Holding The Hand That Once Held Mine: An Adult Daughter's Journey Through Terminal Illness and Loss

As I sit and reflect on this topic, I know that this piece will be written far differently from my others.  Although I lost my dad over 2 years ago, the weight still sits heavy.  The crash of grief no longer arrives as impact but instead continues to even out and settle into something a little steadier.  Still heavy, still present, but no longer violent.  The sharp edges have dulled, and those moments of collapse are more far and few between.  Sadness moves through my body without shattering it.  I can function a little easier and remember without breaking apart.

There is a particular kind of grief that comes with both losing a parent as an adult and losing a parent to terminal illness.  It is a grief that doesn’t begin or end at the moment of death itself.  It started for me the moment we received news of my father’s diagnosis and continues to show up in ways that surprise me, even now.  By the time he died, I had already been grieving for  two months, all while helping take care of him and my mom, trying to be present with my kids through the distance of miles, trying to stay on track of the new career I was building, paying my bills and making sure my house was looked after from afar, and doing my best to pretend that I wasn’t quietly unraveling.

No one really prepares you for the slow-motion heartbreak of watching a parent decline when you’re old enough to understand exactly what is happening, and young enough to still want and even need them.  There was not only a void in one space, but in each of the spaces my father filled in my life.  I didn’t just lose him once, but every time I was reminded of a role he played in my life that he could no longer play, and every time my role had to change with him.

When a parent is terminally ill, time becomes warped.  Every moment feels both urgent and endless.    Nothing feels real, yet everything feels too real.  It is surprisingly hard to stay grounded in the present, even when knowing all too well what the future is bringing and not wanting to go there.  You try and savour every moment, while the waiting stretches on, heavy and exhausting, like holding your breath for an outcome you already know and are dreading.

As their child, you are expected to be strong.  Helpful, but not controlling.  Present for them, while remaining functional in your own life and with your own children. Finding balance there often feeling impossible.  Feeling that no matter where you are focusing your attention, you are letting someone down.  Rarely spending an ounce of time on yourself.  You become a quiet expert in medical terminology you never wanted to learn, translating test results, tracking medications, and bracing yourself for each new change.  Not only supporting the parent who is terminally ill, but also the parent that is not and who is in the midst of their own personal hell.

You make sure they eat, you make sure they have taken their medication, you make sure they rest, you make sure to be on top of their pain management.  You cook for them, become a different kind of confidant, and help them get their affairs in order.  You help them with their personal care, taking care of them as they once took care of you.  You advocate for them with their doctors and help try to make sense of the unsensible.  Making decisions you never imagined making and helping in ways you never imagined helping.  You become both child and caretaker, which is a strange, tender, and deeply unfair combination.  You still want to be held, but you are now the one doing the holding.

There is also a specific loneliness in this type of grief.  Friends and family are sympathetic, but life keeps moving for them.  You notice them living “normal” lives, when your life is feeling anything but.  Their trials and tribulations very real, but much different than yours.  At times, I remember feeling impatient with my friends, reluctant to admit the inner judgement that told me what they were carrying felt lighter than what I was holding.  Other times I felt envious of that “normalcy” I was craving.  Of course, each of these reactions brought about deep feelings of shame and guilt. This was not who I knew myself to be.  With terminal illness, there is no sudden tragedy, no quick clean break, just a long deep ache that hums beneath everything you do.

Anticipatory grief is real too, and it is brutal.  You mourn the future while still living in the present.  You grieve conversations that will never happen, at the same time you’re grieving the conversations that are happening.  You grieve milestones they won’t see and milestones you won’t celebrate together.  You grieve versions of yourself that you know will have to exist without them. You grieve knowing that your role with the parent left here is changing too.  They are now functioning as a half a pair of scissors, while deep in the grief of knowing their other half is gone.  You feel the weight of becoming something steadier for them, even as you are figuring out how to hold your own loss.  Simple tasks feel heavier for them, and decisions they are not used to having to make on their own can become overwhelming.  There are moments when you realize you are holding things together in ways you never had to before.  You grieve not only the loss itself, but the quiet shift in responsibility.  The unspoken understanding that your relationship is no longer the same.  And they have grief around this too!  The relationship is no longer the parent taking care of their child, it is now the child supporting their parent and this relationship is shaped not just by love but also by absence.

And yet, through this grief, I was able to find what I call my “diamonds in the shit”.  A phrase I use with many of my clients.  Those glimmers that can exist right alongside of the pain.  Small quiet moments of steadiness, connection, or even beauty that don’t erase the suffering, but sit beside it.  They didn’t fix anything.  They didn’t make the grief hurt less.  But they reminded me that even in the mess, even in the heaviness, something good and real was still present.  They came to me in moments of unexpected closeness.  Ordinary afternoons that became sacred through conversation.  Shared silences with eye-to-eye contact that said more than words ever could.  It was noticing the outpouring of love and concern from friends and family members who checked in regularly to show their care.  It was being together with family members who lived away, but came in to be with us, hold us, and honor my father, along with the family members and friends who lived in the same city.  It was hearing people sharing their wonderful stories and memories of my dad.

When death finally comes, people often assume the grief will feel familiar, like a culmination of everything that came before the end, but it doesn’t.  It feels different.  It is no longer dread.  There is relief tangled with devastation.  Guilt braided into peace.  The pain shifts from constant vigilance to a hollow absence.  You move from hypervigilance to a strange kind of quiet, as if the alarm that has been blaring for months has suddenly stopped, but you can still sense its ringing in your nervous system.  All of a sudden, I was no longer the daughter I once was.  My dad was no longer there, and everything was different.  There was no more tracking needed.  No more medications or care to give.  The work was over, which was both mercy and a loss.  My love for him no longer had a place to go, no place to land, so it circled back and became part of my grief.  Grief after my father’s death was not louder than while he was sick, it was wider.  It spread to all those spaces that used to be filled with care, with purpose, and with fear.    It spread into the love and care I give to my mom.

Losing a parent as an adult does not mean you are “ready”, it just means the world expects you to cope better.  But the truth is, grief doesn’t care how old you are.  It doesn’t care that you have responsibilities or that you should be grateful for the time you had.  It arrives anyway – whenever it wants – uninvited, nonlinear, and deeply personal.  Some days it shows up in tears, some days it shows up in moments of forgetting he is here and picking up my phone to call and tell him something.  Sometimes it comes out in anger, and other times in numbness.  Most of the time it shows up when I least expect it - seeing something or hearing something that reminds me of him when I am out, overwhelming me with a sense of devastation and deep connection at the same time.

What I am learning is this…..being an adult daughter means carrying the grief forward, not leaving it behind.  It means integrating it into my life step by step and day by day.  It means finding some meaning in this loss, which I have done by keeping his memory present and allowing my love for him and things I have learnt from him to continue to shape who I am.  It means allowing myself to miss him without pushing that away.  It means understanding that strength and sorrow can coexist.  That I can continue building my own life and still ache for a person who helped shape it.

There is no finish line for this grief that I carry.  It will be with me throughout my entire lifetime.  This is not something I will overcome, but something I will continue to learn how to live alongside of.  To let it soften me rather than harden me.  To let it continue reminding me of the depth of my love and admiration I had for my father, the depth of our bond, the privilege it was to be his daughter, the ways he will still live through me, and that is a bond that will not end, even when everything else has changed. 

I love you daddy, and I always will.