Introduction
Brief literature review
Methods
Results
Participant | Age | Gender | Person with Addiction |
---|---|---|---|
PA.001 | 44 | Female | Sister addicted to opiated for more than 5 years |
PA.002 | 56 | Female | Brother is addicted to alcohol and a history of cocaine use. |
PA.003 | 48 | Female | Dependents are addicted to methamphetamine. |
PA.004 | 57 | Female | Daughter who is addicted to methamphetamine. |
PA.005 | 57 | Female | Children are addicted to substances- methamphetamine. Cares for her grandchildren because the daughter is unable to. |
PA.006 | 28 | Male | Sisters and father are addicted to drugs and alcohol. One sister has HIV, Hep C, TB, and diabetes. |
PA.007 | 27 | Female | Sister is addicted to methamphetamine for 13 years; brother struggles with alcohol, and the mother is addicted to opiates and gambling. |
PA.008 | 50 | Female | Two brothers are addicted to alcohol and drugs and have Hepatitis C. Ex-husband was addicted to alcohol. |
PA.009 | 37 | Female | Father struggles with alcohol addiction. |
PA.010 | 50 | Male | Ex-wife’s father struggles with alcohol addiction |
PA.011 | 54 | Male | Two sons are addicted to alcohol and drugs and also suffer from HIV. |
PA.012 | 45 | Female | Stepfather is addicted to alcohol |
PA.013 | 63 | Female | Son is addicted to alcohol and methamphetamine. |
PA.014 | 37 | Female | Father is addicted to alcohol |
PA.015 | 38 | Female | Brother is addicted to alcohol and used cocaine and methamphetamine. |
PA.016 | Female | Father is addicted to alcohol, and her mother died from a methadone overdose. | |
PA.017 | 72 | Male | Daughter is addicted to alcohol; grandson, 22 struggles with alcohol addiction. |
PA.018 | Male | Father was addicted to cocaine for more than 10 years. | |
PA.019 | 22 | Female | Brother is addicted to alcohol and cocaine. |
PA.020 | 62 | Female | Daughter and boyfriend are addicted to drugs |
PA.021 | 35 | Female | Three sisters are addicted to alcohol |
Theme 1: grieving the loss
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).
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: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).
A sense of lack of security at home is assumed in the narrative and further evokes community insecurity. Other relatives moved out of their shared home to live in shelters or on the street because they felt their lives were threatened.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).
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.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).
Theme 2: living in dread and despair
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.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)
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: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).
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.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).
Theme 3: living in perpetual crisis
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: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).
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: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).
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.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).
Theme 4: mitigating the impact of substance use in the family
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: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).
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: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).
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: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).
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: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).
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: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).
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: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).
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.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.)