Anticipatory Grief

One of the things that I have been experiencing over the past 33 months is this thing called grief.  "But he's not dead yet!"  "Live in the moment!" "Make memories!" ...these have all been said to me at one time or another by well meaning friends or clergy.  Some days it seems like the only people who truly get it are my fellow terminal cancer caregiver warriors, and there are none of those who are not in my online life.

Anticipatory grief is the grief a family member experiences when their loved one has a terminal diagnosis.  It is real, it is difficult, and it comes with most of the same hallmarks and symptoms of "regular" grief, but without the cultural awareness. 

Though this is different than the grief that follows a death, anticipatory grief can carry many of the symptoms of regular grief – sadness, anger, isolation, forgetfulness, and depression.  These complicated emotions are often coupled with the exhaustion that comes with being a caregiver  or the stress of being left alone when someone goes to war or is battling addiction.  We are aware of the looming death and accepting it will come, which can bring an overwhelming anxiety and dread.  More than that, in advance of a death we grieve the loss of person’s abilities and independence, their loss of cognition, a loss of hope, loss of future dreams, loss of stability and security, loss of their identity and our own, and countless other losses.  This grief is not just about accepting the future death, but of the many losses already occurring as an illness progresses.
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It is true that my husband is not dead yet.  But it is also true that he has much much less energy now.  He is sick in body.  What this means is that our lives have gotten smaller.  We can't go and do.  There simply is no energy.  For our wedding anniversary we did nothing, because he didn't feel like it.  We made up for it later, but it was still a hard hard day.  I wanted to "suck the marrow".  What if this is our last anniversary together?  It didn't matter.  He didn't want to.  So...grief.

There's also a myth that if one has a terminal illness, it's time to "live like you are dying" which supposedly involves lots of expensive vacations, skydiving, climbing the Rockies and other laughable activities.  The reality is that he's blessed and lucky to still be able to sit in a chair and work all day.  Treatment is hard core and takes a toll.  But aggressive brain cancer kills quickly and one does what one must.  The reality is that any shred of extra energy will be spent shuffling doctor bills, insurance companies and the family budget.  High adventure become a stroll in the local park.  And even without treatment, cancer is exhausting. Mothers, remember that first trimester of pregnancy, when there was rapid cell growth going on in your womb?  Yeah...that's what cancer does, too.  Rapid cell growth is draining. 

So the change in life is another thing that gets grieved.  I miss the "before".  Not to mention the loss of dreams.  Suddenly, with a terminal cancer diagnosis, spouses are thrust upon temporarily diverging paths.  He is moving towards death.  I am moving towards widowhood.  We know in the end we will be reunited, but the upcoming separation looms large, and sometimes makes conversation difficult.  Gone are dreams and plans for old age. We learn to live in today, because truly today is all one has. 


Trite phrases like "we are all terminal", or "my husband could be hit by a car on his way to work" are so very dismissive of the reality of living with a terminal diagnosis.  Most people, while acknowledging that possibility of sudden, unexpected death, don't dwell on it, and don't anticipate it.  It is statistically a very low possibility.  The chance of death with a GBM diagnosis, on the other hand is 100%...when a long term survivor is considered someone who makes it to the three year mark, that is a dire diagnosis.  I read somewhere that among medical professionals, GBM is called the Terminator. It is a death sentence.  Perspective. 

Part of anticipatory grief is talking about it.  At least for me.  So, sometimes I make everyone uncomfortable by saying something like "After Wes dies..." or "When I am widowed...".  People literally back away or squirm.  But I have to talk about it, I have to think about it, I have to plan for it and I must embrace this reality.  It doesn't mean that I WISH him dead, or that I am looking forward to his death.  I am not. 

I am NOT looking forward to him losing more of his speech.  I am not looking forward to him sleeping most of the day and night.  I am not looking forward to diapering him and spoon feeding him, and him possibly being paralyzed on one side of his body.  I am not looking forward to my husband's death.  I am not looking forward to falling asleep alone.  I am not looking forward to being the one to pay the bills.  I am not looking forward to being a widow on social security.  I am not looking forward to losing my health insurance. 

So what does it look like for me right now?  Random crying jags, being in a fog, much anxiety...difficulty making decisions, panic attacks, gaining 40 pounds (I'm losing those pounds again now because of very deliberate work and effort), and feeling stuck (which I am learning is an anxiety symptom). All of this is happening at a rather hormonal age, too.  So, at home around my poor family, I am a bit loonytoons.

But I have to face it, this infinite sadness.  And so I do. 


May Rico said…
My mother died from GBM a few weeks ago, six months after her diagnosis. Thank you for giving words to a lot of what I was feeling. I had a wonderful support system, at home and at work, and she had amazing care from hospice and the assisted living facility where she spent the last 4 months of her life. But I still experienced a lot of what you're talking about, and I realized how much of our social interactions with others in time of grief is based on "scripts" built for everyone except the person experiencing the loss. I felt often like it was my responsibility to give the accepted response and not deviate from the script when people offered sympathy or asked how I was doing, because it would have been rude not to. I was the one who needed support, but it was my social responsibility to ensure those around me could be comfortable in the presence of my grief. Surreal.
elizabeth said…
yes, it is too easy to misunderstand another's pain. such suffering, real and constant for you. We are praying. I am glad that Wes is still as well as he is but how very difficult; My friend A. lost her Dad to this and my friend C her Mom. It's very very hard.
Pat Jones said…
Thank you and bless you for speaking truth! I am a friend of your mom's.
I did not die from my stage 4 breast cancer, but there were days I wanted to and that made things SO hard for my caregivers. As much as I support Cancer walks and runs and believe in those things, MY focus has been more about the caregivers and the need for MORE support, MORE awareness, MORE love.
I cannot ease your pain. I cannot fix your husband. I will not try to offer platitudes of positive thinking, etc. But, I will say, God is with you---some days, I'm sure you can't feel it---but I do believe God hurts WITH us and God is the ONLY one who truly scream and cry and grieve and do what YOU need to do to get through this. I am and will continue to pray for God's help and strength for you and your family.
I am so glad that you wrote this. I think well-intentioned people misunderstand anticipatory grief, and assume that everything is so much more linear: first you live, then you die, then we grieve you. But when we lose people in long battles with cancer, with ALS, with Alzheimers, in so many different and common ways, we are slowly losing them every day, long before they die. Grief is a path we must walk through, and sometimes the majority of the walk happens before the death. It's not linear at all. This is how it has to be. I continue to pray for you and Wes and the kids, and part of my prayer is that you can walk the walk that has been given to you, taking each day as it comes, without concern for how people think you "should" be doing it. xoxo
monica said…
Now that you live close to me, I want to be of help. I just don't know what help looks like for you. So you tell me. I can come sit with you. I can watch funny, sad or stupid movies with you. I can stay with Wes while you run errands. I am praying and will pray, but I can also be a local friend and support for you. You can email me and we can figure out.
Alana said…
I'm so sorry for your loss, May Rico. So sorry.

Monica...I would love the get together for coffee w/ you sometime, get to know each other etc. would love that.

everyone else: truly deeply from the bottom of my heart thank you for your prayers. I can feel them. We are being sustained by them. God is with us in such a close way...but oh, this is hard.
Athena said…
Thank you so much for writing this. Praying for you. Athena

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