II. The Truth is Unstable

Below are the ten-minute diary entries of one caregiver to a partner with frontotemporal degeneration variant lvPPA (primary progressive aphasia) and early-onset Alzheimer's disease. It may not read like a typical diary, but contains poetic and/or philosophical ramblings of the lived experience from day to day.😍

The views posted here are those of one caregiver and should not be generalized to every caregiver's experience. However, you might find that it rhymes with your experience. Or you might be a curious observer of the experience, since all of us will be asked to care for someone or be cared for by someone at some point in our lives.

Regardless, dear Reader, you are welcome here. May some of this be a balm for you. And, despite the warnings of those who have traveled the depths of the underworld previously, do not abandon all hope. 💗

Let me be clear: If you haven't trained before the descent, you will tumble.

You will fall. You might not be able to climb out of the underworld. And instead of a modicum of choice, there will be none.

Beware of embodying identities too early if you haven't done the work. All the dragons you refused to wrestle before now will multiply, and you will be forced to face them on this journey. The mirror cracked.

There is much discussion about how caring for people suffering from dementia is like raising a toddler again. There is no comparison to child-rearing. Don't try. Don't infantilize the treacherous journey. The dementia riddled person is not a child, and the caregiver is not raising a child to grow up into our world. There is a chasm of difference.

In child-rearing, there is a transformation, like a chrysalis into a beautiful, winged creature. Joy of creation. The descent into caregiving is guiding a human with a devolving brain to the land of the dead. It requires fortitude, courage, and unflinching resolve in the face of multiple dangers. It is a backward spiral, quicksand gobbling competence.

Are you ready?