Did you know that roughly three-quarters of patients with Parkinson’s Disease eventually develop some form of dementia? I actually did not know that until recently. My Dad has been living with his Parkinson’s diagnosis for almost seven years. And I’ve been kind of surprised by the course of the disease at each step. He’s never really had the tremors that I associated with famous Parkinson’s patients like Michael J. Fox and Muhammad Ali. He’s mostly dealt with fatigue, stiffening muscles, and a flat facial expression. A couple of years ago, he started having more difficulty finding his words. But over the last six months, he’s just been getting more confused. He still has good days and bad days, but over the last two months it’s become clear that it’s not just confusion. It’s dementia. And walking with him (and my Mom) through my Dad’s dementia has been harder than expected.
For most of his life, Dad’s been a thinker. He’s always interacted with the world around him in highly rational ways. And I’ve appreciated the way his rationality created feelings of safety and security in my childhood home.
Now, however, my Dad’s dementia has got him seeing things that aren’t there. His brain is having a hard time reconciling the fact that “Dave’s wife,” “Eric’s Mom,” and “Jan” are all the same person — so he imagines them as three distinct individuals, and he wonders if he’s falling into some polygamous scheme. He worries that people are trying to take his money or keep him from connecting with “his Jan.” At times, he’s suggested that the H2O Church staff is running interference for me, preventing him from communicating with me. And no matter how much we try to use ration and reason to work the problem, we can’t make any headway because my Dad believes his brain. Even when his brain is failing him. It’s been pretty unsettling for us all.
But I recently remembered an interaction from last summer that brings me reassurance.
Back in June, I noticed that my Dad was getting more confused about the difference between trash and recycling. So I helped sort through a bunch of stuff that had built up in the garage. I collapsed a bunch of boxes. I put everything in its place. Then I got a couple sheets of printer paper and wrote out lists of the most common items in brief, bullet-point fashion. I taped these lists to the tops of the containers. All in the hopes that my Dad could come out into the garage with a box and just put it into the container that included the word “boxes” on the top. Bubble wrap could go into the (trash) container that included the word “bubble wrap” on top. And so on.
I asked my Dad if the system made sense. He seemed unable to speak, but he nodded. And then he sang a couple of bars from an old hymn:
When we all get to heaven,
What a day of rejoicing that will be!
When we all see Jesus,
We’ll sing and shout the victory!”
I feel like crying every time I think about it now.
Dad has been painfully aware of his condition, even on days like the garage cleaning day, when I’d otherwise assume that his mind is in a more muddled place. He must be so frustrated (though I’m actually kind of hopeful that this frustration will fade as he gets deeper into his dementia). Above all else, though, I know that my Dad has given his heart to Jesus. Even if his mind is deteriorating, I believe that his soul is secure. He’s spent a lifetime living by hope and faith. And we’re all going to keep trying to do the same, together.