Into the Darkness of Dementia


What follows comes from the beginning of a homily I offered in the memorial service for a friend who went through years of Alzheimer’s Disease before dying. After the service, a man who works with a local Alzheimer’s group asked if he could share it with people in that context, and so I’m taking his word that it might prove helpful to someone who knows how it feels to have a loved one or friend go into that darkness.

From the homily:

Sometimes I say at the outset of the homily for a service such as this that, before saying anything further, we need to acknowledge to God, ourselves and each other that this day hurts and is grievous. Sarah has died at the end of a very long stretch of time that hurt and was grievous. Alzheimer’s Disease is crueler and more terrible than death because it extends death, tormenting family and friends with life that is not truly life and presence that is profoundly absent right before our eyes. We can touch but not reach and speak but not be truly heard. So, let there be no guilt in feeling relief that now Sarah has died and will not be dying anymore. The Sarah we knew and loved has been gone from us for too long. We could still care, but she could not know we cared. Now, she is released from her bondage to that horrible disease, and so are you. You have been grieving; now you are free to grieve losing her without the cruel irony of seeing her there but not there, before your eyes.

When my own mother was lost in dementia, seven-and-a-half years in the [local nursing home], I often thought, as I rode up the elevator to see her, of the words from Psalm 139 I read a few minutes ago.

Where can I go from your spirit?
Or where can I flee from your presence?
. . .
If I say, “Surely the darkness shall cover me,
and the light around me become night,”
even the darkness is not dark to you;
the night is as bright as the day.

I remember telling God silently, “I am holding you to that. I can’t reach her, and she herself cannot reach and grasp what her own mind still holds but with its connections broken. But you who can see through the deepest darkness, stay with her, hold on to her, and keep her until you have her in your care alone and can restore what has been taken from her, heal her, and make her whole. I hold you to that.” More than a few times, I said the same to God as I stood or sat with Sarah, present with me but frustratingly and grievously not so.

But we are not here together today only to mourn or even just to say it is okay and fitting to let relief mix with sorrow and loss now that the long struggle is over. We are here also to give thanks to God for giving Sarah to us, for sharing her with us. The apostle Paul counsels us to “hold on to all that is good.” We cannot control or arrange all the events of our lives. We cannot make any human relationship all good, all positive. We are real people, and sometimes we hurt the very ones we love most. But we can choose what we take from life, dwell on in our thoughts, and hold in our hearts. Hold on to all that is good, keep close to you all that came from love or friendship, which is also a kind of love. Remember the wife, the mother, the sister, the friend, and let your memories of Sarah bring a smile to your face even if they also bring a tear to your eye.

For me, Sarah was friend, co-worker, and confidant . . . .