Walking in the Shadows of Dementia

Last week, I shared some personal news with my Presbytery colleagues that relates to an imminent transition for me and my family.

Over two years ago, my beloved husband was diagnosed with Dementia/Alzheimer’s.  Sadly, it has now come to the point that in order to provide for his safety and well-being, I am looking for different living arrangements for us… he will likely wind up in a memory care unit, and I in some smaller apartment.

It’s been an interesting journey… sometimes funny, sometimes crushingly sad, and sometimes simply overwhelming.  At this point, he no longer knows who I am, though he is still willing to trust me with most things.  Many of his unique capabilities and skills are gone.  However, his personality is largely intact:   he is still the funny, sweet, kind, compassionate and jolly old elf that he has always been.  For this I am grateful.

Learning to live with Alzheimer’s is a shadow dance of funny and sad moments, confusion and clarity, deep remembering and” new” discoveries.  I am confident that my Beloved is in God’s good care, and that all will work out well for both of us in God’s larger economy.

This is also an emotional and spiritual journey that is stretching me in many ways.   I am having to learn numerous things (mostly things I’d hoped to postpone indefinitely).  I will likely start another blog to detail my/our journey with Alzheimer’s, but here is the cliff’s notes edition of the journey thus far:

• Patience — Those of you who know me know that I am NOT a patient person and I’m mostly ok with that… but apparently, God is not.  I have to learn to walk, talk, and live at a slower pace and to bear with the many repetitions of the same question.
• Moving from the balcony onto the dance floor:  I am a person who lives on the balcony… I prefer to be somewhat removed from the action so that I can see the big picture and make assessments.  The Dementia Dance has thrown me from the balcony onto the dance floor… I am now awash in the hands-on details of daily life.  I have been pushed out of my theoretical and cerebral comfort zone into the all-to-physical and present dance floor of dementia —  from my head to my hands and heart; from living in the future to living in the moment (if not in the nano-second); and from theory to practice.  I am learning about incarnational mission.
• The shape of hope is changing.  I used to have two kinds of hope:  one eternal and one temporal.  Now,  hope is found more at the intersection of these.  Each day, I pray that a bit of joy, a moment of grace, or a brief experience of shalom will come for both my husband and myself.  Watchful and expectant awareness is required in order to keep from missing God’s provision of this daily bread.  It means adopting a year-round Advent posture, if you will.
• Moral fuzziness… what exactly does the way of the cross look like in this situation?  Many people are encouraging me to preserve myself and my assets so that I can have a future.  But all that seems at odds to the One who said “those who seek to save their lives will lose them.”  I keep hearing the lyrics to “Without Running Away” by Jason Gray in my head.  This is most certainly proving to be a discipleship challenge for me.

And finally, I have a renewed gratitude and appreciation for my friends and colleagues that surround us during this time.  You are God’s very special gifts to us… thank you for being there.  I treasure your prayers.

Psalm 23

The Lord is my shepherd; I shall not want.
He maketh me to lie down in green pastures: he leadeth me beside the still waters.
He restoreth my soul: he leadeth me in the paths of righteousness for his name’s sake.
Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.

Artwork by Frank C. Pape