Twenty-one individuals participated in the study and included four males and 17 females whose ages ranged from 27 to 72. The details of relatives with a SUD are summarised in Table 1. Overall, 13 of the participants grew up in homes where relatives used the substance at an early age. Four themes, whose overarching focus is on the psychological impact of caring for a relative with a SUD, are discussed: 1) grieving the loss, 2) living in dread and despair, 3) living in perpetual crisis, and 4) mitigating the impact of substance use in the family.
Theme 1: Grieving the loss
The loss of the relationship between the family and the relative with a SUD was frequently mentioned as a significant consequence of impact addiction. SUD's relative is often unable to maintain the relationship dynamics needed to support sound and healthy co-existence with all members. For many participants, substance use robbed them of a relationship with the person using substances, which was akin to losing their relative. Even then, relatives continued to expend their time, energy, and money into caring for the relative affected by SUD to keep them safe or alive, with the hope that the lost relationship would be restored. After endless efforts did not yield the desired fruit, some participants signaled their loss of hope for recovery and actively grieved the loss of the relationship and the person:
I know it sounds cold, washed my hands of him because I have given so much to try and help him. So much of my life that there's nothing else I feel that I can do. I can't put more time and effort into helping him if he doesn't want to help himself. I've lost a brother because of drugs and substance use (38 years, sister).
Grieving the loss of a relationship was sometimes accompanied by an intentional decision to sever the relationship with the relative affected by SUD. Yet, the diminished connection did not permit the caregiver to move on with their life. Instead, it complicated the grief process:
It impacted me a lot. I've had a lot of grief. I felt like I did lose my son [light sobbing], I lost the son I had, now there is this new man with this illness. (63 years, mother).
The severity of the loss relationship in this quote was significant since SUD's relative was perceived as a different person and referred to as 'this new man.' Participants also grieved the consequences of living with an individual with a SUD. It was not uncommon for the participants to report a material loss when they allowed the individual with SUD to cohabit with them. The company, the individual, kept also worried some participants. Living in such an environment took away the joy of home and, although participants were not living on the street, they felt unease due to the regular conflict and apprehension. Subsequently, they felt as though they had lost control of their dwelling and, as a result, found comfort at workplaces or in public spaces:
So, there was always stuff going missing from my house. Finally, I said, "I'm not buying stuff anymore. I'm not buying any more electronics. I'm not buying anything because everybody's stealing it anyway." It's just so frustrating. It just puts so much stress on me that it's almost like I view coming to work as a getaway, it's, I'm always trying to get away from my house because they've almost taken it over, you know, and it's just so stressful. Like, I can't even tell you how stressful it has been. (54 years, father).
The children were taken away in the middle of the night by the mobile crisis was scary even though they were being taken away due to domestic violence. They were taking care of each other, but now they got separated. I could see the fear on their face, and there is only so much comfort we can give them, for legal, to touch or to hug them (45 years, stepdaughter).
In the above narrative, the participant was grieving the loss of these children to foster homes and the bond and caring relationship between the children, and the fear of them being separated from each other.
Theme 2: Living in dread and despair
Many participants lived with the daily fear that their loved ones would die from overdoses or chronic substance use. While most accepted that their loved one's death from addiction-related causes was inevitable, they never felt fully prepared. One participant described the despair a father felt about his daughter's addiction:
Because of her [daughter], he laments, "every morning I wake up, and I'm scared to get out of bed because I don't want to find my daughter dead." He'll go into her bedroom in the mornings and stand at the foot of her bed and watch to see if he can see her breathing. Like every morning when he gets up, he goes to check to see if his daughter's still alive or if she is dead. That's how bad she is. (44 years, sister)
The daily routine of checking on her and wondering whether she was alive or dead, as narrated above, seemed devasting enough to the participant. The fear that the addiction would cause their relative's death was compounded by the sense of helplessness in their endeavor to intervene and halt the spiraling downward trend. The sorrow was even more poignant when relatives became addicted at a young age as it was presumed that the addiction was robbing them of productive life, noted below.
You almost must [be prepared for that eventuality], and that's sad. He's 34 years old, and he's got a child. He's got so much to live for, but he probably can't see it, I guess. It really hurts, now, knowing Mom is gone. Myself being a parent, I can't imagine what that would feel like being your child. It hurts so bad being a sibling. Just imagine it being your child (38 years, sister).
Participants were wearied by the constant fear, worry, and dread that accompanied caring for an individual with SUD. It was evident that most of them had reached the end of their tether, and without successful mechanisms for self-help, the participants often felt alone and on the verge of breaking:
I was thinking to myself, "I can't live like that." And I can't help her. She doesn't want my help even though I work in the field of addiction and mental health. I've tried helping her, but she doesn't want my help, and I know I can't help her. I worry. I'm worried is she's alive, and I'm worried she has enough to ear. I worry about where she's sleeping. It was like years and years, and then I told myself, "I can't be doing that to myself 'cause I'm gonna get sick." I said, "I need to help myself." (62 years, mother).
Many participants felt that the actions and energy their families expended were ineffective because their relatives continued to use them, leaving them gasping for hope. Due to the chronicity of addictions, many lived in a perpetual crisis.
Theme 3: Living in perpetual crisis
Caregivers experienced a state of perpetual crisis caused by a chronic lack of necessities of life, abuse, neglect, and overwhelming demand for care. Addiction was intergenerational among families in environments where substances were present. Intergeneration substance use was a complex social issue to manage by those that did not use substances:
This intergenerational addictions and dysfunction's like a train you can't stop it, you try, everything, like I put my kids through, we went to family treatment, and they all went to individual treatment when they were teenagers so, it's like you just can't stop it (57 years, mother).
Addiction also provided an opportunity for violence and a need to escape a toxic environment, which led to family dysfunction and disintegration. Children mostly were at significant risk of being caught in the fallout, including family breakdown, parental neglect, and diverse forms of child abuse:
Dad was a substance user, and when I was three years old, my mom left him because of his substance use and physical abuse. She then met a man who was a substance user and a drug addict who abused me in just about every way possible from the time I was three until I was about ten (45 years stepdaughter).
The impact of SUD on fueling family crises was an extensive experience that almost every participant shared. In addition to a child or spousal abuse, childhood exposure to substances, parents being both physically and emotionally absent, and divorce and marital separation were noted. Moreover, when more than one relative had a SUD, other members of the family were inadvertently neglected:
You will neglect the other part of your family because you're so consumed with what that child is doing. You're wondering, "Where are they? Are they safe? Are they sleeping? Are they eating? Are they alive?" Whatever it is. You're so consumed (57 years, mother).
Not giving up on the SUD individual meant that the care they provided became a full-time job. To the study participants, this meant taking responsibility for many aspects of their loved one's lives, including providing financial support, assuming the parental role to their grandchildren or grown children, providing necessities for living, and meeting health care expenses, such as treatment. In most instances, the long-term assumption of this role wore down the caregiver, impacting their health in the process. The perpetual need to care for a relative with SUD also affected participants' work-life balance. Understanding factors that shaped these experiences are vital to the development of self-care strategies.
Theme 4: Mitigating the impact of substance use in the family.
Participants expressed a lack of understanding of how addiction impacts families, which influences their appreciation for their need for self-care or identification of effective ways to provide support. This lack of understanding was most profound among participants who did not have prior lived experiences with substance use. Furthermore, their lack of knowledge about addiction and its trajectory to unrealistic expectations of the willingness of the individual with the addiction to enter treatment and recovery:
They [relatives] don't understand the trigger points. They don't understand, when she's as bad as she is, it's not a choice that she's making; it's her survival cause she's so sick. They don't understand like even, even like when I say education, there needs to be something for people who can go and they can learn about what their loved one is going through, that it's not just a matter of "oh well I'm just going to wake up, and I'm going to quit today" (44 years, sister).
Families yearned for resources to help them make sense of their experiences and provide options for dealing with their heartache. Caregivers indicated that they could not find educational resources to increase their knowledge about addiction, its impact, and treatment. The lack of available resources suggests that healthcare providers were not well informed about the impact of addiction on caregivers, how to support families, or of resources available:
There's no education. There's nowhere for any of the families to turn, like. There is nothing. There's nothing. There are no support groups. There's no education. There are no clinics, there's no, people like my dad, there's no "let's look at the big picture, let's have some clinic and put everything together to treat you as an elderly man with all these conditions." That the direct link is my sister. None of that exists. There's a lot of work to be done (48 years, mother).
Although some participants were not aware of self-help groups such as Alcoholics Anonymous (AA) or Al-Anon, those who did found them to be a supportive resource that helped them cope with caregiver fatigue. In these groups, they felt comfortable sharing their pain and concerns with others who truly understood what they were going through. For some, seeking counseling from a counselor without the lived experiences of being impacted by addiction was not deemed as valuable as attending AA meetings. Moreover, Al-Anon meetings were lauded because they were devoid of stigma and judgments about addiction, and members could relate to and learn from each other:
When I go there and dare to start talking about what was happening in my house, all these other people in the room were doing this and nodding their heads as they knew. I was like, "how do you know what's going on?" Or when they would share before I even started talking, and they would talk about what was going on, I was thinking, "were you looking in my kitchen window because you're talking? You're telling a story that I know." They knew my pain (50 years, Sister).
Given that many participants credited Al-Anon for supporting them, and a space to engage with shared experiences, families affected by addiction must be provided the opportunity to learn about and locate Al-Anon groups. Some participants used formalized counseling both as individuals and as a family. Counselors provided mental health support and were a source of knowledge on ways to cope with caregiver fatigue:
There was a time when I saw professional help where I was seeing a psychologist for some of the stress. I keep in contact with him every so often; give him updates on how I'm doing. He gave me a lot of tools. He helped me a lot and gave me many tools on how to deal with certain things (57 years mother).
Formal counseling was educative and helped both children and caregivers make sense of the complexities that addiction caused. Through counseling, the affected family were able to understand the need to focus on themselves, how to deal with guilt, and how to develop healthy boundaries:
And I'm, I'm a strong believer. I mean, I've used counseling over the years when I've had situations where I've just said, "I need an outside person to listen to this and give me some clarity because inside and talking to the wrong people is not helping," so I have sought counseling over the years. It's always been a very positive thing for me. It always allows me to recognize my vulnerabilities and trigger my thoughts and channel them in a different direction (56 years, sister).
Seeking online information on addiction demonstrated self-determination, ambition, and self-initiation. It helped caregivers not to be constrained by the resource limitations that formalized services had:
I have done lots of online because I like to learn anyway, so I access a lot of information online. I've talked to a couple of private rehabs and investigated resources from them where I've had some online counseling with them, so I've done some of it (56 years, sister).
Social media was also a resource for finding useful information on how to cope with caregiver fatigue. Participants noted Facebook as a repertoire where information about addiction and self-management strategies were shared by a network of people connected to it:
She [a friend] has a Facebook group on social media, so I thought, "I'll enter there," so I did. That's where I learned so much about what I'm going through, how I can help myself, what I need to do for self-care, all about the art of enabling, and what I was doing. (57 years, mother.)
Caregivers affected by addiction showed resilience in seeking self-care through seeking out and attending self-help groups, counselors, and online platforms. These support services helped them make sense of their experiences and lessen the pain caused by caring for an individual with an addiction.