Sunday, December 14, 2014

Darkness at "Sunrise": The $74,000 a year dementia warehouse

A mind is a terrible thing to neglect, deprecate or manipulate.

There are no hugs from staff (that's against policy) nor are there bright-eyed, stylish, healthy residents in the dementia wards.


    (12/14/14) When you step off the elevator onto the fourth floor of Sunrise Senior Living, and you enter the secure “Reminiscence” ward -- where dementia patients are housed -- you might well become overwhelmed with a sense of dread. The first thing you see is a large, semi-dark room – known as “the TV room” -- in which about 25 women sit virtually all day in theater-style rows, with their eyes closed and their heads either hanging down or thrown back. A couple of them gaze vacantly into the distance. There are no interactions between them, and the seating arrangement certainly isn’t conducive, even to eye contact. Is this what the website meant by "individually tailored care"?
    No one is watching “Let’s Make a Deal.” They ignored "The Price is Right" as well. It would be too bad if they were interested: The sound is turned off. These women look gray and dead. They seem unreal, as if they were in Madame Tussauds’ rendition of Zombieville.
    I am sick with grief and guilt as I confront the fact that my mother is moving into this $74,000 a year institution tomorrow.





They ought to be watching "This is Your Life." And it's not "A Wonderful Life". (I have never seen the drapes open).
    The aura of hopelessness and loneliness is chilling. It is just like the nursing homes I have visited many times (everyone I know is, inexplicably, getting old), except that here the women are all in one room, in a catatonic state, instead of being catatonic in their individual rooms.    
    A Sunrise promotional line comes to mind: “A place to tone the body, challenge the mind and lift the spirits.” 
    What a joke! It is very much like the most irresponsible daycare centers. Just use the TV as a babysitter.
    This was my first inkling that there was Darkness at Sunrise, and that before long, I would embark on a largely futile, prolonged campaign to improve conditions there. Over the next five months, I wrote dozens of emails to Sunrise Executive Director George Wright  -- and letters to corporate headquarters, that contained about 12,000 words total -- seeking to understand and possibly to help remedy the countless ways in which Sunrise failed to meet its contractual and legal obligations. I was ignored. They don't care. Dementia patients don't tend to complain. Their families send in their $6,000 or so checks each month, and all is well.

In this post, I will make this case about the dementia care offered by Sunrise, which operates about 300 elder-care facilities:
  • Beneath the facade of cheeriness, compassion and competence is a corporation that overwhelmingly values profits over patient care. Its executive director (ED) and reminiscence director (RD) relentlessly  enforce this facade.
  • Sunrise does not provide dementia therapies. It claims to use "cutting-edge" approaches to preserve and even improve the brain function of its residents. Instead, its "activities," which most residents sullenly ignore, are straight out of a first-grade teacher's manual. Cutting-edge therapies have been developed,  but Sunrise is content to stick with cheap, outdated methods. 
  • Sunrise is secretive and paranoid. It illegally prevents families from having access to all written records about their loved ones  (behavioral and medical) and "serious incident" reports, which are stamped "Confidential." 
  • The legendary Sunrise script -- and the whole operation is scripted -- obliges all staff to tell residents' families that they are having "beautiful days," are in a "great mood," are enjoying the so-called activities, and "adjusting well" -- no matter what the real truth is. Keeping families complacent is vital to the Sunrise strategy.
  • Sunrise has lax security. Residents can't lock their doors. Men wander all the time into women's rooms, creating an unsafe and unsettling environment.
  • Sunrise shortchanges its residents' nutritional needs. There is lots of sugar. There is very little fiber and minimal use of fresh produce or whole grains. Although virtually all of its residents are almost certainly deficient in Vitamins B12 and D -- which are vital to brain health -- it has undertaken no campaign to ensure that supplementation is provided.
  • The Sunrise "medical team" is incompetent, lacking in compassion, and lazy. Residents are often told that their pain, abdominal distress, weakness, dizziness, blurred vision, etc., are just "part of getting old." The residents do not feel respected or cared for.
  • Most residents at Sunrise are merely vegetating, spending the vast majority of their time dozing in the "TV room." They are being cruelly warehoused.  
  • Sunrise claims to be aware of what I readily discovered: That its residents' dementia has not destroyed their brains. They are interesting, empathetic, observant, funny people who could greatly benefit from a decent program of affection and mental stimulation.  
  • Sunrise refuses to put anything in writing. I got accustomed to this while writing my series on Edward Jones, but that firm had the excuse of SEC scrutiny. Sunrise has none. I have submitted dozens of questions over the past five months, but both local and corporate officials insist on having meetings rather than providing written responses. I have tried to have meetings with these people, but they are a waste of time. Officials lie, digress, throw out red herrings, and make excuses that are either weak or lacking in credibility. All I asked for was that they provide their policies in written form. I got nothing. They refuse to commit.
  • As a result, this should not be considered an objective work of journalism. I am describing my true, deeply felt, experiences and impressions. If you want Sunrise's side of the story, refer to the corporate website.
  • It will be natural for any reader to wonder why I didn't get my mother out of Sunrise. One reason is that I did not find any preferable options nearby. I did my best to get her back home, where she wants desperately to be. I found a wonderful caregiver, with 35 years of experience as a certified nursing assistant, working with elderly and demented clients. She agreed to be a live-in housekeeper and companion. This move was blocked by a trumped-up legal action by my sisters, so she remains at Sunrise, until I muster the emotional resources to fight back. 
  • Dec. 5, 2014 from the UK's Daily Mail: ((http://www.dailymail.co.uk/news/article-2862805/Staff-50k-year-care-home-accused-downright-lying-check-residents-elderly-hospital-consultant-dead-floor-room.html.) Staff at £50k-a-year Sunrise Senior Living dementia facility  accused of 'downright lying' about how often they check residents after an elderly hospital consultant was found dead on floor of his room that morning. The eminent expert should have been monitored every two hours. But staff at the home admitted filling out time sheets in advance. 
  •  
    The mother I remember, joyful and gracious.


    Even now, she is radiantly beautiful.
  • Now to the story: 

MOVIN' ON UP -- TO THE DREADED 'LEVEL THREE'

    My arms were filled with garment bags. I was moving my spirited, observant, proud mother into this place, because she had become “a wandering risk,” at the much nicer (at half the price) assisted living facility, which could no longer guarantee her safety.  She had fled the building several times during her two months there -- in her slippers, walking onto a highway that was filled with traffic and heavy equipment, determined to find her way home.

    That’s all she wanted: To go home. 

    And now I stand looking at this cavernous TV room, a clumsily camouflaged warehouse, and am flooded with heartache at the thought that I will be installing my mother here and returning to real life – to the Outside World -- leaving this frail, intelligent, proud woman to fend for herself. My mother doesn’t belong here. If she were with me right now, seeing what I am seeing, she would run away, and she would keep running until it killed her.

Sunrise Senior Living in Holladay, Utah. There's probably one near you -- maybe a cuter one!

    I had never seen the TV room in action -- or rather inaction -- until I had signed a contract and was moving my mother in. Tours for prospective residents and families are timed to coincide either with mealtime, church services, or with one of two daily "hydration breaks," during which dementia patients convene in the dining room for a beverage and a cookie. All of these put together add up to about two hours a day. I had no idea that the rest of their time would be spent essentially in a vegetative state. Even seeing them gathering in their Sunday best for church, I was despondent about the condition of the residents. They seemed like goners. Putting my mother here would be like putting a sane person in an insane asylum -- or that's how I felt at the time. She needed to be stimulated, not tossed in with expressionless, lost souls.


JUST ISOLATE HER, AND RE-EDUCATE HER, LIKE IN CHINA

    I was torn apart when I took my mother to her room that first day. She flung herself into my arms and asked, “How can you do this to me, honey? Please, please, just take me home.” I cannot adequately describe how heartbreaking this was. 

My mother's Sunrise bedroom.
    As I was leaving, the "Reminiscence Director" (RD) encouraged me not to call or visit for “at least a week, maybe 10 days.” This was such a shockingly heartless strategy that I didn’t seriously consider it. It reminded me of kidnappers who tell their young victims that their parents don’t care about them, aren’t looking for them, and have forgotten about them. It was brainwashing.

    To throw your tiny, beloved, grief-stricken mother into a strange, locked environment and force her to adapt without the comfort and support of her family? It was a ruthless, cruel suggestion. I ignored it. That is a tough-love approach that I could not bear, and anyway, it wasn’t even love, except for their love of money and of “subdued” residents who forget that there is another world outside those tackily decorated walls.

    As the weeks passed,  it appeared to be Sunrise policy to encourage my mother to call me whenever she became distraught, frightened, confused or pleading to go home, making no effort to use Sunrise expertise in comforting and redirecting her during these "sundowning" episodes, which are common among dementia patients. I was shocked that a facility that charges so much to provide expert dementia care was failing so consistently to do so.
The ward was filled with resignation and loneliness.
TAKING YOUR COMMENTS TO AN ILLOGICAL CONCLUSION

    When I asked about this, after having my sleep disturbed night after night by my mother’s sobbing phone calls, the RD said, “So should we just not let her call you anymore?”

    How absurd. A typical Sunrise overreaction. I was asking that Sunrise do the job we’re paying it tens of thousands of dollars a year to do, with its much vaunted “expertise” and “sensitivity” in addressing dementia behaviors (of which desperately wanting to go home is almost universal). Had they even tried to use their proudly touted "Snoezelen Room," a cozy refuge designed to soothe distraught patients?

    I always want my mother to call me whenever she needs or wants to, but that does not relieve care managers of their responsibilities to attend conscientiously to her emotional needs. Once they’ve done their best to serve as expert dementia caregivers, if she still needs to call me – crying her heart out, or just to chat – then she should be assisted in doing so.

WHAT DID THEY DO TO HER?

    I believe that a sort of retaliation occurred after I asked why I was being obliged to do Sunrise’s job of coping with these well-documented “sundowning” behaviors (which ultimately bled into “early morning” and “early afternoon” behaviors), wreaking havoc on my already grieving psyche. Suddenly, she stopped calling altogether, just like that.

    Was she drugged? Were aides instructed to refuse her requests to call me by saying something like, “Sylvia is out of town”? I was baffled and concerned about her unexplained and dramatic change in behavior, but Sunrise executives denied that any measure had been taken to curtail her phone access. 
    I was there every day for a long morning of breakfast and socializing. When I asked her why she had stopped calling me, she said, "I didn't know I ever called you. I wouldn't think of bothering you with my problems."
    In the five months that my mother has lived at Sunrise, she has required a great deal of affection and reassurance, which I have been privileged to provide. Sometimes I feel like both her husband and her mother. "That's good, because I need both right now," she tells me.   
    When I visited my mother one recent Tuesday, she was still wearing the rumpled, mismatched clothes that she had slept in on Saturday night. It was 90 minutes after she was supposed to have gotten up, but she was in bed crying (this was happening several mornings a week). She asked me to get into bed with her, which she often does (finally -- now that I’m 65! I wish we’d done this all along). 
 
My mother's dementia has enabled a new intimacy.
    For my whole life, my mother has never smelled bad. But now, at Sunrise, she often stinks: her hair, her skin, her mouth, her clothes, her undergarments. The "Sunrise Difference" emphasizes the "independence, dignity and quality of life of our residents."
    What total crap!
 
I had taken my mother out of her home in part because it had become chaotic. Here, it was as bad as ever.

Her room was a mess -- and it smelled like steer manure.



LET'S MAKE A DEAL: GIVE US WHAT WE'RE PAYING FOR  
    Back to that TV room. After every meal, the aides cheerily but firmly say, “Now let’s go to the TV room!” This is the spirit-killing venue in which families’ loved ones plunge deeper every day into the realm of the Novocain Brain. The website promises not merely mental pleasures, but also bona fide treatment for dementia. 
    “Our dementia care program focuses on understanding the stories and details of a senior's life so we can help all experience pleasant days. Backed by the latest research and knowledge of Alzheimer's and dementia care, our professional team designs personalized programs with multi-sensory experiences, daily exercise and outings, group activities and regular contact with children and pets." 

The two house cats seem to have an instinctive understanding.
    Sunrise’s dementia care is all smoke and mirrors, and most of the women know it. They share a sort of gallows humor about their proscribed, monotonous lives and the ways in which they are treated like retarded children.
    There are no pleasant days or personalized programs or multisensory experiences, and the activities have no resemblance to anything based on “the latest research (in)…dementia care.” 
Your personal caregiver will bring joy to every demented day. Nope, it's not like that.
    Where were all those care managers, whose job it was to provide “life enriching activities as indicated on their individual profiles”? In the months since I installed my mother here, I have never seen anything resembling this.
    There are nutritional, technological and experiential approaches to treating dementia -- developed over the past decade -- that I summarized in my letter to Sunrise headquarters, urging them to hire at least one person to study and implement some of these very promising strategies to benefit their thousands of dementia patients. Research from Europe and the U.S. suggests excitingly effective concepts that are being developed to slow or even reverse the progression of dementia. Tossing a balloon around the TV room was not one of them. At the bottom of this article, I have posed examples of these strategies. 
     Here's just one: According to the New York Times,“‘Exergames’ (video games for dementia patients) have the potential to increase fitness by shifting attention away from some of the aversive aspects of working out, and toward motivating features such as competition and three-dimensional scenery. The brains of the participants remained highly plastic, and training resulted in significant neural changes that were measurable with brain imaging.” 
    But perhaps this exceedingly wealthy corporation finds Halloween Trivia to be more cost-effective.

IT HASN’T DAWNED ON SUNRISE
    Sunrise apparently doesn’t have even one person at the corporate level whose job it is to keep up with the very dynamic world of global research into new therapies to benefit those with Alzheimer’s and other dementias.  Instead, it uses anachronistic, quasi-disrespectful, unproven activities, toward which residents show either indifference or contempt.  Why is Sunrise messing around with Bingo and manicures and “The Cosby Show,” when there are so many more impactful alternatives? Why are they being given quizzes, straight out of a first-grade teacher’s manual, about animals in the zoo (Which animal at the zoo looks like a horse with black and white stripes?”)?
And which one has a long neck?
  The “signature” Sunrise approach is to treat those with dementia as children, with such “fun games” as Simon Says and Pictionary.  Wow – that sounds “personalized” and “cutting-edge.” What decade (or century) are they in?
    The women in the TV room are totally unresponsive to these silly exercises, just as they are to the so-called stretching and strengthening interludes. They sit there blankly, and refuse to lift their legs or circle their arms. Are they being defiant, or are they simply uninterested, or are they insulted by the whole dynamic of this absurdly out-of-date approach to dementia? (I do wish they would do the exercises, but Sunrise needs to get a charismatic expert in there, with some sass and upbeat music, to get the ladies to “shake your groove thing,” rather than making it such a chore.)
     Life in a TV room is not what we agreed to pay $74,000 a year for. When my mother is engaged – and they are supposed to be engaging her – she perks right up, and is delightful. When she has something to do, her energy returns. But she is wasting away in there, going downhill fast, just like everyone else. 
The web site is full of cuddling. The Sunrise isn't.
      The website appears to have been written by someone who has never spent even five minutes at Sunrise. Several top people (administrators and senior aides) at the facility have admitted to me that they have never even read the website. They would be quite unsettled if they did, by the discrepancy between the joyful life the site describes and the reality of one numbing, endless day after another.  The web site is storybook fiction. Delirious dreaming. Wishful thinking. 
    Most importantly, it's deceptive packaging.

    Few institutions live up to their hype, but I don’t believe I’ve ever seen one that fell so far short.  

PETTY COST-CUTTING AND CRUEL DISRESPECT

    Here’s one simple example of the many snooty indignities to which dementia patients are subjected (I’m sure it’s different in assisted living, where people are credited with having Brains) : One day, I arrived before my mother was ready to go to the dining room. I knocked on the bathroom door to say “Hi!” She opened the door, and had shreds of tissue stuck to her face, obviously without realizing it. She had washed her face, but there were no towels provided in the bathroom, so she was using toilet paper to dry it. I thought there must be some mistake, so I left briefly to find an aide.

    “Oh we only let them have towels on shower day,” the lovely young certified nursing assistant (CNA) said. “Otherwise, they might use too many. Some residents tend to abuse privileges.”

    I was appalled. Privileges? Abuse? Just throw everything in the washing machine, ladies. We’re spending a fortune to live here.

   At the assisted living facility where my mother stayed for two months, there had been a linen closet fully stocked with clean white bath towels, hand towels and washcloths. They were not abused! Now my mother had no washcloth for her “sponge baths” between showers, no hand towel to use after toileting, and no bath towel if she decides to take a shower on her own.

    This was not the first complaint I registered with the honchos. It was about the 200th . They roll their eyes and say, “There she goes again. Now she wants towels!

   

 


THE MULTINATIONAL CORPORATION VS. “YOUR LOVELY NEW HOME"

    Sunrise Senior Living, a McLean, Va.-based company, employs approximately 30,000 people. As of April 2014, it operated 290 communities in the United States, Canada and the United Kingdom, with a capacity of nearly 27,000 units. Sunrise “offers a full range of personalized senior living services, including independent living, assisted living, care for individuals with Alzheimer's disease and other forms of memory loss, as well as nursing and rehabilitative services.”

    Until 2013, Sunrise was a publicly traded company (NYSE:SRZ). Although its gross annual profits exceeded $40 million, it was not meeting growth expectations, but a recent recapitalization “repositioned” the firm to maximize profitability.
     In 2014, Sunrise became a senior living company that is majority-owned (76 percent) by another senior living company, Canada based ReveraSunrise finalized a deal with Revera Inc. and Health Care REIT, Inc. (HCN).  Revera has 240 senior living facilities in the U.S. and Canada. The latter firm is an S&P 500 company and real-estate investment trust. 

SUNRISE REFUSES TO COMMENT ON INTERNAL UPHEAVAL
    In an analysis of this move, Steve Moran of the Senior Housing Forum saw some potential problems. "It is never healthy for a company to have rapidly changing top leadership, though sometimes it is necessary," he wrote, referring to previous management upheavals. "It can be a sign of bold leadership making things right, or a deeply troubled organization.  I have left messages with Sunrise looking for additional information, but as of the time of publishing this article I have not heard back from them (I had the same experience: "No comment"). As Revera leadership looks at Sunrise and sees Sunrise doing things differently, particularly if there are under-performance issues, there is likely to be a great deal of pressure on Sunrise to do things the Revera way. This ultimately means that the CEO of Sunrise does not really have the control, authority and autonomy any CEO of a big company wants and needs to be successful."
    The subsequent staff cuts and decreased quality of care speak for themselves.

The lobby is akin to a stage set. It provides a veneer of tasteful luxury.


GETTING TO KNOW YOU, GETTING TO KNOW ALL ABOUT YOU

    Sunrise’s intake assessment of my mother was an early indication that the facility was going through the motions of pretending to be thorough and conscientious and “personalized,” but this was just for show. The RD creates a whole, big, three-ring binder about your loved one, which is promptly filed away, except when they want to show off how deeply they know and care for each resident. The idea was that aides  would read this material in their "spare time," in order to help develop rich, familiar relationship with "their" clients, but in fact they have no time to do this, and -- contrary to Sunrise's website -- each client does not have a "designated care manager." They are in constant rotation.
    There is so much in my mother’s intake assessment that is not just off base but entirely wrong that I couldn’t conceive how it came to be. It claims she has four medical conditions, none of which is correct, and its list of her favorite activities is almost entirely fabricated. I can provide details. One particularly absurd error is “Eunice becomes irritated when asked questions.” I told the RD that she is irritated by condescending questions, but is otherwise a wonderful conversationalist, as everyone there has discovered.

    She does not “love Japanese people,” as I told the RD, any more than she loves people of every race and culture. Because Sunrise has several African-American and Hispanic aides, I felt that this was an important point, but the RD ignored my input. 
 
My mother applauds racial diversity, and she doesn't play favorites..
    This “individualized service plan” is supposed to “provide peace of mind for residents and their families that such detailed understanding creates personalized care and services necessary for the best quality of life.” It doesn’t. It just helps to expose the fraud that “the Sunrise experience” is all about.





MAMA BECOMES A PROUD REFUSENIK

    My mother refuses to have anything to do with the sort of “stimulation” offered by Sunrise. She had an instant aversion to the terribly bleak TV room in which slumped ladies were parked all day, as did I. It is quite Kafkaesque.She doesn't feel superior to those lifeless, neglected women: She just doesn't want to join that particular club.

    One afternoon, I took her to the dining room to talk for a couple of hours, and during that time, other “refuseniks” stopped by to chat, remarking on the stupidity of Sunrise “fun and games” and the depressed feeling they get just looking into that lifeless tomb that’s euphemistically referred to as “the TV room.” (To me, it’s the Living Dead room.) One dear lady with a sly smile said she is more engaged just watching her very large digital clock click from one second to the next.

    So if you were go to visit my mother after breakfast or after lunch, you would likely find her slumped in a chair in the hallway, dozing, or in bed, dozing, or in the empty dining room, dozing. Thank goodness her dozing has a fantasy life attached to it. Otherwise she’d have practically no life at all.

In her dreams, she's "free as a bird." / by SubCowpur

SECRETS AND LIES

    I have many objections to the way Sunrise treats dementia patients, but this one is the most disturbing: The institution characterizes all notes, records and log entries about residents as “privileged and confidential – for internal use only.” 

    It is strict Sunrise policy to deny POAs and/or primary family members access to this very important material. The dementia (“Reminiscence”) ward at Sunrise is a thinly disguised police state – with what they themselves refer to as a “chain of command” -- which denies families information to which they are legally entitled, and deliberately sugar-coats the day-to-day happiness and health of their loved ones.

    The most egregious example of institutional negligence, and one that expedited my plan to get my mother out of there, was the cynical, self-serving way in which my mother’s rape allegation was handled in October. I address this whole sordid affair in a separate article, http://kronstantinople.blogspot.com/2014/11/if-tree-falls-in-forest-rape-vs-dementia.html
    The incident brought out the “full metal jacket” approach to Covering Your Ass, as the institution promptly destroyed potential forensics evidence, belittled my mother’s sobbing assertions, and waited five hours to call me. They said, “She feels fine this morning, and she doesn't remember anything about last night, so do you think we need to call the police?” This episode – particularly the delay in notifying law enforcement -- “meets all the criteria of elder abuse,” according to a Salt Lake County detective.




    The ED and RD have lied to me and evaded my questions over and over again, but the worst instance of lying came during the rape aftermath. I had been told by the RD that after my mother got out of bed, the aide changed her undergarment and took the sheets and pajamas down to the laundry. “That’s destruction of potential evidence,” I told the ED



THEY’RE NOT STUPID – THEY’RE INCOMPETENT AND DISHONEST

    “We’re not stupid, Sylvia,” he said. “Everything in there was bagged and tagged and sent to the police for laboratory analysis. We know what we’re doing.”

    Being mindful of his history of fabrication, I called the police department and was assured by officials that no forensic evidence had been provided by Sunrise. The evidence was destroyed by Sunrise. 
    I am particularly interested in the fact that my mother did not report the rape until after she had used the bathroom, according to the “classified” internal report. Perhaps there was pain or burning or discharge that brought the episode back to life in her mind.

    Four days later, on the morning of my mother’s 96th birthday, I found a whitish, foamy, viscous material on her bed skirt and on the carpet next to the bed. After I informed management of what might well have been a repeat assault, the ED told me he removed the sheets from her bed and offered this material to the police, but they said it was useless because he had put it in a plastic bag. Surprise, surprise: He didn’t know what he was doing after all. (My subsequent phone call to the police confirmed that this was another lie: No evidence had been offered.) 
    The bag with my mother’s sheets in it remained in a large dog bed in his office, a well over a month after the incident. Oddly, the stained bedskirt and carpet were left as they were for more than two weeks. I have photos of them, taken 10 days after I discovered them. 
Look familiar?

    And even more odd: I saw the sheets on my mother’s bed from about the waist area upward. There were no stains. When George said, “Oh there were stains, all right," he must have been referring to the ‘below-the-waist’ area. For some reason, it hadn't occurred me to pull the bedspread all the way down. The evidence I'd already documented seemed sufficient for conclusive testing.



SLOUCHING TOWARD BEDLAM

    My mother’s medical, hygienic, nutritional and intellectual needs are neglected to an almost unbelievable degree by Sunrise.  She is not being “well cared for.” Sometimes an aide fixes her up properly, bathing her, prompting her to brush her teeth, moisturizing her painfully dry skin,  and putting her in some clean, crisp clothes -- but she often looks like a derelict: unwashed and disheveled, her hair a Phylis Diller mess, going to breakfast wearing the clothes she slept in. 


    We are paying to have aides either help her or prompt her to maintain her hygiene, but many of them seem to have given up, because she is “resistant.” (They are also overburdened by large caseloads, which the facility could remedy by forking out a tiny fraction of its gross profits to hire additional aides.) Many if not most dementia patients are resistant, but an “expertly trained” staff should know how to address this behavior out of respect for her and for her family.

     My mother is not getting the “continuity of care” that Sunrise acknowledges is so important to the resident’s welfare:  “The designated care manager is a role unique to Sunrise. A serving heart, the designated care manager is a compassionate and trained caregiver who consistently cares for the same residents in their suites and throughout the community,” the website says. This is pure bunk. A total lie!

    Besides the fact that there are three shifts, there are also a number of aides (perhaps all of them) who only work 3-4 days a week. Caregivers are not assigned to the same residents each week; they are obviously rotated. There is no continuity of care – this is just one more of Sunrise marketers’  “special effects.” My mother doesn’t know any of them – it’s all a blur. And all those photos of an adorable young caregiver snuggling up to your loved one and looking through scrapbooks or just enjoying some tea and sympathy are yet another Fantasyland fabrication.  

"Fantasyland" / by Melanie Taylor
I don't recall seeing even one instance of a caregiver sitting down with a resident to chat or just enjoy looking out the window. I also don't recall ever seeing physical affection being shown by an aide, despite all the cuddly photos on the website. While I can imagine that there are complexities regarding this, I have hugged and kissed pretty much every lady there, and they seem to melt with pleasure. I believe they are desperate for human touch.

JUST GO RIGHT IN AND DO WHAT YOU PLEASE: THAT’S THE SUNRISE DIFFERENCE

    I have been concerned about lax security from the day I moved my mother’s belongings into her tiny bedroom. There are no locks on the doors, which seemed dangerous and inconsiderate to me. The outer door, which leads to the two-bedroom “suite” can be locked, and “The NOC (overnight) aides try to remember to do that after each bed check,” one employee told me.

    The Sunrise website says, “The most basic human need is for safety and security…to give a person with memory loss a feeling of well-being.”
Give her a lock and key, you fools.
     There are two men who I have found repeatedly in my mother’s room when she was not there. Both have several times forcefully tried to follow us into her room. I tell them firmly to leave – that “this is for women only.”

    Most recently, on October 31, I was having such a physical struggle with one tall, imposing man -- who was successfully winning the battle to push the door open as I pushed back – that an aide heard the commotion and hauled him away.  

THE ROVING PERILS OF TESTOSTERONE

    I have found another man, pictured below, in my mother’s room three or four times, and he has followed us into her room on other occasions. When I took these pictures, on Oct. 14, he had been trying to open the suite next door. A small, short-haired woman appeared and told me, “Someone was breaking in!” I told her to lock her door again, and that I was taking photos. This is the same man who told me a week ago, “You are a very pretty lady. I think I won’t talk to you anymore.”

    Here he is, looking around my mother's suite-mate's room, and then rummaging around my mother’s room. He disappeared when I was distracted by another concerned resident, and when I walked into the room, he was lying on the floor, next to her bed:






It's not his fault. He doesn't even know where or who he is.

SEX, MAYBE. LIES, CERTAINLY. VIDEOTAPE: I WISH

    But there is chronic lying about pretty much everything. Time after time, when administrators are proven to have lied, they refuse to acknowledge it. Their rationales for various strange policies change from one day to the next, and are almost always silly (“The reason we don’t have fruit bowls out {which they do in assisted living downstairs} is that someone might hoard the bananas and make himself sick.” “The reason we don’t offer muffins {as they do downstairs -- heaps of scrumptious baked goods} is that some people are diabetic.” “The reason we don’t have music is that some people are hard of hearing.”) Some people in assisted living have diabetes, too, and many of them are hard of hearing.

    One of the ED's most desperate lies, which he used as a pretext to ban me from the facility, was that “Several families have written letters to headquarters complaining that you loudly discuss your sex life in the dining room, causing distress to residents.”

    I had become quite acclimated to George’s chronic fabrications, but this one beat all of them so far (even worse ones would eventually be tossed into the ring of fire.)

And it burns, burns, burns: The ring of fire.
    My response was: I have no sex life, and haven’t for decades. If I did, I wouldn’t discuss it loudly anywhere -- certainly not in a medical facility. And why the hell would families write to McLean, Va., to report this, instead of coming straight to you, Mr. fancy-pants ED? Isn’t that insulting to you? I asked him to provide me with redacted copies of these so-called missives, but he refused to let me see them. The reason is obvious: They don’t exist.



IRONICALLY, SUNRISE KEEPS YOU IN THE DARK

    I have repeatedly asked to view the daily aides’ logs, so I can get a fuller picture of how my mother is feeling, behaving and spending her time when I’m not there. This request has been evaded by both the ED and RD, which certainly strikes me as suspicious. I can only imagine what details these notes must contain that they don’t want loved ones to read. I regard these notes as our property, just as our medical records are our property. We paid for them. They aren’t supposed to be a secret. We have a right to know what our loved ones are doing and how they are feeling when we aren't there to be their watchdogs.

    To me, this policy alone is an adequate reason to stay out of this facility. It is an outrage.
Dear Sunset honchos: What are you hiding?
     I mentioned to one aide the refusal of Sunrise to let me review the aides’ notes regarding my mother, and her reply was that “all the notes about everyone are mixed together in a jumble. We don’t, like, have a page about each resident.”

    Why the hell not? It seems to me that it would be enlightening for everyone involved if a resident’s progress and problems could be readily reviewed. Maybe this “jumble” is the reason that the RD admitted she had been unaware for three weeks that my mother had been frantically packing up all her things each night so she could move back home the next day. (she is still doing this, at least some of the time, and the aides have to unpack them, if they have time, to restore some semblance of order in her room). And no one has taken the time to address this very sad scenario: of a frail, desperate, heartbroken woman who is up in the middle of the night, plotting her certain return to the home she loves so much.


She dreams about heaven: her home.

GRUMBLE IN THE JUMBLE

   Maybe the “jumbled” approach to record-keeping is why I found out well after the fact, in a casual conversation with an aide, that my mother had been running a fever weeks earlier, when a nurse dismissed her intense abdominal distress, which she characterized as "a passing thing." I wasn’t informed for another three weeks about the result of an abdominal X-ray I requested, even though the report was provided to Sunrise less than 24 hours later.

    The Reminiscence director reiterated that there are no notes maintained by the aides on each patient, reflecting that person’s mood, wellness, expressions of satisfaction or frustration, etc., during that day’s shift. Only “unusual occurrences” such as falls or sudden illness are reported, she said, contradicting her own aide’s explanation. These are “confidential” and "for internal use only," just like everything else, only more so.
"Falling" by GodSlayer.
    In some cases, residents’ families are notified about these “occurrences,” but the institution minimizes their severity. For example, when I was notified that my mother fell in her closet in the middle of the night, I wasn’t informed that she had lain there for some time, collapsed on top of hangers, shoes and a laundry basket. Her legs were severely bruised, and she re-injured a shoulder that had been wrenched in an earlier collapse, which I would never have known if an aide hadn't whispered it to me. In the closet, she was crying and calling out for help, but no one heard her.

  



IT WAS JUST A LITTLE RAPE THING -- SHE’S ALREADY FORGOTTEN ABOUT IT

    Another example of how important it is to have access to aides' logs: I received a call from the ED informing me that my mother alleged she had been “raped and beaten” at 4:30 a.m. but that she was “fine now, and has no memory of anything happening to her.” He suggested I notify the RD if I wanted the police to be called. Of course I wanted the police to be called! Five hours ago, you morons! (I have written about this incident in detail: http://kronstantinople.blogspot.com/2014/11/if-tree-falls-in-forest-rape-vs-dementia.html)
     I was determined to see the aide’s report, despite the strict “confidentiality” rule.

    I was so fumingly persistent in my demand to see the report on my mother’s alleged rape, that staffers finally – uneasily and with great fluster, muttering and claims that the Xerox copier wasn’t working – let me have it. 



    It shed much light on the whole affair, particularly in its description of my mother’s crying, her persistence in trying to get someone to believe her, and her ultimate anger at the aides’ lack of concern. “She said she doesn’t trust us,” the aide wrote. From the ED's description, I had no idea that this episode had been so dramatic. He essentially said, “She said she was raped and then we put her back to bed, and now she's her usual delightful self."

    It’s easy to see why Sunrise wants these documents locked away. It is highly incentivized to keep any negative information from residents’ loved ones. We are left in the dark about how our parents are really faring. We have entrusted them to an overseer who is not trustworthy.



WELCOME TO LA-LA LAND, WHERE LIFE IS WONDERFUL, ALL THE TIME

    The ambiance at Sunrise combines a faux elegance with a Disneyfied cheeriness that makes it clear you’re not in Kansas – or even America – anymore. The front-desk clerk is a “concierge.” It is Bizarro World, and the longer you’re in there, the more you feel that you are being chemically altered, as you might feel in a gambling casino, cathedral or immersive aquarium. The artificiality of everything is extremely unsettling.



The Sunrise atmosphere makes you wonder where you are and what you did 
to deserve this isolation. At least the fish in the aquarium are real. Sunrise is unreal.

    You are in place of strawberry-scented air, where everything is overdone: the framed prints, the knickknacks, the wicker, the velvet, the carved wood, the cute “sitting areas,” where no one ever sits, and the facility’s much ballyhooed “signature fresh floral bouquets.” 

 
No one ever sits here because it's a restricted area.

 
The famous headless bride.
Knick-knacks galore attempt an aura of reminiscence.
These large, beautiful bouquets fill every available spot, but they are not fresh. The flowers are fake – silk and vinyl – and they offer a helpful metaphor for understanding the Sunrise experience as a whole. 

They look genuine, but so does the smile on the RD's face.
    It is a highly stylized, expertly manipulative “luxury” environment, until you go upstairs to the Crazy House, which, more than anything, is a velvet-gloved meat grinder: You plop in, money pours out.



THE SMILEY-FACED COVERUP

    I was taken aback when I came across online message boards regarding “the Sunrise experience.”  What startled me was the rage, resentment and disgust that were expressed by employees, ex-employees and residents’ families from around the country. Their experiences are far more egregious than ours have been, but one observation – which was clear to me from Day One – is that Level Three aides are so overworked, it is essentially impossible for them to provide the quality care they believe is essential to fulfilling their job description. They are rushed. They are exhausted. There is not much time for either compassionate or personalized care, even though I think most of them really would like to provide it. They say they are required to to maintain a “Stepford wives” mask of positivity and enthusiasm, no matter what the appropriate demeanor might be.

Stepford wives are obliged to sustain a cheerful demeanor and not to question authority.
     Sunrise is described as a “cult” by many of the aides who post comments on message boards about this multinational corporation, which is so well-rehearsed in putting up a fabulous fa├žade to prospective customers. Their clear goal is to relieve families of their guilt over institutionalizing a parent or spouse by presenting life there as full of pleasure, safety, luxury, variety and companionship. 

    In online discussions, the aides refer repeatedly to this imperative, which is regarded as a way to keep residents’ families “out of the way,” as one of them puts it. Aides also refer over and over again to poor sanitation, neglect, and abuse that is never reported (Our Sunrise facility seems clean, but there is no hand sanitizer anywhere, and there's incontinence galore). It is a “fireable offense,” more than one aide said, to say anything that is “off script” or might cause concern among family members.  

"Your loved one's days will be filled with stimulation, affection, and personalized dementia therapies."

A SLEEPYTOWN NIRVANA

    The Happy Village scenario is re-emphasized regularly in “intensive training sessions,” where aides are ordered to adhere to the Sunrise playbook, in which all residents’ families are assured by all staff members, all the time, that their loved ones are happy, cheerful and having beautiful days

One lady has a baby doll --- her only consolation, except for ice cream.

    In fact, they are basically slumped over, snoozing, most of the time. If you walk through the Reminiscence floor at Sunrise, the only evidence good cheer you are likely to see is from some of the aides, and a few quirky, irrepressible, irascible, funny residents, who have managed to maintain modicum of autonomy and fearlessness. The message boards depict Sunrise culture as paranoid, self-deceiving, controlling and byzantine. I agree.

    My mother said, “I would rather be dead than stay here.”



THE MOST JEKYLL-HYDE MAN I’VE EVER MET

    The ED of Sunrise at Holladay, George Wright, is a prim, restrained, formal gentleman of Scottish descent. He is trained as a psychiatric social worker, which makes him seem promising as a human being, but not necessarily as an administrator. He is said to have little  knowledge about "what really goes on" in his institution. Most of his time is spent at his laptop, doing god knows what. Periodically, he does a brisk "walk through" of the premises, but he appears to be quite irrelevant -- and happily so -- to the details of life at Sunrise.

    George Wright is a compassionate man in some respects. He understands suffering, and he's done plenty himself. He respects my relationship with my mother in a deep way, which I appreciate, But he is defensive, paranoid, proud, ruthless and volatile. He has a vaguely Nixonian quality. He lies with such ease that it is breathtaking, and he lies when it’s not even necessary. It's like a tic. It is his blatant, desperate fabrications that form the basis of my sisters' petition to have me stripped of my powers of attorney. Thanks to him, tens of thousands of dollars -- money that my father and mother worked so hard to earn and save -- are being spent to wage a fight against me.
 
"There's no need for sarcasm. I and my people know what we're doing."
    It takes only the slightest “tone” in your voice to get his upper lip spouting perspiration and his hissing mode to take over. A simple, genuine question can cause you to be accused of “sarcasm.”

    The ED goes into panic mode quite readily, to protect his empire and his status. My first experience of this was the first time I met him. He had given me a contract for me to read in advance of my mother moving upstairs to the “Reminiscence neighborhood” (what a euphemism), and when we sat down, I said, “Sir, this is the wrong contract. It doesn’t apply to us.”

    He said, “It most certainly is the right contract.”

    “It is the wrong contract,” I said, quite pleasantly.

    “It is NOT the wrong contract – just look,” he sputtered. He began reading the first page aloud to me as if I were his little girl. And then it hit him.

    “This is not the right contract!” he declared, jumping out of his seat and dashing out of the room. I suppressed a laugh. His intern said, “He’s not mad at you, Sylvia. He’s just embarrassed.”

    “I would think so,” I said. “But I’ve made way too many mistakes in my life to judge him. I feel sorry for him.”



THE RUTHLESSNESS OF 'REMINISCENCE'

    The RD, DeAnn Jansen, is perhaps even scarier than the ED. Her sweet, breathy voice softens the impact of her fierce enforcement of Sunrise policy. Her tone is soothing, and she oozes understanding and tenderness. I think she probably does have quite a bit of genuine understanding and tenderness, just as her boss does, but in both of them, their loyalty to the corporation, and to keeping their jobs, are  paramount. The RD makes you feel that you are being "heard" and respected when you talk to her.  It is only later, when you learn what she has said about you, or what she has promised but failed to do, or what she has done but will firmly deny, that you realize how treacherous she can be. 
    My mother once told me, “I think they have spies here,” which sounds like a typical remark that a dementia patient might make – but I agree with her. Sunrise is a huge corporate entity, which is run like a totalitarian regime, with much whispering and subtle manipulation. I believe the RD is the overlord of this spy network, which enlists every aide to report whatever snatch of conversation she hears that might prove "problematic" or "not helpful." I believe the RD maintains a dossier, even if it's only in her head.




THE BREAKFAST CLUB

    My daily breakfasts with my mother were a joy. She remained generous, poised, compassionate, observant, and insightful, even as her short-term memory dissolved. Her sense of humor actually seemed to loosen up as dementia freed her from her somewhat formal bearing. Now, she was allowing herself to slouch a little bit, and burst out laughing when I said something silly or outrageous.



    The other ladies at our table laughed as well. These were the same women who had looked like corpses or gray wax figures in the Living Death of the TV room, but when I had the chance to connect with them, I discovered that there was still a lot of “there” there.  Before long, I knew most of them by name. I usually forgot that they had dementia. A few of them were quiet, gentle souls, but many were surprisingly wry, cynical and even subversive. My kind of people! I asked them questions about their lives, teased them, embraced them, brought them refills of coffee, and complimented their hair and clothing. I told them crazy stories about my New York life and my newspaper years. 
    I told them I was hatching a plot to “spring” them from this joint in the dark of night, enlist muscular young hunks to carry them to a barge, and float down whatever river we could find to reach our own island, where we could live freely. "Let's be naked!" one of them suggested. They were psyched. “Count me in,” the irascible one said seriously. The others added: “Me too!”

   Uh oh, there she goes again, being disruptive.



THE DEVIL WEARS MEGADETH, AND GIVES HUGS

    I always got up and wandered around the dining room, kissing cheeks and stroking hair and asking how the ladies were feeling. If they wanted another piece of toast or a cup of hot chocolate, I got it for them. Never, since high school, have I gotten so many compliments or questions about what I was wearing. These “demented” people were especially curious about my T-shirts. “Let me see what it says,” they would say. “What is MegaDeth? What does “Rock the Casbah” mean? What is that symbol all about? What a pretty dress!”

     “You should work here,” one dear lady suggested.

    “No thank you!” I said, giving her a little punch in the shoulder. She knew I’d either get fired, or tear the whole place down and start from scratch.

    One day, I learned something important. I was a bit late, so my mother and everyone else were already in the dining room. I stood in the doorway, looking for Mama, and noticed that there was no interaction going on, just the bustling of the aides carrying plates of food. At each table, the women sat silently, looking down, or across the room, or out the window. I realized for the first time that it was my presence that accounted for our lively mornings.

    I reported this to management in a detailed email, telling them what a difference it would make to have some “facilitators” at each table during meals, whose job it would be to engage the ladies in enjoyable banter – especially since they would soon be hauled into the the dungeon of the TV room to vegetate until lunch. I had no doubt that our raucous and/or sad and serious dialogues were engaging their brains.

    The response was typical: No response.
Even in her loneliness and pain, she remained a 96-year-old beauty.
 
She pleaded to be rescued and taken home.



OH WHAT A BEAUTIFUL BREAKFAST: PORK AND SUGAR

    The response to my complaints about the breakfast itself was only slightly better. A typical plate contained about three-quarters of a scrambled egg, bacon and/or sausage, a toaster waffle soaked in syrup, a slice of white toast, limp with jam, and a slimy slice of canned fruit. The “appetizer” was a small bowl of very creamy oatmeal that had at least two tablespoons of brown sugar plopped into the center. Once in a while real fruit juice was served. Usually it was obviously the cheaper “juice drink,” which consists primarily of water, corn syrup, flavorings and some real juice. Eventually, what was most often served what was euphemistically dubbed “vitamin water,” which was something like diluted Kool Aid, a pale coral color, with no real juice whatsoever. Not until I requested it were milk and water provided, both of which my chronically dehydrated mother gulps right down. “They’ve put sugar in the milk!” my mom said. I asked that she be served unadulterated milk. There I went, being a  “chronic complainer” again.
TAKING SWEETNESS WAY TOO FAR
    When I asked about all that sugar, the ED said most patients need to gain weight. I agree: they are frail. But there are empty calories (sugar) and nutritious calories (nuts, avocados, olive oil, goat cheese, bran muffins). I guess they must cost too much. Coffee refills are not offered, except when I irritate the staff and carry the pot around myself. Almost everyone wants more coffee. (Sunrise serves decaffeinated coffee, even though caffeinated coffee has shown “breathtaking” potential for staving off dementia in healthy adults, and for slowing the progression of cognitive impairment, according to studies cited by the New York Times on June 6, 2013. The statistical results, based on consumption of at least three cups of coffee daily, "show the kind of effectiveness you rarely see in any pharmacological agent of any kind.")
    My first of a bazillion complaints about Sunrise was that the menu called for fresh fruit, and all they served was canned fruit. The ED was livid when I mentioned this.
     “We do not serve canned fruit!” he said. “There is no canned fruit in this institution!”
     I went back upstairs and filled a cloth napkin with the canned pears and grayish-yellow slices of pineapple and mandarin oranges that residents had left on their plates. I put it on his desk.

    He leapt to his feet. Instead of facing facts, which I have never seen him do, he ordered me to have a meeting with his food-services director.

   “You have a meeting with him – it’s not my job,” I said, sashaying out the door.

    The next day, and from then on, a medley of fresh honeydew, cantaloupe, grapes and pineapple was served. I think this was one of only three victories I’ve had, despite my all of my well-intentioned criticisms. Another one is that my mother is now served whole-wheat toast rather than white, and there is just a sprinkling of brown sugar in her oatmeal, instead of a huge mound.

   (When I told the aides that I believed all residents – even ‘demented’ ones -- should get fresh fruit and whole-grain toast, the ED angrily accused me of making his staff “feel like idiots.” I don’t believe they feel at all like idiots. If anything, I bet they think I am idiotic for criticizing a successful, established institution. But certainly low-sugar, high-fiber, whole grain foods should be the default choice. If someone wants Wonder Bread, let her have it.)



THE FRESH FRUIT IS GREETED WITH OOOHS AND AHHS

    When the beautiful, colorful fresh fruit was served for the first time, the pleasure was palpable throughout the dining room. A lady at our table said, “I wish it had banana in it too. I haven’t tasted a banana in two years.” I began bringing one from home each day to slice into her Cheerios, but I was told to stop. (Before I was reprimanded, two other ladies asked where I was getting the bananas, so I brought some for them as well. They seemed quite thrilled.)

    Although Sunrise claims to be concerned about diabetes and nutrition generally, its staples are white sugar, white bread, white pancakes, white French toast and white waffles, as are white rice and white potatoes. It is generally accepted not only that whole grains are more nutritious and higher in fiber, but also that white foods are processed by the body almost exactly as if they were pure sugar.

    “The Sunrise Signature Dining program is a hallmark of our commitment to champion quality of life for all seniors,” the website says, explicitly referring to high fiber meals and a “gourmet selection” of seasonal items tailored to “the unique nutritional needs of seniors.” This is pure hype. Using empty calories to “fatten up” their residents ignores nutritional needs and the dangers of insulin resistance, which can cause diabetes and a number of other serious conditions.

    As a result of Sunrise’s low-fiber institutional diet, my mother – who has always had excellent bowel function – is now chronically constipated. She has had several episodes of severe abdominal cramping, and I have little doubt that it was backed-up, hardened stools. A few days after she was admitted to the hospital on Nov. 15, she began pouring heaps of blood clots out of her rectum. The institution had failed, for a full week, to diagnose and treat what was clearly an acute episode of delirium. Instead, they treated her with dangerous opiates and sedatives, causing extreme constipation. She had been trying to dig the impacted fecal material out with her fingernails, and had severely abraded her rectal tissue.
    Because Sunrise failed from Day One to respond to my pleas for a urinalysis, the delirium continued. Ultimately she wound up in the emergency room, severely dehydrated (another failing of Sunrise, which knew from day one that her major medical concern was chronic dehydration) where a urinalysis was obtained in about 15 minutes. She did indeed have a UTI -- the most common cause of delirium. If Sunrise medical personnel were even marginally competent, this could have been resolved within 8-12 hours by administering an antibiotic. Instead, she spent six days in the hospital, after her agonizing week of suffering at Sunrise. She had to be transfused from the blood loss. And then, two weeks after it this whole mess began, she was sent to a rehab facility, where she has plunged into depression and complacency. All because of clueless, arrogant, lazy Sunrise personnel. (http://kronstantinople.blogspot.com/2014/11/malpractice-and-malfeasance-ignore-her.html .)
    This is what has become of her: The joy, warmth, responsiveness, coherence and even dignity are gone:
In the hospital, she was in a delirious agony, due to Sunrise negligence.

She sits glumly in the rehab center dining room.

"Just go home -- I don't want any company," she says.
    (I met a lovely older woman in the rehab facility who complained to me that when she urinated, it caused a burning sensation. I urged her to get a urinalysis, to see if it was a UTI. She was given one that day, and she did have a UTI, and she was immediately put on antibiotics. Thus did she escape the terrible experience my mother had because of gross negligence at Sunrise.)
    Following the protracted bout of brain-damaging delirium, and a week in the hospital, and now two weeks in rehab, my mother is a changed person. She is no longer affectionate, warm, charming and funny. She is negative, defensive, contrary and contradictory. She is dizzy with exhaustion and confusion. She often puts her hands over her face, acting as if she needs to vomit. 
     We no longer are able to have conversations at breakfast. She resents or discounts everything I say, rather than responding with her usual interest and insight. Her angelic face is hard and angry. She is more delusional every day. Her remarks are so bizarre it seems that she might actually still have delirium. She can't even finish a sentence, because she forgets what she intended to say, and then she gets irritated if you try to help her recover her lost thought. She loudly and vehemently rejects physical therapy that is intended to get her on her feet again. "Get out of here!" she yells at the therapists. "I don't want your help! Don't come back, either. I can't stand the sight of you people."    
    It is stunning what has happened to her. At this point, she has seemingly lost her will to live and her capacity for pleasure. She has essentially zero quality of life, and she's getting worse by the day. When I mention an activity she might enjoy, she says, "No, I wouldn't enjoy it -- and I don't feel like enjoying anything anyway."
     She seems resigned to remaining in a wheelchair. Everything is "I don't care," or "whatever" or "how should I know?" or "do whatever you want." When I told her there is renewed hop that I can take her back to her home, she said, "It doesn't matter where I am. Just leave me alone." 



YOUR LOVED ONE WILL DINE ON LUSCIOUS GOURMET FARE!

    The gourmet food Sunrises claims to provide is portrayed in the photos below. I guess it makes families feel less guilty about dumping their loved ones into an institution if they believe it’s like a fancy resort, with bright, fresh, beautifully arranged and garnished delicacies – one sumptuous feast after another. I have never seen anything remotely resembling these photos. 






    Lately, the food has been looking and smelling better but it is nothing like the “gourmet dining” that the website promises. These photos are laughably misleading, at least when it comes to the dementia ward.



UPSTAIRS, DOWNSTAIRS

   Sunrise discriminates against its dementia patients. It takes advantage of the fact that they can’t remember what has been done to them or what hasn’t been done for them. Nothing about the “Reminiscence Neighborhood” is as pretty, warm or welcoming as are the two floors dedicated to assisted living.

    Downstairs, where the “real people” are, bouncy old-time music wafts through the hallways, putting pep in people’s steps. They have an elegant dining room – with an unhurried, uniformed wait staff, a classy menu and graceful service. 

An air of warm elegance characterizes the dining room where the "real people" have a choice of entrees and side dishes.

     Or, you might prefer to peruse the bounteous buffet, which offers a choice of entrees & coffees, a fabulous array of high-quality, fresh tropical fruits, silver trays of unhealthy but enticing muffins and pastries, a selection of yogurts, a compote of stewed prunes…….I could go on. When I boldly walked in and liberated a few bananas and muffins and carried them to “those other people” upstairs, festivity erupted and management exploded.

    The “downstairs people” have bright, cheery “hydration stations” with a variety of cold and hot beverages always available, as well as bowls of fruit, cookies, energy bars and even an old-fashioned movie-house popcorn machine and jukebox. In contrast, the "other people" upstairs are permitted two "hydration breaks" a day, at which they are given a small juice glass of that sugary so-called "vitamin water." 
    "If we left it out for them, they might drink too much," the RD told me. Too much for what? Like they're going to succumb to "water intoxication"?
     (The ED admitted to me that the vast majority of dementia residents are chronically dehydrated. The visual cue of chilled, streaming fluid would surely be a prudent move. The vast majority are also deficient in Vitamin D and B12, but these supplements -- which nourish the brain, are not provided.)


The downstairs ambiance reinforces well being, while the upstairs has a Crazy Town atmosphere. Note the fake flowers.

BE-BOP A LULA, AND I DON’T MEAN MAYBE

    Bouncy old-time music lightens life downstairs, and serves as a constant antidepressant. But the “other people” – those demented people – are cruelly underestimated as human beings capable of controlling themselves and making reasonable choices. No buffet for them! No muffins! No prunes – oh my stars, what if they ate too many! 
    These people have memory problems, to be sure, but they aren’t animals, and they aren’t stupid. I do think that living there is likely to make them become stupid, though, because the life there is truly spirit-killing.



NURSE RATCHET RISES AGAIN 

    Sunrise provides only the most cursory and strangely indifferent nursing care. The facility’s registered nurses seem clueless, and if any problem of any substance arises -- such as abdominal cramps or pink eye --  they summon a nurse practitioner, who is 40 minutes away, and always has a full schedule. It can take days to be seen by the NP, and weeks to be seen by the absurdly overextended doctor, who is also full-time Medical Director of Hospice for Utah.

    When I wrote to a Sunrise headquarters executive if it is company policy to withhold from family members information about falls, mood disorders, or bouts of feeling unwell, he didn’t reply.

    An aide told me several weeks ago that she had noticed a large new bruise on my mother’s leg after showering her. She asked how it happened, but my mother didn’t remember. She was limping, but not complaining. My mother’s arms are covered in huge purple bruises. I can't believe an aide did this to her, but I can't believe their explanation either.


The explanation: She fell. On the tops of her arms?
     “Wouldn’t the case managers’ log indicate if she had fallen?” I asked the aide. “Maybe – I’ll look,” she responded.  I never heard anything more about it.

    My mother herself told me that she had fallen out of bed one night, and lay on the floor helplessly until someone looked in on her and provided assistance (she either wasn’t wearing or has forgotten about her emergency pendant). Her neck and shoulder were injured. I was never informed by Sunrise. I have no idea if this incident was entered into the aides’ notes, but it doesn't matter, if we never get to see them anyway.

    It wasn’t until I arrived early one morning, and found my mother’s bed soaked with “weeping” from her legs, that I learned from the aide that it had been going on for several days. WHY WEREN’T WE INFORMED? I had been told months earlier that this was dangerous, and could lead to a systemic bacterial infection. When I approached the Sunrise nurse, she acted as if I were some wacko “helicopter daughter,” and said, “Sylvia, your mother has wet the bed.”
My tiny mother's legs were hugely swollen from vascular insufficiency.
     “She doesn’t pee out of her calves,” I retorted. It was not urine. Her diaper was dry. I get exhausted arguing with skeptical, somewhat resentful employees about issues that ought to be non-issues, just problems to be professionally resolved.

   My question remained: Is it Sunrise policy to keep families in the dark about physical, medical and emotional issues and events? In our case, it clearly has been.



THEY’RE NOT JUST LAZY, THEY’RE INCOMPETENT

    One of the registered nurses told me my mother was taking an antibiotic for shingles. “It’s an antiviral,” I told her. When I asked another nurse if she knew what might cause delirium besides the usual culprit, a urinary tract infection, she said no. Google, of course, did know.

    My mother is one of several people who have told me they have asked for medical attention and gotten none. If and when they finally do see one of the facility’s “skilled nurses,” they feel that their complaints are dismissed as trivial. One told me that the nurses act as if whatever is wrong with you is just “old age,” and I have sensed that same detached lack of seriousness and compassion.

    They do monthly “assessments” of each patient, which appears to be the only time they check vital signs. These assessments were not provided to me until I claimed the right to receive them. They are sloppy, contradictory, and cursory.

Sunrise nurses check vital signs once a month.
     One assessment said there had been changes in my mother’s skin, but didn’t say what they were, or if any treatment or “watchful waiting” was called for (I discovered for myself that my mother’s chronic dehydration – which also is not being addressed – had caused such dry skin that it was cracking and bleeding on her neck, back and sides.) The more recent report states that there has been no change in my mother’s weight, and then lists a seven pound weight gain. WTF? The assessments also indicate that my mother’s blood pressure has gone from her usual 114 to 134 to 167. This was merely noted, and filed away. No follow-up has been undertaken.

ASININE ASSESSMENTS

   The assessment notes indicate that my mother is becoming more responsive to people there, and to her new surroundings, and that she mentions going home less often (not to me), but says – in another section on the same page – that there have been no changes in mood or socialization.

     After several days of severe bouts of abdominal pain, a nurse finally came to my mom’s room, after I asked an aide to summon her. My mother was twisted sideways in the bed, her head was thrown back and her open mouth revealed a black tongue. The aide had tried to help her get up, but my mother screamed in pain. My mother was writhing, and there were tears on her cheeks. The nurse didn’t even touch my mother. She didn’t examine her upper or lower abdomen or listen to her bowel sounds. She blithely refused to provide simethicone, in case gas was the culprit, and left. I got a call from a night case manager days later, saying Dr. Holland hadn’t been able to make it in to pursue this now long-standing issue, but his nurse listened to my mom’s bowel sounds, and they were normal. “Michelle says your mom is fine,” the night case manager said.

    How absurd. She was not fine. Her pain persisted for days. She had a fever (which I learned long after the fact).



SICK, AND TIRED OF THE ADD-ON COSTS

    And anyway, why does a nurse need to be summoned from Ogden, 40 minutes away, to listen to bowel sounds, charging us $180 on top of what we’re paying to the Sunrise for “nursing care”? What is skilled nursing care? Is Sunrise not obliged to be a fairly high-functioning medical facility, given all the chronically ill patrons who reside there?

  When I asked the nurse, “What, exactly, is an RN permitted to do?” she seemed offended. My question was a sincere effort to gain knowledge. If “skilled nursing” can’t listen to bowel sounds, that seems pathetic to me. An experienced CNA could probably do it. And why are they not permitted to provide simple, widely used OTC products like simethicone? It seems that exaggerated fears of liability cramp Sunrise’s style considerably.

HERE COMES THE JUDGE(MENT)

    It didn’t take long for me to feel obliged to document what I was seeing in my daily visits to Sunrise. Family members rarely if ever visit their loved ones, and they must believe that the sales pitch, the contract, and the effusive Sunrise website provide an accurate picture.

    When I installed my mother there, I had done so as a daughter, not an investigative reporter. But during my daily 2-4 hour morning visits, I witnessed so much scandalous goings-on, that the old journalistic juices overwhelmed me. This was a story that had to be told. During the five months that I was permitted to visit the facility, I complained so relentlessly to both the ED and to corporate headquarters that I was banished by mid-November.

    
    From now on, I would have to take my mother out of the facility – to my house or to a restaurant – to visit her.

    I didn’t blame them for kicking me out. I was a constant irritant. They might have considered paying attention to my constructive criticism, rather than merely seething, but that’s their business, and I do mean Business. I asked questions and regularly pointed out, to whatever employee who was present, how deplorably Sunrise was failing to live up to its contract, its website and its verbal promises. The honchos were distracted, exhausted, pissed. They showed me the door. A heavy, fancy, stained-glass door through which a “Somewhere Over the Rainbow” glow poured.



THE FINAL SOLUTION

    One Sunrise resident confided that she copes with being confined there by “living inside my head.” My mother is using the same tactic. 
 
Even after seven months at Sunrise, my mother refuses to "live" at Sunrise.
In her mind, she lives at home, in the tasteful, sun-splashed world she spent 50 years perfecting. She fantasizes, dreams and talks incessantly about what she’s accomplished that day at home. Her dozing hours are filled with sunny images of working in the garden, cooking delicious meals and maintaining the living spaces that she loves so much. She asks her bewildered tablemates how their gardens are doing. “If you need any greens, let me know – I’ve got plenty!” she says joyfully. She believes that the Sunrise “restaurant” provides free food for old people. “I bet it was Michelle Obama’s idea,” she says. “That cute thing is brilliant.”

*************************************************

As promised above, here are a few alternatives to using a first-grade teacher's manual to prevent or slow the progression of dementia. I found these well over a year ago. I'm sure much progress has been made since then:


·        Research from Europe and the U.S. provides extremely promising activities that are being developed to slow or even reverse the progression of dementia. Tossing a balloon around the TV room was not one of them.

·        Why is Sunrise messing around with Bingo and manicures when there are so many more impactful alternatives? I have been staggered by how promising many of their discoveries are, and am gradually compiling the material into a follow up to my article on the use of mind-expanding drugs to treat this mind-shrinking condition.

·        Is Sunrise aware of the startling neurotechnologies, specially designed video gaming and virtual reality, and “villages” with an array of lifestyle options, that are already improving the lives of dementia patients.
    Hogewey, a pioneering care facility for some of Holland’s most severe dementia sufferers – is the first and only village for those with dementia. Its success has inspired governments globally, according to a study last year. Before moving to Hogewey, such patients would appear severely introverted or angry and highly dependent. They would be heavily drugged most of the time. At Hogewey, the patients (who choose from among seven lifestyle options) seem alert, engaged, happy. They go about their business in the make-believe village – buying shopping, getting their hair done, going to the pub.

   “‘Exergames’ (video games for dementia patients) have the potential to increase fitness by shifting attention away from some of the aversive aspects of working out, and toward motivating features such as competition and 3-dimensional scenery. The brains of the participants remained highly plastic, and training resulted in significant neural changes that were measurable with brain imaging,” according to the New York Times.

·        As far back as 2003, Flynn et al. documented that it is feasible to immerse persons with dementia in a virtual environment via immersive virtual environment technology. The authors reported in the journal Cyberpsychology & Behavior that persons with dementia felt a sense of control and enjoyed the interaction in virtual environments.

·        The Institutes of Robotics and Intelligent Systems is collaborating with clinicians of the University Hospital of Zurich to develop a "virtual reality environment"  -- known as Cognimat -- in which early dementia patients can recover their lost cognitive abilities.

·        Emotiv sells a headset that can read brain waves associated with thoughts, feelings and expressions. Muse, a lightweight, wireless headband, can engage with an app that “exercises the brain” by forcing people to concentrate on aspects of a screen.

·        A simple, 30-cent daily regimen of Vitamins B12, B6 and folic acid slows the loss of gray matter from 5.2 percent per year to 0.6 percent in those with mild cognitive impairment, a common prelude to Alzheimer's. Nothing produced by Big Pharma has slowed the progression at all.  
     "It’s the first and only disease-modifying treatment that’s worked,” according to A. David Smith, professor emeritus of pharmacology at Oxford University.

      A study published by the Journal of Alzheimer’s Disease found that two compounds in cinnamon may prevent the formation of the clumps and knots in the brain that are the hallmark of Alzheimer's. “Wouldn’t it be interesting if a small molecule from a spice could have such a profound impact?” lead researcher Nathan Graves asked.
    The same could be said for coffee, which has shown breathtaking potential for staving off dementia in healthy adults and for slowing the progression of cognitive impairment, according to studies cited by the New York Times on June 6, 2013. The statistical results, based on consumption of at least three cups of coffee daily, "show the kind of effectiveness you rarely see in any pharmacological agent of any kind."

·        Then there are nicotine patches, which appear to slow the progression of mild cognitive impairment (MCI) to Alzheimer’s disease, according to a study Georgetown professors and other researchers published last year in the journal Neurology. The research indicated that six months of nicotine patch treatment resulted in patients regaining up to 46 percent of normal performance for their age on certain long-term memory tests. The placebo group worsened by 26 percent during that time. A 2010 study had showed that nicotine improves short-term episodic memory-accuracy, and working memory. 

·