Should it (or could
it) be more than custodial? Is it really just babysitting while awaiting
death ?
Recently I visited a self described “ state of the art” Nursing home in one
of the North eastern states to greet an
old time friend who has been placed
there by family because of
indications of the dreaded plague, Dementia. This facility lists on Its webpage
Gourmet dining for residents, careful,
professional and regular treatment for
the improvement of the various levels of
the disease, stimulation, multiple occasions
for interaction with games, music
concerts and in general a kind of edenic
living.
Situated on a busy avenue loaded with garages, gas stations,
hot dog stands and businesses selling tires and accessories, the Home is a large
attractive building with a sweeping
driveway. When I arrived, there were several elderly people seated on the porch
in rocking chairs sunning themselves. They looked at me with empty
vacuous eyes and instantly dropped their gaze, reminiscent of cows munching on
grass who are distracted momentarily by
a passing railroad rain. Those who are residing there for dementia care live in
a confined locked area cheerily called the Reminiscence area.
When I was ceremoniously admitted through the coded locked
doors, my first reaction was of oppressive temperature. No open windows. The
air was heavy, perhaps, because older people like warmer room temp. Yet, the
general sense was of cleanliness with no trace of urine odor so offensive in
poorly kept institutions. However, there was a sense of total enclosure which
can be so deadening and crushing in
time. I was told that once a week the residents are taken outside the enclosure
for “ice cream”, an event viewed by the residents with greatly anticipated joy.
This “lock up” seems quite proper for those whose dendrites have been
destroyed. Those patients who are in the Alzheimer “bubble” must be protected from the “wandering” possibility which could
result in major damage to
themselves. Quite clear.
Staff
try mightily. The fault is
not theirs. The error in this facility,
as in many others, is failing to recognize that all dementia patients are not
in the same severe level of the disease. These patients should be treated in
terms of where they are medically at the present
time . In spite of the hoopla of
“interaction” there are huge chunks of the day which the residents spend alone,
a bellringer for depression possibiliies. Confinement, unfortunately, makes for
flattened personalities. Prisoners readily attest to this and while all nursing
home administrators try, sometimes desperately,
to provide stimulating activities,
the structures make it exceedingly difficult. Placement and diagnosis
are sometimes made hurriedly without sufficient over all analysis, Experienced
diagnosticians know that mildly depressed residents can experience more rapid
deterioration when plunged abruptly into what they experience as a total
life change with a concomitant sense of confusion and futility. The sadness is that what little opportunity
for “happiness” one possessed has now been quickly abolished with confinement in the deadening atmosphere
of the severely afflicted..
The staff was warm and cheery, a bit artificial, but
generally pleasing. They greet one well and are perfectly pleasant. I was ushered into a room for “general”
purposes. It had a large television
screen which no one was watching but seven or eight dementia residents
of various levels of awareness were
present. It was apparently acceptable
that they sit and watch me visit my friend. One gray haired woman who seemed to
be at least eighty sat hugging a toy doll and treating it as if it were human
and living. A senior man with arms folded and eyes closed sat silent when he
suddenly got up and began to pace the floor slowly but repeatedly. He was like
the Indian psychotic inmate in “One flew over the cukoo’s nest.” A woman seeing
my clerical collar dashed over to say, in a surprisingly deep guttural voice
that she owned the place . I felt a bit cowed and reminded myself to behave
appropriately. Three or four senior
women almost sprawled in chairs while they “looked out there” at something or
nothing. No conversation. No smiles. When eyes would meet it was a momentary
connection of no-life. They just “sat” there. The heaviness of mood was
powerful.
I managed to contact
a 92 year old woman who had lost her husband 9 months ago and whose 5 sons agreed that she could not live
alone so they gathered her up and deposited her in this
facility. With tears In her eyes she told me none of them came to visit her in
this facility which she described as “ I hate it.” One of the dominant reasons for her low
feelings was not only abandonment, but more, the sense that she had lost all
control or decision sharing in her life. Others decided for her. Coming to such
a facility like this actually aggravates
this feeling of being overwhelmed. She
is told when to retire and get up. When
to eat. To take medications when others
decide for her. She is allowed very little in the way of personal decision
making. Furthering her depression she
got the impression that they confined her for their own convenience. They say they
feel better. They don’t worry about her any more so they can go
on with their respective lives with relative peace of mind and enjoyment. Every one is happier except her, and that
realization is painful and is
enormously hard to carry alone. Did she tell me truth or was it distorted perception?
I don’t know but one factor is indisputable. The cookie cutter dimension.
As noted, institutions do what they can. There is no perfect
solution. That is why cookie cutting resolutions can be very damaging and unfair.
Each patient has to be assessed individually. Some of these patients might do
well if incorporated into the more “normal” populations. For example, there are some dementia patients
who can, at present, enjoy and benefit from more free living, even if lightly
supervised by competent and caring
people. Does it help a partially functioning dementia patient to be totally
immersed in a very sick environment or would it be worth a chance to allow that
person to move even limitedly in a more normal population? To my psychologist’s
mind the question is academic.
Recently, some friends of mine described their treatment of their aged mother who was in dementia and living in a Nursing home. The mother had
difficulty speaking complete sentences
and finding words to express her
thoughts. They brought her to their
home four days over the Christmas
holidays. They report that the return to more instant comprehension and ease of speaking was
markedly obvious. She was stimulated
by conversation which was more than discussions about showers or takings pills. Total immersion in the numbing atmosphere of
a confined area will take its inevitable and terrible toll.
It is fairly clear
that dementia type diseases are irreversible, When dendrites die, they do not
regenerate. Surely the Facility knows that elemental point. So when they
suggest, relative to my friend, that IF she improves at 86, they will move her
into assisted living, are they telling less than the truth? Don’t all of us unconsciously seek the easy
solution? To reduce “memory units” to custodial levels might be fair enough but
to pretend that they are rehab designed is really pushing the envelope!!
Relative to my friend.
The reality is that her few times left of enjoyable living are fleeting
each day as she stays in the Memory unit. Her last happy moments have been stolen on
behalf of the peace of mind of others. She has been there six weeks with rapid negative
consequences. She has fallen twice, the second with some significant injury to
her leg, has had three serious episodes of vomiting twice accompanied by loss
of consciousness. I rode with her in the
ambulance to the local hospital where after 8 hours of testing she was discharged with no findings. CT scan,
EKG, BP, total blood work up and
observation. Is this not obvious psychological messaging of rejection and rebellion?
Her heart begins to act up after all the excitement but more so her deep unhappiness.
She cries herself to sleep. On her third vomiting episode, again with ambulance
transport to the local hospital, after heavy
testing, she was sent to another
hospital in another city. She was discharged again to resume living in the
Lockup. Will she vomit again? She did not vomit once when living in New
York. What does one make of this? One legitimate question is obvious. Not all
problems are purely and only physical. Patients sometimes communicate nonverbally through bodily symptoms. It is known as
psychosomatic reactions.
In 6 weeks she has not had ONE therapy session in spite of
the alleged programs so colorfully described. In six weeks her mentation is
worse. Her confusion seems compounded. Her word search has become painful. She
says she feels: degraded----demolished---in prison. Her words. In a kind of Stockholm syndrome she fears to tell others
what she is feeling. She fears, probably
aggravated by her hours of being alone
or by the garbled conversation of the
dementia population, that the staff will “punish” her if
she speaks up and says what she
is really thinking . She resists taking
showers because of the (from her point of view) Nazi like attitudes of handlers
who are usually aides who are under a nurse overseer.
Dementia is a
terrible disease. Not much has
been found to date which offers substantial hope for cure but all researchers
recommend that caregivers do as much as
possible to maintain at least the present level of self esteem which the patient
possess. Dementia care is stressful for
caregivers but who for the most part sincerely wish to safeguard the limited reservoir of peace these unfortunate
patients cling to. The spiritual, the emotional, the social
factors are at least as important as the physical factors so necessary in the
final days of those we have loved who themselves took care of
others in the past . Psychological factors are serious dynamics which ought to
be acted on. At least they should be seriously considered.
