As we drove around the corner, on our way to celebrate my birthday, I caught sight of several paramedics putting a silver blanket over the body of a homeless person. It was early March and cold. They’d passed away sitting on the sidewalk, back resting against one of the brick buildings just a few blocks from Pike Place Market. It appeared they’d died alone, despite being right in the middle of a major tourist hub.
That night I sobbed in bed as my husband held me. “What if my dad died alone?” I choked out. “What if he died just like the person we saw today? What if he might still be alive? What if he’s living on the street? What if he’s cold right now?”
“This is what your mom said your dad wanted,” he gently reminded. “Your dad wanted you to be safe.”
But what about Dad’s safety? I wondered. Why did no one ever talk about what was best for him? He was part of the family, too. And why was an ill man allowed to decide what was best for him and his family?
Thirteen years earlier, when I was 17-years-old, my mom told me: “Your dad has been diagnosed with frontal lobe dementia.” And with those nine words, my world crumbled.
As would be expected, Mom slowly told our entire community — family, friends, people at church, neighbors. She explained, again and again, the painful story of how her husband was dying of a rare degenerative brain disorder. She wrote about it frequently for her websites and blogs. “The diagnosis is a death sentence,” she often explained.
Dad would slowly fade away, one little piece at a time, until he was completely gone. He’d gradually become different, likely even violent, before the disease finally took him completely. If he was lucky, my mom said he’d have 10 years left to live. By 2014 he’d be gone.
Mom said that Dad likely wouldn’t be able to work for much longer. Mom said that we couldn’t safely live together anymore — and it was what dad wanted, for us to be safe from him. Mom said that Dad couldn’t always remember what he wanted for us; sometimes he didn’t even know he was sick which was, itself, a heartbreaking symptom of the disease.
Sometimes from my bedroom I’d hear Dad getting angry, arguing with Mom about the diagnosis. But mom assured us that in his moments of clarity, when the fog of dementia briefly lifted and Dad remembered he was sick and was able to express what he wanted for his family, he always said he wanted us to live separately. He always said to do whatever it took to keep ourselves safe from him.
“But isn’t there a hospital for this kind of thing?” I’d asked. I’d been told no and that it was important for us to respect his final wish: Our safety from him. My parents were both conservative Christians who believed in gender roles, so Mom explained that this was Dad’s final act as head of our household. We needed to submit.
For our one-income working class family of five — all three children still school age — separating from Dad threw us into a financial crisis. A crisis I couldn’t begin to imagine how we’d possibly survive. Thankfully, some members of our community stepped up to help.
My mom’s editor gifted mom and me frequent flyer miles so we could attend a conference in Philadelphia for those losing a family member to frontal lobe dementia. I spent a jetlagged weekend listening to speakers discuss grief and the pain and emotional mess of losing a family member without the usual finality and closure.
At the conference I met several parents who later connected me online with their teenage children. The pain and isolation of losing a parent to this life-shattering illness left my pen pals battling crippling depression and anxiety, suicidal thoughts, and self harm. I had found my people. I wondered how many of us teens would make it out of this alive.
After my mom broke the news to my grandpa Hough (Dad’s dad) about Dad’s dementia, he added Dad to his cellphone plan. He worried that as the dementia got worse his son would start getting lost while driving or even just walking around town. A cellphone seemed like a necessity for safety.
Someone my mom knew offered their family vacation house on Camano Island for free. With all that was going on, they thought we could use some time away. They were right. Mom probably took us three kids there around five times, maybe more. It was a beautiful, peaceful home on some wooded property, and all we had to do was call ahead of time so they could drop off the key.
So many people — family friends, people from our church, and readers of Mom’s various online websites and newsletters — offered support when they learned about my dad’s diagnosis. Money and gift cards. Groceries and household items. A subscription box to locally grown organic vegetables. A one-time cleaning service. Thoughtful homemade gifts. Even practical things for the cats.
Our church, worried for our eventual safety as Dad’s health declined, paid all the move-in deposits on an apartment in Seattle so that my dad could move out. The apartment was close to his work. I hoped that meant he’d be able to work for longer.
Before Dad moved out, my siblings and I went with Mom to the store to pick out housewares for Dad’s apartment. “I think we should get the nicer spatula,” I remember saying. Money was incredibly tight, with the future looking even more financially bleak. But my dad was a professional baker and chef who was going to be living in a tiny apartment in the city, completely alone, as a brain disease slowly took his life. He was going to die in that apartment without a single one of his family member, not even one of our cats. The least we could do was not skimp on a spatula.
Two months after Dad moved out, the rest of us sold our house and moved to a mobile home in a different city.
My life ripped in half the day I was told Dad was dying. Before and after. My life had been permanently altered, and I had been too. After I was told Dad was dying became the landmark for when my eyes became hollow. For when I learned how truly lonely I could feel. For when I wanted so badly to give it all up but chose not to only because I had younger siblings who were financially dependent on me.
I was 17 when my mom began regularly referring to me as my siblings “second parent.” But I not only became a second parent, I became the breadwinner. It was a heavy load for someone so young to carry. I often felt so overwhelmed I physically couldn’t breathe. I felt crushed under the responsibility of keeping my family warm, fed, and off the streets.
I lived with my mom and siblings at the mobile home for eight years, moving out when I got married. And during the vast majority of those eight years (with the exception of two times my mom worked at a call center during the Christmas season, and one time she briefly worked at our church), I was the only person in our household of four working. My mom said she was too grief-stricken to work. And while grief and depression was eating me alive, I needed to do everything I could to help my grieving family survive. “I’m doing it for Dad,” I’d tell myself. “He can’t keep us safe, so it’s up to me.”
I paid for rent, groceries, gas in the car I didn’t drive, everything related to holidays, clothes for everyone, and so much more. When the power got turned off again, it was my responsibility to turn it back on. I paid for it all with minimum wage jobs and loans — loans I’m still repaying to this day.
It was grief though that weighted on me heavier than any of the loans or even the responsibility for caring for a parent and siblings at such a young age.
Due to grief, Father’s Day became the hardest day of the year. A time of year to survive.
As a kid, I remember making cards with construction paper and markers that read “#1 Dad.” After noticing how many Father’s Day gifts had pictures of ties, I tried to convince my mom to buy Dad a tie for Father’s Day. “But he doesn’t wear ties,” Mom said. “I know!” I thought. “That’s because he doesn’t have one!” I worried my super casually-dressed father was missing an essential part of his dad uniform.
When I was in my early-20s, and my family was attending a little Presbyterian church, I came to the conclusion that it was best to try to avoid leaving the house as much as possible on Father’s Day. During the children’s lesson, the senior pastor asked the little kids gathered at the front of the church to raise their hands in response to questions like: “Does your dad give you hugs when you’re sad?” and “Does your dad help you learn how to throw a ball?” The assumption was that all the children would raise their hands. But each time he asked a questions, all of the hands went up except one — my little sister’s.
Each time my sister’s hand didn’t go up, my heart broke. By the time she came back to the pew, she was holding back sobs. I grabbed her hand and escorted her out of the sanctuary. We stood in the church lobby, holding each other and sobbing. We sobbed as hard as the day Mom told us our dad was dying.
We sobbed so hard that several people at church who we barely knew, who had no idea why we were crying, came over so they could stand next to us and gently pat us sympathetically.
We sobbed so hard because our dad was gone. Even though he was technically still alive, we had no idea where he was. And even if we found him, he wouldn’t even remember he had children.
We sobbed so hard because we didn’t have closure — and never would. There was no grave marker with my dad’s name on it, no place to bring flowers. But yet he was gone. And someday very his name would be etched in stone but we’d never know where he was buried.
We sobbed so hard because we’d lost our daddy.
When I got married in 2013, the grief ripped me open all over again. It’d been 9 years since I’d been told my dad had 10 years left to live. This meant that while he might still be alive, he wouldn’t remember me.
He wouldn’t remember how much I’d been a daddy’s little girl. He wouldn’t remember how I’d raced the car every day he left for work so I could be the last one to wave him goodbye as I stood on tiptoe at the end of the street yelling “Bye, Daddy! Bye! I love you! Bye!” He wouldn’t remember how he took me to Starbucks to get a steamer every year for my birthday before anyone else in the house was awake. He wouldn’t wonder what I’d been up to since he saw me last, years ago. He wouldn’t even know my name.
Some people find memorial items comforting to work into their weddings. But I didn’t have the closer to find that helpful. And the idea of including a picture of him or a special candle felt weird and painful without that finality. If someone had asked me if my dad was still alive, I wouldn’t have known how to answer. “It’s complicated” would’ve been the most honest reply. He was gone, even if he wasn’t dead yet. But was he up there somewhere looking down on us? Or was that still coming? Not knowing hurt so much.
After learning I was engaged, well-meaning acquaintances gushed about how I must be so happy. The happiest time of my life. They asked about whether I’d found The Dress, what color scheme we’d decided on, and about my dad. “Will your dad be walking you down the aisle?” and “Are you going to have a father-daughter dance?” and “What does your dad think of him? Do they get along? When did they meet?”
Every time someone asked about dad, it felt like when I’d slip off the jungle gym as a kid. I’d land on my back so hard it knocked the air out of my lungs. Time stopped as I lay in bark dust staring up at the sky, back hurting and unable to even gasp for air.
When my fiance and I looked at a potential venue, I ugly cried in public. Imagining what it’d be like to stand there holding hands as we said our vows, family present … except my dad.
Like Father’s Day, my wedding became a thing to survive, an event to get through as quickly as possible. More than anything else, the grief that my dad wasn’t going to be at my wedding dictated wedding planning. From waterproof mascara to deciding to only have immediate family present, everything came down to missing Dad. (For more on this, read my article for Offbeat Bride Wedding Planning as a Fatherless Bride, and check out the comments too.)
A few years later, I was chatting with a maintenance man at our apartment complex. Somehow it came up that we both used to live in Olympia, Washington and even attended the same church.
“What’s your dad’s name?” he said. “I wonder if I knew him from the men’s groups.”
“Stuart Hough,” I said. I hadn’t said my dad’s name out loud in years and it hurt.
“Hmm. Don’t think I knew him. What’s your mom’s name?”
Thankfully, he couldn’t place my parents. So I didn’t have to explain that Dad was gone. It’s a small world though. I lucked out that time but other people from our old church did remember my parents. Other people even remembered being told my dad was dying and asked how my mom, siblings, and I were doing. They meant well but it hurt.
After I wrote a blog post about how hard it was growing up bisexual in a homophobic religious setting, my mom immediately cut contact with all three of her children, to the point of even blocking us on Facebook. While it was definitely the exact opposite of how someone hopes their parent will respond when they come out, it was honestly a blessing in the end.
Not long after my mom blocked us, I saw the homeless person who’d passed away while in Seattle. And no longer being in contact with my mom provided the space and freedom to begin to doubt and question how she’d handled things with Dad.
Even within a conservative Christian context, why was a sick man who couldn’t always remember his brain was deteriorating allowed to make important decisions regarding his own health?
When I talked with other people who’d lost family members to various forms of dementia, the family made choices based on what was best for their loved one (and the family at large). Why hadn’t my dad been cared for in a similar way?
Why was he allowed to move to an apartment in Seattle by himself? Why was he allowed to cut contact with his family when he was sick? When I’d met other people with family members suffering frontal lobe dementia at the conference, no one else ever said that the sick family member was moved to another city to live alone — and even if that’s what the family member had wanted, it wouldn’t have happened because it wouldn’t have been safe.
As my siblings and I allowed ourselves to question how things were handled, we realized our dad’s declining health had been handled horribly. We wondered if there was any chance he might still be alive. And if he was, we wanted to be there for him at the end. He’d been alone for years; he deserved to be surrounded by family at the very end, even if he didn’t know who we were.
If he was alive, we figured he’d probably be living on the streets. But how would we find him? Posters? Flyers? Ads in the newspaper? Calling homeless shelters? We were committed to finding either where our dad was buried or being there for him at the end. If at all possible, we were going to finally say goodbye.
To our shock, it only took a few days to not only determine he was still alive and locate where he was living but to also receive a message from him.
Dad texted us a selfie of himself sitting on his couch. He had less hair and more wrinkles but it was it him. We excitedly, hesitantly responded by calling. “Hi sweetie!” he answered. His voice was exactly as I’d remembered. As he talked, his mannerisms were exactly as I’d remembered, too. But I wasn’t the only one who could remember.
Dad asked us questions, including if we were the same height. He remembered each of our exact height. He remembered so many little details. He remembered us. Our dad remembered us.
As we started to get caught up over the next couple of weeks, we found out Dad was dating the same woman for a decade. That he lived in the same apartment building as when we first helped him move out. That he’d worked for the same company for years and had even been promoted several times.
Listening to him talk hurt. It hurt to think of all the years we’d lost. It hurt to look at his face for long because his wrinkles felt like reminders of all the time we’d lost together, so I’d try to look away as much as I could.
Dad told us about how he’d known Mom was saying he’d been diagnosed with a degenerative brain disorder. And how it wasn’t true.
My heart broke imagining what it must have been like to have his entire community, including his children, told he were dying. To have everyone told he was going to become violent. To have everyone told he wanted to live separately from his family, from his kids. And to know that no one would believe him because if he said he wasn’t sick, they’d say that was a symptom.
How horrible to know that no one would believe him because no one expects that someone would ever lie about something as serious as a family member being diagnosed with a terminal illness.
My siblings and I grieved our dad for over a decade, for no reason. All of that pain was the result of a lie. He was never sick. He didn’t need to move out. He didn’t want to be separated from his kids. He didn’t need to miss all the wonderfully ordinary things that fill up a decade of life. My dad didn’t need to miss my wedding.
It’s been a wild, horrible, bizarre journey. One that would better fit in a book than a blog post. It’s a journey that will always impact me. At 17 I felt the massive riff between me and my peers who hadn’t lost a parent. And now I feel an even bigger riff between me and everyone else. My dad was technically never even sick but I grieved his passing for years. When I find out someone I know lost a parent when they were young, I want to say I know how much it hurts because I’m a part of that club, too. But I’m not, not officially. Not anymore. Even though there’s still so much grief.
The more the reality has set in, the more I’ve swung between happiness, grief, and rage. The more I’ve felt physically sick. The more it’s felt like I entered the Twilight Zone. But as I continue to process, I can also feel myself healing.
In closing, I’d like to personally thank everyone over the years who supported my family. Your compassion was blatantly exploited. Your gifts, however, weren’t wasted. Life wasn’t kind to my siblings and me as we were growing up. Your gifts added light. Thank you for your love, support, and generosity.
I’ll never understand any of this. Why on earth my mother would lie that her husband was dying of a rare degenerative brain disorder. Or how my own mother could watch her children grieving the loss of their dad for over a decade, when it wasn’t even true. It’s the most baffling mystery of my life and the most painful thing anyone has ever put me through. I’ll never know her motives but it certainly feels like the most evil practical joke imaginable.
I’m thankful for those of you who helped make that nightmare a little more bearable.
All my love,