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.
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.