Grief and Care - An Interview Dr. Joanne Cacciatore

So many of our families whose children are dying or have died shamefully end up in psychiatric hospitals because no one knows what to do with them. So when they're having a moment of distress, psychological breakdown, when they're weeping and crying and protesting and screaming, which they have every right to do when their child has died, people don't know what to do with them. So they take them to the emergency room, and then they end up inpatient because everyone's concerned about self harm. But, you know, psychiatric hospitals aren't a place for bereaved parents. Bereaved parents need a different kind of place to go. Bereaved people in general need a different kind of place to go. Bereavement isn't a medical issue. Grief is a human issue and a spiritual issue. You sort of feel like no one in the world can know your pain and your grief and your trauma. And then you meet an animal that's been beaten and starved, an animal that's been taken too soon from its mother, and you start to understand that suffering is what connects us all. This is Aspen. And he's a jumper, so we're trying to teach him not to jump. And Aspen I found in the middle of the highway just south of Kanab with a face full of porcupine needles. And this is Francis. He had been hit by a car in Gallup, New Mexico, when I was on my way back from a research study in South Dakota. Picked him up, and now he's a rescue dog. All right, guys, we're coming. We're coming in. Hi. Hi, bunny. Hi, Chimaco. Hi, Scout. Scout's our punk. He's the troublemaker. The little one is a little shy. That's Chook. He can be a little grouchy, so just watch your feet. That was awesome, Caspian. He's the one who broke my toes. He was so picked on and so abused. Whoa. She is the baby of the dolly. Ma, Come see Mommy. Wilbur. Hi. Oh, you like the belly rub? Watch this. Now he's gonna get on his side so we can rub his belly. Somebody left him in a bank. Possessed house. So he was drinking pool water to survive. And he was very thin, and now he's not. So a lot of things on the property have special meaning. Like that wind chime was donated by a bereaved mother in memory of her two sons. So she only had two sons, and both of her sons died. That tree down there is in memory of Giddy and his classmates. His kindergarten classmates made all the wind chimes on that in his honor. It's a holy place.

You know, we met through our mutual dear friend, Dr. Gabor Mate. And in a lot of ways, I work in the field of addiction and recovery. And you work with people that have struggle with severe traumas and a lot of people who've lost loved ones, parents who have lost children and all forms of disease to dying, to murders and all kinds of stuff.

So.

How did you start this and why?

Yeah, so, I mean, I was a mom back in 1994 and was pregnant with my fourth child, and she died very suddenly as a newborn baby. And I had no understanding of why she died. They never found a cause of death, and there wasn't any support organization around to help me through it.

Sweetie.

Hi, Aspen. You want to be part of the interview?

There we go.

This is Asp, one of the animals. He's going to try to actually get up on the table. You can see that they're very well disciplined. Anyway, so I began sort of a downward spiral. There was no support for me. And, you know, I went to several psychologists and therapists who wanted me to go on medications. Some thought I should be hospitalized. And I just kept saying, no, our love is worth all the pain I feel. You're not taking this from me. It's all I have left. So I really pushed back hard, but I was flailing. So I weighed, you know, I weighed 90 pounds within a few months. And I had three little kids to take care of, and I wasn't doing a very good job taking care of them. And P.S. that's how intergenerational trauma gets sent from one generation to the next. Because had I not been able to pull myself together, had I not been able to do things, the things that were important to me, to cope in the way that made sense to me, I don't know that my children would have had the advantage of having a present mom anymore. So, I mean, I think in our culture in general, we don't do grief very well. We tell people, don't feel any emotion other than happiness. I call it the happiness cult in my book. So you're only allowed to feel happy or joyful or encouraging, and you're not allowed to feel any of the emotions that are undesirable by our standards. Grief, despair, anger, sadness, etc. That's not helpful because what happens when you can't feel an emotion is you have to numb out. And that's where we get into trouble with substances. That's where we get into trouble with pornography, with gambling, with food, you know, anything with sugar. Anything can be an addiction. Anything that takes us out of the way that we feel, anything that we use to manipulate our emotional state can become an addiction and can become a really unhealthy coping mechanism. And our culture is full of examples. And so what I used to tell people is, I don't want. I would go to all these psychologists and therapists, and they'd say, well, we're gonna help you, make you feel better. And I'm like, no, I don't want you to make me feel better. I just want to feel. I just want to feel what I feel. My emotions are legitimate, and you don't get to take them from me. It's. I call it psychological imperialism. I. And we do it all the time where we try to take someone's emotions and transform them into something good or something meaningful. That can happen. And it does happen, case in point. But it has to happen on its own accord. It has to happen. It has to unfold in its own time. We can't rush it. We can't usher it through the door. The early mystics knew that spirituality is a way of. Into suffering, not a way out of suffering. Social support is one of the most important things out there for people who are grieving. And so how do you find good social support? That's tricky, because what happens is the social system believes the sort of inculcated, dysfunctional messages of our culture about grief. And then people internalize them. Like, oh, well, it's been two months. It's been too long. You know, I should be better by now. You know, I have to feel happy. You know, I mean, I had someone here last week who was saying that when she feels sad about her daughter who died, her friends come over and say, come on, let's go have a drink. And she says, I'm sad. Her friends actually say, come on, let's go have a drink. And I'm like, that's not helpful. That is not. If you want to enjoy a glass of wine, enjoy a glass of wine. Don't enjoy a glass of wine to take you out of your emotions. Right? So, okay, so what do people do? And this is really hard. You have to seek the kind of support that helps you inhabit your grief, that is compassionate towards your grief rather than avoidant of grief. So that support groups are sometimes really helpful. Sometimes faith communities. Sometimes faith communities are the worst offenders. Sometimes family systems are wonderful, and sometimes. Sometimes family systems abandon the person who's grieving because they want you to be who you were before. And when you have had A catastrophic loss, you're not the same person. It fundamentally at a cellular level changes you and it's hard for families to see that.

Define a catastrophic loss, where you said a cellular level, it changes you because that's, I mean, if we just paused on that and explain what that is like, what, what would be a range?

Well, in the research, so I'm a researcher, so in the research, traumatic grief or catastrophic loss would be, you know, generally speaking, we understand the death of a child across the board. Any age, any cause is always out of order anachronism and is always catastrophic for families. The death of a spouse can be catastrophic. The death of a parent can be catastrophic. Particularly for younger children and adolescents, that can be catastrophic. Homicides and suicides are almost always catastrophic. Even if you know you have a 90 year old grandma, if someone's murdered her, that's very different than she died of cancer and had palliative care and pain control. Does it make sense? So catastrophic loss generally is the death of a child at any age, a sudden, unexpected death, a death that might include disfigurement, a violent death, homicide, suicide, those kinds of things.

Not that there's any right answer to any of this because I would imagine everyone experiences grief. I mean, I know ways that I've done it positively and very negatively when something like that happens. What sort of things? The essential things you must shift or look at or do to give yourself the best way to feel. Go through it. I don't know if the term go through it or what would you even call it? Like, once a catastrophic event happens, what then needs to happen for the person's life to not unravel?

Good support is absolutely essential and key and not avoiding grief. That doesn't mean you can't take a break. But when we avoid our grief, it just presents and represents itself through the course of your life. Over and over, it just changes form, it gets clever and it looks like something else and then it's not even real. What it is, is a chameleon and it will change form and wreak havoc in our lives. I mean, I've worked with people whose children died 40 years ago and they've been using drugs, they've gone through seven marriages, they've lived in eight states, 27 jobs, you know, just running and running and running. And it takes its toll on our bodies too. And I mean, that's what we're doing with the care farm. So like your traditional substance abuse residential facilities, you know, they can run 1000 doll easily. And the Care Farm model. You know, in most places you can for day programs, you're looking at 60, $75 a day. For residential programs, you might double that. And I'm a researcher, so I'm conducting research and I'm collecting data on our day programs. And it's phenomenal what we're doing to help people. It's phenomenal.

So you're a professor.

I am.

And so talk about that. Like, what have you. What have you learned? What are you learning that people should know?

Yeah, so I'm a researcher at Arizona State University. And so this is my area. And, you know, I got interested in it because not only did I have my own personal experience, but then I started listening to other people's stories. And I was like, we're all sort of alone in this. Why is this like this? I mean, we have programs for everything, and yet the most common human experience clears out a party in 30 seconds. Why are we so afraid to talk about our painful emotions, our grief and our losses? And so I said, that has to change. Started the foundation, started meeting with many, many families, started helping many families. Went back to school, got a couple bachelor's degrees, master's degree, PhD. Fast forward. Then I got a position in research, because that's how you change practice. So one of the things that was incredibly distressing to me is how pedagogical models were failing people over and over and over again. Because we were medicalizing grief, because we were treating grief as anathematic. We were. We were treating grief as the enemy, as something to get over, as something to overcome. And it's just, it's nonsensical. It just, you're actually. It's a model that promotes disintegration, not integration. It promotes fragmenting of our self identity. We need more people doing this kind of work. Work that's centered on compassion and connection and belonging and remembering. Not the medical model, because the medical model is actually causing more harm than. Good, Good.

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