Long Term Care Experience to Learn From

In September, 2008, I had half a day to find ainternet thinking maybe they were truly ignorant. I
Long-Term Facility for my mother, who had suffereddidn't accuse or get angry. I couldn't believe they
an episode where she lost her memory and thewere ignoring the facts. I was told not to talk about
ability to follow simple instructions. She did not knowscabies by the administrator out in the parking lot
me or where she was or even know for sure whoone day. She said, "it upsets everyone". She later told
she was. I was completely ignorant as to the rulesmy mother's case worker, that I had self diagnosed
and regulations pertaining to Long Term Care inthe problem. Everyone was itching, help even itched,
Oregon. Also, I did not know that the hospital was tobut no one addressed the problem. No one would
give me a 72 hour notice before releasing my motherdiscuss it with me. It was like I was speaking to the
from their care. I trusted that what I was told waswind. My mother continued to itch...she is just getting
correct and the care my mother would be receivingover it one month after being moved out. I imagine
would be for her best interest. I wanted to simplyeveryone has itched or will itch soon at this facility.
place my mother and assume that all would beThey told me it was "Institutional Rash". That term
satisfactory without my having to get incrediblydoesn't even Google. It was reported as abuse. In
involved. I wanted to visit my mother, bring her a bitAugust, there was an attempt to clean all rooms and
of cheer and have the facility take care of hercover all furniture with cloths without ever addressing
medical, social and physical needsthe little bug for what it is: Scabies
Thinking that the more I was involved, the betterI was about to go into the Ombudsman program in
would be the relationship I had with the facility. IAugust. I reluctantly consented to the move to the
volunteered for everything, brought in artwork andother unit in April or early May. I knew our time there
items to cheer up the space. They even asked mewas short. I would know enough with my training to
to hold their activity time each Thursday. I soonget her out of there and how to find a better place!
discovered that this wasn't going to create a moreShe did OK in the unit settling in with little notice of
open communication. I felt I was simply being used.being uncomfortable. She did not decline. She actually
By the spring of 2009, I no longer volunteered orstarted showing recovery of memory. From nothing
took part in potlucks or other activities. I was findingto lots of things! From April to the time she left in
myself mostly disgusted that the facility ignored orOctober, there was at least a 65 per cent
brushed away everything I was concerned about.improvement in lack of dementia. She complained
I remember my first concern was a simple oneoften of being bored silly in the facility with nothing
involving the lack of nail care. My mother complainedto do but sit and wait and then sit and wait for
about her nails needing to be clipped. My husband andmore. She talked about a fellow resident that she felt
myself asked the administrator only to be told thatsorry for as she had "lost it". In comparison, my
"the family took care of nail care". In my innermother had much less dementia than anyone else in
thoughts, I knew this could not be true as manythe unit she was placed. No mention of this was
residents have no family, but I said little knowing thismade by staff or anyone else. I would say
is something I would have to look into for myself. Atsomething, but it was mostly ignored or brushed
this same meeting, we brought up our concern thataway. I have close medical professional friends who
we could not make sense of the billing statement. Mywere as shocked as I with her improvement. No one
husband and I are both educated and intelligent, but itat the facility saw her improvement or wanted to
was "Greek" to us. I have to say that months laterrecognize that maybe the unit was no longer suitable
the bill was simplified and easy to read. From day onefor her.
of our relationship with the facility, it was clear thatI discovered in my training that I could see my
questions and concerns were not welcomed. Theremother's medical records and log charts. They made
was an avoidance of answers and usually no actionno sense with what I observed with my mother.
to correct any concerns.Support hose were prescribed, on the care plan,
At the next Care Plan Meeting, I came prepared. Ilogged in the records, but never on my mother. I had
had made a list of all questions on the computer.to believe the worse. If this was falsified, what else?
With each question, I backed up the questionI reported this to the authorities. My mother insisted
concern with data from my mother's assessmentthat no one ever helped her take a shower; yet it
from Senior and Disabilities stating her needs andwas checked off and the assessment stated "full
expected care. On that list it was clearly stated thatassist". Who was right? The pills prescribed by the
she should receive nail care three times each week. Idoctor at the facility on top of what my mother's
plan to attach these notes to my finalized report.primary physician had already prescribed continued no
My effort to make sure that my questions/concernsmatter that I had questioned this practice. My
were clear and not misinterpreted was in vain. Imother's doctor reported that he had never received
walked away from the meeting knowing I would notany report of medications being added to her daily
be able to get any clarification on what I asked. Ipile of drugs or any other communication from the
was actually told by staff after this meeting thatfacility doctor. The facility told me that they would
they should not talk with me. They had been friendly,call my mother's doctor and never get a call back.
helpful and listened to what I asked and tried toWho is at fault? I found it incredible that very small
answer any questions if they could. They alsoinsignificant concerns would be either lied about or
complained to me about their schedules and longdiscounted. It didn't matter what it was.
hours of work. They told me about better facilitiesRight before I gave notice that my mother was
where they were soon to work. They confided inleaving, we had another Care Plan Meeting. For the
me. I am an open friendly person. It was oftenfirst time, my mother attended without wearing her
stated by the administrator and RN that my mothersupport hose. Residents are to be invited to all Care
would refuse services while at the same time, shePlan Meetings. It was more of the same. When the
was not confrontational and clearly would voice herquestion was asked about the support hose, they
needs to me. The staff did not voice these samesaid her pair was being washed. I replied that she had
concerns. The help would sometimes forget not totwo pair because I had been told she had to have
talk to me. It was clear when they had beentwo pair so one could be washed. There was no
reminded once again. Questions/Concerns werereply. I did not expect more. When I brought up that
clearly seen as an attack and were to be avoided orthe case worker had been told that I had diagnosed
discounted. If my mother could tell me, I felt theythe scabies, the RN replied while the administrator
needed to find a way for her to tell them or theyremained silent. The RN had no knowledge regarding
needed to listen to me and act on what I said. Shethis situation but insisted that she had not told the
reported that she hated to ask or that someone hadcase worker as if it could only be her. The RN didn't
been rude when she did. It seems not expectingbother asking the administrator what she knew
anything is the desired behavior.about it. The administrator remained silent. As a
My mother has profound hearing loss as documentedCertified State Ombudsman and a legal
by professionals. They would actually tell me that sherepresentative for my mother, I expected more. The
seemed to hear well and made little effort to findOmbudsman assigned to this facility attended this
ways to maintain her hearing devices or have hermeeting. The case worker was not invited. It is a rule
wear them. I took the small one away after shethat he must be invited/notified of Care Plan
washed them with soap and water and bought her aMeetings. He had no notification.
very good $200.00 large device. It was never on herIn the year my mother lived at the facility, I
no matter what I said. When I would place it onremember three different RN's. Each one was overly
mom, she would marvel at her ability to hear and goenthusiastic about the facility to the point of almost
on about how wonderful it was to hear. They toldlaughable with what I had grown to know. They
me she wouldn't wear them. I was also told if theywere singing praises to the choir that had vacated
were lost, they could not be responsible for the lostthe church. I tried to hide my embarrassment I felt
device. I was told this on numerous occasions. Infor their need to do this. I have run into former
early 2009, her partial disappeared. It was with heremployees including at least two RN's. Not a positive
when she was admitted, but like hearing aids, theycomment comes from any of them. One former RN,
seemingly were not considered important. I wouldpleaded with me to do everything I can to get some
have taken them home if I knew no one wasresults with my report of infractions I found. The
protecting my mother's personal belongings, as thefacility needs a wake up call. They must know that it
regulations demand. When I mentioned a lost item,would take less effort to run a good facility than to
the staff and administration would say, "she must'vecontinue their useless dance of smoke and mirrors
lost it", "maybe she threw them away".hoping no one notices. It must be exhausting to
Her finger nails and toenails often were in horriblespend valuable time covering for their lack of
condition. She looked like she had come out of theservices and record keeping.
woods after way too long. She sat with littleI did bring my mother home. After requesting her
expression on her face. She wore no makeup, caredmedications, I googled all of them and removed most
little about what she wore and became less myof any mind altering drugs. I have attached
mother every day. About this time, they told medescriptions of these drugs to this report I will be
that she was hard to handle in that she wonderedsubmitting. I conferred with my mother's primary
from room to room where she was not welcomed.physician. He agreed that she had been overly
She wet her bed, had a bowel movement in a cornermedicated. He also suggested that we go on a road
and other proofs of her decline. They suggested thattrip in the spring for her to visit her sister in
she be moved to the unit in their building forWisconsin. He thinks she is doing just fine.
residents with severe memory problems. She hadHer pain patch was not in with the medications given
been in a unit with less help, but more social andme. I believed that they needed to be ordered, but
beautiful surroundings. I didn't like the idea that sheupon going to the drug store, they told me that they
was to be with people who communicated little withhad been delivered a few days before I picked mom
blank faces and inabilities to partake in many socialup to take her home. I immediately went to the
interactions. I could see my mother just sittingfacility to retrieve the controlled substance. The staff
waiting to die in this other unit. She actually told memember handed it to me commenting that "Oh, I
that they sat to wait for the next meal not thinkingmeant to call you. Your mom probably wouldn't
about dying.notice whether she had it or not" or close to that.
With my continual distrust in what I was hearing andOne more reality check! How could they be so
observing, I looked for answers. In the process, Iignorant and insensitive to think one can't feel their
found the State Ombudsman Program and applied topain? They also had another medication that they
become a Certified Ombudsman. I really hoped withhad failed to turn over on release from the facility.
this in my pocket, I would find a more transparentWould they have ever notified me that they had
and honest communication with the facility. I also sawthem? I don't think they would have. It had already
the extreme need for all Long Term Care Residentsbeen 5 days. I was two days late in putting it on her.
to have an advocate to be at their back helping toShe has blossomed remembering more every day.
be sure their rights were protected. In the program, IAfter a month home and after a year of long term
learned that many of the practices at this facilitycare, my mother is again:putting on her own makeup;
were clearly against regulations and that my motherwhich was never thought of while in long term
had little rights she could claim as her own living there.caredressing in her best clothes to go out insisting on
I learned also that the audits from the State wereblack shoes to go with black pants
not favorable. I requested this audit from the State. IMaking sure I remember to take her to The Senior
was surprised that some of what was in there, stillCenter once a week to see friendsasking for her
wasn't being corrected although the report wasjewelry she hadn't worn for a year and never
made months ago. I reported to the Ombudsman,missedtalking about family and friends she hadn't
who managed to improve one of the infractions.remembered to ask aboutcalling her 95 year old
I made it known of my new position, but it did notsister in Wisconsin to have a meaningful conversation
change the smoke and mirrors I would experience atRemembering to tell me that she is about to take a
each corner. No answers to valid concerns. Deceitshower like I asked her
was rampant. I could not believe that it would be soTaking responsibility for the care of her dog
blatant. Who did they think they were dealing with?She wonders where her memory went. I wonder to.
Only a very ignorant person would not recognizeI think she could have been recovered much earlier
what was being done.before the influx of drugs to keep her complacent,
In February, my mother came down with a rash. Itquiet, in a blank world where she could have
drove her nuts. I took her to a medical clinic twiceremained for years. My concern is for those who still
and finally to her primary physician. He stated clearlysit there waiting for nothing. Is anyone else
that it was Scabies. I reported this to the facilityscreaming to be set free? I wonder. She showed
along with placing the prescription for eliminatingsigns of improvement even while on too many drugs.
scabies in their possession. It was ignored althoughShe is now like a bird that has been let out the cage.
the medication temporarily cured my mom's problem.She is soaring, happy and looking forward to life.
I attempted to even bring in information off the