A journey of heartbreak: Me, my dad and dementia

Sometimes I just sit and stare at my dad.

He's in his usual spot on the couch. His hair grey, like it's been for decades. He wears a shirt that has a pocket on his chest – his trademark wardrobe for as long as I can remember.

If he looks my way, I smile. Sometimes he smiles back.

Other times he just stares off in his world. My heart breaks.

Yes, he's my dad, but not like he was before.

My dad has dementia. It seems like we lose another part of him with each passing week. Sometimes each day.

Dementia. Alzheimer's. It's all so very cruel.

Before dementia entered our family's life, I didn't truly comprehend this disease. Even now, after navigating it for a couple of years, I still don't.

I know why it happens, but my heart will never be able to wrap itself around why it has to.

Here are people like my dad, in their golden years, and their lives are stripped of memories, reasoning, and basic abilities.

You hear the words dementia and Alzheimer's and your mind automatically goes to the time your loved one will forget who you are. Many times

A favourite photo from many years ago of me and my dad.

my dad has asked my mom, “Do we have children?”

For now, he knows who I am when I'm around. “Hello Tina,” he says when I visit.

I'm bracing myself for the first time he asks, “Who are you?”

But dementia is so much more than the day my dad will forget me.

He's very confused. He's forgetting how to do simple tasks. He's living through sadness, anger, paranoia, delusions.

Some things he says are very inappropriate, but he can't help it. I know my ‘old dad' would be mortified if he understood the things he says, especially to my mom.

His questions are sad. “Is my mother still alive?” he asks.

We used to tell him, “No, she died.” My mom found it hard to lie.

My grandmere Regina passed away in December 2009. She had Alzheimer's. For the last years of her life she didn't know who I was.

We don't tell my dad anymore his mother is not alive, because it was constantly breaking his heart. To my dad, he was hearing the news for the first time. We've learned the value of therapeutic fibs.

If dad asks, “Can we visit my mother today?” we simply tell him, “She's not home.”

It's not a lie. Most importantly, it doesn't make him cry.

It's hard to watch how dementia changes a person.

My parents went to the Yarmouth Mariners' season opener last Friday night. Dad wanted to leave after the second period even though the score was 3-3. The game eventually went into overtime and a shoot-out victory for the Mariners. Dad loved hockey games like that in the past. Now they mean nothing to him.

My husband Greg and I are building a cottage in Pinkney's Point. Years ago, my dad would have been there every day, hammer in hand, helping out. He would have been so eager and excited about what we are doing. But our cottage project also means nothing to him. It's another loss I feel.

Last month my dad asked my 25-year-old son Jacob, “So, how do you know Greg?” He didn't remember Greg is Jacob's father. We know to expect questions like this. Still, they're shocking.

I'm sad we have to plan, plot, and yes, lie, to get my mother out of the house for an hour or two with me so dad isn't angry or upset while she's gone. My son Justin stays with him. After all, caregivers need a break – even when they're your wife.

I'm sad when my dad sits in his spot on the couch, his head slouched, eyes on the floor – a shell of the man who I can never repay for all he's done for me in my life.

During one recent visit, I asked dad if he wanted a glass of water. “That would be nice,” he said. I got him one, and then another.

“You're very nice,” he told me as if I had just done the most spectacular thing for him. “You're so nice,” he repeated.

Perhaps when he forgets I'm his daughter, he'll still remember that I'm nice.

One can only hope.