TribeUne: What is the role and impact of caregivers? What challenges do they face?
Ella Amir: It is important to recognize that while there are many similar experiences, caregivers are different from one another, face different situations, and have different roles and impacts.
When it comes to challenges, we often think of the practical ones - carers do a range of things their loved ones would otherwise do for themselves. But the psychological burden of coming to terms with a condition in a loved one and adjusting expectations, grieving for someone who may not be what you hoped they would or could be - is often heavier.
We only see caregivers who ask for our help. Many caregivers don’t actively seek help and may be suffering more than those who do. Sometimes, struggling on their own proves too difficult, challenging, and they don’t know what to do or where to turn; they may end up disengaging, even severing contact with ill loved ones.
TribeUne: Why do you think carers are not always looking for help?
Ella Amir: Getting help can be difficult; and knowing where to go for help is not obvious. Navigating the system can feel overwhelming. Some just lose hope and stop looking for help...
As time goes by, we see people who come to us earlier and younger; this is a good thing. When caregivers don’t come early, it is often because they think that the crisis is a passing episode, that it will go away and that things will get better. It takes time to accept it may be a longer-term situation.
It is sometimes difficult to accept you may require, and even deserve help. Some caregivers feel uncomfortable seeking help for themselves when their loved one is suffering.
It is sometimes difficult to accept you may require, and even deserve help. Some caregivers feel uncomfortable seeking help for themselves when their loved one is suffering. It comes from a good place, but some don’t recognize early enough that a lack of help may compromise the help they can give their loved ones.
In other cases stigma may be a reason why some don’t ask for help. There is a lingering sense that mental health says something about the family, and we often see loved ones as an extension of ourselves; there is also a self stigma.
I firmly believe that mental health should be at par with physical health; there should be no shame attached to mental health problems and illnesses. There is no health without mental health, and we know that when a family member is diagnosed with mental illness, the entire family is affected.
TribeUne: People have been talking about the impact of the pandemic on mental health - what do you observe? How has it affected certain populations?
Ella Amir: Isolation is a risk factor that can trigger, anxiety and depression… Interestingly, some people diagnosed with mental illness were doing quite well at the outset of the pandemic; they felt that now everybody gets to experience some of their experiences: being isolated, often feeling lonely and abandoned.
Some people diagnosed with mental illness were doing quite well at the outset of the pandemic; they felt that now everybody gets to experience some of their experiences: being isolated, often feeling lonely and abandoned.
Technology is a godsent; there is so much we wouldn’t have been able to do if this pandemic hit just a few years ago - and still, there are things missing, such as not being able to look someone in the eyes over a live conversation. Communicating virtually can be challenging, but not altogether impossible.
TribeUne: How has it affected caregivers?
Ella Amir: There is not just one way carers have been affected. It can be difficult for a family living together in close quarters with a loved one with mental health challenges, but it can also be difficult if they don’t live together.
Like many people, some carers experience more anxiety during these trying times. We notice it in our conversations, where many people are less patient and more frustrated. The uncertainty associated with the pandemic is not helping, and there is certainly a form of pandemic fatigue, especially during the Winter. This is not different for caregivers than for the rest of the population, but it comes as an additional burden.
When it lingers, isolation can be even more detrimental
When it lingers, isolation can be even more detrimental. Some are more introverted than others, need more or less connection in their lives, but the stigma of mental illness dissuades some caregivers from sharing their burden, even with family, which can increase their sense of isolation. Many find it easier to share with strangers who are going through similar experiences.
TribeUne: How does caregiving evolve through life?
Ella Amir: As mentioned earlier, not all caregivers are the same. Parents taking care of children with mental health issues have different preoccupations from those who care for a parent or a sibling with mental illness. As parents get older, their preoccupations are often with the future of their ill loved one, when they would be no longer available to help. “What will happen when I’m no longer here to take care of my son/daughter?”, is a growing concern.
While these concerns often generate a lot of anxiety, many find it difficult to take the necessary steps to address their anxiety, for example by preparing a will and stating who will take care of their loved one. It is often mentally and emotionally difficult to face one’s own mortality, but it can be relieving and reassuring as well.
TribeUne: If you had a magic wand granting you any wish, what would you do?
Ella Amir: I would change two things. First is impressing upon society that ALL of us contribute to the welfare of our loved ones, and, by definition, play part in how they may turn up; sometimes we do good and sometimes – less so; but we should remove the shame and guilt many caregivers experience. I believe that without shame and guilt, people may seek help sooner and may feel less isolated .
ALL of us contribute to the welfare of our loved ones, and, by definition, play part in how they may turn up; sometimes we do good and sometimes – less so; but we should remove the shame and guilt many caregivers experience
Second, I hope that mental health would become a priority as much as physical health. Today, the almost only possible treatment is a pharmaceutical, but there are other modes of treatment that should be explored and made available more broadly; for example medication-free programs and different forms of therapy. We talk more openly about mental health today, and this is encouraging. The pandemic brought mental health challenges closer to home, and I hope it will not be forgotten once the pandemic is over.
TribeUne: Anything else on your mind?
Ella Amir: There is so much more we can talk about. Talking about human beings is a complex, multi-layered subject: we can talk about behaviour, ideation, emotional state … I don’t think it’s very useful to address behaviour without trying to understand what triggers behaviours.. We should also try to understand the culture and values that impact people’s behaviours; this is quite different from one culture to another. It’s a fascinating subject!
Ella Amir is the Executive Director of AMI-Quebec Action on Mental Illness, a non-profit organization that supports families affected by mental illness. She has recently been appointed to the Order of Canada in recognition for her work in support of caregivers.