Fifteen years ago, my dad died in hospital having spent a week on an intensive care ward because his organs were shutting down. Grieving with my mum and sister, I admit to also feeling a sense of relief that I no longer had to worry about him, feel frustrated about his drinking or ashamed about his behaviour. The following years were hard: coming to terms with not having had the relationship with a dad I had wanted; finding compassion for him and forgiving myself for having shown little understanding – despite having researched substance use for over a decade at the point when he died.
I’m writing this blog to say what I wish someone had said to me before he died. I hope you find it helpful.
We live in a society where alcohol is heavily marketed. It used to celebrate or to commiserate - and everything in between. Alcohol has such a grasp on our lives that if you don’t drink alcohol at a social event, people may ask you what the matter is. Yet people who use alcohol more heavily than is socially acceptable - in particular, people who develop health problems linked to their alcohol use - are judged to be weak-willed, irresponsible and selfish. At the same time, alcohol education is very poor in the UK. Most people know very little about how alcohol affects the body, the long-term consequences of frequent drinking or the symptoms to look out for. Even professional training for doctors, nurses and social workers barely touches on substance use (if at all) - despite it featuring prominently among the people they work with.
Many people who are dependent on alcohol (or other drugs) never go to treatment services. Their substance use is observed, worried about, and discussed – sometimes calmly, sometimes not – by the people who care about them. The frustration, powerlessness and resentment that families and friends often feel about their loved one’s substance use is accompanied by a constant questioning about how they can get them to stop drinking: what to do for the best? Sadly, trying to talk about this to others – to get help – often raises feelings of shame, misunderstanding and isolation. Best to keep this dirty little secret quiet then.
Thankfully, many people who drink or use other drugs problematically recover: they control their use, or they abstain completely. But some people do not. Like any of us, they may become ill at any age with a long-term health condition that is unrelated to their substance use. Or they may experience health problems that are linked to alcohol: liver damage, heart problems, kidney problems, cancer. The list goes on. Sadly, many people who have difficulties with substances avoid going to their GP – they don’t want to be lectured about their substance use, or they’ve made appointments to get help in the past and been told to just ‘stop drinking’, felt judged or shamed, or were not provided with any support that actually helped them. So, they don’t go and they don’t know how ill they are. In part, their substance use may dampen down some of their health symptoms and so they ‘self-medicate’ both their physical health problems and any anxiety and stress that accompany their ill-health.
But basically what is slowly happening is that unbeknownst to them, close family and friends are becoming carers. This gradual, but intensifying accumulation of caring roles – often coming on top of years of emotional strain and anxiety – places families under huge stress. Without medical help, the severity of the person’s health problems is unknown and the reality of the long-term burden of care is not recognised. As a result, no one acknowledges the family caregivers’ own support needs. Yet these are often substantial as the stigma of problematic alcohol use means that many families do not talk about what is happening with their friends - so there is very little emotional support for them to tap into.
For the past five years I have been fortunate to be working with Prof Sarah Galvani and her team at Manchester Met University, researching end of life care for people who use alcohol and other drugs. At times, as you can imagine, it can be pretty harrowing work. But we have come across fabulous, heart-warming examples of compassionate care being delivered by families and friends, as well as by dedicated health and social care practitioners. We’ve recently been working with 10 agencies across Liverpool and Sefton to see if we can co-design and introduce better palliative care for people who use substances. As a result of that work, we have developed a range of information and advice for people who use substances and are concerned about their health, as well as for their family and friends and the practitioners who support them. You can take a look at these resources here: https://endoflifecaresubstanceuse.com
I’m especially proud of the leaflet for families of people with alcohol/other drug problems that we have produced with Alcohol Change UK and Adfam. It says what I wish someone had said to me when I was a teenager. Hopefully it will help those of us caring for people who use substances to navigate the path between hope for the future and the reality of what we are living today.
Download the leaflet below (written in English & Welsh):