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Episode Six: Grief is a Human Experience

Caregivers Out Loud

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Grief is a human experience and it often feels messy or is accompanied by not knowing if you are ‘doing it right’. Grief and loss can feel isolating. And many caregivers share different examples of grief, such as grieving the loss of your old life during caregiving and then also grieving the loss of the person you are caregiving for. 

Normal does not exist during grief and in today’s episode, we chat with Tricia Wallace, a Clinical Counsellor with Parkinson Society BC about the topic of caregiver  grief and loss and suggestions on how to work with these emotions.

About Tricia Wallace

Over the past 30 years, Tricia has worked in the field of mental health as a nurse and nurse educator in hospital and community settings. In 2019, Tricia finished training in counselling psychology, gaining experience in many areas of therapy including a ten-month practicum in addiction recovery that involved individual and group counselling. As a registered clinical counsellor at Parkinson Society BC and in her private practice, Tricia provides therapy, information and support for individuals, couples and families living with the impact of Parkinson’s disease.

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Quotes

Grief has a very physical presence, and it can include all different types of emotion, like grief isn’t just about sadness, it can be about relief and fear and shame and anger, hope, love all of these emotions . Tricia Wallace 

There’s just so many paths to take in the grieving process. The best thing to do really is to pay attention to what’s going on, what’s going on in your body, what’s going on in your mind, what’s going on in your heart, and that’s okay. It’s okay to feel it’s okay not to feel. Tricia Wallace 

It can be therapeutic to talk about grief and loss with someone you trust, a counsellor, or with a caregiver that has also taken this significant journey. Being able to bring a language to your process can often support your grieving experience. Bill Israel 

Part of the work is realizing that we’re human that we try and things work. Some things fail, they don’t work. And there’s no playbook for life experience. Tricia Wallace 

Grief is like an ocean, it’s just vast. It can be turbulent and stormy and dangerous and it can also be calm. We have to really look for ways to find our bearings. Tricia Wallace 

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Transcript

Bill

Grief is a human experience and it often feels messy or is accompanied by not knowing if you are ‘doing it right’. Grief and loss can feel isolating. As a caregiver, you can experience different examples of grief, such as grieving the loss of your old life during caregiving and then also grieving the loss of the person you are caregiving for. Normal does not exist during a period of grief and loss.

In today’s episode, we chat with Tricia Wallace, a Clinical Counsellor with Parkinson Society BC about the manifestations of caregiver grief and loss and offer suggestions on how to work with these emotions.  

Tricia

You know, there can be a whole host, a world of emotions that people experience. In the context of grief, when you talk about manifestations, that is so fitting. Because grief is like emotion that’s put into a physical reality can manifest in the body, in the mind, and the heart. We hold it with us and we carry it with us. It has a very physical presence, and it can include all different types of emotion, like grief isn’t just about sadness, it can be about relief and fear and shame and anger, hope, love all of these emotions .

Bill

Yeah. And sometimes people get into this what I call a catchment area of wanting to know what’s normal here you know. If I come to you with these feelings I have and they’re affecting how I behave and how I feel. Going beyond normal, what kind of things do you see, and the expectations that people come with you to say, “Am I doing this right, or should I be feeling something else?”

Tricia

We get a lot of messages from society, from people in our lives, about what we’re supposed to experience in grief. And that can really, we can really take that to heart and then judge ourselves. Where am I supposed to be? People come to me and say what am I supposed to be feeling right now you know I’m, I’m crying Is that normal, I’m not crying. What does that mean there must be something wrong.

Bill 

Yeah, or maybe even saying, “Oh, I feel so relieved now.” And maybe feeling guilty about that.

Tricia

Exactly. Yeah, or it’s maybe been too long for me to have this experience or maybe it’s been too short, maybe there’s an attraction to someone else. And should I be feeling an attraction to another person so so soon. They shouldn’t guide our lives. That’s important to not let those should statements and ideas guide our decisions about ourselves about who we are and what our lives can be.

Bill

So that probably is rooted back in, just that notion of, there’s a right way to do caregiving and there’s a wrong way, and I want to make sure I didn’t go down the wrong path right?

Tricia

Absolutely. That’s kind of like the all or nothing thinking that can come along with the judgment. And there’s just so many paths to take, you know, in the grieving process. The best thing to do really is to pay attention to what’s going on, what’s going on in your body, what’s going on in your mind, what’s going on in your heart, and that’s okay. It’s okay to feel it’s okay not to feel. You can be relieved. You can be angry and the heavy emotions of grief. The biggest thing to understand is that those heavy emotions sort of throw us off balance. But, in that state of being off balance. It’s not our right or wrong thing. It’s a sign that we need reorientation. We need to find a way to get new directions.

Bill

Sure. I’m assuming that would include a feeling of numbness sometimes. People come and say, “I don’t feel anything. What’s wrong with me?”

Tricia

And numbness is one of those shoulds that we need to explore a little bit more deeply. We’re going to expect a sense of numbness that’s that’s normal, that’s expected in grief. It can be like our bodies are overwhelmed so it’s like a breaker switch that can go off, like, I’m done, I need a break right now. Sort of, it’s our alarm system can do that in our bodies. So, if that happens though that numbness happens over a number of days and number of weeks. That’s one of the signs where we need to reach out, talk with someone about it. Talk to your medical team about it. 

Bill

Yeah, good clue. And the other one that occurs to me and is this terrible guilt in that moment when you are so stressed and so lost in the caregiving that you begin to think, when will this be over. Is this person going to die or just forever, and the guilt, from that, even at thought and that feeling, a certain shame I guess that comes with that.

Tricia

The difference between waiting for someone to die, and willing someone to die. Those are two very different things. It’s something to consider, in terms of what happens in our minds when the blame and the guilt starts to rise. You know that the role of caregiving is all consuming. You feel responsible for the person, their well being, everything about them.

Bill

24/7.

Tricia

24/7. And so, those expectations we kind of take in as being like we’re superhuman. Not like we’re human.

Bill

We’ve used the term remorse, either during the process that I’m not doing this well enough, or I’m not doing it right, or after the death of the care recipient that I couldn’t keep them alive I couldn’t, I didn’t do enough in my caregiving role. So talk a little bit about that experience of remorse that people probably bring to you.

Tricia

Oh yes. Yes, very much so. And it’s, it can often be quite a private experience that people are trying to find a place to talk about it. What I was talking about before, about that all or nothing. Like life in review, we all of a sudden just have an all or nothing. We did something well, or we did something bad, but when we actually start to tease it out and look at it, we realized that there were so many things going on. The failure comes from a sense of us believing that we have control over things that we actually don’t have control over. And so part of the work is realizing that we’re human that we try and things work. Some things fail, they don’t work. And there’s no playbook for, of life experience. So, we tend to look back on our past experiences in counseling and really look at the context and explore how to build some self compassion.

Bill

Yeah, because otherwise, all of your energy, spiritual, emotional, physical is going into the care recipient. And suddenly we wake up one day and discover, wow, I’m not getting anything out of this I’m just exhausting myself. So talk a little bit about beginning to take care of yourself in this process then Tricia.

Tricia

Self compassion still fits with that idea of guilt, as well, because it’s linked with the anger that we can have, or natural yearnings. One of those is, you know, like you’ve talked about. You’re with the person, you’re witness to your care partner suffering and you are suffering with them in a way that other people might not be able to see, can’t can’t really grasp the depth of that. And those multiple losses that you’re, you’ve talked about over time, they’re also hard to grieve if you don’t have time. There isn’t a space to grieve them.

Bill

Or a place that’s safe.

Tricia

Or a place that’s safe. Yes.

Bill

There’s things I have to say that I carry in my heart but I feel so ashamed by them. I need someplace to, where I can take a little bit of care of myself right?

Tricia

Yes, yes to give yourself permission to do that can be very very difficult. It just doesn’t seem right when you see all the need in front of you. In all the things that need to get done.

Bill

Exactly.

Tricia

So, it makes sense that there’s a wish for the struggle to stop. The guilt comes when we get angry at ourselves for having instinctive drives like the ones for comfort and rest. Those are actually natural instinctive drives that we have to have to survive but we can override them or judge ourselves about them. Like we’re not human. Anger and guilt are so powerful. So healing around those involves, first of all, not keeping, like you said to share it, not keeping guilt a secret. We need to express it. Then the judgment around it that we’ve been telling ourselves over and over again loses its power. There’s something about that sharing that allows for its power to dissipate. And then there’s some more space to reconsider the validity of what we’ve been saying to ourselves and that self blame, this is really what was going on when we look back and we think about the context.

Bill

Yeah. Then perhaps a little bit of relief arises, you know that oh wait a minute, you know I was punishing myself unnecessarily. So can you talk a little bit, Tricia, about entering this new space now, perhaps, after the death of the care recipient. How does one begin to move on then, how does one accept a little bit of forgiveness, as it were, that I did the best I could.

Tricia

Yes! People who come to me talk about that. What is this supposed to look like? Where am I supposed to be at when? And there really isn’t one pathway is there, there isn’t one way to do this.

Bill

Yup, normal goes out the window. No normal. 

Tricia

It does. Yes, yes. And so it makes it even more difficult to find our way and when I listen to people, a lot of the time, I can see this grief is like an ocean, it’s just vast. It can be turbulent and stormy and dangerous it can also be calm. We have to really look for ways to find our bearings. The grief process is part of engaging around how to do that and mourning involves practices, different practices right? And we used to have and we do have some formal rituals and other mourning practices that we engage in, you know around those that purpose of coming together, and there’s places where it becomes more okay to talk about loss and grief. Once the formal mourning processes are gone. What do people do then?

Bill
Yeah.

Tricia

I was thinking about that containment. It’s a term that is used in psychology. Instead of containing the grief, I also think of it like concentrating the efforts or the attention that we pay to grief and the emotions of grief and the experiences of grief. Let’s say we think of going through the closet of somebody and looking at their belongings. I’ve heard many times that’s very overwhelming. It’s so much so, it’s going to be avoided. And then feel guilt about not doing it, and then it, it’s this cycle that kind of starts, so I think of that that sort of like being in the ocean, you know, so to make an island around that would be to to plan a strategy. Like, choose all the clothes that you bought on holiday or that you wore when you are on vacation. The things you remember about that person. And before you go do that, you call someone close to you and you say hey I’m going to be going into the closet today. And can I call you and let you know how it went. So you have some sort of connection.

Bill

Wow. Nice, nice. no so you’ve also used the phrase restorative activities. Is that an example of that, of making a plan to actually take a step at a time?

Tricia

Absolutely that one step at a time. You might only get a few clothes from that, but there’s going to be emotions that come with that. And when the emotions arise, it’s okay they could be mixed they could be happy, sad, there could be some resentment because this opportunity’s been taking away from you but it’s all okay because that’s starting to process grief, in a way, and then you can finish up that job, and try something different and move on and do something else that’s more busy and less emotional in your life, and that is also an restorative process. Is knowing that you can come to and from those feelings and still be able to get on with your day. To still be able to function.

Bill

And even in that illustration, you mentioned something that we’ve talked about before, of stepping into new relationships now or redefining old relationships after this passing of the care recipient. Are there some other little steps about finding somebody else to spend time with or to or to even just talk with about their caregiving experience. A personal moving away from this experience into the next part of my life really.

Tricia   

The way that I imagine that is that grief can take up a lot, if there’s a frame and a camera, grief is taking up a lot of space. And over time with restorative experiences that grief starts to become farther and farther in the background, that loss. Now it’s still there. But we have a different perspective on it and it doesn’t take up so much space in our lives.

Bill

There are so many layers to the grief process and it is a deeply personal and human experience. Many caregivers are emotionally and spiritually engaged with their care recipient. However, it is valuable to anticipate the completion of one’s caregiving role. 

It can be therapeutic to talk about grief and loss with someone you trust, a counsellor, or with a caregiver that has also taken this significant journey. Being able to bring a language to your process can often support your grieving experience. 

One beneficial resource is to join a Family Caregivers of BC Caregiver Support Group – please find more information our website at Family Caregivers bc.ca under ‘Get Help’ 

You can also call our BC caregiver Support Line to speak one-on-one with one of Family Caregivers of BC’s knowledgeable and supportive staff. Call toll-free in BC at 1-877-520-32-67

Many caregivers share similar thoughts or questions around the grieving process. That experience can feel very unique to each person. However, the emotions, thoughts, and questions are similar and can be resolved in a caring relationship.

Tricia

The way that we can cherish our unique path in getting through the loss of somebody. We’re all could be in a different place. We can still connect with one another. Because there’s dollars to doughnuts there’s going to be someone else who’s been in a similar experience, who’s getting being in a similar place and it can feel very isolating and very alone. But there’s always someone out there who can listen to what you have to say, and you can feel safe doing it.