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

 

   

 

 

    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 prolonged campaign to improve conditions there. Over the next five months, I wrote dozens of emails to Sunrise staff -- 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 coporation that overwhelmingly values profits over patient care. Its executive director (ED) and reminiscence director (RD) strictly 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 Cutting-edge therapies are available, but Sunrise is content to stick with cheap, outdated methods.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." What drugs are you giving my mother? That's classified information.
• Its 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, weakness, dizziness, inflamed eyes, 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 her out of Sunrise. 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. 
• 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.

 

 

 

My mother's Sunrise bedroom.

 

 

 

 

 

 

 

 

LET'S MAKE A DEAL: GIVE US WHAT WE'RE PAYING FOR  

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.  
 

 

 

 

 

 

 

 

 

 

    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 finalized a deal with Revera Inc. and Health Care REIT, Inc. (HCN). Revera, a leading provider of seniors’ accommodation, care and services, which will enhance economies of scale and buying power. The latter firm is an S&P 500 company and real-estate investment trust. 

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

    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 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. 

    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.

    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

    This is not what we agreed to pay $74,000 a year for. When she 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 – physical and mental -- returns. But she is wasting away in there, going downhill fast, just like everyone else.

 

    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 “strict 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, 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. 

 

    “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. 

    Four days later, on the morning of my mother’s 96^th 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.

 

    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 give the aides some breathing room.) 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, exiting it, 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:
 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

    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.

 

    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.

    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.

   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.

  

 

    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 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.

 

    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.

 

 

    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.” 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. 

    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.

 

    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 façade 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.  

    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 ED of Sunrise at Holladay 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.

    The ED is a compassionate man. 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 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 RD is perhaps even scarier than the ED. She looms hugely -- with a bosom you could take a nap on -- as if she were filled with helium and ready to fly in Macy’s Thanksgiving Parade. Her high-pitched, breathy voice softens the impact of her giantess presence.

    She is drenched in makeup, fabulous clothes and blinding jewelry. Her tone is soothing, and she oozes understanding and tenderness. I think she probably does have quite a bit of 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 what a villainess she is. She has a Manchurian Candidate mode of operation.
    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.

 

    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.

 

    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 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.

 

    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 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.

    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.)

 

    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, 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. All because of clueless, arrogant, lazy Sunrise personnel. (http://kronstantinople.blogspot.com/2014/11/malpractice-and-malfeasance-ignore-her.html .)

 

    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.

 

   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 a classy 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 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.

    Bouncy old-time music lightens life downstairs, and puts pep in people’s steps. 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.

 

    Sunrise provides only the most cursory and strangely indifferent nursing care. The facility’s registered nurses seem clueless, and if any problem of any interest arises, 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.

 

    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.

   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).

 

    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.
 

 

 

 

 

 

Even after nine months at Sunrise, my mother refuses to "live" at Sunrise.

<>·<>·<>·“‘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.

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