Caring for someone with an alcohol or drug problem who is seriously ill

This isn’t just a problem for the person who is drinking or using drugs. It can also have serious adverse effects on the rest of the family. Many families try to cope with this burden on their own. They may not know where to get help, feel ashamed, or perhaps have tried to get help before and had poor experiences. If you’re part of a family that’s caring for someone with a substance problem whose is seriously ill, we have written this leaflet for you.

We use the term “family” in this leaflet but that doesn’t just mean biological relatives or a husband or wife. There are many different types of families, and some people don’t have family in the traditional sense but do have close friends or supporters/carers who fulfil that role. Some keyworkers are very close to the people they work with, particularly if they have worked with them for a long time, and may feel like family to those people. The leaflet is for anyone who’s supporting someone they are close to.

We want you to know that:

1. You are not alone. Hundreds of thousands of families in the UK are in a very similar situation, and there is no shame in caring for someone with a substance problem.
2. Everyone deserves good healthcare. You may face negative attitudes from some people – even some health/social care professionals – and you may need to be prepared to challenge people who do not seem to be treating you or your relative with respect. There are still some who think that people who use substances do not deserve healthcare because they are “choosing” to damage their own health. But no one chooses to have an alcohol or drug problem, and everyone deserves good healthcare.
3. Whatever your relative says, if you feel that their substance use is a problem, then it is a problem that you deserve help with. People often develop substance problems when they have stressful or painful emotions that they do not know how to cope with. They may think (and say) that they are just “enjoying themselves”. But relying on alcohol or drugs to the extent that they harm other aspects of their life is a sign that they are struggling to cope. And even if they can’t see the harm that’s occurring, their behaviour may well mean that you and other members of your family are experiencing physical, mental and emotional health problems, financial worries, family tensions, and even your own substance use issues as you struggle to cope. Getting help in your own right is important for you and is also likely to help your loved-one’s recovery.
4. Many people with substance problems make a good recovery. But the sad fact is that some do not. Long-term substance use can cause serious physical damage and can be fatal. Even if someone becomes very unwell as a result of substance use, they may continue to drink or use drugs. Caring for someone who is using alcohol or drugs can be extremely stressful and emotionally draining. You may need help from a range of people with expertise in healthcare, substance use, and palliative care, especially if it becomes clear that your loved-one is approaching the end of their life.
5. If you don’t get the right help in your first attempt, please keep trying other options. We’ve made some suggestions in this leaflet about the types of services you can approach.

Your family may experience an enormous amount of strain in trying to care for a relative with a substance problem. Some of this may arise from them claiming that they don’t have a problem. Or it can arise from their behaviour (which may be erratic, chaotic, or deceitful) and just from the day-to-day worry of looking after them. This can lead to a lot of self-questioning and uncertainty about what to do for the best.

Some families become quite isolated. They may feel that others are judging them or feel ashamed about their relative’s behaviour and want to keep it secret. As time goes by, families may get used to adapting their behaviour around their relative’s alcohol and/or drug use, but this can lead to the family’s social circle becoming even smaller. And if their loved-one’s health deteriorates, they may find themselves with more and more caring responsibilities.

You and everyone supporting your loved-one will be working hard to keep them alive and healthy. But we cannot ignore the fact that long-term substance use can cause serious physical harm and can lead to premature death. Thousands of families experience the death of a relative with a substance problem in the UK every year. Any death is difficult, but bereavement following an alcohol/drug problem is particularly painful and can have a long-term impact on the family. Many people who experience this kind of loss feel that ordinary bereavement support doesn’t meet their needs, because it doesn’t acknowledge the extra emotional pain of having loved someone with a substance problem.

We’ve set out below some examples of the types of help that might be useful to you if you are caring for someone with an alcohol or drug problem whose health is poor - particularly if their life is drawing to an end.

Here we have set out here a short case-study drawn from our work. It shows how it is possible to make the best of some very difficult circumstances and ensure that someone with a substance problem can be treated with dignity and supported to achieve as good a death as is possible.

Clare’s husband, Bill, was a social drinker. After a bereavement, his drinking gradually became heavier and he started losing interest in his business and spending every evening in the pub. He started to experience breathlessness and was diagnosed with narrowing arteries. Attempts by Clare and their adult children to get him to cut back on drinking were unsuccessful, despite Bill recognising that he was damaging his health and his relationships.

He was referred to a local alcohol treatment service, but after attending a couple of sessions he decided it wasn’t right for him.

Bill’s symptoms gradually grew worse. He was diagnosed with diabetes and had several blood infections. He was admitted to hospital but discharged himself, at which point his doctor told him he was likely to have only a year left to live. Bill drank heavily for the next ten days and then collapsed. The doctor gathered the family to tell them that Bill only had three to six months to live because his liver and kidneys were failing.

The next day, the palliative care team arrived at the house with a hospital bed and other care equipment, and nurses or carers started to visit every week. They made a detailed care plan, using a file to record Bill’s physical needs, his medication, decisions about his care, and his wishes about end-of-life. They arranged house adaptations (rails, ramps and hoists) and provided care and emotional support for Clare, making phone calls to her every few days to check how she was. Clare described her life at this point: “I was a full-time carer. It was gruelling”. She also described how helpful the palliative care nurses were: “They’d walk in the door and I’d burst into tears and they’d say, ‘Right, come on, cup of tea!

Let’s go in here’. They saw to Bill and said, ‘Right, he’s fine. Come on, let’s shut the door. Let’s get a cup of tea. What’s the problem?’. Then I would say, ‘He’s had me up all night. He’s this, he’s that and he’s the other. He’s soiled himself’. They were like, ‘Don’t worry about that. Let’s get you sorted’. And I used to feel guilty because I thought, ‘You’re coming for Bill and yet I’m a dithering wreck and you’re having to sort me out and get me a cup of tea’.”

Bill died at home. Whilst still tragic, Clare recognises how valuable it was to know he was dying and be able to make the most of those last months: “I had time to say goodbye to him. You know what I mean? I knew this was coming and we made sure that we’ve made memories. We’ve got videos, we’ve got pictures. We made sure that in the time we had left we did everything, and that really, really helped.”

Alcohol Change UK works to reduce the serious harm caused by alcohol. Its website provides information and advice around managing your drinking, as well as where people can find support for themselves and for supporting someone else who is struggling with their drinking.

Website: alcoholchange.org.uk
Email: [email protected]

Alcoholics Anonymous is a fellowship of people who once drank to excess, who acknowledge that they could not handle alcohol, and now seek to live a new way of life without it. They run local support groups throughout the UK and online.

Website: alcoholics-anonymous.org.uk
Helpline: 0800 9177 650
Email: [email protected]

Narcotics Anonymous is a fellowship of people for whom drugs have become a major problem, and who meet regularly to help each other stay drug-free.

Website: ukna.org
Helpline: 0300 999 1212
Information about local meetings: [email protected]

SMART Recovery UK helps people recover from addictive behaviour and lead meaningful and satisfying lives. Their approach is secular and science[1]based, using motivational, behavioural and cognitive methods. They run a network of self-help meetings.

Website: smartrecovery.org.uk
Enquiries: 0330 053 6022

The British Liver Trust aims to increase awareness of liver disease and provide information and support to people affected by liver disease. They also campaign for earlier detection and better treatment of liver disease.

Website: britishlivertrust.org.uk
Helpline: 0800 652 7330
Email: [email protected]

Adfam work to improve the support for families affected by drugs and alcohol. Their website includes videos which explain how families can understand drug and alcohol misuse and learn skills to help themselves. It also has a directory of family support groups throughout the UK.

Website: adfam.org.uk
Email: [email protected]

Al-Anon Family Groups provide support to anyone whose life is, or has been, affected by someone else’s drinking, regardless of whether that person is still drinking or not. They recognise that for some people the wounds still run deep, even if their loved one may no longer be a part of their lives or have died.

Website: al-anonuk.org.uk
Helpline: 0800 0086 811
Email: [email protected]

DrugFAM supports everyone affected by or bereaved from another person’s harmful use of alcohol, drugs, substances, or gambling, including family, friends and colleagues. Through their services, they aim to give people the strength to break free from the cycle of addiction and rebuild their lives.

Website: drugfam.co.uk
Helpline: 0300 888 3853 open 9am to 9pm, 365 days a year
Email: [email protected]

SMART Recovery Family and Friends (F&F) offers a network of support meetings for people who are affected by the addictive behaviour of someone close to them. Rather than focusing on their loved one, the F&F programme invites participants to spend time concentrating on themselves and their goals. This includes looking at some of their habitual responses to their loved one and exploring whether these are helpful or not.

Website: smartrecovery.org.uk/smart_family__friends/

Dying Matters is a coalition of members across England and Wales, which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. Its website hosts the UK’s most comprehensive directory of services for people in the last years of life, their families, carers and friends. They operate in Wales as Compassionate Cymru.

Websites: dyingmatters.org and compassionate.cymru

Marie Curie is the UK’s leading end-of-life charity. They provide frontline nursing and hospice care, a free helpline and a wealth of information and support on all aspects of dying, death and bereavement.

Website: mariecurie.org.uk
Helpline: 0800 090 2309

Hospice UK is a national charity working for people experiencing dying, death and bereavement. They work to improve the quality of palliative and end of life care and encourage collaboration between services. Their website includes a hospice finder service.

Website: hospiceuk.org

Macmillan Cancer Support provides practical, medical and financial support for people live with cancer, including where to find practical and emotional support at the end of life.

Website: macmillan.org.uk
Helpline: 0808 808 0000

Cruse provides support for people after the death of someone close to them. Their mission is to offer support, advice and information to children, young people and adults when someone dies, so that all bereaved people have somewhere to turn.

Website: cruse.org.uk
Helpline: 0808 808 1677

Author: Dr Sam Wright, Manchester Metropolitan University

Supported by Adfam and Alcohol Change UK, and funded by the National Institute for Health Research