Episode 225: Unspoken Grief: Shedding Light on Anticipatory Grief in Caregiving

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At some point in your life as a caregiver, you will most likely come to a moment when you are forced to lean into the real possibility of losing the person you care for. If you listened to the last two episodes you heard my conversation with Michelle Kolling who is an end-of-life doula. In our conversation we not only talked about what an end-of-life doula is but we also spoke about the importance of having conversations about death. 

I can understand if those two episodes were hard to listen to or caused you to question or want to take action on changing your relationship with death. 

I know that you know we all will die one day but most of us want to ignore that fact. 

When we become caregivers we are confronted with the frailty of life. But in an effort to try to keep up with all the holy shit moments we face, we find ourselves putting out fires, trying to get a doctor’s appointment earlier than next year, and finding mindless ways to distract ourselves from the weight of our realities. We all find it difficult to also then find healthy ways to deal with grief. 

Grief isn’t reserved for when we lose people in our lives. Grief is losing the person you used to be before you became a caregiver. It’s not having the freedom to go out to meet friends or have vacations like you did before your husband was diagnosed. It’s being instantly cut off from the relationship you had with the person you care for when you became their caregiver. 

These types of losses are misunderstood and many times not recognized as being valid reasons to grieve. So as you try to put out the fires, make the doctor's appointments and distract yourself from life, you’re also not allowing yourself to process the grief that is caused by all the losses you’ve incurred since becoming a caregiver. 

If this is you, don’t judge yourself. You’re doing everything you can to just keep up with what’s happening in your life. However, if you take time to say goodbye to the things that are already gone it might just help you move forward. 

I have talked about ways to say good bye to the person you once were in previous episodes and I’ll make sure to put the link for those in the transcript for this episode on the LYCL website. 

There is a different type of grief that caregivers know all too well. Anticipatory grief. That is actually grief that is felt before a loss. For example, your loved one is placed into Hospice and you start grieving their future death. 

The symptoms of Anticipatory Grief as described by the National Cancer Institute are Depression, heightened concern for the ill person, Rehearsal of the loved ones' end of life. Anxiety. Worry and Increased irritability. Attempts to adjust to the consequences of the loved one’s end of life.

I don’t know about you but that sounds like what could be a normal high-level caregiving day!

And just like regular grief, there are stages for anticipatory grief. But in my experience, emotional states don’t go in a logical order and to be told there’s a right way to feel doesn’t sit well with me.

When I was listening to my conversation with Michelle in the episode from last week and how she supports family members before a person passes and after I started to think a little more about how anticipatory grief can get in the way because I don’t think it only shows up when you are told a person doesn’t have long to live. 

I think it’s possible for it to show up the day you become a caregiver. The difficulty with that is it’s easier to talk to someone about grieving the future loss of a person when the probability of them dying soon is high. But not so much when they are first diagnosed. 

When my husband was diagnosed with cancer and before I had a better understanding of what that would mean for our lives, I thought about his death. A lot. Wondering how I could keep things going when he died turned into very specific fears. Since I wasn’t the main wage earner, how would I pay bills when he died? Would I have to sell the house? Move in with someone until I figured things out. That spiraled into, if I had to pack the house what would I keep of his? Or, did I even want to live in that house if he wasn’t there with me?

That very easily falls into the category of Attempts to adjust to the consequences of the loved one’s end of life. One of the symptoms I listed earlier. 

Since we’re already here, let's get more uncomfortable. How about the days that I wondered how I would react when he died? Would I freeze? Wail at the top of my lungs, unable to stand to walk away? Would I cling to him and have to be pried off? 

Would we look into each other’s eyes lovingly until he breathed his last breath?

That definitely falls into another one of the symptoms listed - Rehearsal of the loved one's end of life.

How about feeling like your family was under attack? That this illness your loved one was just diagnosed with had the power to ruin your entire world? That it would take them away from you and you wondered if you had the power to save them.

I get it… this is some deep, disturbing shit. 

But does it resonate with you? Does it describe some or all of the things you thought and felt when your wife was diagnosed with breast cancer,

When you were told your child would be disabled for life?

When your dad was told he had Alzheimer's

Or you were told your mom has dementia?

How lonely was it to sit with those thoughts at 2 in the morning, unable to share them with anyone? 

Most of us can’t stand to talk about death. Our society doesn’t know how to support healthy grieving. 

And we know, that unless there is a very special person in your life, you can’t talk about your symptoms of anticipatory grief. Not only will you be misunderstood but the response you get back from them will be driven by how uncomfortable you make them feel. 

How about this? 

What if someone told you about anticipatory grief, what it was, and what its symptoms were? Would that have at least made it a little bit better to understand what you were going through? Or better yet, help you understand that there wasn’t anything wrong with you? 

I firmly believe when we hide things from others it gives the emotion attached to it more power. We take some or all of that power away as soon as we are able to hear ourselves say the words out loud. 

Anticipatory grief is normal. It might mean you need to join a support group so you can talk about it. Or you can explain what it is to a good friend or family member and then ask if they can simply listen to you without needing to figure out the right thing to say. You might even benefit from seeing a therapist if that is available to you. 

I know, that’s work and it’s uncomfortable.

Let me tell you why it’s important…

Your loved one isn’t dead yet and anticipatory grief can rob you of time with them.

Having someone help you move through the emotions you’re feeling can give you the opportunity to spend quality time with the person you care for. 

I know I missed opportunities to simply sit and hug my husband because I couldn’t handle the thought of losing him. You hear how absurd that sounds? Things might make sense in our heads but as soon as we hear ourselves say it we can really see a situation or an emotion for what it is. That’s the benefit of sharing your grief with another person. Hearing yourself say the words so you can let go of some of the power they hold. 

Anticipatory Grief is real. It’s a valid emotional reaction to potential future loss. I hope knowing that will help you understand what you are going through and empower you to seek out support. 

I’d love for you to have less sleepless nights worrying about the what-ifs.

I’d love for you to be able to have quality time with your loved one.

I’d love for you to know that you deserve to love your caregiving life. 

Thanks for listening