My Mother Has ALS. Can She Borrow Your Eye Gaze Equipment?

By My Web WritersMom and teenage Jean

Today’s post is a personal one and an excerpt from a speech that I recently gave at Huntington University.  I hope you draw some inspiration from it.   ~Jean

My father delivered some news to me over the phone when I was a senior in college.  Mom was diagnosed with ALS.  Some of you don’t know what that is, but some of you know all too well.  It started with weakness in her limbs.

I had no clue what Lou Gehrig’s disease was, though I’d heard of it.  Looking back, I’m sure my parents wanted to protect me from fully understanding what the diagnosis meant because Dad’s details were sparse.

I headed over to the university’s library to research the disease on microfiche and micro film.  I can still remember the shock of reading, “Decline in the motor neurons…weakening of extremities … eventually the diaphragm stops…mind stays aware… death occurs in most patients from 18 months to 3 years.”  The best prognosis seemed about 5 years, though about 5% of cases could live as many as 20 years. My mother was 59.  I was 22. I started crying in the library. Life had changed.

Tonight, I’d like to honor my mother by attempting to demonstrate how she carried her personal torch through that time period.

Droves of neighbors, relatives, and friends made the pilgrimage to our home to visit my mom that next year.  She greeted each of them and encouraged them that she would beat this disease.  They smiled at her, read Bible verses, gave her hugs, and said they’d pray for her.

I suspect this is when you begin to think you really might die.  Otherwise, none of these people would be visiting all in one year’s time.

It’s a reminder to all of us to visit the people you care about today – and don’t assume tomorrow will give you that opportunity.

Dad always said that Mom could outlive him, but when he passed away the family had a deer in the headlights look.  We thought Mom would go first.  Now what?

She lived by herself in a handicapped accessible home that Dad had built for her before his death.  She wanted to maintain her independence in her own home for as long as possible.

But when it was time to stop driving or to move to a retirement community, she knew it, and as an act of personal responsibility, she didn’t put up a fuss about it.

Mom demonstrated that handicaps, terminal illness, being a widow, and senior citizen status are not barriers to having fun and enjoying life. We’re all terminal.

She started a romance with Peter, a former bank president.  I remember Mom bragging to her older sister that she was now dating a banker.  Mom’s sister smiled and said, “You sure know how to pick ‘em, Joan.”

Mom was quite taken by Peter’s whit and go-getter personality.  He loved jazz and would take Mom out to shows.  I think several ladies had a crush on Peter, but he and Mom became an item. These people were like teenagers again and we kids were like the protective parents.

Mom took several trips with my family.  One time, in Plymouth, we stayed in a home right on the beach, but it had a steep ramp, so we had to go slowly to get her in and out of the home.  Just to say we did it, Mom and I took over an hour, one afternoon, navigating and struggling over a short, rocky path to the shore. 

We eased her into a kayak.  After 11 years with ALS, she was afloat in a bay!

On a different trip to Florida, we hitched a ride in a groundskeeper’s pick-up truck and set up Mom’s walker at the Gulf’s edge.

We met my cousin, Jon, there that day.  He has since passed on.  Don’t let a task that seems too overwhelming or burdensome keep you at home on the couch.  If my Mom could do it, you can do it!  I’m so glad we didn’t skip this moment.

Mom’s mobility decreased through the years and she developed dementia.  She could not remember where we had been or why we had been there on the way home from being bedside during her sister’s passing.

Many relatives and friends never suspected that this frail, little lady would actually outlive them- my Dad, the next door neighbors on one side, the next door neighbors on the other side, members of the church who prayed for her, all of her siblings, several nephews, friends of mine, her high school classmates, friends from the retirement center, and even Peter, who passed suddenly from a heart attack.  She outlived them all!

A few weeks ago, Mom’s RN indicated that it was time for hospice.

Some might choose to stop eating at this stage as a last measure of control, but my mother chooses to chew her food each day, even when she chokes on it. She gathers tears in her eyes when we tell her how much we love her.  It must be difficult not to be able to answer with a voice.  She does have dementia, but in those moments when her thoughts are clear, I think she wants to express herself beyond her sweet gazes.

I’ll confide that I am trying to find someone who would be willing to let us borrow their Eye Gaze equipment.  Maybe it’s sitting in a closet getting no use.  Because my mother is now receiving hospice services, I’m told that Medicare will not cover the costs of this expensive equipment.  My sister, who selflessly cares for our Mother, questions if the dementia will make it too difficult to learn and use the equipment.  But given what we know about Mom, we’d like to give her a shot at trying. If you would take a moment to share this story, maybe we’ll find someone who can give Mom a chance at a voice in her time left here.

UPDATE:  Mom was welcomed into heaven on September 24, 2013.  She was physically unable to swallow for the five days prior to her passing.  She never received approval from the hospice nurse to receive or use the eye gaze equipment, but there’s no doubt that Mom communicated- even at the end through a twitch or by fighting to stay awake.


Filed under Disabled Writers, Leadership, Web Writers

5 responses to “My Mother Has ALS. Can She Borrow Your Eye Gaze Equipment?

  1. Please call the Chicago ALS Association at 312-932-0000
    We can help

    • Thank you so much for this offer, Tony. Les Turner is her organization. I wasn’t aware that there are competing stakeholders on this idea – even within my family. Hopefully, she’ll get a few opportunities to prove that she can still follow directions well enough to use the technology. Thank you for responding so quickly! :) ~Jean

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