Alcohol affects the functioning of the brain. In the most serious cases, it can result in alcohol related brain damage. In the 2020 Commission on Alcohol Harm report, Drink Wise, Age Well noted that the numbers of people admitted to hospital in Scotland with alcohol related brain damage is at “an all-time high”. But how does alcohol related brain damage affect the individual and their family? Annie* shares her story.
My husband has Alcohol Related Brain Damage (ARBD), specifically Wernicke–Korsakoff’s syndrome. He doesn’t have an official diagnosis of course, just one of mild cognitive impairment. That is because there are no standardised tests for ARBD and any examination of what it is, focusses entirely on its similarity to dementia. Any tests used to try to identify his pattern of cognitive deficits are focussed almost exclusively on short term memory. His profile and behaviours, however, are so much more complex than simply not remembering things. Unlike dementia, there are no drugs prescribed to slow the process.
Whilst almost everyone knows about alcoholic liver disease, few know about brain damage caused by alcohol. Wernicke–Korsakoff’s syndrome happens when alcohol prevents the body from getting enough vitamin B1, which is vital for brain cells to work properly. This lack of vitamin B1 can have severe and long-lasting effects on the brain.
My husband is a binge drinker, sober for days, weeks and even months then with the slightest of triggers, can drink a 750ml bottle of vodka within minutes. Its effect on his brain must be the neuro equivalent of drinking bleach. Amazingly enough his liver is in better shape than mine, but his brain has suffered the consequences of his drinking. I am incredibly sad for what he has lost.
Addiction, combined with cold, distant, parenting ran through the psyche of my husband’s family like a never-ending ribbon used to tie up a box of secrets and unspoken harms.
It started almost two decades ago, when he had a trauma at work and felt after 19 years of service, he had no choice but to leave the NHS. Being a public servant was his whole identity. He was also chair of two failing primary school governing bodies, an exemplary parent of our children and his dedication to good works was second to none. He was smart, a good speaker and authoritative on matters of IT. When he left the NHS, he was snapped up by a consultancy, travelling the world, delivering keynote speeches to conferences, advising governments, and sitting on EU working parties.
With the new job there came a culture of late-night drinking in hotel bars. Alcohol is a depressant so gradually, the pain of his past trauma and his addiction to work morphed and he became dependent on alcohol.
Many years later, and three years after he began begging for help from the NHS for his addiction, he delivered a keynote address in London, walked outside, bought a large bottle of vodka, consumed it, walked back into the venue, and collapsed in front of everyone. His working life stopped that day and mine as advocate, carer and sole wage earner began.
We’ve found the treatment models we’ve been offered to be based around cognitive reprogramming that suggests the decision to drink alcohol is a complete choice and those who continue to choose it are bad. In this way those with alcohol dependency are dehumanised, judged and deprioritised on the list of people considered deserving of our help.
My husband certainly made bad choices when he started to drink but he didn’t deserve to writhe on the floor with a massive brain damaging seizure when he tried to stop drinking on his own after he was told there was a six months wait for detox. The day of the seizure changed our lives for ever.
Now I am struggling to find help and support for us both.
I need help as a carer. It is incredibly difficult to keep caring in the face of lies, relapses, emotional outbursts and sometimes verbal aggression. I am running a one person occupational therapy programme, and it is tiring to keep it up with relentless patience, good humour and more forgiveness than a priest. Needless to say, I don’t always manage it.
He has had brilliant support from our local tier 1 services since 2017, but there is no recognition nor has there ever been an acknowledgement that people with alcohol dependency can also have other ongoing mental health issues. He has been hospitalised five times in the last year and disappeared twice. This isn’t just a cost to us but to society. We have always been told that he needs to get completely sober before help will be offered – a bit catch 22 in my view. Now all this is compounded by his ARBD – his volatility, low impulse control, poor concentration and inability to recall things he read yesterday.
I too have been passed from pillar to post. I want to stop my husband’s deterioration and I want to stay married to him. Finding the right service to support us seems impossible. The only helpline which has been able to help me was Headway – the charity who support people with acquired brain injury. They aren’t specialist in ARBD but they know about the chaos carers experience when the person you’re married to develops a hole in their brain. More support is needed for families like ours and more awareness about ARBD is needed across the NHS and treatment services. Until there is more support, we are doomed, like the flying Dutchman or a plague ship, to roam the seas, never allowed to dock anywhere and refuel or seek refuge.
We live on a rollercoaster of my husband’s drinking. He will stay sober for months and like a curling stone will skim across the ice effortlessly with me as the person with the broom, brushing aside all obstacles and anticipating every bump and trajectory of his life to keep him safe. I do this every day, because I know that every time we visit the rollercoaster of a binge, I lose a little bit more of the lovely, kind, gentle, conscientious man I love.
*Annie is an alias and wishes to remain anonymous
If you have experienced any of the issues raised in this post and are in need of information or support, you can visit the Drink Wise Age Well website, which has a range of information for carers.
They also have a helpline exclusively for over 50s to provide guidance and support around drinking 0808 8010750.
More information on ARBD can be found on the Alzheimer’s Society website.
This blog was published with the permission of the author. The views expressed are solely the author’s own and do not necessarily represent the views of the Alcohol Health Alliance or its members.