2024 marks a special year for Adfam as we celebrate our 40th year. Over the course of 2024 we are releasing a series of monthly articles, reflecting on Adfam’s forty years, where things have improved for families, and where we still have progress to make. Along the way we’ll be speaking to a range of key people that have been active in supporting families affected by substance misuse throughout those years.
For our second Adfam at 40 article we speak with Rose, a member of Adfam’s Lived Experience Advisory Group, about the power of peer support.
The chaos and trauma of living with a family member’s addiction
Rose starts by sharing her personal story. Her daughter has had serious alcohol problems since a young age. The knock-on effect this has had on Rose and her other three children has been devastating. She describes vividly the chaos that ensues when caring for someone with a serious alcohol problem, something she and her family have lived through in the most real way. As things escalated Rose reflects on how desperate she was to try and control her daughter’s drinking to prevent things from getting worse, whilst trying to cope with the effects of her behaviour and get her the help she needed.
At that time it was incredibly difficult for Rose to get the help she needed as there was a distinct lack of recognition for families. Even when her daughter was engaging with support services herself, those services did not want to engage with Rose at all or involve her in her daughter’s support.
Her other children were badly affected too, a common trait amongst families affected by addiction yet one that is often alarmingly hidden. Her younger daughter frequently bore the brunt of her aggression and abusive behaviour. As a result, she ran away from home on several occasions in her mid-teens to try and escape, whilst her younger son withdrew completely, shutting himself in his bedroom. When social services got involved too, this added further complexity to an already challenging situation.
Struggling to know how to deal with this situation, Rose describes being left feeling isolated, overwhelmed, and desperate, with no one to talk to, a feeling many families dealing with a loved one’s addiction will associate with.
Setting up a family support group
Angered by the lack of support that was out there for families, Rose articulates how it got to a point when she knew ‘this has to change’. Despite the sparsity of familial support, Rose knew that she couldn’t be the only person experiencing this issue and took it upon herself to make that change. She initially went about a fact-finding mission, trying to find out what was there for families in her local area.
This led her to a meeting with someone from the local council, and she also came across Adfam’s guide on Setting up a family support group. Rose was buoyed by the idea, and took it upon herself to set up her own family support group, to fulfil a clear need in her local area and give family members like her the support they needed.
Like many grassroots organisations Rose had to build from almost nothing and started by printing off and displaying some leaflets at various spaces in the local community, whilst her son helped her to design a basic website. She then liaised with a local alcohol support service and was able to secure use a room at their building for free one evening a week.
Gradually the word got around, and it started to take off and develop into a vibrant, close-knit family peer support group, where family members could go, meet and talk with others with similar experiences. The group survived and met almost every week for about 8 years. Those that attended supported each other through so much, living through all the ups and downs, hopes, and despairs, together. They were there for each other, no matter what.
It wasn’t the largest group, but that didn’t matter, just having the chance to be there in that safe space to let it all out to others who would understand was so important. Where before Rose was carrying all the emotions from dealing with her daughter’s drinking, listening to others with similar experiences was a valuable way to learn and helped her to put her situation into perspective.
“The relief of being able to talk to other people who understand the chaos and understand what you’re going through and get it, provides you with that reassurance.”
Rose articulates that family support also helps you to value yourself a bit more. It gives you the strength to actually put yourself first and not sacrifice everything for your family member. It gives you the encouragement that you actually matter.
Rose points to a particular example that stuck with her of a couple of young women attending the group, who were living with partners that were violent and abusive towards them. Through the group they were able to encourage them to put themselves and their safety first, and to get in touch with the local domestic violence services so they could get that support they needed, which they did.
Hopes for the future
Eventually Rose’s peer support group came to an end. Things became logistically difficult during covid, and Rose and her fellow group members had already gained so much from each other over the years and had reached a point where they felt it was time to move on with their lives.
Reflecting on what’s changed since she started the group, Rose acknowledges she has noticed a positive shift in recent years within services and there is more willingness to talk to family members. Pointing to when her daughter relapsed last summer, her daughter had the opportunity to refer to Rose as someone that was supporting her and that the service could engage with. This more open approach makes a huge difference.
Looking ahead at what changes are still needed and what her hopes are for the future, Rose highlights issues around confidentiality continuing to be a stumbling block. Alongside that the burden that’s placed on family members, and how they are viewed more in terms of recovery capital, and someone that’s able to support their loved one, than someone needing of support in their own right.
“Just because someone is living with their parents at a given time, doesn’t mean they are necessarily prepared for them to stay there, and for them to financially support them. Services need to be asking not just the person with the issue but the family, ‘are you coping?’ and ‘how long can you cope for before it gets too much?’ These kinds of issues need to be factored in rather than just expecting the family to be able to deal with it…We need much more of a whole family approach that talks to families, finds out where they stand, what they can do and can’t do. Don’t just write us into your care plan without asking us!”
It’s amazing to listen to Rose’s story and how much she and her fellow group members benefited from each other over the years through their shared connection and experience. Likewise hearing about Rose’s own personal journey, gradually learning more about addiction and how best to support her daughter’s attempts at recovery without losing sight of her own needs, becoming more confident and gaining a better understanding of when to offer support and when to take a step back, and also realising that it’s not her responsibility to fix every crisis and that by going out and having fun, following her own interests, has been beneficial to both her daughter in becoming less dependent and better able to take responsibility for herself, and for Rose herself and her own mental health and wellbeing. This is why dedicated family support is so desperately needed, whether as a peer group or a 1:1 service, it gives family members a lifeline; enabling them to put themselves first and know that they are not alone.
Join us each month for a featured article to mark Adfam’s 40th year, where we speak to a range of contributors who have played a key role in supporting families affected by substance misuse over the years.