The Unbearable Anticipatory Grief of Chronic Illness

 

I live my life with a sickness in the pit of my stomach.  I wake up with it daily.  Rarely, I do not wake with it when on “vacation” (mostly out of state visiting other relatives) and when I’m completely beyond cell-tower reach.  I say rarely, but really, it’s been only about three times in the last four years, give or take.

Every single morning.

Every morning, that tension is there in my shoulders, the sickness in my stomach, and the knowing expectation that despite everything else I have going on at any given time, I will get the call and will have to start with funeral arrangements.

I say sickness, because there’s no other way to describe it.  It isn’t a pain, exactly, it’s almost a leaden weight that lives there and has for years.  One might easily confuse it for the anxiety of motherhood; the constant anxiety of knowing that one is responsible for a life, for raising a child, and for the ongoing education past the legal adult years.  But that pain is sharper and has more anxiety associated.  This is just a weight in the pit of my stomach that is both grounding my reality and is weighing my body down, slowing every movement.

My mother has been sick for almost two decades.  The list of maladies is long and exotic.  In favor of brevity, I oversimplify to others outside of the family.  While not exactly or technically correct, it helps them get the idea.

“She has stage 4 cancer.”

“She has MS.”

Technically and correctly, she has multiple cancers.  She currently has metastatic adenocarcinoma of the lung that has spread to lymph nodes in her abdomen with various small tumors elsewhere.  She has had renal cell carcinoma that was cured by removing that particular kidney.  Most correctly, she has had adenocarcinoma of the lung three times; two different cancers with different genetic compositions.  The metastases are from the first tumor back in 2003.  That is how long my mother has been sick.

In 2003, after many radiological exams, a nerve conduction study, and a nerve biopsy at the University of Southern California, my mother discovered that the numb spot on her leg would never improve.  She was diagnosed with a rare neurological degenerative condition called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).  It was during these studies that they also incidentally found a mass in her right lung.  With further investigation, it was biopsied and determined to be Stage I adenocarcinoma.  Her doctors determined that it was likely very slow-growing and canceled her upcoming surgery, delaying it for six weeks in favor of other patients. By the time they managed to get to her, her lung cancer was Stage IIIB. In this staging system, it meant that it had spread in the lungs and was now in the lymph nodes. This is the last step before metastatic cancer; it was not invading other structures or organs…yet.  The five-year survival rate was less than 10%.  She had an entire lobe of her right lung removed, had chemotherapy, then had targeted radiation that left her with acid reflux, permanent difficulty swallowing, and trigeminal neuralgia (facial nerve pain, often called “the Suicide Disease”).

Mom has spent the last 20-plus years in various surgeries for her cancers and in treatment for her CIDP, which requires infusions almost three times a week, three weeks out of every month.  While she was first able to tolerate these infusions in her veins, the material is very hard on the vasculature and as a result, she ended up with her first P.A.S.-Port.  This device was implanted in her inner upper arm and allowed for access directly into the central venous system without the multiple stabs that were required to find a decent vein previously.  God-sent, these devices gave her poor nurses a break and also let her relax a little bit with the knowledge that there would be a point of access for her mobility-preserving medication.  Unfortunately, after a few years, each one would fail; after three (alternating arms each time), she no longer had any viable points of access anymore and required a standard port put into her chest.  Being a more slight woman and less endowed in the chestal region, her port is not inconspicuous and she no longer wears clothes where it might be exposed.  Even in this, she had complications; the catheter was not inserted correctly into the port and required revision surgery once I brought this to her doctors’ attention (they had apparently considered the line jutting outward from her neck to be a “cosmetic issue”, I can only assume).

All of these surgical interventions and infusions were required to help her maintain any mobility.  Through 2015, she was capable of driving and did many of the typical home maintenance tasks required of any wife.  She made the grocery list, she cooked dinner most nights, she paid the bills, and she coordinated many of the home-maintenance contractors required to fix the roof, the floor, the air conditioning.  Whatever was required, that was what my mother did, now that she was medically retired from her previous career in teaching.

She continued this until recently.  In 2019, I got married in Sequoia.  It was one of the last events where my mother attempted to stand during the ceremony and was able to walk to the staging area.

Fast forward through the many pains of the isolation of these Covid years, my parents have downsized their home and moved to another about a quarter of a mile from my sibling.  My husband and I live about a half-mile further down the road from them.  We spend some of our time over there, though that time is conspicuously increased since Thanksgiving, when my mother developed “gastritis” and has not managed to recover.  While I nurse for a career, I am also increasing my nursing time during my off-hours; my father is strained to his breaking point.  He is hard of hearing and has not elected to get a hearing aid because they’re “expensive” and “don’t work”.  My mother is notoriously feisty, stubborn, and right about most things (even when she’s not) and he’s at his wit’s end trying to care for her while convincing her to do what is also best for her.  After months of not eating well due to this severe abdominal pain, she is dehydrated, weak, and not in good spirits.  She has fallen three times; once while getting an x-ray for her shoulder injury sustained in the previous fall.  She has also been inpatient three times, each time being discharged with no real diagnosis and no real plan forward.

My mother is in severe pain, fatigued, dehydrated, and dizzy.

My father is exhausted, tired, frustrated, and not young enough to keep this up indefinitely.


She called me last night just to talk.

She was in pain, she was tired, and she was just calling to tell me that she was not doing well.

This was, in her way, her telling me that things were not going well, she was not doing better, and that she did not foresee it getting better.

I took her hint and reminded her that I would be over for the Super Bowl to spend time with her and Dad.  I am not so into football that I would be opposed to laying in bed talking for a few hours.  She thanked me and hung up.


I know what all of these conversations and hospitalizations mean.  I also know that technology fails; scans do not show everything and even a PET scan searching for metabolic activity can miss something that tracks as within the normal range of metabolism.  I know that once someone starts falling, the end is usually somewhere near.  Three falls in two weeks is not a good sign.

While we have expected the end for the better part of two decades, it is hard to come face to face with it now.  I was prepared then.  I was ready then.

I am not ready now.

We are tired, we are exhausted, and I know that she is reaching the end of her ability to push through and live by sheer, vicious fire and willpower.

That pit in my stomach is growing larger and each morning it is heavier. It slows my motion until I feel like I’m moving through water.  The sadness is building up, knowing that the time is coming soon.  Two decades of grieving each diagnosis.  Two decades of deterioration.  Two decades of constant, slow, agonizing loss.  I have grieved each day and each day, I have shoved it aside.  It was not yet time.  There was loss: there was loss of function, loss of time together, loss of experiences.  The loss has become my daily routine.  The anticipation had been numbing the grief through the years as time wore on.

Each night, I tell my husband that it is getting closer.  Each night the tears come more easily.  Each night I know that the anticipation is coming to an end.

And one morning soon, I will wake up and the anticipation will be over.

But I am not ready for this loss.  I am not ready for this grief.

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There are 15 comments.

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  1. Doug Kimball Thatcher
    Doug Kimball
    @DougKimball

    I know how difficult it is to watch a loved one suffer.  Staying strong is difficult when facing a hopeless situation.  Do your best.  Be prepared.  Never despair.  Keep the good memories in your heart.  It will pass and that will be a blessing.

    • #1
  2. danys Thatcher
    danys
    @danys

    I am so sorry. My father passed away last year after a long illness, not as long as your  mother’s, so I understand the years of grieving in anticipation.

    Sometimes life hurts so much.

    You and your family are in my prayers.

    • #2
  3. GrannyDude Member
    GrannyDude
    @GrannyDude

    I’m sorry too, RN. I lost my Mom eighteen months ago after four years of anticipatory grieving.  The very end was easier because I was actively taking care of her: Giving her baths, keeping her medicated, sitting around chit-chatting.  Much easier than fretting from afar,  not having eyes-on, and the ability to know for sure whether she was okay or not.  By the grace of God, she got to die at home, as she wished. I was holding her hand. It still hurts, but that memory is a good one.

    She was in hospice for the whole last year, and loved it! She thought it was just the best medical care she’d ever gotten! “They gave me a cardboard box full of medicine,” she told me. “I keep it in the refrigerator. And if I’m nauseous, or in pain, I just call them up and they tell me which pill to take!”  

    • #3
  4. Susan Quinn Contributor
    Susan Quinn
    @SusanQuinn

    I’m so sorry, TRN. I cannot imagine your pain. Prayers for you.

    • #4
  5. TheRightNurse Member
    TheRightNurse
    @TheRightNurse

    GrannyDude (View Comment):

    I’m sorry too, RN. I lost my Mom eighteen months ago after four years of anticipatory grieving. The very end was easier because I was actively taking care of her: Giving her baths, keeping her medicated, sitting around chit-chatting. Much easier than fretting from afar, not having eyes-on, and the ability to know for sure whether she was okay or not. By the grace of God, she got to die at home, as she wished. I was holding her hand. It still hurts, but that memory is a good one.

    She was in hospice for the whole last year, and loved it! She thought it was just the best medical care she’d ever gotten! “They gave me a cardboard box full of medicine,” she told me. “I keep it in the refrigerator. And if I’m nauseous, or in pain, I just call them up and they tell me which pill to take!”

    I tell people that hospice will be one of their best experiences with medicine and they don’t believe me. 

    It’s come a long way from just ushering in the final days.

    I often wish my mom would go for it, but in so doing she would lose access to the drug that’s keeping her most functional. 

    • #5
  6. Manny Member
    Manny
    @Manny

    I am so sorry to hear Nurse.  I’m a caregiver for my mother too but my mother doesn’t have anything life threatening,  Your mother is an amazing woman to go through so much for so long.  I know the grief is very hard, and I don’t know if this comment will help in any way.  But the grief is what accentuates the love.  If you take a moment to reflect, that very grief is all the love you have for her making itself felt, and if you have to feel it at least realize it’s love.  I pray her pain eases and I pray for a full recovery.  And I will pray for you to have strength to see her through it.

    • #6
  7. Shauna Hunt Coolidge
    Shauna Hunt
    @ShaunaHunt

    Right now, I’m in the midst of grieving for my parents. It’s fresh and still painful.(My dad died in November.)

    Your post touched my heart. Please know that I am praying for you and your family. Love you!

    • #7
  8. Phil Turmel Coolidge
    Phil Turmel
    @PhilTurmel

    I’m impressed with your strength, especially in pushing aside grief.  I pray you can continue that until she passes.  For your sake and hers.

    We’re here if you need to vent more.

    • #8
  9. jmelvin Member
    jmelvin
    @jmelvin

    I can only imagine dealing with these health issues continuously for years and the drain it is emotionally.  In many ways a quick passing is helpful as the anxiety and sorrow comes quickly, peaks, and hopefully begins to relieve in short order.  My wife and I just experienced this with her father’s passing yesterday after a couple weeks in the hospital and then a cancer diagnosis in the middle of last week.  Just Saturday we were talking about how treatment would progress, then  yesterday (Sunday) she got the call to come say goodbye and he passed shortly after she arrived.  But it’s something we all know will come, the only question is when.

    If you can, think of the time you’ve been given with your mom and daily find something to thank God for about that time.  While the sadness may still be there, the thought of the years she has had may calm the anxiety.

     

    • #9
  10. Stad Coolidge
    Stad
    @Stad

    So sorry to hear this . . .

    • #10
  11. Unsk Member
    Unsk
    @Unsk

    The  toll on loved ones in such a situation can just terrible. My wife died of cancer, so I know a little bit of what you are going through, but 20 years? That’s just horrible. So sorry for your ,  your mother’s and your father’s situation. 

    • #11
  12. Nohaaj Coolidge
    Nohaaj
    @Nohaaj

    TheRightNurse: She was in pain, she was tired, and she was just calling to tell me that she was not doing well.

    My Dad also endured a fairly long cancer battle. He remained feisty, reverent and extremely good humored til the end.  I took leave of absence from work to stay with Mom and support both during his in-home hospice care.  My Mom really did not want to talk to Dad about his upcoming death, or funeral arrangements, etc. She was afraid it would upset him. I finally persuaded her that Dad, brilliant Dad, lucid to the end, was certainly thinking of these things, and probably really wanted to talk.  

    When she finally allowed me to bring up the topic, before I completed my sentence, Dad was sharing his entire plan for the funeral brunch, how he wanted things to proceed, everything down to the smallest detail.  Of all people, the person who is in hospice care – or close to it, understands their situation.  They are as scared about hurting their loved one’s by bringing up the subject and finality of death, but, they want to talk about so many things. They want to give hope for the future, and thanks for the past. 

    How lucky and Blessed you are that your Mom wants to talk to you now. When she still can. 

     

    • #12
  13. TheRightNurse Member
    TheRightNurse
    @TheRightNurse

    jmelvin (View Comment):
    My wife and I just experienced this with her father’s passing yesterday after a couple weeks in the hospital and then a cancer diagnosis in the middle of last week.  Just Saturday we were talking about how treatment would progress, then  yesterday (Sunday) she got the call to come say goodbye and he passed shortly after she arrived. 

    Sometimes that’s all they’re waiting for.  Sometimes the patient is just waiting for everyone to leave (because they don’t want to pass with an audience).  Sometimes it is just one person being there to say goodbye…and then that’s done and they let go.

    Everyone’s journey in life is different and so is the final stretch as we’re dying.  My mom has been living with cancer for 20 years.  Each thing that came up, we just treated.  And if something else came up, we would deal with it then.

    This stretch has been the most difficult because there’s been no relief, just loss of function and joy and everything else.

    • #13
  14. TheRightNurse Member
    TheRightNurse
    @TheRightNurse

    Phil Turmel (View Comment):
    I’m impressed with your strength, especially in pushing aside grief.  I pray you can continue that until she passes.  For your sake and hers.

    Well, Phil, ongoing and untreated chronic PTSD does have it’s upside.  I’ve worked on a neuro unit as a nurse for 12 years, so I’ve seen a lot of astonishingly awful situations that I have had zero control over.  Most nurses have.  Particularly given the last two-three years, we have gotten very good at burying things.

    Those poor nurses.  I have 24 years of experience on them.  I can let things flow through me and not let them register for years.  Hell, I’ve never grieved over her original cancer back from 2003.  I don’t have time for that.  That’s for other people.  I have a child and a family and people who are not blessed with my own issues and have to actually feel their emotions when they happen.

    I’m not being sarcastic when I say it is an upside.  The emotional numbing and the ability to logic any affliction is very, very helpful.  I’ve only had a few times where it has really gotten to me (mostly with my own health issues) because of what it will do to others.  I know I can take it.  I worry about everyone else.

    • #14
  15. Steven Seward Member
    Steven Seward
    @StevenSeward

    It was very tough reading about your mother’s situation and your anxiety.  I had some trials for a few years with my own mother before she passed away a year ago, but nothing like you are experiencing.  Best wishes to you and your entire family.

    • #15
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