Backstory

This website came out of more than five years of caring and advocating for my severely limited mother, who was effectively trapped in the nursing home of a Florida for-profit "high-end" continuing care retirement community (CCRC).   I spent, on average, 8 hours a day, every day, with my  mother, in an effort to provide her a higher quality of life.

My mother was the ideal nursing home resident, because she could not initiate communication.  She could not press the call light.  She could not initiate a call for "help."  She could not initiate communications to say she was hungry, in pain, thirsty, cold, wanted to get up, etc.  She was also visually impaired, and legally blind for the last 2 to 3 years of her life.  On the other hand, she could hear (more on this below) and understand, and she could respond in some fashion if cued.   However, this nursing home would not cue her or give her adequate, humane and compassionate attention.  Without my presence they could ignore her with impunity, and they did.

In 2016, while I was living and working in the Pacific NW, I visited my mother and step-father (my father died in 1978 and my mother remarried in 1979)  for my vacation.  This is what I did with all my vacations.  My mother had already been moved to the "Care Center" of her community about 2.5 years earlier.  The move was against her will and she had a psychotic break a couple of days before the move. At the time, I was unaware of how the move came about and why it was not challenged by my siblings who lived closer and visited more often.  Even to this day, I'm not clear what happened, though I do know the CCRC resists having physically challenged people in independent living because the image detracts from new residents buying in to the "predatory scam" (as another resident's daughter referred to it).

My visit and subsequent months in 2016 turned out to be disturbing.  

• I asked a nurse what was going on with my mother's hearing.  She was unaware of any issue.  I pointed out that if I was not in front of my mother, she could not hear me.   My mother's doctor (I'll refer to him as Dr. Doctor) entered the room, crouched 18" in front of my mother and said, "Judy, can you hear me?"  Some test, eh?   I made arrangements to take her to an ENT doctor, who removed at least 1/2 inch of wax from each ear.  My mother could hear fine.  Dr. Doctor later apologized.   Were the staff updated on the situation, so they didn't confuse any prior unresponsiveness with her diminished hearing?  No.

• I noticed my mother had lost a tooth.  I inquired when she had last been seen by a dentist.  Never - not in the 2.5 years she was in the "Care Center."  As soon as I returned to my home, I combed through her records to find the name of a dentist.  One of my brothers took her to see the dentist (turned out he was a periodontist, but her general dentist was two doors down.)  She then was seen by a dentist every 6 months, though she lost 5 teeth due to the neglect of the "care center" for those first 2.5 years.

• My mother was visibly heavier than she had been during my previous visit.  I asked how much weight my mother had gained since entering the nursing home.  Forty-Five pounds!!!  I spoke with their nutritional services manager and she reduced my mother's desserts to nothing but fruit until I arrived a year later.  This is typical.  Instead of a reasonable mix or portion control, this nursing home (as most?) would only implement protocols that were the easiest for them - ignoring the resident's "mental and psycho-social well-being."

• My step-father, as concerned about my mother as anyone, had his own challenges,  Prior to my 2016 visit, he had been moved into the nursing home as well - with congestive heart failure.  He was 97 years old, about ten years older than my mother.   For the less than 1 year he was in nursing care, he too received less than optimal care, though at least he could speak.  My step-brother, upon visiting,  was horrified to find his father so unkempt - long nails, unshaven, etc.

• After returning home to the Pacific NW, I began to put my life in order to move to Florida.  I continued to try to reach my mother by phone each day.  That was not an easy task as I had to reach a nurse to help my mother.   It took about 4 or 5 calls and 40 minutes to reach someone to help.  

• In about August of 2017, my mother began talking about Larry, who she was going to marry.   All my siblings heard about Larry.   Who was Larry?   He was either conjured up due to my mother compensating for loneliness and the intense neglect of staff, or he was a spirit guide.  (His name was never mentioned once I arrived in April 2017.)   You pick.

My step-father died in mid-March 2017.  I arrived three weeks later.   What you will find on the Stories: Personal page are snippets of things we (my mother and I) experienced over the next 5+ years.