Violations of Boundaries and of Social Norms

 

 

            The issue of “boundaries” and behavior governed by sociocultural norms are matters we seldom think about.  But attending to what happens with those with dementia makes these matters pop right up.  There are so many issues about boundaries and appropriate behavior that I will not try to be complete about what can and will happen.  

 

            As an aside, it is worthwhile to note that those of us have seen these events so often that we sometimes react to the events with laughter.  We do not laugh at the expense of person involved, only at the incongruity of these events.  You are eating ice cream at a dining table and the person next to you reaches over the top your bowl and scoops out a “handful” of ice cream to eat.  Such an event is not extraordinary in conjunction with dementia. But such an event is incongruous from a normal perspective.  Incongruity is generally what makes a joke funny, so these incongruous behaviors have made regulars laugh sometimes.  Nonetheless, from my discussions with our two children and others, few people seem to find any of this to laugh at, so… 

 

            Imagine that you are in this situation.  You are walking quietly down a long hallway.  You glance over at a man in a side hallway with his back to you, standing erect and still.  Strangely his arms and hands are centered below his waist; he stays steady and unmoving.  Then you notice a stream of, surely not urine, but it is.  And below is a small puddle of liquid, visible over the carpeted floor.  Aghast and fascinated, you pause to just observe; he is unaware of your presence twelve feet away and behind him, slightly to his left side.  The stream continues for a very extended time and the growing puddle seems a small pond of only slight depth; but shortly he is now standing within the pond, apparently oblivious to anything other than completing the process.  You walk off quietly, then chuckle as you retreat.  This did happen to me and I later laughed as I described to others in our group the enormous quantity of liquid released.

 

            The recurring clear-cut example of a boundary issue is what often happens when eating at a table with one or more people with dementia.  If someone else’s plate or drink is within reaching distance, the dementia person may eat or drink some of whatever is there, regardless of who it belongs to.  And if that person now eats food with their fingers (which happens, particularly later in the dementia process), they just pick up mashed potatoes or whatever with a hand reaching into the other plate.  That is certainly a boundary issue.

 

Eating often results in a considerable mess around the plate, in the lap, and on the floor.  That is the norm in the facility’s dining room, but is not normal in a public restaurant.  Those outside-the-facility places where have eaten regularly come to understand the mess; I’m drawn to places that know because they come to understand.   Still we caregivers can feel embarrassed about it, until we adapt to it as a regularity.

 

We previously discussed the incident where Beverly picked up a male resident’s coffee cup to drink, violating that boundary of what belongs to him at the moment.  She had no idea what was involved.  He was really going to strike her, as it was his cup of coffee. Fortunately a friend intervened.  He was aware that she crossed a boundary, but, given his anger, he was going to violate a more serious interpersonal boundary about aggression.

 

            Many residents also keep one or more (sometimes several) eating utensils when they leave the dining room.  These are returned to the dining room by staff or family members, so it is not consequential.  However, the problem has also occurred in restaurants.  Beverly & I have had more than one confrontation over leaving a restaurant with one or two utensils, like a fork and a knife.  She was upset with me for insisting that these belonged to the restaurant and she had to leave them.  She also took cups and glasses out of the facility dining room, but never did that from a restaurant.

 

            Boundaries are also an issue over any physical object in the environment belonging to someone, particularly clothing and shoes.  A shoe found out in the hall might be considered by the finder as theirs, even after someone showed the taker that it belonged to the person whose name was in the shoe.  Someone took Beverly’s fancy pillow cover (apparently right out of her room) and it was gone for weeks, eventually returned.  There were confrontations over wheelchairs, usually wheelchairs that had been deserted by their rightful owner.   Sometimes the owner later found their wheelchair with their name on it in someone else’s possession; disagreement ensued.  In the many months of her residency, Beverly may have only done this once, and that was to a man’s wheelchair while he was seated at a chair at a dining table.  When he got up to defend his property, a physical wrestling match took place at the end of which he was on the floor.  I do not know her take down method as I was late to the scene.  I only saw him on the floor and heard the story from a staff person.

 

  The occupation of rooms is a constant problem.  I often had difficulty finding Beverly because she had wandered into someone else’s room, found a bed, and then used it for a nap.  An incident involving a man who was hitting a woman happened simply because he wandered into the woman’s room and declared it was his.  She disputed his claim, making him angry enough that he struck her.  The only time I knew of a fight between two women was over whose room it was.  Phyllis (always pseudonyms) went into her room to find Joan on her bed and there was violence.  We heard the screaming and found Joan on the floor.

 

            Aggression was repeatedly instituted by Josh against Terry because Terry was regularly making mean/bad remarks about women.  Josh always stated something about the importance of correcting insults to women and followed that with a fist.  I personally saw Josh hit Terry on three different occasions and there must have been many more.  Fortunately these were minimal fights, quickly terminated by staff and without real injury to anyone.

 

            Physical boundaries you might consider normal are violated.  Bart consistently talked with various people, bringing his face and body to within less than 8 inches of the other person.  I, and others, found this to be uncomfortable and many others took it to be aggressive.  But there was never anything aggressive connected to it in my experience with him or from observing him.  I finally took this violation as nothing more than simply a violation of that physical boundary that we have around us, particularly face to face, that normally keeps people significantly farther away, say 18” or more between two people unless they are intimately connected.  I must say that conversations with him continued to be uncomfortable, but I learned to accept this violation and to have conversations under his condition.

 

            It seems plausible to say that Beverly’s behavior with other men represented boundary violations as well.  They were motivated by her caring spirit for other people and/or some “flirtation” with other men, but they represented boundary violations.  In normal society, none of us would drop the hand of our spouse, take the hand of another of the gender of interest and walk off, without even a comment on the meaning of that.  On several occasions, when a previously unknown couple (man and woman) arrived at the front desk, Beverly went directly up to the man, put an arm on his shoulder and started talking to him as if she knew him well. Typically the woman with him turned and saw this happening, watched carefully for a moment or two, and (I believe) figured that it was innocent enough, involving someone with dementia, so she did not react to it.  (Outside of a facility like this, such behavior would be difficult to contextualize and might be perceived by the man as uncomfortable/weird and by the woman as more threatening.)  And we would not engage with someone else of gender of interest (as Beverly did on several occasions) by rubbing their head for 15 minutes or more while their spouse looked on.  And, of course the recipients of the hand holding and head rubbing, accepted that; they too had dementia and were not bothered by such violations.

 

            Many boundary issues have happened with regard to clothing, generally taking clothes off.  It was somewhat ordinary to see a man or woman with nothing below the waist other than a “pullup.” (Complete nakedness below the waist was very unusual.) Previously I told the story of one man who kept his hand down the front of his pants virtually all the time; that issue was finally solved by some clothing arrangement that prevented his hand from getting inside his pants.  This is the man that I saw one day in a public hallway with his penis sticking out of his pants and handling it.  And one woman would regularly pull up the front of her blouse without a bra to expose breasts.  One day when she did that, another resident said, “Would you just quit flashing your boobs.”  The other resident of course recognized this boundary violation.

 

            And then there are toileting issues.  Residents have urinated or defecated in common space just about everywhere—hallways, activity rooms, even the dining room.  Notably there is a strong preference not to start that when someone is in the vicinity, though not necessarily to stop upon being observed.  I once turned into a side hallway to see a large man urinating on the carpet, as described at the beginning.  The amount was so striking that I laughed, as did others in response, while telling about it to our group.   Note, as I said at the start that the incongruity creates humor, even though it is strange humor. Staff were busy with cleanup immediately.  However, note that these occurrences are not every day.  Still staff intervene quickly and decisively when such events are observed.

 

            Then there are common violations in the context of social gathering.  Any family gathering for a party in a meeting room, often for a dinner or a birthday, was invaded by other residents who moved right into getting their own food and drinks unless there was an intervention.  Usually staff would tell them this was a private party for John’s family and ask them to leave.   And, failing effectiveness of a simple instruction, someone took them out somewhere else, using some form of “happy lie.”  Even a small gathering of a few residents and family members for a little ice cream was often invaded, so it was common to have that party somewhere like an outside patio where a locked door served as a preventative.

 

            And in a coming blog, there will be an extended story of theft of jewelry in a store, at a point in the disease when Beverly would be characterized as “early-to-mid Alzheimer’s.”

 

            Even so, for these various violations, most were not common in most people’s behavior, except for taking other’s food and making a food mess.  Many of these were not everyday events, especially bodily exposure & toileting in public spaces.  Even the physical boundary of coming too close only happened with the one man.  Still the fact that many of these violations happen tells us that this is a different world, one populated by people who have lost some control of the ordinary rules of society.  The brain regulates these behaviors and, as it deteriorates, there are changes.  A rule of thumb that seems to hold for the most part is that higher-order or higher-level functions are lost much earlier.  The more primitive functions (anger, happiness, and sadness; even sociality, interaction, jealousy) endure longer through the progress of dementia.  Rules about boundaries and other aspects of social functioning are certainly among the higher-level functions.

 

            Regardless of where your loved one with dementia stays—at home or in a facility—do not be surprised by such violations.  They don’t generally happen much in the early stages of the disease but will certainly come as the disease progresses.  

 

Further, if you are visiting a facility, do not presume that one event like this is a sign of a terrible facility, as someone stated to me following a visit to a facility they were considering for a loved one.  Of course, if these events are observed quite frequently, that is more likely a bad sign.  In Beverly’s facility, much of this is prevented and/or stopped quickly through appropriate intervention.