A friend whose wife died from Alzheimer’s disease said, “Living with dementia is like having a perpetual funeral. Every day brings another loss until nothing remains but grief.”
I can relate to the feeling! Dementia diseases gradually strip away memories, ideas, decisions, mobility, initiative, bodily control, recognition of family and friends, and finally breath itself. Each loss triggers grief and the one you miss is sitting beside you. We lose them a brain cell at a time!
Of course, it isn’t just dementia that strips life from us. Everything passes away—our looks, our intellect, our abilities, our energy, our mobility, our health, our independence, our cherished relationships, our productivity, and finally life itself.
Is there anything that survives through all the losses? Is there a constant which holds us together amid perpetual change, persistent loss, and death’s finality? Or is grief all we have left?
Living and working among people with dementia has confirmed for me that one reality not only endures but actually thrives amid loss of cognitive and physical functioning. Dementia erases memories, strips away knowledge, garbles or mutes language, diminishes abilities, narrows relationships.
But this remains: L O V E
The Apostle Paul declared it more than twenty centuries ago: “Love never ends. But as for prophecies, they will come to an end; as for tongues, they will cease; as for knowledge, it will come to an end”(1Corinthians 13:8).
Love is not sentimentalism or warm fuzzy feelings. It is entering the messiness, anguish, resistance, and hostility of the beloved with a non-anxious, gentle presence. It is action on behalf of the wellbeing of the other. Love is radical acceptance when behaviors feel unacceptable; compassion without expectations; continuing to care when the caring is not returned.
The expressions of love change, but the reality endures. I have known scores of people with one or more of the dementia diseases. I have yet to meet one who did not respond to being loved, even those in a comatose state. And even when the ability to express love is gone, love is generated with those who enter the person’s story.
Linda no longer comprehends the word “love.” Yet, she expresses and responds to love! Language now fails her; but gentle touch, brushing her hair, a smile assures her of value and worth. She can no longer feed herself, so slowly placing food in her mouth becomes a sacrament of love. Mobility is gone! Turning her in the bed or smoothly transporting her to a recliner become means of bearing her in the arms of compassion.
She no longer has control of bodily functions. Washing her and keeping her clean is an exercise in love’s humility and servanthood. Her filters are gone and emotional control is lost. Being with her, absorbing her anger and frustration with non-anxious presence enfolds her in unconditional love.
The love is reciprocal. Linda’s expressions of love are rarely verbal. Occasionally, she will say “thank you” to a service rendered. But her more typical expressions of love are these: a fleeting smile, reach for my hand, raising of an eyebrow, look of recognition in her eyes, calling my name or that of our daughters, growing calm with a caress of her face.
Love endures because love is God! The Scriptures clearly declare: “Beloved, let us love one another, because love is from God; everyone who loves is born of God and knows God. Whoever does not love does not know God, for God is love.” (1 John 4:7).
Love is that which is ultimate and the most permanent reality in the universe! Everything else may pass away. LOVE is as permanent as God for God is Love!
So beautifully said….. Love is the breath of God which gives us and sustains us in life.
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Beautifully written..obviously, with love.
Thank you for sharing! We continue to keep Linda, you and your family in our prayers!
Bob & Barbara Paulson
Eloquently shared. Needed to hear this message and so do others. A beautiful way to see love in the painful day to day of caring for those you love who are or have slipped beyond expressing it as we knew all the days before. Thank you.
Thank you Ken.
Beautifully said, Ken.
Thanks for the insightful thoughts born of experience, passed along by our mutual friend and my exceptional pastor Grace I. My wife and I are on a similar journey to Linda and you – a few steps behind. Still able to care for Nancy at home. God bless us all!
Thank you for writing. Praying and sending love to you and Linda and your daughters.
May the grace of our loving heavenly God be with you and all who practice the sacraments of lovingly caring for people who are suffering diseases of dementia.
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Thank you, Brad!