TRANSCRIPT

Grief During COVID-19 (Part 1): Anticipatory Grief and Ambiguous Loss

(Podcast #005)

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I'm Dr Regina Koepp. I'm a board certified clinical psychologist and I specialize with older adults and families. I created The Psychology of Aging podcast to answer some of the most common questions I get about aging. Questions about mental health and wellness changes in the brain like with dementia, relationships and sex, caregiving, and even end of life. Like I say in my therapy groups, no topic is off topic. We just have to have a healthy way of talking about it. So if you're an older adult or caring for one, you're in the right place. Let's get started.

Over the past few weeks, journalists have reached out to me to interview me on grief and specifically grief during the coronavirus pandemic. I was featured in two different articles, one in fatherly, which was also in Yahoo lifestyle and the other was published in insider. Both had to do with grief during coven. These articles did a pretty good job talking about grief and I'll link to each of them in the show notes, but I wanted to take this discussion about grief a little deeper and especially as it relates to older adults and their families. So I've decided to create a two part series on grief during the Coronavirus Pandemic. So in today's episode I'll be talking about anticipatory grief and ambiguous loss. And next week I'll talk about grief and bereavement and other types of grief called disenfranchised grief. The reason I'm breaking them up into two parts is a anticipatory grief and ambiguous loss are experienced often before a clear delineation of life and death, grief and bereavement and disenfranchised grief, uh, kind of occur after a person dies.

I thought it would be a helpful distinction. So in each episode I'll be defining the different types of grief that I mentioned and how they show up during COVID. And I'll also share what you can do to take care of yourself and your loved ones who are grieving. Okay. So today I'll be talking about two types of grief that are actually not commonly discussed, but are very commonly experienced.

 

Anticipatory Grief

So the first type of grief that I want to start with is called anticipatory grief. And anticipatory grief is essentially preparatory grief. Let me say that again. Anticipatory grief is essentially preparatory grief. It's grieving in advance of the loss. What's important to know about anticipatory grief is that we're not preparing to grieve. We're actually in a state of grief before the loss. It's actually part of the normal process of grieving. Like imagine the moment you or a significant person in your life gets a diagnosis of a life altering medical condition.

You begin to grieve. It's actually normal to grieve and to feel sadness before a loss actually occurs. So with anticipatory grief, many of the same feelings arise as as do with grief after or bereavement after somebody dies. So feelings like sadness and fear, anger, guilt, injustice, dread and doom.

So one of the things that I see quite often with families that I work with who have been diagnosed with a life altering or terminal illness, is that once they get that diagnosis, kind of the way our brain processes this is to begin to look to the past and the future to process this grief. So let me give you an example in terms of looking back. People might look back and think, I wish I spent more time with my mom or I wish I hadn't let my loved one down in this way. Or I wish that I had made the decision to live closer to my parents when I had that opportunity, when I was making that choice.

Or I wish that I had been there for this really important moment in my loved one's life. Also, what people do in addition to looking back is that we grieve future opportunities that we won't have. So for example, my mom won't be there to see my children grow up or my dad won't be there to walk me down the aisle or this holiday season is bittersweet because I know it's our last one together. There also might be an experience of longing to return to how things used to be. So I wish I could talk to my loved one like I used to or um, my spouse was always my source of comfort and support. And now when I need the most, I have to be the one comforting and supporting them. So all of these kinds of thoughts and feelings are really common in the context of anticipated loss or anticipatory grief.

Okay, so now I want to talk a little bit about COVID-19 and anticipatory grief. So COVID-19 has really instilled a fear in society as a whole. You know, this is nationally and internationally. I don't need to be the one to tell you that businesses have closed, doctors have stopped seeing patients in person. Dentist's office is up close, the streets are empty. Basically, the foundation of our society has been de stabilized by this pandemic. We are experiencing all of that and a loss of life as we knew it financially, interpersonally, educationally, medically. We've lost our collective sense of security. And that is really very scary. So one of the journalists asked me, who experiences anticipatory grief, is it just people who are losing loved ones or is it actually more widespread? And my response to this is that life is filled with loss. There is grief related to death and there's grief related to natural human losses and transitions like Parenthood for example.

So having a baby for most of us is exciting and a welcome change for many of us. And it also comes with huge life transitions and loss. And because of this, there can be a grieving process. So we have to grieve our independent in unencumbered life. That's the life without kids to make room for new life. Then our kids grow up and then we have to help them leave the home. And even though it's a healthy thing to help our young adults launch and be independent, it's a healthy transition to help our young adults do that. The family has to adjust to being empty nesters. Then we have some grieving to do there as well. Then it's not over. Then there's caring for older adults and loved ones with illness. And then this whole notion of helping our older adults and our older loved ones die with dignity and a sense of peace.

Really all throughout our life we're experiencing transitions and loss and we're experiencing anticipatory grief. So anticipatory grief is messy. And it's emotional in general. Grief is raw. I remember reading a book, mystic river. Do you remember that movie of years? Maybe decades ago now with Sean Penn? Well, there was a book, right? It's called Mystic River. And in the book the author described grief as being bare naked and everybody could see him in his bareness and he was exposed and raw and he could not hide it. And so when we grieve, that's what it's like. It is really raw. People are bare and exposed. There's sadness, there's fear and there's suffering. I'll also say that grieving isn't something that we can choose to do or not do. Grief is a normal human experience that helps us to process loss and move through transitions in our life.

It also helps us integrate all of our life experiences. It's very painful and it's necessary. And when we don't take the time to grieve and when we postpone it by avoiding, and maybe we avoid by over drinking or overeating or isolating ourselves, then we run the risk of problems down the road. So there's actually another term for this kind of grief called postponed grief. And so what postpone grief means is that you actually put it off for later, right? But the problem with this is that once you get to the place where you're ready to grieve, other people might have processed their grief, connected to that and integrated into their life and maybe not be at a place to support you that they once were. And so that could leave you in alert, that could leave you all alone and struggling to process this grief by yourself.

 

Ambiguous Loss

Now I want to move to another type of grief and loss called ambiguous grief. Ambiguous loss is a term that I have tremendous gratitude for. And let me share why, because it sounds strange that I would say that I'm grateful for it, but in my work with families with terminal and life altering illnesses with dementia, with lots of unexplained pain and suffering, there are few terms in our vocabulary. And our meager understanding is humans that can adequately capture how significant some of the losses that we experience in life are. And ambiguous loss is one of these terms that does it. And so that's why I have tremendous gratitude. It actually helps us to place this insurmountable amount of suffering. And so let me tell you what ambiguous loss is. Dr. Pauline Boss was a pioneer in describing and defining ambiguous loss. I'll link to her website in my show notes and you can learn a little bit more about her and ambiguous loss. Just a side note, I have no connection or affiliation with her. I don't, I've never ever met her. Um, I just appreciate her discussion about ambiguous loss. So ambiguous loss is different from ordinary loss in that there's not necessarily a verification of death or certainty that the person will return to the way that they used to be. It can be very confusing for families and it prevents people from being able to integrate the loss and move forward in their life. And so it can have the effect of like freezing people in place. And I'm going to give you some examples of ambiguous loss, uh, and why it's so important now during the Coronavirus Pandemic.

Dr Boss describes two different types of ambiguous loss. So type one occurs when there is a physical absence with a psychological presence. So this includes situations where a loved one is physically missing or gone and common examples of this are um, divorce, adoption and loss of physical contact with family and friends because of immigration. But we're seeing this kind of ambiguous loss of physical absence with psychological presence during the Coronavirus Pandemic. And let me tell you how. Last week I gave lots of examples of older adults living in long-term care communities and their families not being able to visit them in person or older adults going to the hospital and their loved ones not being able to be there with them. And so those are examples of physical separation and psychological presence. And so people in senior living communities are separated from friends and family. They're not able to have visitors, same in the hospital. And this is occurring, especially when older adults are in the hospital during a really vulnerable time in their life where their family members need to be there.

So this is so upsetting and unsettling for families because in times of pain and suffering and fear and loss and illness, it's healthy to reach to others for closeness and it actually helps us to heal and comforts us. But then because of Coronavirus restrictions, we can't be there in person and we can't be close because physical closeness can harm us. That takes away one of our healthiest coping and soothing strategies. This is where ambiguous loss can really help us to understand and um, capture the intensity of what is happening with these families who can't be with their loved ones. There is a physical absence and a psychological presence. My aging parent needs me. They're not going to have anybody there to advocate for them in the hospital. My spouse of 60 years needs me. I need to be by their side. I've been there every step of the way and now I can't be in.

It is heartbreaking. And so as if illness was not hard enough, now there's separation to contend with as well. And that is ambiguous loss type one.

Ambiguous loss type two is when there is psychological absence with physical presence for all of you caring for a loved one with dementia, you have or will experience this type of ambiguous loss. So this is where the person is emotionally or cognitively gone or missing. I hear people talk about losing their loved one with dementia in bits and pieces or my loved one is physically there, but their personality is not the same. I am having to learn how to love the stranger that my mom has become. So that was actually a quote from Lauren Dykovitz, and I interviewed her a few a couple of months ago about her mom. Her mom was diagnosed with early onset dementia when she was very young and Lauren of talks about her journey with caring for her mom with dementia for 10 years and having to love the stranger that her mom has become.

And that is exactly, that encapsulates this idea of ambiguous loss that comes with dementia. Her mom is physically there, but her personality and psychologically it's different or it's gone. And that's so painful because you're, you're relying on the bond to carry you in caregiving and the person is changing and you see them chip chip away and bits and pieces and so you're constantly grieving. They call dementia the long goodbye and that is exactly why. Let me also just point out that the person who is caring for a loved one with dementia who their loved one is living in a long-term care community and they're on lockdown is experiencing both types of loss. They're experiencing the physical distance and the psychological distance and that is a double whammy.

 

Recommendations for Processing Grief in a Healthy Way

I want to end today's episode with some healthy ways to approach anticipatory grief and ambiguous loss. I don't want to just say, Oh Hey everybody you're grieving and then not give you any tools for helping you work through it.

The first healthy way to approach anticipatory loss and ambiguous loss is to acknowledge it, to say and understand that this is a difficult and uncertain time to say it makes sense that I am overwhelmed, unproductive, kind of unraveling a bit. I am going through a lot of loss and transition. Another way to approach working through loss, anticipatory grief and ambiguous loss is to find meaning in your life and in relationships. Maybe make extra time for relationships that fill you up and bring you some sense of comfort and joy. Another tip is to stay well, that's both mentally and physically well as you can. So really focus on taking care of yourself. If you're an older adult. I have a guide called the co-fund 19 wellness guide for older adults. So check it out. It will really help you to prioritize your self care and I'll link to that in my show notes as well.

If you are living with somebody with dementia, um, you might need to also focus on, um, forming and reforming and reconstructing your own identity as a caregiver. And so there's a lot of role transitions that are happening as well. And then also reconstructing the relationship. Um, another tip is to stay connected to others and to really focus on strengthening the bonds that you do have. This is especially important during the coronavirus pandemic. So a lot of people are setting up zoom calls and zoom support groups. And, uh, zoom book clubs, really focusing on strengthening the bonds with their friends. So give that a try. It also can be really helpful during this time to explore new beginnings and look for hope. And so not like false hope, like false hope that your loved one will get through, get better from dementia. That does not happen, but hope in finding a joyful moment or hope and finding a new connection or hope in um, a new discovery for yourself or maybe a new grandchild, something new in joyful, a new beginning perhaps.

Um, so those are just a few healthy ways to approach working through anticipatory grief and ambiguous loss. I hope that you found some of this information helpful. My goal here with this is not to bring you down of course, but to give you a language for talking about how complicated what you're going through actually is and um, and why maybe you feel drained at the end of the day or the end of the week or why maybe you feel resentful or all sorts of feelings. Grief is not something to balk at. We can't minimize it. It just shows up. It just is. And so the more we can acknowledge it and normalize it and uh, find ways to work with it and through it, the better the healthier you'll be

 

Wrapping Up

All right. So join me next time where I'm going to talk about other types of grief. That's for my grief, part two series on grief and bereavement after loss and a type of grief called disenfranchised grief, which is a really, really important type of grief to know about.

And just a reminder to help you manage your own stress and maintain your physical wellness. During COVID, I created the COVID-19 Wellness Guide for Older Adults and it I share lots of strategies for helping older adults to stay mentally and physically well during the coronavirus pandemic. So grab your free copy in my show notes or you can just go to www.drreginakoepp.com/covidwellness. If you're caring for an older adult, grab that guide as well. It will help you out.

If you like this episode, be sure to subscribe so you'll be the first to know when you episodes are released and leave a review. So subscriptions and reviews actually help people to find this show because nobody should do this aging and caregiving thing alone. In wrapping up, it's important to share that the ideas I talk about and express in this episode are mine alone, and that information I share does not take the place of licensed medical or mental health care. All right? That's all for now. So I'll see you same time, same place next Wednesday. Lots of love to you and your family. Bye for now.

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