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.
One, two, three, four, five, six, seven, (the resident says their name) is going to heaven. And when he gets there he will say, “My loving sweetheart is on her way.”
The resident says this little poem several times a day. He is a military veteran who lost a leg in Viet Nam. He has faced many physical challenges in his life. Now, he struggles with dementia.
However, this resident comes at life with a positive attitude. He may be confused in much of his thinking, but he always is looking for ways to bring a smile to someone else. He jokes, encourages, and has accepted the hard truth that he will only leave this facility when he goes to heaven. He is very confident and assured this is his destiny.
This resident loves for me to play classic Christian hymns on my iPad. He knows the words by heart (where they are stored and cherished as treasure). He loves to get a hug or a backrub. He always has kind words for me. My official title is life enrichment assistant but with this resident I am often the receiver of enrichment rather than the provider.
The resident and I talk often about things of faith and the future. Even though his memories of the past are stronger than the memories of five minutes ago he would rather focus on joy to be found in the current moment rather than remain in his past except for when that past can be a spiritual tool for the present time.
I am thankful for the spiritual direction I can provide but even more thankful for the spiritual direction I receive from this man of faith and courage.
Early in the morning the sun begins it rise
as the land slowly begins to awake
I once again sit to contemplate
The path that I may take
One will lead down the road
that the self would chose to go
The the leads to the place
that God wants me to know
It should not be so hard to decide
the direction that I should travel
For one path leads me to find peace
while the other one peace unravel
This issue causing the inward struggle
is the deceptive voice that claims
I need to try the self chosen road
so I can play its ancient games
The voice cries out what fun I would have
all the pleasures and treasures I would find
But deep down I know much better
than to listen to his kind
Too many take the way the voice
incites those of the world to choose
without the insight or understanding
of what all they have to lose
So I chose the path of God instead
even though it seems rocky and steep
For I know if I am with my Lord and God
My soul is in God's loving keep.
Working to find a way
to teach them how to pray
In light of the fact
it is so hard to act
The mind is so confused
and they feel so abused
It seems so unfair
for they have so much to share
The pain they cannot forget
the hurt is with them yet
It's not hard to see why
so often they must cry
They try so hard to cope
in the midst of little hope
I hope it is not odd
I want them to talk with God
With the desire to really know
the path that they should go.
The memories are failing
but the smile is clear and bright
The hearing is not as sharp
and more fuzzy is the sight
Still the heart is still full of loving
and the soul is happy and gay
The dreams are not yet fading
as the spirit is still full of play
Yes the years have come and gone
and the body shows the signs of age
but as far as living a happy life
they have just entered a different stage
So do not write off this vibrant soul
or think that they are close to gone
For you would be more than self-deceived
and you would certainly be wrong
The Lord gives and takes away
yet blessed by the Lord's name
As living each and every day
allows us to act the same.
Today was a difficult day. Many of the residents were not in good health. Two of them had bad falls. One, whom is very helpful and full of life and activity in spite of her dementia was have a difficult time staying awake. We have a staff member I do not trust whom some of the residents seem afraid. I fear why. So, I set and observed some of the residents I was caring for and they inspired these poems.
Sitting at the table
playing with a deck of cards
Not cards to him
What stories do these cards tell
I cannot know
His mind goes places in the past
Beyond the grasp of dementia
The cards only have meaning to him
Once a bright and brilliant man
now confined by a mental barrier
He did not expect
But does now accept
with a graciousness of charity
ingrained in a life of faith
trust and assurance
And now the cards tell stories
only he can understand
What a good and sweet
There is another resident. A woman, no two women, who walk. This is their poem.
Walking, walking, walking
but where does she go?
Around and around in a circle.
Is she searching?
Is she traveling"
Is she seeking for that
which is now lost?
Walking, walking, walking
back and forth around the room.
If you ask her why
she cannot reply
but onward with determination
Sometimes she cries
sometimes she laughs
always looking forward as she goes.
Walking, walking, walking
through the realm of dementia
As God walks with her.
Please pray for people who are old and have the disability of dementia.
I remember when we met
It seems like yesterday
We set and talked, cried and laughed
I loved all she had to say
We did not go on many dates
I fact it was only one
When I asked her to be my wife
And then the wedding was on
Near eleven months to the day
Our first child arrived
Yet through all the trials and tests
Our love continued to thrive
Then another daughter came
And soon after came the third
As God moved us from place to place
Our love was still assured
The empty nest was not a strain
But the conflicts in churches hurt
And even in the face of this evil
Our love we would not desert
But in my life there came a time
When the darkness got to me
And I almost left because of pain
To end my life foolishly
While I lay lost to the world
This sweet love of mine did pray
That God would not let this end
In such a horrible way
I know not why I did not die
Except for her fervent prayer
Filled with her love and faithfulness
And never ending care
So today we are again quite poor
And struggle to make ends meet
But we are rich in our love
And once again life is sweet
If regret were a color
What color would it be
What range of the rainbow
Would our eyes see
If regret were clothing
What texture would I feel
Would I find its touch
Making it more real
If regret could be molded
I wonder what it could make
What shape would it fit in
What form would it take
If regret was like money
What could it buy
Would it purchase luxury
Or in poverty lie
If regret was a building
A place where we would live
Would it have light and hope
Or be dark and negative
Regret is such a strange thing
It is so difficult to know
If it is for our pain
Or a thing to help us grow