In 2009, musician Mat Kearney released a song titled “Closer to Love”. I was pretty sure the first two verses were written exclusively for me:
She got the call today
One out of the gray
And when the smoke cleared
It took her breath away
She said she didn’t believe
It could happen to me
I guess we’re all one phone call from our knees.
This was the same year I actually received that dreaded phone call which quite literally dropped me to my knees. I sat in a crumbled heap on my kitchen floor, with tears pouring down my face, as I listened to my parents tell me that my mom had cancer. Terminal cancer. Three months to live.
In reality, Mat Kearney could write that verse because so many people have had the experience of that phone call. If you’ve ever received the call…you know the feeling. It could be cancer or multiple sclerosis or Parkinson’s disease or congestive heart failure or insert any number of terrifying words that make it clear in one moment, that life, as we know it, has changed forever.
When the shock wears off, grief often settles in, although sometimes we don’t truly recognize it for what it is. We tend to attribute grief to the loss we feel after losing someone we love. However, anticipatory grief comes prior to the actual loss. Without an understanding of anticipatory grief, it can be quite confusing. When my mom was dying I couldn’t understand how I could grieve over her while she was still here. All these years later, looking back, I wonder, how could one NOT grieve in anticipation of a loss they know is coming?
Over the last five years, I’ve studied grief. I understand anticipatory grief now. This grief occurs for many people who are caring for someone with a chronic, or terminal, illness. Although the grief is called “anticipatory”, it is quite real. Chronic diseases come with a new “normal”. This normal may include doctor’s appointments, sickness and weakness that didn’t exist before. Caregivers experience grief over the loss of what once was, as well as the loss of the loved one we used to know. Additionally, we grieve over a future that has changed. Perhaps, we envisioned a life of traveling after retirement. A chronic illness in a spouse changes that future. And so, we grieve what we have lost. Anticipatory grief encompasses all the losses that come with a chronic or terminal illness. And oftentimes, it can come with guilt. Yet, it is vital to recognize that each grief experience is essential in its time and all these feelings are valuable. We don’t discuss grief enough in society. Speaking openly about one’s pain can make the process more relatable and can help relieve the guilt. It doesn’t matter what loss you are grieving. Just because your loved one is still here doesn’t mean that you can’t grieve what you are losing, as well as the greater loss you know is coming.
Five years after my mom’s death, I am now slowly losing my dad to Parkinson’s disease. I have been known to stare at the picture of him, framed on his wall, which shows him throwing out the first pitch at a Seattle Mariners game many years ago, and grieve the loss of THAT man. I have been known to get angry and sad and wonder “why” more times than I can count. At the same time, I have learned to appreciate the dad I have now. The one who often gets lost in his head and occasionally can’t remember who I am, while at other times can share hilarious and detailed stories from the past as though they happened yesterday. I can grieve what I’m losing while still honoring what I have today. This is where I find the beauty of anticipatory grief.
Grief is not easy. In all forms, it comes with pain. Yet, from great pain comes great growth. Grief has provided me abundant lessons about life, love and the human spirit. If we can learn to be open to the journey of grief in all its varieties, it can be one of our greatest teachers.
Kelli Barr-Lyles, MA, is on a mission to open up the conversation about death and grief. She realizes this mission is all uphill, but is under the impression that we are all going to die, so why ignore it? She runs her own counseling business specializing in aging, grief and death as well as pregnancy, birth and postpartum. Additionally, she practices geriatric care management and is currently in training towards certification in death midwifery. She is a secondary caregiver to her father who is living with Parkinson’s disease. Her immediate family, who has to listen to her death talk at length, includes her husband, her three teenage sons and three feline daughters (the cats are the best listeners, for the record). You can learn more on her website or on Facebook.
My husband of 40 years is slipping away in the final stage of Alzheimers. I deal with this type of grief daily, even though he’s been in long-term care for almost 2 years.
My son suffered anoxic brain injury at the age of 3. He’s 26 years old now. My husband and I have cared for him with the help of wonderful caregivers since his accident. During the last month we are in this phase of our grief. He is dying a little more each day, seeing less smiles and awake periods. I feel so many different emotions but mostly feeling my heart breaking. This couldn’t have come at a better time for me to read. I need someone to repeat over and over ‘it will be ok’, because I’m not sure I will be.
I have experienced this and thankfully it passed. Not very pleasant I was consoled to find other people experienced it too.
Thanks Karen Lancaster. Worth reading.
I enjoy these articles, mainly because they describe so well the emotional roller-coaster of caring for a loved one.
I agree, it’s hard to watch your loved one disappear.
Very very true
My Dad was diagnosed with pancreatic cancer and three weeks later he passed away. It wasn’t enough time. He was young, too young. We didn’t really have a lot of time to say what we wanted to say to him. Mom was failing for years, and I grieved watching her go. As hard as it was, I knew she was ready. I was able to tell her that I loved her, that she was a wonderful mom. In the fog of her dementia, I just knew that she heard what I said.
I’m sure she heard you. All the best, Bob.
This is why I stay in the present moment with Mom!! All the details of her final arrangements are worked out. I enjoy the NOW with her. I’ll grieve when she’s dead.
Thank you for writing this. I experienced this when my dad was diagnosed with pancreatic cancer, and sometimes now, my mom has dementia and other health issues. Thank you
This is such a hard thing to go through. Because there’s nothing you can do to change the outcome. That’s why you take every day and make a memory. You laugh even when your crying on the inside. Hold on to the good times. I watch my husband and some days I just want to scream. At the world at the Dr. At the dog.
My faith is in God so I know that to be absent from this world is to be present in heaven. I believe when our loved one goes homes he or she is having the greatest family reunion of all times. That someday when God calls us home we will see our loved ones again. Never give up. Trust that things will be okay.
Bless everyone who is facing this. God loves all of you. Lean on him. ✝❤️
Perfectly said. I said my sad good bye 11 days ago. He is restored and better than he was on earth. Heaven is for real. Praise God.
Praise God for his promises. One day at a time. Praying for Gods unending comfort. God bless you. ✝
It is one of the hardest things to live through!
When you watch the one you love slowly dying everyday you grieve each day for them. You really lose a piece of them bit by bit.