My uncle wrote a lovely poem about his wife when he was her caregiver (she had Alzheimer's and has since passed away).
Living with a person who has dementia
Is like dealing with someone in absentia.
She is not the girl you used to know;
Not the same personality - oh no!
You remember traits that attracted you to her,
And wonder how they disappeared for sure;
The smile – the brightness – that were her trademark
What happened to dispel that spark?
What caused the memory of years to be erased
Where her mind once had them placed?
Your life together is suddenly askew,
And changes abound in what you do.
The days you shared in plans and active living
Soon evolve into constant care-giving.
Empathy for your wife is surely felt,
But you have to play the hand you are dealt!
It seems implausible that people she once knew
To her now seem like people “out of the blue!”
There are pieces of the past that she remembers;
Strange how she will or won’t know family members.
There seems to be a wall-blocking comprehension,
Try as hard as you might to get her attention!
Health, nutrition, scrapbooks used to occupy her hours,
As well as pleasure with music, books, and flowers.
The agenda she once had is now long done
As the hours of inactivity go on and on.
If there is no agenda, then there is no way
She can project any interest for the next day.
Moods are unpredictable – ever a surprise
As for the reason, you can only fantasize.
Contrary, cantankerous, combative are words that portray
The moods we experience in a given day.
But then there are times when things are normal
And behavior is acceptable and formal.
Oddly, it seems that in some strange way
Her mind is still working on projects of another day.
Disconnected bits come out in conversation
Defying our best attempts at clarification.
Language can run the gamut from wise to profane
To match some actions that are truly inane.
Things in our home have their allotted spaces;
You soon learn they’ve been moved to other places!
About papers – she’ll roll them, fold them, bind them;
If they are really important, try to find them!
How often we’ve heard “I know what I am doing”
When it is an impossible idea she is pursuing.
She is still strong-willed – solid as Gibraltar;
She’ll stick to her guns; she will not falter!
All of which tells you we don’t know what to expect next –
We know, however, that we may be perplexed.
I’ve not done this realistic picture of Jane out of self pity,
Nor would I mean to disparage her with this ditty.
One obvious result is an unrelenting test
For the care-givers to do their best!
The challenge is: with patience and dedication
To show compassion in the midst of frustration.
In the surrealistic world of caregiving,
There are illogical aspects of everyday living.
Each day is different – and yet each day is the same.
We try to do our duty without rancor or blame.
Psychiatrists can describe dementia to the letter
Believe me, “living it” describes it better.
I’ve told you in detail how Jane’s illness affects me
Let me now say where the emphasis should be
The cruel blow suffered by Jane, who knows something is wrong
As she languishes through days that are puzzling and long:
The heartbreak embodied in her plaintive pleas
As she questions, “What ever happened to me?”
The question “Where are the kids?” she asks now and then;
Having to be told again that they are now men;
The irony in her insistence on “wanting to go home”
While she is reminded that she designed our Dome-home!
We ponder the mystery of why this illness should occur
To someone as good and loving and generous as her;
To someone who was ready at all times in her life
To aid others who needed help in times of strife.
And, of course, “Why?” is the question we all ask;
To answer that is an unexplainable task.
I suppose we’ll have heavenly erudition
To begin to explain this human condition.
So – until we all reach those dominions sublime
We’ll keep on praying and live one day at a time!
Written by Frank Benoit, Yakima, Washington, 2005
His wife, Jane, has since passed away.