A Personal Message From Carrie Jones

By Carrie Jones

Sadly my great uncle, Ray Edwards, suffered Elder Abuse not only at the hands of his wife, but also at an assisted living facility (ALF).  While Ray was at a skilled nursing facility, and I had power of attorney, my family and I started researching a permanent residence for him.  I am just a young girl and had no previous knowledge of what to do or where to look for help.  My mother and her sister flew to California to help me.  We narrowed our search to a beautiful facility in Pasadena, CA.  The facility rolled out the red carpet for us.  They took us to a private room, offered us coffee, tea, sparkling water.  They began to tell us everything that they could offer to my uncle.  3 meals a day in an immaculate dining room, snacks in between meals, bathing once a day, laundry once a week, special attention to his dietary needs.  They told us they would get him involved in various activities.  They even had me fill out a questionnaire regarding his interests.  They said that he could garden, go out on group outings, play games, woodworking.  We were sold!!  Almost $5000 a month, however we still had to cover expenses. 

The staff, by law had to evaluate him at the nursing home, to check what level of care he may need.  I found out later that if my uncle had “long term care insurance”, they would’ve asked to see the policy first…then they would know how much money they were working with, so they could add on various expenses.  They assessed Ray and determined that he had “mild dementia” and should be admitted to the Memory Care wing (the most expensive).  I foolishly had mentioned that money was not an issue when it came to his care.  I was at the facility waiting for my uncle to arrive.  I did not want him to be scared and feel alone in a new place.  The staff were amazing.  They showed us all around.  They wheeled him into the dining room and to the activity room.  Everyone called him by his name.  He had a huge bedroom and bathroom all to himself.  The only thing that put me off was that they kept all of the resident’s doors locked.  They said it was for the patient’s safety.  Whatever.  My uncle was pretty grumpy the first few days.  I can’t begin to imagine how it must feel to be moved from your home of over 30 years.

Over the next couple of weeks, I was there almost every other day.  I bought him a huge TV, more new clothes, a huge supply of Depends (his favorite), a Lazy Boy recliner, and also brought pictures and personal items that would make it feel more like home. 

I asked that home health continue to check on him, so there would be another set of eyes looking out.  Within the 1st week, I got a call from HH (who were not affiliated with the facility) saying that they saw early signs of a bed sore.  I immediately called the facility and they said they didn’t see anything.  Who do you believe?  Over the course of the next few weeks, home health had found him on the floor twice.  After being let into his room, I found him on the floor twice as well.  HH mentioned that maybe I should consider a Board & Care Facility…What is that?  During this time, I received a phone call from the med tech, saying that Ray would get a little restless at night.  They asked for my permission to give him “a little something to ease his restlessness” “as needed”.  I stupidly said “yes”.  Who knew that all they needed was verbal consent to drug him?  I started to see Ray become quiet and always tired. 

After about the 5th time he was found on the floor (that I know of), I requested a bed rail or a hospital bed.  I was told that he could NOT have either, unless he was under Hospice care.  NOT TRUE.  They suggested a bed wedge, which I bought, however was rarely used.  They also refused to give him a pendant (a necklace to wear if he fell).  They said that Memory Care patients were not allowed to have them, for fear they would lose them.  They informed me that there were sensors on his bed to detect his movements…if this were true, how did they not know he was on the floor for hours at a time?  At this point, I asked if they could re-evaluate him in hopes that he could go to another wing, where he could have life alert pendant.  I had no idea that he would be receiving LESS care in the wing where he was moved.  Once in the new wing I tested the pendant, only to find that the batteries were dead!   I wonder for how long?  I ignored the director and installed a bed rail myself.  I also encouraged EVERY member of the staff to use the bed wedge to prop him up, because I noticed that his cough sounded like there was fluid in the lungs.  I asked for a doctor to check him.  Of course they had their own doctor.  (I should’ve called a private physician).  The doctor said that Ray was aspirating.  He needed ALL liquids to be thickened and his food needed to be finely chopped.  This NEVER happened.  I was so frustrated!  I bought him a mini fridge and individual thickening packets for easy use.  I was doing their job!  They NEVER used either. 

I started sneaking into the facility during meal times to watch my uncle.  One day he was so tired and hunched over.  He wasn’t touching anything on his plate.  Furious.  I asked the caregiver why they were physically feeding another patient and not my uncle.  He responded that they “cannot physically feed a patient unless they are under Hospice care”  NOT TRUE! 

I received a phone call from the facility on a Thursday afternoon, saying that they needed a check for the rent.  I thought it was pro-rated, so I was unsure of the actual due date.  I asked if I could bring it over the weekend, considering I was in Orange County.  They told me that there would be a penalty.  I got in my car, was stuck in traffic for over an hour, and arrived at the facility.  A higher power was watching over us that day.  When I arrived, the front desk acted normal.  I gave them the check and asked how my uncle was doing.  They said word for word “oh, well, we are thinking about taking him”.  WHAT…Where?  The HOSPITAL?!  I could hear him choking all the way down the hall.  I sprinted to his room.  He was alone, face was blue, sweating, and couldn’t speak.  He was drowning from fluid in his lungs.  I screamed for someone to call 911.  They said that they were trying to get home health on the phone!  It was 7:30 PM!  I am not a doctor, nurse, and have never had an ounce of training…even I knew that HH was only 9 to 5!  He needed emergency help.  The paramedics arrived in 5 minutes.  He had to be put on life support in the ambulance.  The doctor told me that if I wouldn’t have arrived when I did, he would be dead.  DEAD!  He had pneumonia in both lungs.  The hospital staff prepared me for the worst.  I could NOT believe that I was signing papers about resuscitation and being asked if there were already plans in place for his burial! 

As I sat with Ray in the ER, ICU, and regular room for over a week…he recovered!  (In the meantime the bank froze the accounts again!  Even though no money was ever taken).  Ray was not 100%, but well enough to be discharged.  The doctors said that it was a miracle and that the love that him and I shared, made all of the difference. 

I had no choice but to take Ray back to the Assisted Living. In a whirlwind of not knowing if he would live, I really didn’t have a chance to look for new living arrangements.  When he came back to the ALF, the staff didn’t even know he was gone!! 

A social worker at the hospital gave me a lead about a Board and Care Facility.  I obviously needed time to check it out.  My parents came back to CA to help me.  We looked at a few places…then…my uncle’s condition got bad again.  I yelled at the staff about thickening his liquids.  How many times do I have mention this?  While we were with Ray, the caregiver brought him regular food and tap water UN-THICKENED!  I lost my mind!  Not to mention the fact that he was wearing the same shirt for 2 days.  He had no clean clothes.  So much for laundry once a week!  LIE!

The following day I snuck into the dining room to see if they had thickened his liquid for lunch.  Well, they had!  It was SO thick that his weak hand couldn’t get anything from the glass!  I took that glass, called the Board & Care, called a car service, and went straight to the Director’s office.  Her first words to me were “Hi Carrie, I hope you know that the whole staff is now aware to thicken your uncle’s liquids”.  I showed her a picture of the glass that I had just taken.  She laughed and said “oh that is just jello”!  I ran to his room, grabbed the glass, and turned upside down on her desk and asked her to tell me again that IT’S JUST JELLO?!  She was shocked.  She said “so are you giving us your 30 day notice”?  My reply, “This is my 30 minute notice, there is a car on its way.  I expect you to have him changed and ready to go”.  I felt like a strong woman in that moment.  I was speaking for someone that I loved, that could not speak for himself.

Once my uncle arrived at the Board and Care (Mountain View Terrace).  Linda, the owner, informed me that instead of changing him, the assisted living facility just threw on another diaper on top of a soiled one

Icing on the cake.  I went back to the ALF to get his medication.  As required by law, they gave it to me….I WAS SHOCKED!

How is it okay to drug an 89 year old man with this much sedatives with only verbal consent over the phone to “give him a little something when he is restless”  I DID NOT authorize the amount of medication, and was NEVER informed of what they were giving him. 

The Board and Care facility was amazing.  My uncle gained 20 pounds while at Mountain View Terrace.  We spend father’s day together.  They got him off of all of the drugs and became his old self again.  Sadly, he was never able to fully recover from the damage of pneumonia and lack of care from the assisted living. 

He died in his sleep July 30, 2013.  I got that dreaded call in the evening.  I was able to say goodbye and tell him that he changed my life. 

The staff stood at attention as he was wheeled out with an American Flag draped over him.

I will dedicate my life to STOP ELDER ABUSE.  Please do not wait until it effects someone that you love or yourself, to stand up and make a difference. 

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