Where Have You Gone?

    Yesterday saw me having another visit with my mother, a mother who it seems is slowly disappearing or at the least, transitioning into someone I've not known before.  She is still quite coherent and quite alert, even as she tells me that she can't remember where's she's put things (this especially pertains to things such a gift of $20 and feeling that she has to quickly hide the money lest it be stolen).  This frustrates her, her alertness ironically keeping her well aware that another part of her memory is growing worse.  Then there are the occasional outbursts, nothing too loud but loud enough for me to notice and often not caring whether other people are standing nearby (sometimes, she feels no hesitancy to point out a person directly).  Usually, she is upset over something simple, an item moved or a late response or a smaller serving on her plate.  This is not my mother (or at least not the mother I knew when I was growing up or in later years would visit).   For the most part she will still be my mother though, saving me a sandwich or a banana, each well hidden in the well of her rolling walker chair.  But this last visit to her produce a new development, a tear...the sniffly nose hid much of it well but there was frustration in her, a new feeling that now I no longer believed her.  "The people here don't believe me, and now you don't believe me.  I have no one," she said.  The issue was a shower, she was "owed" an additional two showers someone had told her (but she couldn't remember who had told her that).  Did it really matter, I wondered, since she was getting a shower today?  Wrong approach, and she could see the questioning in my expression.  We went to the staff to talk about the issue and they offered to give her another shower in a few days ("That's only one," she muttered as we walked away, "They owe me two.").

    For the staff (my mother is in an assisted living facility which is basically the middle ground between independent living and memory care, the new politically-correct term for Alzheimer's and severe dementia patients...they are all prisons of sorts, the residents now living in a glorified hotel-like setting with "free" meals and planned outings, but often few visitors or visitors just popping in for a brief hour or so...me), many of those more experienced have seen the patterns before -- the feeling that things are being stolen from her room, that her laundry isn't being done, that she's being discriminated against, that there are secret clubs having meetings in closed rooms.  And despite all of those feelings from my mother, the staff continually tells both me and her that she is far from needing memory care, their patience unusually long.  For many of the caretakers, it is difficult for me to picture being accused of something or of sloughing off or being yelled at, and then head home to face your family who is likely ready to present you with their own batch of troubles.  But I am knowingly among the fortunate, my mother's sale of her home allowing her to live in such a facility, a place where the staff includes nurses who can both dispense and chart her medications and ensure that each is given on schedule, a place where meals are served daily on a set schedule, a place where activities are spread throughout each day, a place where the outing van has a motorized ramp to board as well as steps.  And I say fortunate because many of the 65 million or so caregivers in the U.S. can't afford to pay the expensive prices for such places (and bear in mind that in the U.S., we are more prone to build and finance these facilities to "hide" or dare I say "rid" ourselves of this reality of caring for those less able to do so; in India, Dr. Atul Gawande wrote about his family caring for their 105+ year-old father in their home, a common practice for the majority of the people in his country and in many other parts of the world).  And for those unable to afford the costs (an assisted living facility will average $40-80,000 annually, depending on what part of the country you are in and how many "tiered" services you will need), that means that the care becomes part of your life now and usually within your home.

    I am not alone but in many respects I am, for the majority of caregivers have a much more difficult life, often juggling their own lives with work and raising their own families.  The average millenial (defined as those 18-34 years of age) is a growing part of the caregiving world (some 10 million, according to one site, Great Call); according to a series of profiles from AARP and the National Alliance for Caregiving, the millenial caregiver is:...a 27-year-old adult, equally likely to be male or female...The care receipient is likeyy a 59.6-year-old female relative, most oftehn a parent or grandparent of the caregiver, who needs help for a physical condition...Half of millennial caregivers have other unpaid help from other family and friends, and half have no additional unpaid support...The average millennial caregiver is employed and working 34.9 hours per week at his or her job.  About half of these caregivers are married or living with a partner.   For men, the profile is similar (and quickly, an interesting article appeared in the magazine of AARP describing the balancing of egos and work for men and perhaps the additional stigma they create for themselves when they become a solo caregiver): The typical male caregiver is a 47.8-year-old currently caring for one adult, typically a 68.8-year-old female relative who needs care because of a long-term physical condition.  Large data analytics are producing profiles of just about every segment, from different age groups to people of different races and ethnicities.  Add to this the differing segments of the population needing care, from birth defects (a terrible term, in my view) to shell-shocked veterans, from aging parents to victims of accidents...often the care is life-altering and for a lifetime, an interruption for my life (my mother being 90+), but a life-giving self-sacrifice for another who's child is just now being released from the hospital.

    Part of the title for this post comes borrowed from a review by William Deresiewicz in The Atlantic; titled Where Have You Gone, Annie Dillard?, Dillard perhaps most famous for her award-winning Pilgrim at Tinker Creek.  He reviews the recent collection of Dillard's writing now compiled in her book, The Abundance (she hasn't written any new pieces in seven years, he notes) and says about the book...Its finest piece, its central piece, the one that’s chosen to conclude the new collection, is “An Expedition to the Pole.”  The essay is a single long extended metaphor in which the journey toward the Absolute—aka the God of silence—which she elsewhere calls “this feckless prospecting in the dark for the unseen,” the lifelong effort to know the unknowable and to say the unsayable, is likened to the polar expeditions of yore.  To most of us, as Dillard knows, the effort seems completely pointless.  To her it is the only thing that gives our life a point...To her the mass of men lead lives not of quiet desperation but of superficiality, insensibility, and rank illusion.  We live as if we think we’re never going to die.  We live as if our petty business counted.  We live as if we weren’t as numerous as sand, and each of us ephemeral as clouds.  We live as if there hadn’t been a hundred thousand generations here before us, and another hundred thousand were not still to come.  Yet all around us holiness and grace, freely given every moment for the taking.

    Watching my mother seemingly change before my eyes, something almost imperceptible on a daily basis but one of those things shocking to those seeing her only once a year or so, I sense a bitterness, a mild anger and frustration at the way her body and now her mind is slowly giving in to age.  And no matter how much I try to rationalize how "lucky" she has been to have lived so long a life (this is not something I would ever mention to her for again, this is the wrong approach at this point), I often leave with a tinge of selfishness, my thoughts turning to my own genetics.  Am I seeing a preview of what I am to become, to face a similar resentment at life in my later years, to forget how lucky and fortunate I've been in both physical and mental health for so many years?   It would be so not me...but then this mother I now encounter is so not her.  There are pieces of her there, more her than not her to be honest, at least for now.  But the changes are steadily appearing.  Perhaps I should be asking not where have you gone, but where are you going?  It can be frightening or it can be exciting...but one this it is for certain is that it is uncontrollable.  It happens, life happens.  And perhaps as Annie Dillard appears to feel, it all might be just what gives life a point.