The Modern American Nursing Home

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.