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The Pain Of Losing A Parent Before They're Actually Gone

I called my Dad on Father’s Day.

I knew he wouldn’t answer. He rarely does. He forgets to charge his phone so it’s almost always dead. Even when he does answer, he can’t hold a conversation and after a few minutes I end up signing off with an “I love you” and hanging up, not knowing if the phone was even pressed to his ear to hear my words.

In recent years his health has declined, both physically and mentally. So much so that he now lives in a group home receiving care around the clock. His doctors aren’t sure exactly what he’s dealing with, but they throw around words and phrases like “atypical” and “early on-set.” Basically, “If we knew, we’d tell you, but we don’t, so all we can do is treat the symptoms. Here’s another prescription, we’re sorry.”

It has been heartbreaking, to say the least.

The dad I knew, the dad I loved, is different. Thankfully he still knows me, but I don’t expect that will be for long. And, of course, he still captures a special place in my heart. He was my first Prince Charming, my first hero. Now my sisters and I are left to fill that role. We are his caretakers, his providers. We bear the burden of his health concerns, his finances, his everything. In many ways, he is like a child. A more complicated, less hopeful, full of worry child.

Nothing prepared my me for this transition of care.

One day I was going to my dad for career and parenting advice and it seems like the next I was setting up power of attorney while my sister was fielding calls from LifeAlert as he had fallen again and the fire department was being dispatched.

It’s so hard to watch with hope and expectation as I raise my children and beam with pride at their accomplishments while simultaneously seeing someone I care deeply about wither away.

I’m not old. Not quite 33. My half sister is 44. My two younger sisters, 27 and almost 30. All but one of us has children. We’re sandwiched as caretakers between two generations of precious people — our bevy of offspring and a struggling parent. And it’s hard. It’s so hard to watch with hope and expectation as I raise my children and beam with pride at their accomplishments while simultaneously seeing someone I care deeply about wither away.

My dad has lost all joy. His spark is gone. He has odd personality quirks due to his illness. He looks like a shell of the tall, strong man he once was. Honestly, I don’t recognize him — in body or spirit. Although he is still with us, he's just… gone. Absent in so many ways. And yes, I’m crying as I write, because I never thought I would lose a parent until they were actually gone. No one warned me that it could be this way. I didn’t know a person could carry this kind of grief before death.

The dad in my memories is different than the dad I have now. It's an odd kind of grief, to be mourning who he was while loving him through the season he is in right now. Since talking on the phone is hit or miss and due to distance I can’t visit often, I’ve taken to writing him letters. I’ll tuck in photos of my kids, reminding him of their names and ages on the back. I buy his favorite snacks and pass them on to my sister to drop off during her weekly visits. I pray for him every day. For peace and as much understanding as he can muster.

Before I moved away and before we got approval for him to live in his group home I took him to doctor’s appointments; arranging childcare for my own children in order to do so. I prepared freezer meals for him as I cooked for my own family so he would have something nourishing to eat. I helped him wade through the financial hardships of his divorce and made countless phone calls on his behalf. When he was still driving, he would visit my home often, bringing his laundry along for me to add to my own mountain. With all the spare time of caring for my family of six, I attempted to care for him. I tried to fill in the gaps.

I’m in the heart of my parenting days. I have a toddler, preschooler, and two children in elementary school. Shortly before I got married at 20, I confessed to my husband that I wanted children young. Not immediately, but soon. I grew up with only one grandparent, and with our four parents still alive and well, I wanted children as soon as possible in order for them to grow up with the love and memories of all their grandparents. I knew active, involved grandparents were one of the greatest gifts I could give to my children. Unfortunately, I didn’t realize how little control I had over this. Timing was a very small piece.

In my yearning to gift my children grandparents, I dreamed of my dad taking my kids on ice cream dates and us all doing yard work together. I hoped my daughter would bond over West Wing and Madam Secretary episodes with her politics-loving Pops. I saw my dad cheering from the sidelines of t-ball games, maybe even coaching. I wanted my children to have all the memories I lacked with a grandpa. I was so optimistic.

I’m experiencing both the miracle of birth and the path toward death. I’m grieving. It was not supposed to be this way.

I never imagined corralling my kids in a nursing home setting, reminding them to be quiet and gentle. I never thought my 3-year-old would knock his grandpa off balance, leaving me to grip my baby tight in one arm while reaching out to swiftly lower my dad back into a chair. I didn’t think my dad would forget their hobbies or age, let alone their names. I didn’t expect to lose a parent while in the heart of parenting. I thought it would come much later. When I was ready. When he was truly old, not in the supposed prime of retirement years.

As a millennial mom it seems that I’m one of many in my peer group who is caring for an aging parent. I’m not alone when I say that I’m watching dreams die. I’m not alone in wondering “What if?” while asking “When? How?” I’m experiencing both the miracle of birth and the path toward death. I’m grieving. It was not supposed to be this way.

Sandwiched between little ones who need me and an older one who can’t live without me, I’m stressed. I’m worried. I’m at a loss as to how to best divide my time and resources. I feel guilt on all fronts. No one gets enough and I’m depleted from what I portion out between them all. Endurance must be on my side though. I’m far from having independent children and only God knows if my dad has days or decades left.

I’m not tackling any of these burdens alone, thank goodness. And in many ways, these burdens of life are my greatest blessings. Life sure doles out some paradoxical lessons! I carry my responsibilities alongside my husband and sisters — they are my team. We’re all stepping in and doing what we can while processing our loss in unique ways. My husband is an amazing partner in caring for our children and supporting me on this journey with Dad and my three sisters all contribute to sustaining Dad’s wellbeing. It isn’t easy though. Seeing both ends of the spectrum, living both ends. It hurts. It makes me angry. I so often feel tears burgeoning in my chest, pained tears of love and loss. It’s a deluge of emotion that I live with.

When I smile at my little ones’ antics there is almost always a twinge of sadness. My dad will never be part of this joy. He is gone. He will never grandparent in the way I dreamed he would. Never again will he will be the dad he was to me. I feel fatherless. Not because he has passed, but because I’ve witnessed who he was and now, who he is. I’ve watched as a neurological disease steals him from our family. Jamie Anderson said it best, “Grief is just love with no place to go.” And my grief overflows. As does my love.

I still have my dad. I can still give him my love. But it’s different. It’s a slow road of loss, of mourning, of losing control and not knowing what is next. I’m a parent losing my parent and I can’t help but wonder if it could have all been different. I can’t help but ask, “Why?” all while pressing in and moving forward.

It will take persistence to endure this journey of loss. Something, thankfully, I learned from my dad. Parts of him will always be a part of me. As I lose him, I can’t help but hope that I’ll find him. In me. In my children. In all the good memories.