Dementia

An introduction to illness

I always have an internal struggle about talking about my struggles with the disease that eventually took my father’s life. Do I actually want to put this out in the open? Do I actually want people to read this? After that debate rages, then the more important question – how do I write about it? How can I address this still painful subject? How do I dredge up old memories that I would rather not? And why on God’s green earth would I even do it?

I write about it because it’s part of my history, part of my testimony, part of my identity. I continually remind people about it because if part of my story can offer encouragement or hope, I have succeeded with my goal.

First, though, let’s start at the beginning – or maybe at the end.

My father died April 23, 2016, due to complications from dementia. I was seven months pregnant with The Engineer at the time; The Artist was three.

My dad was a rock for my family. He was funny, he loved jokes, and he loved Jesus. Kyle once said, “You remember how Job was tested by God, but his faith was refined? And remember despite how bad it got, Job praised God? I bet God is saying to Satan right now, ‘You see my servant down there? See how he praises Me through all of this? He is a good and faithful man.’”

And that ended up being so true. Even when he was so sick, even when he knew something was wrong and he wasn’t sure what was wrong – he had his faith in God.

Somewhere in the spring of 2012, we noticed something was wrong. We couldn’t pinpoint it, but something was wrong. He was sleepwalking at times. When he would sleepwalk, he wouldn’t know where he was or who was around him. Tests were performed. SO MANY TESTS. Blood tests. Sleep tests. Scans. X-rays. Go to this doctor, see this specialist.

We ended up at a neurologist who practices three hours away from my parents’ house. He diagnosed Dad with Parkinson’s – but a more mental part of Parkinson’s, as Dad didn’t have tremors. So we went with that diagnosis for about a year, but nothing seemed to be getting better. He was tired all the time. He felt bad. “I just feel so tired,” he’d say over and over. His voice was so soft.

Nothing got better. Things only got worse.

We ended up seeing a Parkinson’s specialist, who also worked three hours away from my parents’ home. We went through several diagnoses over a three-year time period, but the last diagnosis ended up being dementia with Lewy bodies and Parkinson’s.

Two years after we noticed something was wrong, we started dealing with more noticeable symptoms: paranoia, lack of judgment, and balance problems. As the disease progressed, it only worsened his motor skills and speaking ability.

Several years ago, a friend of mine asked me why a good God would let her father die, and, in the moment, I couldn’t answer her. Not only did I feel that any platitude I could say would be ineffective, but how could I possibly comfort her during such a loss? Nothing I said would bring her father back. And I refuse to state empty words.

It’s not wrong to question why God allows some things to happen. We’re made to wonder, to have a natural curiosity. When bad things happen to good people, we want answers. The problem is we expect answers.

Sometimes answers don’t come. Can I explain why my friend’s father died? No. Can I explain why my own father died? No.

But I’m not focusing on the why. I focus on the how.

How do I show love to others?

How do I get through this?

How do I display my faith while dealing with this?

How do I give God glory in the bad times as well as the good?

None of these answers come easy. Showing love and affection is probably the easiest one, because I have easy answers for that (cards, phone calls, taking my really cute kid over for visits, etc.). But the others are a little trickier to navigate. These are almost daily questions I ask myself. But I do stand strong on a few facts:

God loves me, and He loves my family. He has not forgotten us.

I didn’t blame God for this illness. I still do not hold any negativity toward God. I don’t understand it, and it still hurts me to the core, but we don’t live in a world with sunshine and roses all the time. We live in a world where bad things happen all the time.

God will sustain me. When my girls slowly learned to walk (and, yes, it was precious), they both were terrified of letting go of my hands. Just like they squeezed my hands as they learned to walk, God still is holding on to me. I’m not alone, and He’s helping me walk.

I see the blessings. Isn’t it crazy to see blessings in the midst of hurricanes? It seems so to me. The wind may be howling, the rain may be pouring, but I can see bright raindrops on spring flowers.

I don’t have all the answers. And that’s ok. I’m going to live abundantly through the storm.