A woman kneels on a bed brushing the hair of another woman who drinks a warm drink

Are There Varying Stages of Caregiving?

All over the internet, you'll find pages and pages delineating the stages of cancer, caregiving, and grief. I'm not here to improve or take away from them. I know those pages help many people, and if you're one of them, great! Most of them don't relate to my experiences, though.

As a 3-time caregiver whose loved ones have all passed, I've discovered my own rhythm, and I've learned that each person is unique and different from the others.

I don't experience stages of grief

As a cancer caregiver and a grieving relative, I experience no set stages, just a low-lying fog. Sometimes, I'm thrust into the dark ahead of me, but the fog thins out just as quickly.

Sometimes it's bright for a while, and sometimes only for a moment. There's no anger, denial, bargaining, or acceptance; just fog.

When the fog lifts, I can be the most positive, upbeat, and supportive person in the world; I feel no loss or grief. Or very little, that is. But when it settles again, I'm fatigued and burnt out as a caregiver and feel like the one who's left behind.

My phases of caregiving

For the sake of this article, I'm focusing on my 3 phases of caregiving. Yes, you read that correctly. The phases are:

  1. Before
  2. During
  3. After

I realize this is pretty simplistic and that other caregivers can subdivide those 3 infinitely, but these phases are how I experience caregiving.

The "before" phase

My loved one has a mammogram, ultrasound, or colonoscopy appointment, and I'm supportive and present. "It's all going to be okay," I say. "It's just a routine procedure. I had it myself, and it was a breeze".

Then comes the bad news. While sitting in the oncologist's office with my partner, my mind races ahead. What does this mean? Is it terminal? Can it be cured? How are they handling this?

A quick glance over to them, and the hand-hold becomes tighter. Then the "selfish" thoughts come:

  • How long will this impact the life I've come to enjoy?
  • How many chemo sessions will there be?
  • Will I have to be a caregiver all alone?
  • Who will support me?

The "during" phase

My loved one and I are in the heat of it now. I sleep with one ear open, napping when I can. I load my backpack with things we'll need during those long hours in the chemo room: puzzles, books, water, snacks, my journal, the battery charger for my phone, and an extra beanie and gloves for when they get cold.

My duties shift over time

As time goes on, and as the cancer spreads, my caregiving includes wound dressing, the administering of medication, and keeping track of appointment dates.

Of course, if you're a caregiver, you know there's so much more that we do. There's not enough time and space here to list all of our myriad responsibilities. I'm frazzled at this point and my exhausted brain whispers, how much longer? Then I snap that thought back and bury it deep within me.

When the time for passing on comes, I somehow regain the strength I thought I'd lost. My care is more hands-on than before. I wish I'd spent less time thinking of my own "selfish" needs. I overthink the past and try not to think about the future without my loved one.

The "after" phase

It's over now. The hospital bed is gone, the family and friends have left, and I turn off the front porch light. Now begins the adjustment to my loss. I no longer know what my role is. What's my job now?

I've spent years caregiving, and it's all for nothing. I know what I've lost, but what have I gained? Not only have I lost my family member, I lost myself. Who am I without them? What is my life going to be like from now on?

Redefining myself and my purpose

Slowly, I began to recreate myself. I learned to do things alone. Introspection and self-analysis set in, and I got to know a new me with time. I protect her savagely and filter people and activities carefully. The fog lifts and settles over and over, but it's less dense each time, allowing more light to shine through.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AdvancedBreastCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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