The "boys"
are now in their 40s, living with their own families in their
own houses nearby. Bobbie's mother died some 30 years ago.
The days
grow shorter this time of year, especially in the latitude of
Maine's Penobscot Bay, and on one of its outermost islands.
Continental America is here reaching out toward Greenwich as
far as it can, anxious to start the day. But off to such an
early start, it is sooner spent. Four-thirty in the afternoon
is approaching night. For an elderly couple playing host to
Alzheimer's disease, this pause between the dark and the daylight
is definitely not "The Children's Hour" as Longfellow's poem
saw it. More often it is a time for the Invisibles of our imaginations
to become palpable people, ones to be reckoned with, even claiming
a place at the table. Late afternoon is commonly referred to
in Alzheimer's circles as the time of the "sun-downing syndrome."
For the patient with that disease, perhaps partly due to fatigue,
reality tends at twilight to 
lose
some of its firmness, and phantasms can come crowding in, tensions
increase.
It is not
just Bobbie's mother who shows up at this witching hour. Also
her father, my parents, my brothers (I have three), and also
(says Bobbie) my wife, and a host of others who are nameless
and invisible - they all can be at our house singly, or in groups.
I marvel again and again at Bobbie's prevailing equanimity in
the face of this crowded household over which she presides.
She finds "them" just as intractable and unpredictable as do
I, even though she "sees" them in a manner I do not. I note
she often mutes her voice in speaking to me of them, lest she
be overheard. And just the other day she said of our daughter
Kathy, who lives hundreds of miles away, "She is around here
a lot, but I don't see much of her."
There is
another aspect of this fluidity of reality, as seen by Bobbie,
which has been manifesting itself for some time now. She asks
me, out of the blue, whether I "have thanked them."
"Thanked
whom, for what?" I reply.
"Why, the
people that own the house, of course, for letting us stay here."
When she says that I feel ejected from my own home, as though
the bank had foreclosed on my mortgage - or as though some owner
of the house I had been renting had suddenly sold it out from
under me to some new owner. Bobbie is not that worried or threatened.
She finds it a very nice house, frequently speaking admiringly
of appointments, and of this or that furnishing, sometimes even
saying, "This looks just like our house!" But she was schooled
in the social graces by her mother, and a house guest always
expresses appreciation to the hostess.
"No, I
haven't," I confess, "but I will."
Bobbie's
"Invisibles," however, are not only friends and family visiting
in our home - or whoever it is who really owns it. Occasionally
there are also foreboding, nameless others who lurk just beyond
the fence. Sometimes they drive right up to the fence and get
out of their cars. Bobbie is as ignorant as I of why they are
there or what they want. They never come to the house - at least
not yet; but there is always the apprehension that they might.
We know absolutely nothing about them, but there is something
inherently threatening in their anonymity, their silence, and
their encroaching on us. Often Bobbie draws my attention to
them, looking out the window. I see nothing. No one. At first
I was foolish enough to get the binoculars - even to go out
to the fence with her, hoping to demonstrate to her that there
was no one there. But ever and again they come, these unknown
Invisibles.
Another
factor so familiar to many caregivers is the patient's recurring
urge to go "home."
For Bobbie
this means her childhood home in north Jersey. One time I remember
was in October. The weather was good, the foliage in northern
New England as breathtaking as usual. Daughter Becky now lives
in Saratoga Springs, and that is not far from the Adirondacks,
where some close friends of ours live. It seemed a good combination
of visits to justify a three-day trip. So off we went, Saratoga
being some 400 miles from our Maine home, a nine-hour trip.
On the way Bobbie seemed increasingly tense, and began to speak
of wanting to go to her childhood home in New Jersey. I tried
to distract her with other topics, but without success. When
we arrived, our seeing Becky again was overshadowed by Bobbie's
still wanting to go "home." She was not about to be distracted
by a visit with Becky nor with our Adirondack friends. She wanted
to go "home."
I realized
I had to accommodate her concern; but also knew it was unwise
to make a return trip of another nine hours without a break,
since I would have to do all the driving. So I insisted we would
have to spend the night at Becky's, then we could leave in the
morning. Reluctantly she acquiesced; but the following morning
she had but one objective - New Jersey.
Becky and
our Adirondack friends had no difficulty accepting our abrupt
departure. They understood. But I confess to a lot of anxiety
on that return trip. Several times she observed that we did
not seem to be heading toward New Jersey. Nor were we. But suppose
my dissembling did not work, and she insisted on going to New
Jersey? To a house no longer standing? To a community where
now she knows no one, and no one knows her? But her memory disability
spared us, her concern eased, forgotten, and we made our way
home to the Island without incident.
Many times
since then in the process of doing post-supper chores I have
been surprised by Bobbie's appearing from upstairs with an incongruous
assortment of clothing, toilet articles and bedding, and announcing
that she has to go "home." She states this as a matter of fact,
as though we had both known it, but that I had somehow forgotten.
There is no mistaking her intention. She is determined to do
it, with or without my help.
After two
or three experiences of this I learned that she was not about
to be influenced by such considerations as that there is no
mailboat at that time of night to take us to the mainland. At
that time she is incapable of being a part of my world, so I
must enter hers. So I tell her I will go with her. Putting on
such overwear as is appropriate to the weather, armed with a
flashlight and carrying the aforementioned luggage, we make
our way out to the garage and clamber into the Model A Ford.
The starting
of the car seems a signal to her that the tension can cease,
that all is and will be well. I bear in mind that going home
meant to her, five or ten minutes earlier, a long trek of 10
to 12 hours by car to New Jersey. But now she is relaxed, talkative,
while we negotiate the bumpy, glooming road which traverses
the perimeter of a small island 30 miles off the coast of Maine!
We have really a very pleasant time, as our auto trips together
typically have been over the years. We chat casually about this
and that, complain about the road, exclaim about the moonlight
or lack thereof, hold hands (my right, her left) as any right-thinking
couple would do.
Indeed,
there is one such night that stands out in my mind.
During
the day preceding, Bobbie had seemed a little more distant from
reality than usual, though not appearing anxious or stressed.
Supper went well, and at about the usual time between eight
and nine she went upstairs with the little dog, presumably to
retire. I followed her up to be sure her bed was made (she typically
makes and unmakes it several times each day), toothbrush found,
and the other bedtime routines attended to. She seemed very
casual about it all, except I noted she insisted on going into
the guest room to retire - where she had never before slept.
But once there it did not seem right to her, and she was obviously
very confused. When I led her back to her own room it became
evident that going to bed was not what she wanted. I could not
understand her responses to questions of what she did want -
her words and thoughts were too incoherent, probably to her
as well as to me. Although she did not mention "going Home,"
that seemed to me the best interpretation, based upon past experience.
So I helped
her put her shoes back on, found a warm coat for each of us,
got the flashlight, called the dog. Out we went to the garage
and got into the car and started off down the road. In all of
this she seemed most willing to come along, but showed evidence
of not knowing where we were, whose house we had just left,
nor where we were going nor for what purpose. Several times
as we travelled along that familiar Island road she repeated
she had "never seen this before," and my explanations of our
whereabouts were met with polite disbelief - or incomprehension.
I reached with my hand for hers as we drove along, and she responded
warmly. As we continued riding it became increasingly evident
to me that she indeed did not know where we were, and probably
not who I was. We were living in different worlds, and her only
contact with my world were those two hands - three, because
now both of hers were holding mine. And it was palpable to me
that how her wandering alone in a strange and unknown world
could be endured was at least in part attributable to those
three hands reaching across an unfathomable abyss, the only
point of contact between two people each living in a world unknown
to the other.
That contact,
however, is not a fixed fact but a flickering reality, coming
and going. More usually on these night rides, having gone as
far as seems reasonable, perhaps four miles, we turn around
and retrace our steps. When we approach our driveway, she indicates
I should turn in there. We drive into the garage, get out of
the car. As the flashlight guides us through the dark to the
house, she thanks me for "being so good to her." I don't really
know what was going on in her beleaguered mind. What I make
of it is that an appreciative soul is expressing thanks for
being taken at her word, for someone seriously sharing with
her the strange new world in which she finds herself.
