Invisible

    The past few days have been somewhat of a blur as the calls came in.  It was Sunday morning (or was it Saturday morning?), the middle of a holiday weekend.  The phone rang and a voice on the other end said that upon leaving her rehab facility, my mother should be moved to memory care, a polite term for what used to be the Alzheimer's wing of the building.  It was strictly a recommendation from the facility where she currently resided but if I chose not to do so, her care level and cost to keep her in the room where she now was would jump substantially.  The move to the new memory care wing, by the way, would now incur a monthly fee of $7,009 which translates to over $84,000 annually.  How do people afford such prices (and their wing in this particular facility was nearly full).  My mother did not have Alzheimer's (for more on that disease, you can check out my earlier post) but was showing progressively stronger signs of dementia.  What's the difference?  Here's how Healthline put it: Dementia is a syndrome, not a disease.  A syndrome is a group of symptoms that doesn’t have a definitive diagnosis.  Dementia is a group of symptoms that affects mental cognitive tasks such as memory and reasoning.  Dementia is an umbrella term that Alzheimer’s disease can fall under.  It can occur due to a variety of conditions, the most common of which is Alzheimer’s disease...Alzheimer’s disease is responsible for about 50 to 70 percent of all cases of dementia...No cure for Alzheimer’s is available...often, dementia can be caused by a series of mini-strokes, which my mother showed evidence of having.

    Back to the phone call.  Eventually your mother will have to make the move, I was told; it'd be easier to just transition her from rehab straight into a new room.  Her primary care doctor agreed although not on the basis of her erratic memory but on her simply needing more care and watching.  But $84,000?  I began the holiday search (offices closed everywhere) as my mother waited to be released from rehab, something that was scheduled to happen in two days.  For those of you who haven't gone through this process of looking into a place for long-term care, it can prove eye-opening; picture renting your first apartment only double or triple those costs.  A move-in fee (standard is a non-refundable $1500), a move-out fee (30-days notice or loss of a month's rent), first and second month's rent, an annual cost-of-living increase in rent (generally 4-5% of your rent and locked into your contract) and any additional charges such as phone hookup, pets and cable television.  All told, be prepared to fork over about $10,000 or more just to move in (for those of you choking, now is a good time to grab a glass of water).  My mother's move would cost even more as I sacrificed the month's rent in the old place for a move into a newer place.

   But this is where I really wanted to start for I did manage to find a brand new place, an excellent facility to our hurried and untrained eyes, and about $2000 less per month.  But how to get it all together so quickly?  This would mean touring and then locking in the new place (again, she was to be released from her rehab in two days), cancelling her contract at her current place, and then moving all of her furniture.  And how would my mother feel about all of this, this moving yet again and this time into a "lock-down" facility?  I sat with her quietly and over a period of the days to follow, asked her that question on three different occasions.  Yes, she remembered the place where she was currently staying and she remembered staying briefly in their memory care side (she did reside there strictly on a temporary basis as her room in assisted living was readied); it was junk, she said, didn't like it.  To me, that was a go, at least as far as her not wanting to remain in her old residence.  The papers were signed, the old contract cancelled (amicably) and my wife and friend volunteering to help with the move (which would take all day and three vehicles).

   But those issues were all minor.  For it was in walking past the rooms of rehab and the rooms of assisted living and memory care that I saw the "invisibles," the people once vibrant and full of lives well-lived that now sat on couches or in beds.  As food critic Ruth Reichl put it on describing such a woman board a bus: She wore no-color glasses.  The ragged hem of the dress that strayed beneath the formless coat was a nondescript print--white squiggles on a dark blue background...Timeless, ageless, sexless, her anxious eyes surveyed the nonexistent seating possibilities.  As Reichl stands up and offers her seat, the woman tells her, "No one stands up for me...I feel invisible."  Reichl continues: Invisible...the word kept echoing in my head...I watched her from a distance and saw that she was right...At Ninety-eighth street the woman pressed the buzzer and began the difficult process of extricating herself from the seat.  As she staggered down the aisle, no arm reached out to help her.  No one paid her the slightest attention until she was laboring slowly down the stairs, and then it was just the man behind her, frowning at the pace of her progress.  When she finally reached the bottom step he pushed past her in exasperation, nearly knocking her over...On the sidewalk nobody stopped to nod or smile as she shuffled past.  And when she reached her building, the young man walking out brushed impatiently by, letting the heavy door swing shut behind him.  She caught it just before it closed, grimaced, squeezed through.

    Now that my mother was headed for the memory care side, would she also become "invisible," one of the many cast away and hidden from the view of most people; the new facility assured me that would not happen but I had had lunch with many of the others at the other facility, the rehab, their meals becoming one of the highlights of the day, a chance to chat with others for a bit before returning to some therapy or a nap or a passing of time with pain (again, I mentioned much of this when talking about Dr. Atul Gawande's book and similar thoughts in an earlier post).  And there were many other "invisibles," the aides who cleaned up those staying there, the maintenance people who mopped up the messes.  Thinking about it, any of us could be an "invisible," from a brilliant accountant stuck in a cubicle to an unacknowledged employee working diligently but without recognition.

    I was lucky.  My wife and friend were sacrificing a day to help me pack up my mother's things and move them across town only to have to unpack those same things and place them in another place.  Our backs were all sore, we were tired.  "It's a beautiful day," my friend still said and indeed it was; the temps were in the 70s, the sun was shining, the day quite inviting.  "Sure is," I replied, "shame you had to waste it," meaning  that the time he allotted to helping me was likely proving a bit more than expected.  "Not at all," he answered, "any time spent helping a friend is never a waste."  I thought of the "invisibles," how easy it would be to become one.  A simple diminishing of caring, a lack of love, a loss of friendship...in loneliness one could easily fade into the shadows and disappear.  My wife and my friend, in wasting or not wasting their day, suddenly made me visible and despite my moaning I had not yet faded away...we should all be so lucky.