Whenever I’m at my computer keyboard, the first thing I do is punch up my Pandora app; soothing background music is my creative narcotic of choice. Which eliminates present-day musical pretenders.
The fact that no one stands still and simply sings is one reason for my reaching back into the archives for tonal pleasure. Not to mention lyrics that bring back fond memories of the wonderfully harsh years of concentration camp and horsemeat. At this exact moment, it’s Perry Como’s rendition of “It’s impossible.” So appropriate for the column about to be written. And it’s not a lover’s lament.
Sometimes life stops to slap you upside the head when least expected. In my case it was 20 years ago when wife Margaret was set to enjoy her first day of retirement. Unfortunately ,it was also the day a neurologist at her alma mater, UCLA, informed us she was early stage Alzheimer’s. We had no idea of what that was and meant. The following 14-plus years were not pleasant or enjoyable. But enlightening, if that’s the right word to use.
While employed in Gardena, before 24/7 care was required, I figured there had to be others in my situation; in need of help and information. An initial gathering of interested parties numbered 32. Some had aging parents to care for while others had afflicted spouses. It was the initial gathering of a Nisei support group.
It was an opportunity to share personal stories with others who understood the physical and mental stress that never seemed to stop; asking questions that had no real answers, joined by mutual misery. Alzheimer’s today is the third leading cause of death in America and there is no cure. It’s not like cancer or heart disease; it is not talked about and has no public face or celebrity sponsors.
During the course of confessionals, there are always the voluble and over-talkers. It’s the quiet, reserved ones that you try to draw into discussion; odds are they have pertinent stories to tell.
I tried to get one lady to open up by asking the difference between caring for a male as opposed to a female. She demurred but called me later, explaining shyness and shame were reasons for her reticence. I guessed the sightless protection of a telephone also gave her strength. Not being professionally qualified to discuss care-giving techniques has never stopped me from being a combination psychologist/psychiatrist/man of the cloth. A precarious practice, I admit, but when someone is drowning you try to save them, no?
The lady told a tale of turmoil and quiet suffering. Not at the hands of her afflicted spouse, but from his family. The eldest felt she did not need assistance in caring for his brother, while the sister would bring manju once a week, visit for a half hour and leave after doing nothing but criticize. Though the clan was financially well off, there was no discussion of a care facility; she was it.
After several telephone conversations and seemingly some relief, we fell out of contact. [I found this to be true with all of my counseling, which numbered a couple of dozen over time. One by one they stopped calling; either a sign of success or abject failure. Or death. Eventually, I was counseling no one.]
In one of those “friend of a friend” situations, I recently got a call from another lady in distress. Would I please help her?
Somewhat out of verbal shape giving advice, I explained how time had passed me by and that a support group would probably be a wiser choice; that the days of bland seminars and worthless workshops must have been improved upon by now.
True, she agreed, but the referral had guaranteed I would give her straight answers and none of the one-size-fits-all information she got at public gatherings. She wanted a proven Sansei’s version.
With such an introduction, I could do nothing but mumble a humble “I’ll do my best,” correcting her on my Nisei status. [“Oh, I didn’t realize you were that old.”]
Time apparently hasn’t changed the plight of Alzheimer’s caregivers. Her sad tale was being last in the family chain and youngest daughter-in-law. A spineless husband, with an overbearing Nii-san, didn’t help matters.
Again, after pointing out the availability of more qualified professionals, I made several common-sense suggestions. Then blurted out without much forethought: I would be willing to attend a family conclave if it would help. [Inexplicably forgetting my one try at mediation wound up in near-fisticuffs.] She didn’t think it would happen.
Why summarize a story from the past with a current update?
The first caregiver is the mother-in-law of the second.
W.T. Wimpy Hiroto can be reached at firstname.lastname@example.org. Opinions expressed in this column are not necessarily those of The Rafu Shimpo.