Re-evaluation

   The other day my mother had her hair done, her hairdresser telling me about different types of hair that Asians and Hispanics have, generally a coarser hair and hair that holds a softer curl longer (perm too soon --sooner than 4 months since the last one-- and you "over-process" the hair leaving it stringy and wiry, she said, the stuff a male rarely understands).  But more importantly she told me of people who talk to her about their parent or aunt or whomever who no longer needs to have their hair done, all mentioned to her as if that person didn't exist and being told that "she doesn't know the difference anyway" or "it doesn't matter to her."  All of this was usually done while that person being talked about was sitting there, she told me.  At first, I was shocked that someone would do that, until I began thinking about the facility where my mother was staying and the people she was staying with...people I found both engaging and interesting (if repetitive).  And yes, I could see me falling into a bit of that trap as I talked to some of staff members; nothing negative or demeaning mind you, but generally getting updates on her medical information or hearing about her status...and usually what I thought was just out of her hearing range.  Still, she would occasionally see me talking and question me about what I was saying...

   It's easy to do, really.  Someone falls out of our societal norms and we tend to quickly drop their status to that of an uncomprehending child.  Paralyzed or unconscious, disabled or raked with dementia...there's a tendency to lump them all into one basket and talk louder or slower or with less patience as if to wonder "why can't they understand" when actually the question should probably be reversed.  In my mother's case, I began to notice that many of the people she enjoyed having lunch with were pleasant and had stories...once they were asked.  Not always mind you, for some days a person just didn't want to talk.  Memories, dates, gifts, names, those detailed things seemed to all dissipate as quickly as steam; but still, I could laugh with them as I heard bits of their histories of growing up in Wyoming or of working as a teenager at a malt shop (I would usually bring in nostalgic candy such as Cracker Jacks --a caramelized popcorn that even I remember eating as a child probably because there was always a "prize" inside the box-- such treats initiating a world of brief discussion even if my mother privately squirreled hers away as if storing it for a cold winter).

   But the hairdresser got me thinking.  Had I been the one to have listened to those "in the know" who recommended she move here?  Did my mother really belong here?  There had already been a few hygienic issues at the facility which I had brought up with the proper channels, moving up from the person in charge (no action) then to the administrator above her two weeks later (tiny improvement) then to the regional director some two weeks after that (big changes).  But if it took me that long a process to get something as simple as proper housekeeping accomplished, what about those staying there who didn't have an advocate?  I began checking out a few other places, one of which told me that it sounded as if my mother was just "pleasantly confused" and not really a candidate for such a tight locked-down facility (my mother still nagged me about being "a prisoner" there).  I called in a new team, an evaluating nurse and a new director of a different memory care unit...and the testing began.  Now --full disclosure-- I tried to prep her with a few dates, even providing a written cheat-sheet with the day and the year and the month spelled out in big letters.  I would quiz her, then wait a minute or so, then ask her again.  And with a 50% success ratio I thought that she was doing well.  What date were you born?  What month is it now?  What's the day today?  They're going to ask you some of these questions, I told her, it's important to remember them.  She nodded, even as she rolled her eyes as if that was the secret to drawing up the answer.  Looking back, that was me being the guilty party treating her as if prepping a child for an audition...and all of it failed.

   The team arrived and were as nice as could be.  To my mother the dates were gone, vanished into a world of random numbers.  The year was 1916 she said which elicited a polite laugh from all (including her), then she confidently said that she meant 1960.   Okay, enough with numbers.  What season was it?  Winter.  Correct.  Spell the word "world" backwards (she nailed that one easily).  Redraw a picture of two overlapped hexagons (passed that one as well).  Make up and write a sentence (done, she was on a roll).  The results began to be tallied up, the medical questions now turning to me.  The note-taking slowed a bit, a few words were exchanged, then they looked up.  She didn't really belong here.  Her memory was simply "pleasantly confused," but she was not a flight risk, not a danger to herself, and in their assessment, she seemed more than aware of what was going on around her (gulp, so much for those conversations that I thought were just out of her hearing range).  She could be moved to a more open, more populated, and more "free" area, they said.  She could go.

   The stats of course are overwhelming.  57% of the population in the U.S. either know of have known someone with dementia or "cognitive decline," and that the average age of the person being cared for in the U.S. is 69 yet 14% of others needing full-time care are between the ages of just 18 and 49.  Also, says The Family Caregivers Alliance, the average age of today's caregiver is close to 50 although again, 48% of caregivers are as young as 18.   The definition of caregiver is "...part of an uwritten job description for millions of spouses, children and loving friends," said the president of AARP.  (But) "Too often, people's wishes are not honored, or even known.  Individuals and their families may feel like powerless spectators who don't understand their choices or can't assert their priorities."   Then came this from an earlier article in Fast Company advising businesses: Energize staff by clearly defining expectations and routinely offering positive feedback.  According to a recent study by Gallup, companies that engage their workforce see a 65% decrease in turnover, a 21% bump in productivity, and a 10% increase in customer ratings.  

   How did this all connect?  Perhaps the summation would be to simply not make assumptions.  To remain positive.  To engage.  To talk.  To look in the mirror.  To reverse positions.  To just acknowledge.  That person sitting there is still there, maybe not 100% and maybe far better or worse than others...but there.  In just over a week my mother will be moved; she will be exonerated and released from her "prison" and transferred to a new level of care.  It will be difficult for her, but in the long run better...I think.  Long term I can see the road ahead, the more socialization, the better quality of meals, the watchful eyes of more people.  But is that just me?  Am I once again overriding her and making assumptions even as I seek her advice and opinions in asking her what she wants?  Or are those choices and views that she's making now just destined to float away as quickly as the dates in her quiz?  Did she really improve or was it me that did the improving?  Had I been wrong all the this time?  It's a dilemma for caregivers, that of having to make decisions and sometimes tough decisions, second-guessing yourself as to who really benefits from your decision.  But I've discovered that while it might be good --perhaps necessary-- to be the judge, one shouldn't be the jury as well.  There's another whole set of decision-making going on out there and it might all be coming from that person just sitting there, just out of hearing range.  Sometimes they might be listening, sometimes not.  But one never grows tired of looking nice...ask your hairdresser.