Waiting can be a strain When the time is not for sure
And like a long slow moving train Its passing we must endure
So I sit and wonder fidgeting
And wish things were more clear
My confusion has no limits
Filling my soul with every fear
Is there no one to help me
In this time of deepest woe
Or must I live with this pain
That I reap but did not sow?
The above poem reflects the way many people with dementia feel. Most of the literature currently available encourages a person to lie (pretend that whatever reality the person with dementia believes, go along with it). I understand that this is an attempted to create a “contented dementia” state of being. It is done so that the person with a dementia disability does not have to face what the disability is doing to them. It is intended to alleviate suffering.
I am taking a different approach. I explain to the person what it is that is happening to them. I embrace their suffering with them. I let them know that their suffering is real. I have not had any of the individuals I work with have a “red blank” from this approach. Most thank me.
People with dementia still have spiritual lives. Their spiritual life is deeper than their memories or lack of memory. It touches their soul. This part of their being understands suffering. By being honest (not forcing my reality on them, but explaining theirs) honors and respects their still being a person and not just a child to be pacified and patronized. Their suffering has meaning. God knows how they suffer and I firmly believe God suffers with them. Beyond suffering there is promise, promise of a resurrection where suffering will be no more and what we have lost will be rewarded a hundred fold. Continually talking about this hope seems to be far better than living in a past that cannot be changed and will eventually be confused.