Fading into the Darkness of Dementia

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Psalm 139 has the potential to speak for many of us our fears and struggles as well as to reassure us of God’s care and compassion.  Like the psalms of lament, distress, and renewed courage, this one speaks in general terms inviting us to plug in our own specific situations.

11 If I say, “Surely the darkness shall cover me, and the light around me become night,” 12 even the darkness is not dark to you; the night is as bright as the day, for darkness is as light to you. (Psalm 139:11-12 NRSV)

Alzheimer’s Disease is a darkness from which there is currently no return in this life, and it is as my wife has called it since it took her own mother from us by degrees, a cruel disease.  The death of someone we love hurts us deeply and permanently because it takes the person away from us, out of our presence, removing the possibility of interaction and intimacy.  Memories may be good, and we are thankful to have them to keep and to share, but they are still a poor substitute for sight, touch, two-way conversation, and shared experiences.  Severe dementia, such as Alzheimer’s, is crueler than death because it takes the person we love or call friend away from us even as that person’s body and voice are still physically with us.  Our grief begins while the person we love is still with us, but not truly with us as the person we have known.

Shared memories are no longer shared, and we hold them alone.  I recall my mother saying to me, “I’m sorry to have to tell you this, Dick, but I really don’t remember your childhood.”  Her dementia was not so severe as that of many others I have known, and she continued to have brief times of true lucidity that were almost startling to me.  One man I would visit in a nursing home kept repeating the same phrase as I sat with him or pushed him in his wheelchair: “I can’t from here.”  What he said was profoundly true, but it was probably just truth by accident, by the coincidental voicing of what may have begun as his frustration but had degenerated into mere repetition without meaning.

It is bitterly cruel whenever death becomes a person’s only apparent savior, and a family’s only deliverance from the terrible tension between loss and presence, so that by death, grief may at last come without the apparent but impotent contradiction of the loved one’s lingering physicality.  The right voice but without memory, recognition, or appropriate response.  The beloved face but now blank, expressionless, or contorted by distress without sense or resolution.

One day as I was riding alone the nursing home’s elevator up to visit my mother, I repeated to myself the two verses of Psalm 139 quoted above.  Then I added, maybe aloud (I don’t know), “God, I’m holding you to that.  Please be with her in this darkness and hold on to her through it to the light beyond the horizon of our sight.”

There are other forms of darkness into which we or people we love go willingly or are taken unwillingly.  Addiction and depression are two, severe mental illness yet another.  Alzheimer’s disease is a great fear of many, many people as they age, and dealing with the cruel condition in loved ones a daily struggle for many as well.  Often the two are linked.  As they care for parents or others being taken away from them a little more each day or each month, people feel the fear growing inside them that they might be looking at their own future and experiencing the future of their children.  We joke about it to relieve but also voice and share our fears.  We look for other people who have been through it and understand.

Not long before she died, my mother said to me, “Well, there’s still God.”  Yes, Ma, there is still God, and you were the one who taught me that God cares, has compassion, desires relationship, and will not give us up.  “Even the darkness is not dark to you,” is not a philosophically apathetic statement of God’s omniscience and omnipresence, as though the psalm were merely reciting the attributes of the divine; it is both an affirmation (however shaky when we make it) and a prayer (however desperate and grief-torn) that God is there where we cannot go or else there with us in a darkness from which we cannot get ourselves back into the light.  There is no darkness into which we can go, be dragged, or just fade into which God will not come with us.  And where God is, there are life and hope.

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