locally for PTSD, though my GPs were very supportive. I had to re-invent my ideals of parenting to support Georgina as best as I possibly could. My mental health problems were certainly exacerbated and, until my GPs took over my care, I had frequent hospital admissions to an Adult Psychiatric Hospital/A&E.
Fortunately my MHPs & medication were then re-assessed over a period of time – resulting in diagnosis of Cyclothymia – leading to a better understanding my mental illness and gradually reclaiming a better quality of life. A couple of years ago I was also diagnosed with Fibromyalgia, which I am still learning about, as well as Vestibular Dysfunction (after effects from the Sharm El Sheik bombings).
So... understanding the dynamics of physical illness mixed with mental illness is certainly demanding. However regular appointments with my GP to discuss my concerns & work on positive & practical coping mechanisms have been extremely beneficial!
Having a positive, trusting and reliable working relationship with a knowledgeable Dr/Mental Health Professional is extremely important. I honestly believe that not expecting immediate understanding and to be able to manage MHPs without any hiccups along the way is not realistic. Everyone is different. Every family is different. Being honest with my Dr about what is happening for me has helped me to build trust and has then allowed my Dr to work with me constructively.
This means getting the medication right for me, as well as discussing ways of constructively helping myself by talking about issues as they arise and how to manage them. I have learned that no one thing is 'the answer', but acknowledging that you need help, that levels of help needed change over time and above all knowing that children need love, respect and honesty too, will all help to find a better quality of life and a better level of respect for oneself (no matter what one’s own childhood has been like).
For me this is a lifelong story of mental health problems – so that’s 57 years now. My daughter Georgie is a woman, mother and my dearest friend (yes, friend!) I have a beautiful, adored granddaughter aged 3 who spends a lot of time with me. Time, sometimes many years, can pass before the sky begins to look blue and the sun looks brighter again, but determination will get anyone there even when hope seems lost; it really can be so difficult of course, but it is possible!
I have learned much from my experiences (I am still learning!) and I would like to end by referring to a part of my contribution to TFM Handbook (page 94):
”I see the future as holding opportunities for me to live life in a new way with the insights I have gained, not least through my own MHPs. Martin Luther King’s ‘I have a dream’ speech brought to the fore that all people are created equal and that this is what the future should acknowledge. Emily Bronte once wrote “I have dreamed in my life dreams that have stayed with me ever after and changed my ideas”. In my dream the future simply holds a time when parents can seek treatment for MHPs without suffering the stigma associated with mental illness and without unfounded fears of losing their children”.
Thank you for reading this. Heide Lloyd, July 2018
Joan’s story
On coping as a carer
"My name is Joan and my son has suffered from Schizophrenia for many years. This is an edited version of a talk I gave at a Carers conference last year."
"Coping is something we as carers need to learn to do, not only with the person we care for, but also for ourselves. If we do not manage to put our daily tasks into some sort of system, our lives will be mayhem and we will struggle with the unpredictable things that can arise at any moment when a family member is unwell."
"Awareness about mental illness was greatly lacking when my son developed mental health issues some 24 years ago. He was 23 years old, living and working 45 miles away when changes in his personality first became evident. At first I tried to help by travelling to see him in an evening and talking with him. I would leave many hours later, often at midnight, entirely exhausted, my head pulsating with mental fatigue through trying to coax, reason and plead with him to get help. He thought he could work things out for himself."
"I tried writing to his doctor about how much my son had changed and about my grave concerns but she seemed to minimise my concerns. I was not coping at all well.
"Nine months into the illness he gave up his job, then lost his apartment and disappeared. I reported him missing and would spend weekends travelling the West Country looking for him.
"Two years later he was in hospital for about 6 weeks but refused treatment and he left. That was it for another 3 years, another three years of searching, but to no avail.
"Then one day he knocked my door. There was an incident and I thankfully got him into hospital and treatment, at last, began.
Learning to cope was difficult, especially how best to talk with him. Especially when he was so critical of everyone including me and his responses so unpredictable. One time, instead of getting into a ‘what do I do to sort it?’ mode, I remained calm, took my time to respond and then I heard myself say something and I thought, ‘where did that come from?’ And it worked!
"Somehow I managed to keep this going and I was clearly beginning to cope better by listening more and not desperately trying to find a solution every time he spoke (not think I was ‘Miss fix it’). And the more I used it the more natural it became! I learned to read situations better and identify triggers - his posture, his walk, how he would sit in a chair, the position of his hands, the tone of his voice, how he phrased his words. And how to not take his negative comments personally.
"I supported my son’s wish to have his own home so we got him a small flat close to amenities and walking distance to mine. Some days he would arrive and respond very little. On those occasions I knew the visit would be short and he would leave. There was no point in me running after him to try and persuade him to stay because that would have further irritated him.
"Other days he would come in, pace up and down, but stay, so I knew that he wanted company. Then after a while he might ask for a cup of tea and that was the opening I needed. It enabled me to try and introduce some positive interaction between us. I needed to avoid over-verbalizing. This was coping, learning the rules, and gaining trust without being pushy. I tried to not get overwhelmed and to remain optimistic. I did not allow myself to feel guilty when something went wrong, I accepted I am not perfect.
"I realised I needed to take a more detached approach – in my heart I loved and cared for my son, but my head told me what was best for both of us. I also began to make time for myself. I had to because the pressure was so great. That old saying: ‘he who fights and runs away, lives to fight another day’ – very true.
"Gradually the support and reinforcement helped improve my son’s social environment and I was able to give him the independence he needed. Today I keep a very close eye on him, but from a distance.
"I think that was the biggest (and hardest) lesson as a parent – to look after myself and to not become isolated. We need to look to the facilities and organisations that can assist us to stay in good health and to remain as part of the community.
"Listening to other people and their experiences when caring is of great benefit to carers. We gain a better understanding of the problems they face and this helps us appreciate the role we can play. Part of the learning process is giving time to ourselves. So my advice to you today is go and be pampered, you deserve it."
Have a good day.
Joan
Sally and May
Transgenerational perspectives on mental illness, loss and resilience
I first met Sally and her mother, May, many years ago when I spoke with them as part of a study about children’s understanding of parental mental illness. May had a chronic psychotic illness and explained her hopes and fears in the following quote:
“I don't think I'm strong enough - If I'd known (about the illness) I wouldn't have had her - It was selfish ... because I thought I might be lonely. She's always saying she loves me, but I know I've failed her." She goes on to describe how: "...because Sally is bright, she dominates me - my brain is dead - it's not like it used to be - so I ask her to change the Hoover bag, the tele-text. If we get a new phone - she does it - you know Dr, she's like the man about the house. So that person's going to take control - they're the superior brain, but then I resent it because I'm the elder..........I hope she finds a good man and a happy life - that this business with me won't affect her future”.
Expandable row text: At the time Sally was 12 and she was able to provide a poignant account of how ‘My Mum gets muddled in her thinking sometimes. She doesn’t know what to do. I know what to do so I can help her.” And it was clear that she did. She was a capable, caring young person with resilient qualities evident from a young age. About 11 years later I had the opportunity to hear about Sally’s progress when I spoke briefly with May, who was again in hospital. She had remained episodically unwell (needing hospitalisation on at least 8 occasions during that time) and requiring ongoing support from community mental health services. She was certainly more frail than I remembered, slightly drowsy and I wasn’t sure if she remembered our conversations all those years ago, but the remarkable thing was how she brightened and became more animated when I asked about Sally. ‘I’m a grandmother now’ she told me, ‘Nancy’s 4. Sally got a good job. A policewoman. She’s on a course. Visits me every week. She won’t let Nancy stay over. I understand that. This illness business never stops …’. As far as I could tell from that brief, rambling, but poignant conversation, Sally had remained well despite the adversities associated with her mother’s severe, chronic schizophrenia and the burden of care she took on for her mother (and more recently her daughter). I managed to talk with sally the following week. She didn’t remember my visits to their home over 10 years previously but she could describe her role as a young carer quite vividly. She spoke with no resentment, simply an acceptance that watching out for her mother was a part of her childhood and growing up. ‘It’s ok, made me who I am. No regrets’. Sally’s optimism remained and although she acknowledged some guilt when she had to leave the home, she never stopped visiting. She described how grateful she was that her mother accepted this and tolerated the reduction in their time together. Sally teared up when describing her mother’s reaction to seeing Nina for the first time. She also expressed the unfairness and her distress about her mother’s illness which had robbed them both of so much time and opportunity to share in their changing roles from daughter-mother and mother-grandmother. Remarkably her resilience enabled her to retain both optimism and sadness as reflected in her statement: ‘We make the most of our time together’. She was clear that whilst her mother had periods of recovery good enough to remain out of hospital, she had not got to the point where Sally felt able to leave Nina with her. ‘I wish I could but I just don’t think it’s fair on Nina’.
Christine
Resilience through lifelong learning
Education was a low priority for me growing up in a family overshadowed by parental mental illness and addiction. Despite my father’s best efforts, as a young family of six in 1970’s Dublin, we were homeless for a time and squatted in a high rise flat complex until we were eventually housed. Like so many of my parent’s generation and socio-economic class, life was a daily struggle to make ends meet. Observing and living with the impact of mental illness and addiction became a normal part of my daily existence.
One distinct memory remains from my childhood. I woke one morning (aged eight), to the panicked cries of my father as he struggled to rouse my mother from a suicide attempt. Her grief at the recent loss of her own mother had tipped the delicate emotional balance she had maintained against all the odds. No explanation beyond, “your mammy is sick”, was offered to me or my siblings and once she was discharged from hospital, we simply moved on until it happened again. With no other frame of reference, my life growing up felt normal until the day the body of my younger, 20-year-old brother was pulled from a river in Dublin city. Tragically, he succeeded where my mother had not.
Twenty two years after my brother’s death, I finally took the opportunity to return to full time education and achieved an honours BA in psychology. Currently I work as a PhD scholar investigating the impact of an intervention to tackle the potential negative impact of parental mental illness in families. It is on this journey that I became familiar with Dr Falkov’s Family Model.
Undoubtedly, balancing the needs of a parent in recovery from mental ill health with the needs of children in their care is difficult. Our current polarised mental health services in Ireland do not yet attend to whether a person presenting for treatment is a parent. This individualised approach fails to support the hidden population of children growing up in families affected by parental mental health issues such as mine.
One component I really appreciate in Dr Falkov’s family focused model is the emphasis on supporting relationships within families challenged by mental illness. While I appreciate the complexities of life, I do wonder whether my family might have been saved the grief of losing my brother to suicide if we were supported using The Family Model after my mother’s first hospitalisation.
On reflection, what I, and my siblings needed as children was a safe space to discuss what had occurred and to express the fear we felt simply by seeing our mother unconscious. An opportunity to ask questions to better understand her sadness as a normal part of the grief process at her mother’s passing would also have been helpful. Finally, one should never underestimate a child’s ability to blame themselves in a last ditch effort to feel some level of control when life is chaotic and a child feels powerless. If the problem is my fault, then I can do something to change it. This illusion of control soon becomes a vicious circle which reinforces a child’s feeling of guilt and failure.
While I applaud the current focus in mental health support services on building resilience when children are impacted by adverse childhood experiences, I think it is important to remember that resilience is not a limitless resource. I survived the many challenges of growing up in a family impacted by poverty, mental illness and substance abuse during my childhood years, yet it cost me later in life. Early intervention and support for families is essential if we are to stem the transgenerational transmission of mental illness and its effects.
Experiencing first-hand the negative outcomes for children growing up in families challenged by mental illness, I feel privileged to now be part of a team of psychologists under the supervision of Professor Sinéad McGilloway and Dr Mairead Furlong at the Centre for Mental Health and Community Research, Maynooth University, who are committed to advancing a family-focused approach to parental mental illness in Ireland.