Dementia and Alzheimer’s

I’m sharing a poem today. It was written by Bob Hicok.

I came across it days before my support group met. (I facilitate a support group for caregivers of loved ones with dementia.) Beautiful, resilient people in our group.

Researchers have found that caregiving can be dangerous to your health, according to Pauline Boss PhD. That means caregiving becomes a public health issue.

Okaaaay. That does not slow people in my group down. They tend their loved ones anyway.

Just so we are on the same page: Dementia is a condition of the brain that leads to the loss of remembering, thinking, reasoning and judgment. Gradually, even the simple tasks of daily living like dressing, feeding, and toileting require help.

Tough job. This is when you go the extra mile and love beyond what you thought you could love. You give attention, the purest form of generosity. The giver gets down to the bone of things and she/he himself is often changed.

Dementia means there will be ambiguous losses. Comments I hear: “She is there in front of you, but it can’t ever be like it use to be.” “My loss has no closure.” “She is gone, but not gone.”

And it’s that ambiguity that’s stressful.

Both perceptions are real: she is gone, she is not gone. The most helpful thing seems to be accepting the lack of closure as being okay.

The door may always be half-open.

Dementia is a group of symptoms that result from other diseases or conditions. According to Dr. Boss in Loving Someone Who Has Dementia, the most common of these diseases is Alzheimer’s, a fatal disease that accounts for over half of all cases of dementia.

Okaaaay. That’s a big pill to swallow.

It definitely affects you, too. A bit of advice: If you are a caregiver, don’t take this journey alone. Enlist a friend, a cousin, a buddy, someone who is on a similar journey facing a similar loss to take the journey with you. Talk and listen to each other and do helping behaviors.

You, the caregiver, may be walking in a fog where it’s hard to see and hear. There is a helpless feeling and even hopeless at times. Find someone to talk with, so you can keep moving forward.

My mother was in a nursing facility for 12 years. I walked in the fog while I worked on changing my thinking. Changing my thinking helped me lower my stress.

After the first year, I counted on God being in total charge. Not me. I constantly talked with my husband, and my one goal became to make sure my mother knew I loved her. We became okay with the door staying half-open.

I found a metaphor for myself: a willow tree. I did what a willow tree does: limbs bending, swaying, flexible, bouncing back, resilient. And that was when I began working on poems regarding my mother. Writing became my therapy and my way of getting through fog. After Mother had died, I published Lights and Shadows in a Nursing Home in hopes it would help other caregivers to look for the light.

The upside to my mother’s illness: Jesus, love, and honor were always in the room with us.

Now, at last, the poem that started my writing this piece:

ALZHEIMER’S by Bob Hicok

Chairs move by themselves, and books.

Grandchildren visit, stand

new and nameless, their faces’ puzzles,

missing pieces.She’s like a fish

in deep ocean, its body made of light.

She floats through rooms, through

my eyes, an old woman bereft

of chronicle, the parable of her life.

And though she’s almost a child

there’s still blood between us:

I passed through her to arrive.

So I protect her from knives,

stairs, from the street that calls

as rivers do, a summons to walk away,

to follow. And dress her,

demonstrate how buttons work,

when she sometimes looks up

and says my name, the sound arriving

like the trill of a bird so rare

it’s rumored no longer to exist.

May God bless you caregivers. I encourage you to become willow trees. A special blessing on the precious ones with the dementia disease,

Pat Durmon

P.S. Thank you for SHARING this post and helping me get the word out. So many need to know it’s going to be okaaaaay. Comments, below the photo.

Photo of a valley with fog near Boxley, Arkansas, taken by Ryan Stokes, 2010.