Guest blogs

Perspective on loss through substance use

I was kindly asked to speak at a TCF volunteer meeting about the loss of my son, Guy, and my experience of bereavement through substance use and meeting other parents with a similar (never the same) loss since his death.

These are some of the things I shared:

Firstly, it was important for me to speak about the person that my son was, distinctly separate from the cause of his death, as this type of loss can often be overshadowed by the circumstances of the death and somehow pushed into a category that focuses on what went wrong, rather than what was right, in a lifetime.

My eldest son, Guy, was a caring, funny and generous character, who brought bundles of energy to every situation. He had a characteristic intensity and urgency, which I have recognized in others bereaved in this way, and a vulnerability from an early age, which made him sensitive to self-criticism and high levels of anxiety at times. He struggled with various Special Educational Needs at school (dyspraxia, auditory processing difficulties, ADHD, Autistic Spectrum disorder) and was typically labelled by teachers as ‘bright but naughty’. He was often in trouble at school, and this gave him an empathetic and open attitude to others who struggled, recognizing himself as one of the ‘misunderstood’ and always willing to give others a second chance. One of his favourite phrases was, ‘don’t judge a book by its cover’, which I often remind myself of.

Guy clearly had an addictive and impatient personality, even as a child, with cravings for chocolate, energy drinks, computer games plus adrenaline-fueled and daring activities. As he moved into his teenage years he tried to calm his busy mind with cannabis, and moved rapidly into experimenting and self-medicating with other substances. He was prescribed medication for ADHD and had several periods of psychiatric care throughout his teenage years. He was stable for long enough to get the qualifications he needed for university, but his mental health progressively deteriorated. Guy died, after several cycles of ‘recovery and relapse’, of an accidental overdose in September 2017, at the age of 22.

Through meeting other parents bereaved through substance use, I have noticed some recurrent themes that unite us, including feelings of fear of external judgement and stigma associated with the societal and systems’ (educational, justice, medical) disapproval of ‘life-style choices’ which our children are deemed to have taken.

I know Guy felt this in his lifetime; it didn’t help him in his struggle, and it doesn’t help me in my grief.

This oppression and lack of support from systems, leaves many parents feeling angry after their child’s death, although personally my anger dissipated to a large degree after Guy died as there was no fight left in me. Amidst the weight of perceived judgement, parents can also feel fiercely protective (as I do) of their child’s memory and character.

A theme which I carry is regret, for the things I didn’t know, such as how very vulnerable a person is to overdose during periods of recovery. I try to manage my regret as much as possible and remind myself that I did the best I could at the time. Some parents talk about guilt, but I avoid that self-punishment as much as possible as Guy knew I was there for him, and we were both trying to find a way through.

Another common theme in bereavement through substance use groups is trauma; many of us have been through chaos and desperation in trying to help our children during their lifetime and I certainly had highly distressing times of anticipated grief and loss with Guy over several years. However, my overarching and enduring theme, and what shines through of course in all forms of child bereavement, is ultimately “LOVE”. 

For those who aren’t sure how to talk about this type of death, I would say that the language you use can make a huge difference to bereaved parents. I recommend avoiding terms which label or identify a person as their problem or are derogatory, for example: addict, alcoholic, junkie/druggie or waster. This applies to the people around the child who died as well, because in my view, nobody chooses this struggle, and many are caught in the complex web of freely available, prescribed and illegal substances which overlap in so many ways and at different times. For example, Guy was frequently given sedatives in hospital but expected to face day to day life without them on discharge. The same substances were viewed very differently in different settings. Even the term ‘substance misuse’ implies a lack of good judgement from an individual. These are all such damning and hurtful terms.

Terminology which I prefer, includes: struggle with addiction (rather than addict), substance disorder (rather than substance misuse) and even substance dependency, because this describes the difficult relationship between the individual and the substance(s). I also tend to use the terms ‘vulnerability’(rather than ‘weakness’ or ‘choice’) and ‘self-medicating’, which describes well for me what Guy was doing from a young age.

Ultimately, we might not always get the language right, and if this all sounds rather complicated, then I would advise anyone to stick with the simplest principles of TCF in offering compassion and sensitivity to ALL bereaved parents and remember there are no lesser or greater categories.

by Jackie Hewitt