PTSD and Caregiving

Melissa

I am really excited about this episode with Donna Thomson, and Donna has so graciously with our time zone differences offered to come in and share her experiences with caregiving. This topic is something I cannot believe we haven't explored yet in our podcast series, which is experiencing trauma or PTSD through caregiving and how we can adapt. We'll also talk about the post-traumatic growth aspect of that as well, which I'm excited about. Donna, you are quite an extraordinary human. I think all of the experiences and the things that you have gone through, we will gain a wealth of knowledge from. You're a teacher and a mother of two grown children, one who has cerebral palsy and a medical complexity. You also have cared for your mother who was living with dementia, and she passed in 2018 at 96; a very long life to live with dementia. You're also the co-author of The Unexpected Journey of Caring, which is a phenomenal book. It is one of the more dense caregiving books that I've read, where I could go through line by line and  think, wait a minute, I need to go back through that again. It's so rich and full of resources. It really has given me hope. You have a phenomenal blog, which you keep really current, a wonderful Facebook group, and you also have something called Caregiving Essentials, which is a whole catalog of resources for caregivers. That's an incredible resource.

 

Donna

Hi, and thank you so much for having me. I'm so happy to be here.

 

Melissa

I'm  happy to have you. In listening to your story and sharing about how PTSD came up for you, I'd love for you just to give us a short background to your caregiving and how that led you to the discovery that you had PTSD.

 

Donna

I never really realized that what I was experiencing was trauma, or what I was experiencing was PTSD. I had no names for these things. I think, like everybody else here, I'm sure you just put your head down and go through your experiences in trying to keep the people you love alive and well. I think the first traumatic events that relate to caregiving that I experienced were with my dad when I was a teenager. My father had three strokes. I was at home alone with him one day, and my mom wasn't home, and I was in my bedroom. My dad was in the living room. And I heard him make a sound like he lost his speech and his mobility. But I heard a sound that didn't seem normal, and I came out of my bedroom and I ran down the hall, and I saw my father. His head was back and he was shaking all over. I was 16, and I thought I was watching my father dying. I thought he was having another stroke. So I called 911, and they came, and they brought my dad to the hospital.

 

Subsequently, I found out that it wasn't a stroke, it was a seizure. And that stroke patients can quite often have seizures. But he had never had one before, and certainly I had never witnessed a Grad Mal Seizure before, and it completely terrified me. Fast forward to when our son was born in 1988 with severe cerebral palsy and medical complexity, and he was a very challenged baby coming into the world. He was hard to feed and he couldn't tolerate stimulation, and he was impossible to soothe and all of that. One day when he was two, it was his first day of a special needs preschool, and it was the first time I had any respite. I remember very clearly sitting in my kitchen, reading a newspaper, having coffee in my pajamas, thinking, oh, my God, this is so gracious. The phone rang, and it was the school director, and she said, your son has had a seizure. He's on his way to the hospital, and he is not responsive. So Nicholas had never had a seizure that we knew of. So I got in the car, drove to the emergency room, white knuckled, of course, thinking that he would die or that he would be profoundly changed, that he wouldn't be the baby that I knew there was going to be further brain damage from the seizure.

 

I got to the door of the emergency room, and I could hear him crying and immediately I knew that he was okay because it was his normal cry. After that, every time the phone rang at home, I had a panic attack. Even if I was holding Nick in my arms, I thought, something horrible is happening here. I had this gasp because the phone rang, and it took me a long time to get over that. I have always had a big interest in research and in being a partner in research. I was a partner over the last couple of years on a research project looking at PTSD and trauma in family caregivers. And, boy, did I ever learn a lot about what happened to me, about what happens to most people who are in this role and how recovery works. PTSD is actually a problem of memory. The memory of trauma is stored differently from normal memories in your head, and the circumstances in which our traumatic memories may be mis-stored so that they get mixed up, and we get triggered by something that is not, in fact, a threat.

 

This has to do with other traumatic events we've had. There is a building block effect of trauma. We don't get better at managing our trauma as caregivers with practice, because many of us here, virtually everybody, I'm sure, has had multiple traumas. And you think that, jeez, I should be getting so good at this now, and I'm not. Little things bring me to my knees. Now, why is that? I learned through participating in this research project that I forgive myself 1 million times over for this because it is a natural, human-proven reaction to multiple trauma. It is this building block event or rocks on your back, as in one slide that we used in presenting the research that one rock on your back is the first traumatic event. And two, then three, then four, and it takes one little stone to push you to your knees at the end. I think that trauma and PTSD in caregiving is incredibly common. It's not only the trauma in caregiving, it's all the traumas that we've had before we even started caregiving. We found this in the research project. 78% of all respondents in a huge survey had  been in a car accident, had a divorce, lost their job, lost some member of their family, many had unwanted sexual encounters or sexual abuse. Like, how common is it. Then we become caregivers and add that trauma on top. That was my personal journey in this learning. Our son had many, many near-death experiences, and I've given him CPR on the living room carpet and stuff like that. You just don't get over that very easily.

 

Melissa

No. There's a lot to unpack here. If you had to concisely define trauma so that we can conceptualize it, how would you define it?

 

Donna

There are formal definitions of trauma. If you have either experienced a life threatening event or witnessed a life threatening event or even heard about a life threatening event with respect to somebody that you love or care deeply about, that constitutes trauma. PTSD involves this sense that you've never left the traumatic scene and that you're stuck in the event and that the threat is not over. People will remain in what we call survival mode. The traumatic event is the constant reality, so you can never escape it. And the present reality can seem like a dream or an illusion. You're constantly reliving the traumatic event or constantly expecting a crisis. That feeling of dread, that feeling of expecting the next crisis all the time, it's horrible. Been there, done that.

 

Melissa

It's like walking down a road, and instead of expecting a rainbow around the corner, you feel like there might be threatening poking out around the corner, even though you know it's not there. It's happened in the past. It just looms and lingers. And that description of imagery, a lot of the individuals that I work with, the trauma, almost talk about walking through their life as if they're watching a movie, right? That if they feel the disassociation. They feel like they're back there and all of these things are happening, but they can't really be in the present moment. It's just remarkable how little we discuss this. And it's exciting to hear about what you're doing with McMaster's in terms of the research, and I'd love for you to unpack a little bit and maybe share a couple of the nuggets that you found out of that. I know one of the statistics that you just mentioned about the extraordinary number. And, of course, in the US. We look at something from a counseling perspective as an Ace score, adverse childhood experiences. I think we discount that when we think, well, that's just how I grew up, or, that's how it was. I'm over it, and you put on your "I'm over it jacket or armor", and then something happens. CPR to your son or caregiving for your mother who had dementia. Those things come back. What are some of the things that you discovered through the research?

 

Donna

In the research project, we tested an intervention called Narrative Exposure Therapy. It was online, and we used non professional coaches under the supervision of a psychology team, and we were testing whether or not it's feasible to deliver this type of therapeutic intervention widely and cheaply and for free to anybody who needs it in the caregiving community. That's what we were trying to establish. Can we do this, and is it working, and is it good? And we found out that it really is. The results will be published very soon. There's a couple of papers out on this study already, though- you can Google it. It's called "life beyond trauma". What we found was that this method of narrative exposure therapy is proven already to be really good in PTSD with Veterans and first responders. It has been tested with those communities, but not with family caregivers. And we didn't know if it could be delivered effectively online virtually. One of the things about narrative exposure therapy is that we used something called a visual image of a lifeline, and it's a picture of a rope which represents your life. And stones on that rope represent the traumatic events in your life. Flowers represent happy events. Candles represent something that you deeply remember and maybe sad, but is not traumatic. There are these various things. And as you talk about your life, you place these different objects and then you can see your whole life represented by the major events in your life. This process of unpacking and disentangling the memories and separating them one from the other is shown to be very helpful in helping people put these demons to rest. And in fact, much of the emotional response to trauma we have is when these memories get tangled up, and they become a monster in our head. In terms of getting control over them, separating them, looking at them. I think the most ironic thing for me in learning about this approach was anybody's first reaction to somebody saying, okay, what you're going to do is you're going to tell me about the horrible things that happened to you, but you're going to tell me about the happy and good things too. I can't go there. And I had a lot of caregiver friends. I said, you have PTSD. You need to do this program. And they said, no, I cannot do this. So I think that's very natural to run fast the other way from who.

 

Melissa

Who wants to process the trauma?  I will give you a little caveat here coming from a clinical mental health perspective, processing trauma alone is not advised. A professional in a group setting like that where it has very contained boundaries, you probably had certain guidelines and things like that, trauma. I just want to caveat that with how important that is. Because diving in and taking a peek down this sort of line of stones of trauma can also have that effect of re-remembering. And what I think you're trying to tease out here in this life beyond trauma narrative approach is that when we can and use this description I heard you talk in another talk about our mind being a filing cabinet. And I've heard that from another trauma specialist where oftentimes an incident will happen and we'll file it away in a certain part of our brain and the files get mixed up and confused. Right where the past and the present? And this brings me to G.J.'s comment in the chat box the difference between PTSD and complex PTSD. I'm curious what you would have to say about that.

 

Donna

I'll quote the principal investigator on the research project, Dr. Pat McGrath, who said that this approach, and as you say, Melissa, should never be don't do this alone. Under the guidance and with the help of a mental health professional, you go through this process. He said it works regardless of whether the trauma is ongoing. And he said the evidence is clear that it shows that further traumas are easier to manage and will have less incidence of resulting in PTSD symptoms moving forward after doing this narrative exposure therapy. It's not to say that trauma is ever easy to experience. Anybody with ongoing complex problem, complex trauma is not going to suddenly start stop suffering from the trauma. And that would be disassociation if you did. So that's certainly not the objective. But the objective would be not to stay in that trauma after the trauma is over.

 

Melissa

To reiterate and simplify, I love the visual. And what is interesting about this narrative approach, it's similar to what in the sort of grief therapy world we do a grief loss line and traumas and griefs, they can have a similar effect or they cannot. Right. But most likely, when we're talking about how we file things in our brain, essentially it's asking how are we experiencing it in our nervous system and our system and our body's response to stress. So we might have the same either disconnect from emotions that we do with grief and loss as we do with traumas. And so they might have also a very similar as opposed to a linear way of dealing with it. It can be very much circular and come back again and again and again in terms of emotionality. But what we hope is that through feeling that it's less that each time we tether toward it, that trauma has less of a trauma response in the body.

 

Donna

And the other thing is, too, a sense of control over your memories, your emotions. And it is this very complex idea that you don't stop feeling hurt, pain, grief, loss, but it doesn't control you. And it has another side that you can exit. You're not locked in this black room.

 

Melissa

You described it as a memory problem, which I think is so fascinating, especially for those who care for someone with dementia or Alzheimer's.

 

Donna

Yes. Isn't that interesting? And in some ways, there's an analogy to that too. I have these beautiful memories of this unpacking memories with my mom. But, yes, I did describe the filing cabinet analogy where something traumatic happens and the need for healing from that results in this process of sort of if your brain is a filing cabinet full of files of your life experiences, you tip open your head and all the files fall out on the floor. They're all mixed up, all the papers are all over the place. And what you need to do is pick some up, look at everyone, refile them in a way that makes sense so that you have control over them. This is a process that I've been doing but on my own. I just came to this as an idea that I wanted to do for myself through writing. I've been doing this for maybe 15 years now and just turning over and over these experiences and asking myself what they mean, putting them back in their files.

 

Melissa

Do you attribute writing? What are some other things that have helped you through your healing and moving toward post traumatic growth as opposed to staying stuck in reviewing the files, what has helped you move forward into healing?

 

Donna

I think community of people like us here today and learning from other people's stories and thinking to myself, oh, what does that mean to me? What does that remind me of? But understanding that every single caregiver experience is so different, so unique, how can I put myself in their place and deeply understand, but also and then go away, think about what another caregiver's experience means to me and what does that remind me of? How would I react? What do I think about that? How do I feel? And this community, not only do we realize we are not alone, which is so powerful, but also I think we can place ourselves within a continuum of human experience, and we realize that what we're going through is quintessentially human, noble, and has dignity and value because we're seeing value in other people's experiences. And on reflection, we can take that value and assign it to our own lives, too.

 

Melissa

That is so beautifully sad. I really appreciate, dignity. I think oftentimes it is absolutely neglected. We think about the hardship, or we think about even vicarious trauma, all of the other things that are associated with caregiving. But the power of this showing up, there is dignity in that. And I want to share just something briefly from your book that I found really powerful. Can I read to you your own words?

 

Donna

Of course.

 

Melissa

This is really beautiful. "So acceptance is a radically disruptive orientation to most people because it asks us to risk engaging with another on their terms, not where we want them to be. Not where we need them to be, not where we are asking them to be, but where they are now." So you go on further to say "caregiving is a response to a call to accept loved ones or who you're caring for as they are cognitively, physiologically, relationally." I think that is so hard. It is so hard. And that is just the constant pillar and work of that. And so if you can imagine, this need to fully accept the person you're caring for compassion, and you have to offer this self compassion, which I hear you saying is one of the roads to healing and that post traumatic growth.

 

Donna

I think a big part of that is actually forgiveness. I forgive my mom for having dementia. I forgive her for being an imperfect mother, for not being the mum I need. You know, I forgive myself for being an imperfect mother. A lot of acceptance in the context of what we do is about forgiveness, I think.

 

Melissa

I don't know how anyone else feels, but that has been one of the most challenging roads and journeys.  I think I'd be curious to hear maybe in episode two talk about forgiveness, but in a short way, what do you feel is the key ingredient to forgiveness?

 

Donna

Well, I can speak personally. I can't speak for anyone else because I think it is a very individual reckoning based on personal histories and everything.When my mom died, I was at a loss to talk to anybody else about, like, oh, tell me about your mom for a while, for about a month. There is nothing I can say that I think is true. I had a very complicated relationship with my mother. She was just very stubborn, extremely willful. She got evicted from her seniors residence. She fired all her helpers. She was a smoker and a drinker right till the end to the day. She died with a box of chocolates on her. She was a rule breaker, and she didn't change anything for me or my sister to make it easier for us. I thought, who was she anyway? I don't know anymore. So I tried to do this rearranging of memories and put the files back thing for her. And I sat speechless, looking at the river for many days, thinking, what am I going to say? Who is she? How do I feel about her? And I came to finally, I came to a place of peace in my own head. And so I think it is just about saying it is what it is. And I loved her,  it was complicated, and I'm healing from all of that.  I talked to my sister a lot about "what the heck with mom."

 

Melissa

I love how radically honest and raw that feels. And it still feels like it's. It was 2018 when she passed. It feels like it's still...

 

Donna

Yeah, I'm still processing that.

 

Melissa

Processing. I'm I'm going to take one question here to wrap up our recording and if you're listening, you want to join us live next time because we're going to do some questions offline as well. And so, G.J., I really value your question here. It says you mentioned that "one cannot heal from PTSD alone. You need support. What is the role of social isolation in building the sense of trauma to begin with?"

 

Donna

I think social isolation is a double edged sword in terms of any personal efforts to heal from trauma and PTSD, because sometimes the social world can be a distraction from doing the work. So sometimes social isolation could be seen as an opportunity for deep reflection and deep remembering in a safe space, provided that complex trauma is not ongoing. I would say the reason that I was able to do this work and to move forward was that I am no longer in the trenches of caregiving anymore. My mom died. Our son lives in a fantastic medical group home with one to one nursing care able to safely be by myself and reflect. And the pandemic for me has been an opportunity to do even more, even deeper. I think that social isolation can also be a very negative influence on our mental health, of course, as we know.  I would say that in that case, if that's what you're experiencing, go online to caregiver support groups like this one and talk to each other about what matters most in your life.

 

Melissa

Thank you, Donna, for that. I would echo that. I think there's a differentiation between intentional time alone, like aloneness versus loneliness. And so when social isolation perpetuates or exasperates loneliness, we've got to find an antidote to that. It is detrimental to your health. So really important to have connection. I just want to thank you for that question, and I feel that's a really beautiful note to end on, and we're going to have a little more intimate conversation with Donna. But, Donna, thank you so much for sharing these words and this wisdom. 

 

Melissa

Thank you so much.