Lost and Found: Transformation of the Spirit in Endstage Dementia.


Families facing the end-stage dementia of a loved one actually experience two deaths; first the existential death of the person they knew, due to changes in personality, and ability to do the things that defined their lives, and the eventual inability to recognize their loved ones. The second death is the physical one, perhaps after years of gradual decline.

Letting go of the person you once knew is not easy. That includes the loss of companionship and meaningful sharing. Embracing the new changes can be even harder, when evidenced by behavior changes, resistance to grooming and disappearing short term memory.   But in the case of my mother, changes have also also transformative, almost a birth or rebirth of her spirit.  In turn, our relationship has been transformed.


For many years prior, My mother was always the first to declare, “If I ever get Alzheimer’s, just take me out and shoot me!” The fear of  dementia — of losing control and losing herself — was terrifying for someone who kept a highly structured routine.  But the downward slide into this insidious disease has also revealed a blessing of letting go of her self-imposed restrictions and embrace a new life.

She learned to be silly  and no longer censuring her opinions or worrying about how she would be perceived by others.

No longer fretting about her weight , she is happily relishing her desserts and chocolate snacks without apology.

No longer obsessed with her external image matching the preferences of her husband by wearing the right clothes or best jewelry, she is now reveling in her joy of putting on cheap plastic daisy earrings because, in her heart, she has always been a wildflower girl.

No longer fretting that I am unmarried, a status of great concern.  Her frequent inquiry,  “Can’t you find a good man?” has been replaced with “How is that sweet dog of yours?”

No longer worrying about housekeeping, she can sit for hours  simply watching desert animals outside her window or enjoying her favorites TV westerns.

She has lost her tendency to judge and worry and replaced it by accepting and even embracing what is.

She is now complimentary of everyone and everything, appreciative of even the smallest gestures.

When the caregivers tell me how sweet she is and I quickly retort, ”This is not the mother I grew up with!”

Do I still need to hold onto that past?

This emerging way of being has resulted in my own barriers falling away, allowing for compassion, forgiveness, and love that I had not expected to feel.

We are both being transformed.

So now I reflect:

Nearing the end of her life, has she actually found the authentic life she had previously denied herself, unencumbered by external forces or the need to please?

I have lost the mother I knew, but gained a mother whose spirit is shining through with simple joy.

In letting go, losing her old self, has she finally found her true self

or have I finally found her?