Wednesday 25 September 2019


A Guest Post From a Tired Caregiver

With a short break for sleep, my teenaged daughter Lily has screamed, shouted, ranted and thrown household objects for 18 hours straight. She follows me outside and from room to room inside. If I lock a door, she pounds on it and shouts. The only way I can escape her is to make a break for my car, start it at lightning speed and drive away. But she’s not safe to be left for too long, so after a few blissfully silent minutes in my car, I return to the shouting. 
I have followed the instructions of her mental health team. I have phoned the emergency mental health number. They won’t come because she is ‘acting out’. “Phone the police”, they say. I phone the police. They tell me it’s “not really our bag”, but agree to send a car. They phone a few minutes later to say that car has been diverted to another incident. They’ll come, they say, they just don’t know when. Several hours later, we phone the police again. “Sorry”, he says. “Sunday’s a big day for us. Just going off duty but if it gets worse, phone this number.” It gets worse. We phone the number he gave us. Eventually, after several more hours, our kid finally exhausts herself, takes her meds and goes to bed. I totter straight to bed too. We are woken at 11pm by police with flashlights who have finally arrived to do a welfare check only to wake Lily up! Luckily, her meds send her back to sleep.
Today, my teenager has gone to school where no doubt she will NOT scream and shout. I’m holding tight the strategic lines advised by our mental health team. She has no privileges and still no emotional input from me.
This is not new for us. Lily has a little-known chromosomal disorder which causes (amongst many other things) learning disabilities, extremely high anxiety and obsessive/compulsive behaviour. As she struggles to regulate her own emotions and find her own solutions, I have acted for many years as a kind of external hard drive. She logs in to me for solace, to pick through and make sense of her emotions. But I’m burned out now. My health is failing. Despite years of coaching, loving, strategizing, supporting and seeking every possible avenue of help, Lily’s needs continue unabated, relentless.
In the outside world, Lily appears high functioning. To the untrained eye, she does not have distinguishing features like Down Syndrome and for short periods of time, she almost passes for ‘normal’. She is often affectionate and engaging and although her neediness is apparent, her school teachers only see the tip of the iceberg and they remain sympathetic and helpful towards her. I’m so grateful for this – they’re wonderful! But they’re not her external hard drives and all her angst and anxiety and her anger is saved up throughout the day to be downloaded to me. This is Lily’s M.O. She even contains with her grandmother whom she adores and sees every day.
I’ve lost count of the times that people have shared with me that she’s just spoilt. “She only behaves like this with you!” “She’ll be fine!” “All children behave like this.” “You need to look after you.” “Have you tried…(insert treatment of choice: Bach flower remedies, mindfulness, gluten free diet, horse therapy, CBT, ACT, DBT…)?”
It wasn’t until just last week that a Clinical Psychologist told me, for the first time in 16 years, “this is not your fault.” She told me that Lily’s condition is largely a biological accident. That yes, we’re always working on improving situations, but you did not cause this situation. This brought me some relief from exhaustion. But it doesn’t present a place for Lily to go where she can be safe, yet apart from us.
Lily’s IQ is not low enough to admit her to Intellectual Disability Services. She is not (now) violent enough for the police to come. She used to be – but in those days we were still coping and keeping her behaviour to ourselves. Government Child Services have few residences and those are poorly staffed and sometimes unsafe. Our mental health team of Psychiatrist, (occasional) Psychologist and Social Worker do their best with meds but can’t control much beyond that.
So, we exist, but we are largely unseen. Lily struggles with significant disability but is not disabled enough: not for outside services and not for the kind of social support which I now crave. We are copers, my husband and I. We have coped. But over time, coping has come at the expense of our social life, hobbies, my career and our health and wellbeing. The erosion has been so slow and steady that it has taken us a long time to finally look up and see how isolated we are now. But we’re still working, earning, staying washed, clean, lawns mown, nutritious food cooked. I communicate competently with the school, mental health and health services. We’re educated, well spoken, white and straight. We live in a nice part of town. Our neighbours know about Lily – so they don’t call the police even when it sounds like they probably should. It has been said that we’re our own worst enemies.
Yet to behave otherwise would seem a gross injustice to Lily. She is our child. We love her beyond measure. We have done everything in our power to give her the chance to live her best life. We’re still doing everything in our power… but our wattage is dimming. We’re frightened now. We’re getting older, less vigorous. I simply cannot imagine what will happen to Lily when her external hard drive croaks. The living possibilities for people Lily are limited and we are working on setting up a private arrangement. But we need more time, so for now, we push on. More strategies, more coaching. Hoping that eventually she’ll take over some of her own emotional regulation.
This is a caregiver’s story. But I’ve broken the narrative rules. This is not an uplifting, empowering and positive story. Within the organisation that I’ve helped form over the years to inform others living with Lily’s condition, there is a standing joke that I should never be allowed to speak in public lest I frighten the families. The publicly palatable version of disability is that they are our gifts, that they enrich our society and we are grateful for their lives. Our family laughingly calls this the #blessed discourse. And of course, there’s a great deal of truth in this. Lily has changed us – in some ways for the better. Unable to work full-time, I have studied. I have a post-graduate qualification in Psychology!
But I also want the less palatable stories told. I want to hear stories from the ‘grey areas’ where people are not disabled enough or sick enough to attract the care they need. I would love those stories to be heard without judgment and with compassion. Even better, I would like to see those stories translated into changed services for families like ours. Services which acknowledge the needs of caregivers as crucial. Services which, as well as being patient centred, are caregiver centred and which put in practical measures of support before it’s too late.
I hope it’s not too late for us. We’ll see what the next 18 hours bring.

Sue is a native New Zealand mother, grandmother, small business partner and post-graduate student of psychology. When she's not looking after her family and pets, Sue indulges her passions for wine, media and books. 


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