“Butterfly & Thistle” copyright © 1998 Sarah Smith Bailey, all rights reserved.

When hard gets harder still, the journey of dementia my mother’s on circles like a spiral and all we can do is follow her and be present with her.

I wondered how it would feel when she no longer knew who I was. This is how it feels: neutral. It just doesn’t matter. All that matters is showing up for her and trying to decrease her suffering as much as possible.

I’ve been around the elderly my whole life. I’ve worked with dementia patients and loved them dearly. I thought that if anyone was prepared for what could happen to a family member suffering from dementia that would be me. Not so. Wasn’t ready for this situation that creates grief, deep sadness, and skirts one around the edges of depression. For those who are direct caregivers, losing their grip at that edge is of serious concern.

Days ago, locked in grief, the lyrics “could we start again, please?” kept running through my mind. I could not remember where they came from. Today I remembered. They’re from “Jesus Christ Superstar,” the song Mary Magdalene sings when his arrest and crucifixion are upon them.  I want to start again, please. I want a do-over. I want to take a Mulligan, travel back in time and prepare her for what’s to come. Prepare her and us for what’s to come.

copyright © 2013 Sarah Elizabeth Malinak, all rights reserved.

But I don’t think it would have made a difference if we could have seen it coming. Dementia isn’t a personality thing. It is a mental illness and, no matter how well prepared, it takes what it takes from the brain and if the mental and emotional resources go missing to help a person cope with what hurts, they’ve just gone missing. And there is no getting it back and no substitute. There is no sublimation process when the memory of how to cope goes missing.

With many diseases the hard gets harder still. The heartbreak of Alzheimer’s and any other dementia is that at some point the patient can no longer process his or her experience in words; which means we can’t be certain we can make a difference for her.

copyright © 2013 Sarah Elizabeth Malinak, all rights reserved.

So we show up, are present, and do the best we can even when our best falls so far short and we pray, pray, pray that on some level she knows she is loved. That she is love itself. And that God has God’s arms wrapped around her now and, some fine day, will catch her on the other side. It’ll be like taking a breath, opening her eyes, and there she’ll be, loved and cherished beyond comprehension – the place in which she has always existed but then will know it face-to-face and heart-to-beating heart.

For now we add our own arms and hearts of strength and compassion, offering our own suffering up as a prayer to ease her pain. Breathing in and out while trusting that the arms of God surround and support us too.

copyright © 2012 Sarah Elizabeth Malinak, all rights reserved.