As part of our 20K in April challenge, we’re sharing stories, with permission, from our community every day from 13th to 30th April. All are true accounts of the reality of a random group of parents in our community. Some are professionals, others full time carers. Some have been battling for years, others are new to this dance of accessing services, navigating school, coping with shame, guilt and judgment, and keeping their child alive while trying to work, look after their other children, have a relationship, have a life. All of them deserve, like their children, to be heard and helped.
I am a parent who has been through the hell of watching your child quickly spiral into a mental decline, feeling powerless to ‘fix’ the problem while trying to get professional support. We noticed our D’s mental health decline when she was nearly 15 and how her sparkle had dulled. Despite GP and psychotherapy support for a year, as soon as her GCSEs were over, she spiralled into Anorexia, rapidly losing 1kg a week through restricting to 500 calories a day. She was lucky to be offered Family Eating Disorder Service urgently and here we heard about the Maudsley’s family-based treatment where parents are tasked with the responsibility of supporting intensive home-based refeeding and normal behaviours in their teens, without waiting for them to be motivated to eat and therefore requiring a substantial commitment from parents for first stage of treatment. There was no parent training – we learnt about Anorexia through reading the bits of paper given to us, searching the internet and books. Easier said than done getting someone who wants to starve and die to eat 3 meals and 3 snacks and the family distress of refeeding has left deep scars on all of us. The impact was immense on our family functioning, our parental identity having to take back control with food as if she was a toddler, becoming a full-time carer and feeling helpless seeing your child literally disappearing.
We just became stuck in a never-ending groundhog weekly cycle of an hour’s FEDs meeting for 9 months to be told ‘she needs to eat more’. The focus remained on her eating rather than holistically ie therapy for the underlying trauma alongside the motivating her to eat. We both hated the weekly meeting and dreaded weigh ins for different reasons – her about gain and me about losing again. When you experience stuff where you are responsible for getting her well, built on the already established sense of falling short of the ‘fundamental thing to feed and protect your child’, I struggled with self-blame because ‘I’m suppose to be a child therapist and I had not seen the AN coming and I sucked at eating restoration’ which all contributed to an erosion of my sense of identity. The sense of isolation and loneliness was awful. She required 24/7 care and it when my husband took over so I could go out, it was hard for friends to give me the support I was looking for or I found hearing about their lives extremely painful. Finally, after months of saying D16 was too ill to recover at home, a new consultant made an urgent IP referral within 2 minutes of meeting her and 2 weeks later, she was sectioned at 29 kgs (60% weight for height) in an ED unit 60 miles away. There she became weight restored via a nasal-gastric feeding tube under restraint for 6 months.
It was a terrible time in our lives but worse for her and we’ll never know how horrendous the experience was for her. We had several incident phone calls in the first 3 months where she nearly died through suicide despite being on highest Level 4, 2:1, within touch 24/7 but things settled more when moved to the PICU and their approach suited her pace of healing better. I still find it hard to understand when patients head bang why staff do not intervene and because every door and wall ‘would leap out at her head’ she ended up having urgent surgery by a plastic surgeon because of a massive haematoma and fever. She finally came home after 10 months stay. IP was an emotional rollercoaster – the guilt, sadness and relief when she was sectioned before settling into a more normal family life with her 3 teen siblings without responsibility for D and replenishing my reserves after being burnt out and exhausted for so long. Then as the discharge date approached and we started the home visits, the joy, fear and lack of confidence around keeping her safe and the risk of relapse through AN backlash. With EDs, IP is about weight restoration and the mindset recovery/managing the thoughts starts when back in the Community FEDS. We did the step down from PICU and following guidance of taking an authoritative stance still and gradually shifting responsibility across to her as she managed the AN thinking better.
This all changed 3 months after discharge when moved to Adult service. Brutal is how I would describe the transition. It now became 100% her responsibility to stay well and parents no longer welcome. FBT out and MANTRA in! Consultant accused me of being controlling and for the first time, with the things she said, I felt a professional’s judgment that I as her mother was to blame for D’s mental illness and it damaged my relationship with services but more importantly with D because I now doubted and questioned my parenting style. Only recently has D told me that Adult services had colluded in her illness the first year when they would not disclose how much she had lost again and her secret over-exercising because she withdrew consent knowing that if we knew, we would do what was necessary to stand up to AN. There have been some serious self-harm incidents where it’s an A&E trip and dressing changed twice a weeks for a couple of months at GP. October 2020 was very difficult time for us. She stopped taking Olanzapine following her Consultant saying her ‘face was rounder’ in a Zoom call and probably the medication causing weight gain – this is an ED Consultant!
Despite appearing happier and future-looking following successful A-Levels, place at Uni of choice and working in a job she loved for her gap year, she took 200 tablets (96 paracetamol and rest her meds (Olanzapine and Fluoxetine) she had been managing independently for a year but had stored up since that fateful meeting and I found her collapsed in her bedroom. We didn’t see it coming and our Coronavirus world upended. I have tears pricking as I write at the image of her on life support, ventilator, dialysis and heart monitors bleeping away as she ‘slept’ in a coma. No one knew if she’d make it and ICU were ready to transfer her to Kings College London. Somehow, she pulled through with little damage. I’d like to say that when she came home 10 days later, she was all regretful but she wasn’t and we were at our wits end. Following Crisis team support, she went back to work because you cannot keep a 19-year old under house arrest. While she was at work, I did something I have never done – I searched her room for her journal. I had a strong sense of foreboding and I have no regrets for disrespecting her privacy because I found her very well thought out plan and we were able to save her life by being at the place 15 miles from home, at the time when she was going to end her emotional pain. Crisis team couldn’t help us, we had to do to step in on our own, but the plans were all in place ready for an assessment and sectioning the next day. She went into Adults IP for 6 weeks but we were shocked there is no actual therapy – it’s in Community (!), she was just left to own devices with very little support from staff when struggling; it was the other patients who got her through the moment.
Before she came home before Christmas, plans were put in place for her to have weekly therapy with lead psychologist and mental health care coordinator and we put in a home contract with firm boundaries about continuing to live at home which was very hard to put in place but we have other teens to consider who deserve to have a ‘calm’ home. Life since then has been strange because of the complication of lockdown with everyone at home but we are pushing the boundaries back out, supporting her in becoming more independent again and she has started her volunteering again at an animal sanctuary. We’re now also starting the journey of ‘her’ becoming ‘them’ and waiting for the gender clinic appointment to help this aspect of the future to move forward. At the moment, ‘she’ is still ‘she’ and she has included us in finding her new name for when she is ready to fully claim her gender. I am hopeful being authentic to being the person meant/want to be combined with our love and support will help them climb out of the rabbit hole for good.
So here we are today and none of us are the same as who we were 5 years ago. She is still under two Adults services: ED and mental health (depression/suicidal ideation) for nearly 2 years, and she is managing her urges. Over exercising, running half marathons every day or 4 hours of HITT at 2am was a way of restricting but that has stopped in last six months. She eats more normally although AN lurks in the background and can be intense some days, but if she trips up, she steadies herself now.
I still get frustrated by services and how useless and obstructive they have been at times but I do have some empathy for them. It’s so much easier to cure a physical illness with clear treatment plans that usually cure fairly straightaway through medication, management or surgery and also have a greater proportion of funding, staffing and research. The brain is the most complex organ in the body, but it is also harder to study and probably why we are decades behind in research. Psychiatry uses a standard diagnostic system with all its labels and medications but the trouble is, it does not map well onto any shared biology e.g. depression is not one ailment but many, expressing different faces in different people because of all the various factors of genes, neurobiology, social and life experiences. I think about how we all find ourselves on PMH group because our child has mental health difficulties but no one experience is the same but the power of social interactions helping each of us navigate through the process of talking with others with similar experiences. It is extremely powerful and maybe there needs to be more similar day unit opportunities for sufferers similar to AA’s mentoring and group meetings who have helped many to go on and live fuller lives rather the haphazard approach our young people have to go through reliant on medications and postcode lottery for treatment.
For my well-being, I find art journaling helps me get stuff out and which is why I have shared some of my expressions at the times in our journey when they were created. Through art journaling I have found acceptance of my emotional struggles as a human being, helping liberate me from the clutches of guilt experienced as a parent. I am aware of my emotional challenges when I have got it wrong at times when exhausted and snapped from compassion fatigue but I try not to allow shame and guilt to keep me paralysed. They are what make me human. What does impact my relationship with her is what I do after the initial reaction. So instead of feeling guilty or ashamed at my reaction, I apologize to her for my reaction and empathize to validate her perspective and feelings. I also learned how self-care without guilt is incredibly important for me and most weeks I take time for myself whacking a ball round a golf course with friends, go out with hubbie and try to do something creative – art journaling/mix media art in my she-hut.
I continue to process the trauma we have gone through a layer at a time, my grief and loss: loss of how I thought family life would be, loss of the child I had before mental illness, loss when she was in IP, loss of my job, my therapy practice and my identity, loss of some friends, loss of her dreams, a loss of ‘her’ so I can welcome ‘them’ and of course there is the impact that the numerous self-harm and suicide attempts bring in terms of coming to a place of more acceptance that I can only do what I can do and if they want to end their life, they will find a way. BUT amongst the tsunami waves of despair, sadness and frustration, there have been many more times of deepening connection through unconditional love, compassion, and acceptance with a dash of optimism and this keeps us holding on to hope for the future.
If you would like to donate to the 20K challenge, you can do so here: https://www.justgiving.com/fundraising/suzanne-alderson
If you’d like to sign up and fundraise as part of the 20K Challenge in April for Parenting Mental Health, you can do so here: https://www.justgiving.com/campaign/PMH-Sphinx20KChallenge