Stories: Personal

A nurse (not new) assigned to my mother did not know how to apply eye ointment.  What else did she not know how to do?          

Another time, I arrived to find a nurse had put the eye ointment in the wrong eye.

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I discovered the nurses where only placing 1 eye drop in each of my mother's eyes for her dry eyes.  When I inquired about this, and asked them to use more, they refused, saying one was all that was necessary when putting in eye drops.             

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For many years my mother was visually impaired in her right eye.  Over time, she lost vision in her left eye, and by the last 2-3 years of her life she was legally blind.  Legally blind.   Yet, there were many staff at the nursing home who cared for her who were clueless of this impairment.  Here are two examples: 

(1) About 6 months before my mother's passing, the nursing home engaged in their 2nd attempt to discharge my mother without any legal basis.   We went to a hearing.  The nursing home's attorney called as a witness a nurse who had been assigned to my mother dozens of times.  Their attorney asked the nurse if my mother had any sensory impairments.  The nurse paused, and then said, "no."  When cross-examined, I posed the same question, and again - "no" was the nurse's answer.  My mother was legally blind and had been so for at least one and half years. 

(2) Again about 6 months before my mother's passing, I was sitting in my mother's room while the Assistant Nursing Director was training an aide to assist my mother with breakfast. The aide had provided care (e.g. bathing, changing) for my mother numerous times, though not assisting with meals.   When she was sitting next to my mother and giving her a forkful of food, I asked the aide if she thought my mother could see her.  She looked at me as if it wasn't obvious, and she said, "yes."  I asked her if she was aware that my mother was legally blind.  She said, "no."

Keep in mind this nursing home is part of a "high-end" continuing care retirement community.  The Administrator, Director of Nursing, and Assistant Director of Nursing were so negligent in their systems and training that staff were not aware my mother was legally blind!  Knowing someone is blind is imperative to their well-being.  Each person who entered my mother's room should have knocked and introduced themselves, so my mother knew what was going on.  Each staff person should have verbalized what they were doing - the care they provided.

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During a visit to my mother a year before I moved 3500 miles to care and advocate for her, I asked a nurse, "What is going on with my mother's hearing?"  She said, "What do you mean?"  I said, "Well, unless I am in front of her, she can't hear me."   Later, the doctor came in and crouched 18" in front of my mother and asked, "Judy, can you hear me?"  Knowing that was an insufficient test, I arranged to take her to an Ear, Nose, and Throat doctor (ENT).  He removed approximately 1/2 inch of wax from each ear.  My mother could hear fine after that.   The ENT also prescribed a cream to apply to her ear canal each week, and said to request the salon not use hair spray with my mother.  

Note that the facility made no attempt to educate the staff who cared for my mother.  I am sure a number of staff thought my mother had become less responsive due to her brain, rather than that she could not hear clearly.

Also note that nobody at the facility noticed the hearing loss.  That is yet another example of how inattentive and uncaring they were.  It was considered a "high end" facility; imagine what goes on at conventional facilities. :-\

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On a few occasions within a short span of time I arrived at the facility to find my mother's nails broken and jagged.  Clearly nobody was paying attention.  Since my mother's limitations would prevent her from breaking her own nails, these likely happened during care, when perhaps her nails hit a bed rail during care (when rolled on her side).  What I learned was that after the manicurist quit the "Care Center,"  nobody on staff cared for residents' nails.  That is, management and staff abdicated responsibility for residents' nails.  At one point a new Assistant Director of Nursing said she would take charge of my mother's nails; she did it once - and never again.  (I assume she was told not to by either the Director of Nursing or the Administrator.)  I took over and provided the care.  *  My step-brother also remarked how his father's nails had been unattended.

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One morning I was called by the Director of nursing to be told that my mother had suffered a small neck wound.   It was about a centimeter long.  When I asked how it happened, the Director of Nursing claimed that was unknown and asserted that my mother must have done it to herself.  Not a chance.  Over the years, I learned this denial of liability is standard protocol in  nursing homes and other similar facilities.  The photo provided is an actual picture.  How would my mother, with limited mobility, who could barely reach her neck, create a cut with angular bruising?  Not possible.  I knew they had used a Hoyer Lift with my mother earlier in the day.  I am quite certain they dropped one of the lift arms on her.  I also trust it was an accident.

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In August of 2018, a demented and sometimes hostile wheelchair bound resident attempted to open my mother's room and enter.  Keep in mind, my mother was immobile, visually impaired (though not fully legally blind at that time), and unable to initiate communication.   I put my foot on the door and spoke loud enough to get the attention of a the lead nurse who was down the hall at the central nursing station.  The nurse came quickly down the hall and pulled the screaming and fighting wannabe intruder away.  The nurse said she would report the incident to the powers-that-be, and I trust that she did (she was a good nurse, and we had a good relationship).  Unfortunately, during the subsequent week, I observed that same demented resident entering other residents' rooms.  And exactly a week after he had tried to get into my mother's room, he tried it again.  Despite management claiming to have put in a protocol with the wannabe intruder, he tried it a third time.   

On behalf of my mother, I filed a complaint about this with the Agency for Health Care Administration (AHCA), the state's nursing home oversight and enforcement agency.

Within two weeks I was about to walk into the facility, but was met by the Administrator.  He gave me a letter from the community's (i.e. CCRC's) Executive Director saying I was no longer allowed on the property, essentially claiming I was interfering with their efficient operations.

I filed a second complaint with AHCA about this ban, which was illegal under both federal (42 CFR § 483.10) and state law. In addition, retaliation for complaints is ALSO illegal.  

I found an attorney who was a family friend (via a cousin) who was willing to take this on, though he was unfamiliar with the body of law.  Together we worked on it.  BUT it took TWO MONTHS (the end of November 2018) to get before a judge.  Fortunately, the judge rightly ordered IMMEDIATE ACCESS.   Even when the facility's attorney asked if it could be the next day, the judge said, "No, immediately."

Only after the litigation did the facility get cited by AHCA - though they could have been cited at any time.  AHCA failed my mother, and deprived her of my care and companionship for two months.

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Below are two recordings of my mother responding to questions from my brother during the facility's illegal ban of my visitation.  The toll on my mother is obvious.   I can't listen to  these anymore; it is too painful.  

2018/09/29

2018/11/03

Note that my brother in a way tried to "trick" her during his 11/03 visit: "Did you see her one time this week?"  My mother demonstrated she had enough cognition not to answer, because I had not been there.  I believe my brother did this to add to the credibility of her answers, should we needed these audio clips for court.

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 I follow a few care forums, blogs, etc.  Lots of people seem to be under the misconception that care in a nursing home is 24/7, and/or that care in an assisted-living-facility will be sufficient.

Nursing homes do not offer 24/7 care or anything approaching it - even if required (by law) for the resident's health and well-being.  Ask a nursing home administrator if they offer one-on-one care and they will say "no."  This is so, even though the law states: 

"Quality of life is a fundamental principle that applies to all care and services provided to facility residents. Each resident must receive and the facility must provide the necessary care and services to attain or maintain the highest practicable physical, mental, and psychosocial well-being, consistent with the resident's comprehensive assessment and plan of care." (42 CFR § 483.24)

What nursing homes and assisted living facilities offer is 24/7 staffing, which is far from the equivalent of 24/7 care."  

The "care center" (nursing home, assisted living, and memory support) where my mother resided even required some residents to have private duty aides, on top of the fees residents were paying for assisted-living and the nursing-home.  While this practice is legal in assisted living facilities, it demonstrates the scam that many of these facilities perpetrate.  As for nursing homes, such a requirement for private care is illegal, but facilities get away with it because most people are clueless about the law and also unable or unwilling to challenge the facility.

In some assisted living facilities, services are a-la-carte, meaning if you ask for anything beyond what is offered as standard in the contract, you will be charged extra.  Oh, you need medication delivered more than twice a day, that is extra.  You need extra assistance because you are blind?  Okay, for a fee.  In others, if you need extra care, they will ask you to leave.  Everyone needs to check on a facility's practices before you sign on the dotted line.

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When I first arrived in FL to care and advocate for my mother, the room had a mildew odor.  I discovered the fins of the wall AC/Heater unit were covered in mold.  When I brought this to the attention of the Administrator, the unit was eventually replaced.  Interestingly, they chose not to check the other rooms for the same problem.  How do I know this?  Because about a year later when we were exploring moving my mother to another room, I inspected the wall AC/heater unit, and the fins were also covered in mold.            

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The vent in my mother's bathroom was filled with dust.           

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The internet service was unreliable and spotty.  It was a service provided through a vendor (Deep Blue) who typically provides services for hotels and the like.   As a user (and not their direct customer), the support was difficult to reach and generally they could not resolve the issues.

Because suitable activities for my mother (music in her room, streaming via a Roku for documentaries, audiobooks, etc.), I eventually needed to install her own WiFi service in her room.  Thankfully, after a couple of attempts and tweaks, AT&T was able to get it working, and the signal was strong and reliable.

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The facility had a contract with one of the large cable TV providers (you can probably guess which one).  The TV channels were more limited than a standard package, and there were no music channels.  

Despite them knowing (or should have known) that music is extremely beneficial for elders and people with dementia, when the contract with the TV provider came up for a 10 year renewal, they made no changes.  The Activities Manager claimed she had made the case for music, and even claimed the facilities Administrator made the same case, the never-to-be-seen corporate execs chose to ignore the need.

Add to this that this community was promoted as "high-end," but in the end that only meant residents paid a lot and the owners and management benefited, not the residents.

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When I arrived to care for my mother, I discovered many of her clothes were tattered and/or not fitting her properly.   Apparently no staff at the facility cared or felt empowered to do anything about it.  Her bras didn't fit and had bent hooks.  Her nightgowns didn't fit.  Some of her tops had hole in them.  How it that acceptable?  Nobody could alert her husband, children, step-children (of 30+ years)?   This situation was just another example of what I refer to as "institutionalized neglect."  Trust me or not, but I assert it is the modus operandi in many, if not most, nursing facilities.

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First, understand there is always a lot of noise in a nursing home, particularly one that is not carpeted and people are allowed to blast their TVs instead of being required to keep the sound moderated or use headphones.   In addition, you have talking in the halls, between staff, residents, and visitors.

In my mother's facility, like most,  call button bells were routinely ignored for extended periods (over 10 minutes).   Contemplate this happening everyday, throughout the day and into the evening, say 9 or 10 pm.   I recall one tiny (under 5' tall and small) resident of the community coming over to the "care center" to have dinner with her husband.  She later relayed to me that after dinner her husband needed to use the bathroom and they had put on the call light/bell.  She said that after 40 minutes with no staff arriving , she did her best to help him.  It's nothing more than lucky she was not injured.  

One time there was beeping from an alarm panel that went on for over 48 hours.  I'm not exaggerating.   There were other times when alarms blasted into each room, or alarms went off for hours -- the staff claiming they didn't know how to turn them off.  Crazy, eh?  I call in managerial incompetence.

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Because I typically arrived each day at 1 PM (and left about 9 PM), it was years before I discovered how the aides were washing my mother's hair, which they only did once or twice a week.   I was appalled.  With my mother laying on her back, the aides shoved folded towels under her upper back, and sat her head over the edge of a standard flimsy institutional wash basin.  It explained to me why my mother's neck muscles were hard as a rock - and why she didn't like getting her hair washed.  

I insisted they change the method to one where she sat up.  I bought a hair salon robe and offered to buy a specific kind of basin to use (which they declined).   Despite my effort, and agreement from the Director of Nursing, I arrived early one day to find the aide positioning my mother to use the flimsy basin method.  Aargh.  I do not know if this was yet another example of poor management or a defiant aide.  In either case, it reflected the attitude that the facility "owned" the residents, and treated them like prisoners -- in violation of Federal law, which requires person-centered care (see 42 CFR § 483.21 for an example).

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 A nurse decided my mother needed a urinary catheter because of a low volume of urine.  Okay.  However, my mother complained about the catheter, and when I inquired I discovered the facility only had one size catheter (16) and thats what they used!  WTF.  A facility with 60 beds and more women than men and that is all they had?  Poor management?  Cheap?  Incompetent.  I immediately requested they remove the catheter, and in the meantime, I ordered smaller silicone coated ones.  Luckily, my mother never actually needed them.

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