Dementia Has No Soul
There is no before. No after.
Only now. Only loss unfolding.
Once, there were lives.
Now, only fragments remain.
The father is the father no more,
yet still he is.
The mother is the mother no more,
yet still she is.
The husband no longer knows the wife’s face.
He believes her to be the mother.
The father sees his wife—
but it is the daughter instead.
The wife is not who she once was.
The mother sees a lover—
but it is the son who stands before her.
The mother sees a stranger—
but the daughter is the one standing there.
Roles dissolve, identities blur.
Recognition slips through time’s fingers—
What was once familiar is now uncertain.
What was once certain—
is gone.
The besieged, the person—
they lose their authority, dignity, privacy, memory.
They lose everything they hold and value.
Overtaken.
Surrounded.
Consumed.
Some make it to the very end—
themselves, every step of the way.
Others lose themselves, more and more—
every step of the way.
Most don’t remember what they’ve lost.
Only that they have lost.
Are losing.
Yet do not know—
They do not know why.
And some—
some change to the reverse of who they used to be.
Angry. Bewildered. A corruption of themselves.
Afraid, but cannot express it.
Lost, but cannot accept it.
Derailed—
but trust blindly that they are on the track.
In denial, completely—never seeing, never suspecting.
It is a miscarriage of self.
Dementia, that disease that is not a disease,
A manifestation of diseases, singular and plural,
Variations, but the same at the root:
Brain damage.
It thrashes—rewires, misfires, warps what is known into something unrecognizable.
Memories fracture, faces melt into strangers, truths scatter like shattered glass.
It does not whisper—it demands, replacing certainty with chaos.
It does not steal—it devours.
It does not walk—it runs and leaps.
It does not whisper—it shouts—
Leaving behind only echoes no one fully recognizes.
Dualities that destroy many lives at once.
The caregivers:
They are the ones who take command.
The ones who hold the ground.
The ones who suffer alongside,
For as long as they are able.
They are known by many names—
The ones who care, the ones who love.
The nurses, the cooks, the cleaners.
The parents, or the ones who deny.
The hated ones, or the accused,
The strangers.
Every day is the same day for them.
Every night, the same worries.
The accidents, the falls, the wanderings,
The fears, the screams, the pains,
The phantasms.
Sleep comes in fragments, if at all.
They wake at the imagined scream before it happens.
Shocked into motion—only to find silence. False alarms. False hope.
They close their eyes.
Another sound. The next panic. The next fear.
The body never fully rests.
Their concentration—always heightened,
Yet also numbed by fears.
Always fearful of every loud sound.
And every quiet sound too.
Paranoid ears listen closely,
The known, the unknown, the familiar,
and the dreaded, the too quiet, the too loud sounds,
The nerve-racking ones.
The bone-chilling ones.
The heart-stopping ones.
They believe patience will be enough.
They believe love will be enough.
It isn’t.
The small cracks form first.
Missteps, forgotten pills, frustration swallowed whole.
Then come the fractures—nights of unanswered questions, screams, wandering feet.
And then, there is no control. No stopping it.
Only adapting. Only surviving.
In the early days of caregiving—
Those innocent beginning days—
They walk in,
More confident than not.
Knowing enough, they feel.
Feeling capable, in their earnest heart.
They find they are not.
Not in knowledge or capability.
Not in strength.
Not in durability.
They learn the hard lessons over time.
They fail as often as they succeed.
They prevail over great adversity—
And founder over the simplest of tasks.
They learn their way step by painful step,
Reaching the plateaus, only to see more to reach,
Stepping over their own lines drawn in the sand,
One step beyond that point they thought they would never go,
Beyond what they feel they can endure.
But they do endure, until they are fully broken.
They are never who they used to be.
Or who they seek to be.
Or who they think they can be.
They are forever changed, irreversibly.
The burden. Their loved one.
Their family. Their friend.
Their past—which is so very present.
Mother, father, sister, brother, husband, wife.
Family—by blood, by marriage, or by proxy.
Adoption too—even if it is a friend.
Dualities that destroy many lives at once.
Dementia, it takes, and takes, and never gives—
except for the silent pains we hold inside.
Until, inevitably, at last, we cannot reign them in,
And loudly curse the world and our own lives.
There are no happy songs about dementia.
And if there are—
no one can hear them.
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