None of this was supposed to happen. My parents weren’t supposed to get divorced, my dad wasn’t supposed to get sick so young, and I was never supposed to be the only person taking care of him. Yet here I am, too young to be dealing with a parent’s decline, and completely alone -- isolated, even -- in my responsibilities, which was definitely not supposed to happen.
However, maybe it’s not that these things are ‘not supposed to happen,’ but that these are the realities of life that no one prepares you for and no one cares to discuss. In fact, the entire circumstance that I find myself in is one that society prefers to cover up.
After doing some research and discovering I am one of millions of Millennial family caregivers in the United States that receive no support and whose mental and physical health is at risk as a result, I refuse to be silent. My life’s purpose has become to tell my story, advocate for those like me, and promote discussion of family caregiving as a society. Silence is deadly. Suppression is toxic. Spider Robinson said, “Shared pain is lessened; shared joy increased.” We must share our pain so that it can be lessened. We must alleviate the burden of those who feel isolated.
Death wellness is part of this process that I have been navigating through. Having had to confront being a caregiver alone, I know I will confront death and grief alone. Yet, grief is something that shouldn’t, and can’t, be confronted alone. There are rituals surrounding death in many cultures, just as there are rituals surrounding birth. I know that the only way to survive grief in a healthy way is to share it; to feel held by others; to mark and acknowledge the significance of your loved one’s death in a way that allows you to feel robust sadness but also allows you to be filled with gratitude. We should be allowed to grieve in a way that makes us feel hopeful, that fills us with memories, that comforts us in a completely new way. We should be able to cry out loud, and laugh out loud. We should be able to talk about them every day.
That, to me, is grief wellness. That is what I will promote and what I will do. We are not done exploring what it is to be human, so we should continue to explore, together -- when shared, the fear is lessened.
What family caregivers deal with the most is anticipatory grief. I found incredibly helpful words from Lianne Hikind:
“From birth until death, and everything in-between, our lives (and the lives of those we love) are built on important stories. When someone is dying –– an interruption in the story of their lives –– grief can emerge as a reaction, even prior to that person passing away. In the process of saying goodbye to someone we love, we may experience an entire host of conflicting and unsettling emotions and responses, even as we try to enjoy the time we have left.”
But what is anticipatory grief?
Hikind says, “Anticipatory grief is grief that is felt before the loss of someone you love, often due to a terminal illness or diagnosis, but a variety of circumstances can spark this response. Anticipatory grief can be as intense as other forms of grief, and can include both mental and physical symptoms. Anticipatory grief is perfectly normal, especially when tied to a close family member or friend who will soon pass away. This response is our body and brain’s way of recognizing and preparing for the inevitable. Loss is hard, but watching it happen in real time can be excruciating. Fear and anxiety are often even more significant parts of anticipatory grief than conventional grief. The fear of being alone, of what life will be like without them, or who you will be without them can lead to extreme anxiety that forms anticipatory grief.”
What are symptoms of anticipatory grief?
“The sadness during anticipatory grief is often around a loss of an expectation –– that they would be here, that you would pass first, that it wouldn't happen this way. [...] Fear is the root of anticipatory grief. We don’t know what is on the other side of loss and grief, for ourselves or our loved ones, and every single loss is unique and different. [...] Change in general sparks anxiety in most of us and especially profound change like the death of a loved one can be a tipping point. There are two types of experienced loneliness felt in anticipatory grief:
- Fear of future loneliness,
- Present loneliness in your feelings.
Depending on the situation, guilt may be an aspect of how you experience anticipatory grief. Especially if your loved one cannot talk, or is not aware of what is happening, you may feel there is something you need to say or apologize for, and can't. Or maybe your guilt stems from the thought of relief from a family caregiver role –– guilt can be an incredibly heavy emotion in this case. Physical ailments accompany grief because our mental health has a significant impact on our body. As your pain (anticipatory or not) intensifies, you may experience issues like sleeplessness (or sleeping too much), headaches and migraines, muscle cramps, nausea, and more.”
How do we mitigate the effects of anticipatory grief?
Practicing mindfulness -- pulling yourself into the present moment when you catch yourself worrying about the future.
Talk about the things you feel with a trained professional - including guilt, sadness, loneliness, and physical ailments.
Do research and/or plan what you can. Join a grief support group, consult a death doula, or even, hopefully, talk openly with your loved one about your anticipatory grief and ask if they have felt it too. Deal with the process together. Give yourselves the opportunity to have those final words together and leave nothing left unsaid.
For planning and help with a celebratory grief journey, consult Eterneva. Use IALLY to get a free welcome kit.