All That Remains is Love

Mom copyIn her condolence note, a friend reminded me of my blogs talking about my mother’s dementia and my struggles managing her care and her life.
Reading through my blogs of a year or two ago, I revisit our struggles. How angry she became when she could not keep her dog or her jewelry in assisted living. How sad she became when she repeatedly told me that she wanted to go home, even though she was in the condominium where she had lived for sixteen years.

I revisit how terrible I felt about moving her to the full-care facility. The social worker told me that other residents had been complaining because Mom did certain anti-social things such as lying on the couches of the living room during cocktail hour. Complaints accelerated when she was cursed with horrific gastrointestinal distress. Because her bouts came on so suddenly, she would rush to use the toilet in other residents’ rooms. This was an invasion of privacy that continued for many months until the facility insisted she had to leave.

I hated to put her in that wing where my father had suffered and died. I could barely force myself to walk in there.

We resorted to loving lies. The patient-care specialist instructed me to take Mom out to lunch. During that time, the staff moved her belongings to the new room to make it look familiar. Feeling like Brutus, I brought her back. Mom immediately said, “Why are you taking me here? This is not where I live.” The specialist said, “You are just staying here temporarily. Your room has been flooded with stinky sewer water. It needs to be cleaned up.”

I knew this was the beginning of the end. I was so sad. Yet, I soon realized this was the best place for Mom. Her condition had deteriorated to the point where she needed the constant attention of the full-care aides who were like angels.

Despite all her infirmities, my mother always smiled and expressed her appreciation to the staff and to me. Despite the profound grief of watching my mother slip away, we shared many beautiful moments. When everything is stripped away – home, clothing, activities, even the ability to walk and feed oneself, all that remains is love.

I recall Lori’s Lesson: “Be grateful for every gift.”

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Lucky me

The Patins and I wanted to meet.  They wanted to figure out if I was the one to write Lori’s story.  I knew I admired Lori’s struggle against Parkinson’s, but did I want to spend a year of my life writing about it?

When we first met, Bob very wisely decided that we should not get together on either of our home turfs, but on neutral territory halfway in between St. Louis where I live and Chicago where they live.  He calculated the distance between the two cities and divided it in half.  The closest city to the halfway point was Normal, Illinois, home of Illinois State University.

Between the time that we made the date in Normal and the day we arrived there, my daughter was diagnosed with epilepsy.  I was still reeling from shock. A teacher had contacted us to tell us about staring spells, but then she had a full out grand mal seizure.  What did this mean?  Would she be safe?  How did she live her life with this disease?  How could I help her?  She was at the worst possible age to receive a diagnosis of epilepsy.  She wasn’t a child so that I could manage her care.  She wasn’t an adult who would take a reasoned approach to managing it herself.  She was a teenager, rebellious, pushing the limits.  She kept saying, “I just want to be a normal kid.”  Doing some of the things normal kids do is very, very dangerous for someone with her condition.

And then I met Lori and Bob.  How lovely she is.  How much they care about each other.  How much her struggle mirrors my daughter’s.  How much Bob’s struggles mirror mine.  It was fate that brought us together at this critical time.  Like Lori, I can say from the bottom of my heart that I am a very lucky person within a very unlucky situation.  Her story has enlightened my life.