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Naomi  and  Ruth  
                                                                ...a case study of bias in action

Naomi was moving into the late stage of Alzheimer’s. She was Medicaid eligible, and Ruth had chosen the home-care option for her mother.  Naomi was receiving home-care hours and transportation services to an adult day-care program, which she attended five days a week so that Ruth could keep her job.  Medicaid also covered her adult day-care program fees. The plan was in accordance with the cost effective criteria set by Medicaid for the home-care option. The other alternative was nursing home placement which Ruth rejected.  Ruth worked full time and needed her job in order to insure her own future as well as meet costs of daily living for her and her mother.  She assumed full care responsibilities for her mother evenings and weekends.

Incontinence History:

Naomi had been in her early-stage adult day-care program for over 2 years. Although she was wearing an adult diaper for urine incontinence, she was still able to use the toilet with help.  The Program would drop her when she became bowel incontinent or if negative behaviors escalated, such as wandering, being uncooperative, and not working and playing well with others.  Bowel incontinence was already happening at home, but Ruth was dealing with it and so far it hadn’t occurred at the program. The director of Naomi’s adult-day-program was informed that these changes were occurring and assurances were given to Ruth that they would continue to keep Naomi while they worked with the situation. Naomi was described as a 'gem.'  This assurance gave Ruth a false sense of confidence about Naomi’s status in the program.

The Crises:

In this case the term du jour wasn’t used to make people feel at ease.  Its use was unprofessional, derisive, demeaning, and it did not reflect any of the panic, pain or confusion Naomi suffered as a result of her condition.  In fact Naomi’s embarrassment was never mentioned anywhere in the case notes.   Instead, the notes conjured up images that people could only respond negatively to and it was instrumental in building bias amongst the ancillary support people necessary for her home-care plan to work.  In fact I have never seen so much discussion about a person’s poop passed between people who were supposed to be a professional support system for this mother and daughter anywhere in my experience as a case manager.

After they finished talking about how ‘stressful’ the clean up was for them, and why Naomi should be in a nursing home because of the ‘stressful’ clean up, they began to question the emotional stability of Ruth. They utterly disregarded Ruth’s insistence that she was dealing with her mother’s incontinence and that it was not a barrier to keeping her home. Comments like ‘unrealistic,’ and ‘stressed to the max’ began appearing in the case notes about Ruth.  Meanwhile, all the ancillary services ground to a dead stop. Why make plans to accommodate an unrealistic caregiver for a mother who clearly belongs in a nursing home?  

It wasn’t until Ruth got copies of everyone’s case notes that she became aware of what was happening.  She was understandably outraged when she read that her mother’s diarrhea had been characterized as an "Explosive Bowel Movement".  Her first response was to question whether or not Explosive Bowel Movement was even a clinical term. (It is not)! The second response was to question the ethical conduct of the people involved in this case.  Her mother had been traumatized by loosing control of her bowels in a public place and the only picture ‘Explosive Bowel Movement’ evoked was to emphasize how personally traumatic the experience had been to the service providers. It was as if her mother ceased to exist as a human being from that moment on. She became ‘Something to take care of,’ instead of ‘Someone to care about,’ as evidenced by the ensuing pressure on the daughter to have her institutionalized.  One thing was absolutely certain, Naomi was stripped of the title, "GEM!"  

After the initial episode, Naomi refused to let the day-care staff toilet her at all.  The resulting case notes indicated that it was suspected that Ruth was abusing Naomi at home.  (They noted no bruising but they would keep an eye out for it).  I hope everyone who reads this is as appalled as I was.  Aside from the fact that there is no research to connect refusal to be toileted with abuse in an Alzheimer's person, there is the fact that their short term memory is so impaired it is questionable as to whether they are even capable of transferring a bad experience from one place, say their home, to another place, such as a day-care program.  

It is likely however that a dislike of certain personalities and places can be implanted in Alzheimer's people even into the late-stages of the disease.  I think it is significant that the toileting problems escalated at the day-care and not at home.  And, with no documentation (in all the ancillary services involved with this family), of anything but that of a concerned daughter actively seeking services to improve her mother's care, this was an accusation that was not only inappropriate, it's innuendo wounded Ruth to the core.  The only plus is that she wasn't reported to social services for abuse.  I think Ruth's finally asking to read the case notes had a great deal to do with that.  It is amazing what professionals write in their case notes when they have no expectation that anyone but other professionals will have access.  Ruth then asked for and received copies of notes from all the ancillary services involved in her mother's home plan.   It was interesting to note how the views of one influenced the views of the many.

Interpretation:

I contend that Naomi was abused, but it wasn't by the daughter, it was by the Adult Day-Care Program.  I'd like you to try to envision this scene through the eyes of Naomi.

• We have a woman who has been trying to hold in her bowel movement for, who knows how long, and suddenly she can't hold it any longer.  She is experiencing intestinal pain and spasms and she also can't explain her needs very clearly because of language difficulties and mounting confusion.  Apparently the assistants, while noting her agitation, never figured out her need to get to the bathroom until it was too late.  

• On the occurrence of the episode everyone in the program went into panic mode.  She was rushed into the ladies room which I'm sure increased Naomi's anxiety level.  She might even have interpreted it as being manhandled.  I'm assuming that in her state of confusion she was also a little frightened.  I don't doubt that the aides were commenting back and forth between themselves about the mess and the smell.   

• By the time they got her to the bathroom, their voices were raised way above normal.  They had to be in order to be heard over the sound of the faucets running full blast and the toilet flushing to get rid of the toilet paper they were using to clean her.  The highly tiled, mirrored interior of the rest room also added to noise volume by bouncing the sound and distorting it further.  

• And then there was the mirror.  I have to wonder if this woman was seeing an army of people pulling her clothes up, her pants down, and turning her about in the midst of all the noise and her own discomfort.  She was still quite alert and cognizant on many levels at this time in care but I don't doubt that whatever abilities she had, had shut down by then and she had to be feeling very disoriented and panicked herself.  She might even have thought she was going to be sexually assaulted.

• This program had made no provision for such an 'accident' for anyone in attendance subsequently there was no change of clothing on hand for Naomi.  The aides left Naomi alone for an unspecified amount of time while they went in search of more toilet paper, another indication of being unprepared.  Anyone who has ever cleaned an adult's poop knows toilet paper shreds on contact.  In fact new mothers reach for a baby wipe before they reach for toilet paper for the same reason.  By the time they returned, Naomi had gotten poop on the sink, the walls, the floor and herself in what I believe was a futile attempt to clean herself.  She was sent home wrapped in a blanket with most of her dirty clothing in a bag.  

• The aide who greeted Ruth upon her return home from work, was hostile, rude and condescending as if the whole episode had been Ruth's fault.  Ruth's mother was in a very agitated state and Ruth was expectedly upset herself.  When Ruth answered the aide back in less that 'June Cleaver' terms, the incident was reported as further proof of Ruth's potential abuse.  

• Apparently the only people not allowed to be upset by this 'incident' were Naomi and Ruth.  (The manner in which Ruth had been informed at work, the stress she experienced driving home, her concern for her mother, and the behavior of the aide were hardly things that might elicit annoyance).   Naomi wasn't properly cleaned until Ruth took care of it.  After Naomi was showered and dressed in her night clothes, and seated in her special chair in the living room, she uttered these two words to Ruth... "Thank God!"

Conclusions:

I find it disheartening that this staff was totally unable to see what they had contributed to Naomi's state during this episode and how quickly, how cavalierly, they were ready to accuse the caregiver of causing Naomi's reluctance to be toileted after the episode.  And Ruth's further determination to keep Naomi home in spite of all the urine and poop only led them to distrust her more.  If this isn't an example of poop bias I don't what is.

If the various professionals had spent less time obsessing about whether or not Ruth was able to deal with her mother’s bowel movements, and more time helping her coordinate the logistics of a transfer to another more comprehensive day-care program, little of the trauma this family experienced would have happened.  Ruth wasn’t even told such a program existed near their home, (which seems to be a significant oversight), a program that would have offered a more normal day for Naomi than the one they were ultimately faced with.  But since the transportation and the home-health aides, that were also necessary to make that local program viable, had been withdrawn, and with a Medicaid case manager whose  lack of experience with Alzheimer’s Disease left her immobilized, that program became virtually inaccessible to this family anyway.  Ruth took a leave of absence from work in order to reconnoiter.

The program Ruth finally located, through her own efforts, was near her job. She drove her mother to and from this program for over a year. Their day began at 5am and ended at 10pm, five days a week, which was a terrible hardship on both mother and daughter. The good news is that the car ride gave them some quiet time together and Ruth stopped dreading the ‘pick up’ the way she had at the other program.  The new program also offered Ruth respite weekend stays for her mother, dinner privileges so that Naomi was fed before her pickup time, and Ruth got information on care techniques, as well as emotional support.  There were no more complaints about Naomi’s behaviors and all the discussion about Naomi's bowel movements stopped. They simply dealt with it.  Naomi remained in home-care long after she became incontinent and wheel-chair bound as a result of the help she received from the new more comprehensive adult-day program.  

Ruth feels that she and her mother were victims of what amounted to an almost insidious obsession about her mother's poop, (an interesting response from service providers working with a disease group in which incontinence is inevitable).  But this was a program that had been rather successful at phasing Alzheimer’s people out before the late-stage problems surfaced.  What is most upsetting is that these were people Ruth trusted to understand the course of her mother’s illness and be there to guide  her.  But that is the problem people who haven’t had direct experience with late-stage Alzheimer’s often have, and that was compounded by the lack of preparation for a situation that should have been anticipated because they actively recruited an Alzheimer’s population for their services. They let their personal feelings of abhorrence get in the way of their function as professionals and it was demonstrated in how they related the incident to each other and in how they related to this family after the incident.  I recognize their response as bias.  I am sure they don't agree.  

In their defense, if one can be offered, they honestly thought they knew what was best for Naomi and her daughter.  Ruth was even given 'permission' to institutionalize Naomi, on several occasions.  What the professional helpers didn’t come to terms with is that it wasn’t their choice to make in the first place.

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