In 2004 I was working in a nursing home. I had just started and was unsure of the culture. Each morning the routine was for management to meet in what is called a ‘stand up’ where each department reports the work plan for the day and also advises others of any concerns. This one morning, the DON (director of nursing) complained about a resident who wanted to walk and was a ‘fall risk’. The DON was advocating restraint measures. I held my breath to see how the AD (administrator) would respond. She looked at the DON and said ‘falling is a part of life’. I let my breath out, and thought ‘thank God, sanity prevails’.
Since that time I have been too frequently discouraged by the lack of sanity in most assisted, memory care, and long term care facilities. When old people move in, without knowing it, they give their lives over to a cadre of people intent on keeping their bodies alive, but limited in understanding their spirits. Too many times old folks’ freedom, the very freedom most of us take for granted, is curtailed by well-meaning but overly protective staff. In Huxley’s Brave New World, his Lordship, the world controller, firmly believes that the lack of personal freedom in the World State is well worth the price of social stability because he insists, it leads to lasting happiness. To my mind, this description is uncomfortably close to most eldercare facilities.
It is a well-known fact that falling is a part of the aging experience. Poor balance, lack of good vision, unsteadiness, insecurity, inattention, and a host of other reasons can all contribute to untimely death or impairment. It is always important to assess each individual and come up with a plan that maximizes his or her ability. Unfortunately, most facilities are not equipped with the requisite knowledge to assess a person according to that person’s history, desires, and needs beyond the physical. This lack of perspective cannot be laid solely at the doorstep of facilities.
As a culture focused on youth and productivity, there is not a lot of understanding or interest in what it means to be old. The assumption is that all old people are alike and therefore, all old people need the same things. Concurrent with that assumption is our society’s aversion to dependence. We idealize the ‘self-made man’ (and less frequently, woman) and the cowboy. Their fierce independence and ‘know how’ is seen as the primary virtue worth embracing. This ethos influences how we approach eldercare. Whether it’s from a medical perspective that assumes a ‘father knows best’ attitude, or a risk management perspective, fearful of lawsuits, individuality gets truncated when coupled with dependency. Decision makers in eldercare are embedded in attitudinal assumptions that limit their ability to recognize and make holistic decisions for the person. To exacerbate matters, opportunity to recognize and address bias does not garner much attention in training programs, and the amount of time devoted to psychosocial/spiritual needs is minuscule.
Concomitant with this built-in bias, and resultant absence of good training, is a chronic scarcity of resources, both financial and human. In a best case scenario (which does not exist), there is an extra staff person assigned to each shift to ensure flexibility and individual attention to elders as needed. In reality, there is on-going staff shortage leading to lack of availability and overwork due to both low wages, and low status. Given these limitations, in an attempt to manage risk, facilities become overly solicitous of the body. Falls are the biggest liability. The prospect of ‘elopment’ –leaving the building – poses the greatest threat in memory care. To avoid these possibilities, facilities put into place procedures to protect elders for their own good. That good, however, is often better for the facility than it is for the elder.
A typical case – let’s call the elder, Miriam. Miriam has early stage memory loss. She and her spouse have been living in the assisted living section of a life care community. Miriam uses a walker, is social, has not had an inordinate amount of falls, and has not shown any signs of wandering. Upon her spouse’s death, the facility deems it best for Miriam to move from assisted living to a locked memory care unit in the building. Miriam’s family is not in the area, nor are they savvy about eldercare, which means they willingly accept whatever measures are suggested by administration. Right here the problem begins. How holistic was the assessment that determined a locked unit was the best one for Miriam? Yes, she definitely needs reminders, and maybe even escort to events and meals, and she definitely needs help with maintaining an orderly environment, but does she need a locked unit? What, if any, other options were explored?
In her new locked unit, Miriam is told she can continue to participate in the activities she previously enjoyed in assisted living, however, a staff member must accompany her to the activity. This is onerous in and of itself because it infantilizes Miriam and sets her up for what is called ‘excess disability’ – the idea that the expectations we have of someone become a self fulfilling prophecy for that person. To exacerbate the situation, the facility frequently has insufficient staff to accompany Miriam. The result is that Miriam is stuck. She has been deemed incompetent to go on her own, and the facility cannot, despite assurances to the contrary, provide her with the requisite staff person.
An elder in Miriam’s situation is usually spending quite a bit of money monthly on care. When the facility does not have the staff to provide escort, or other services, as desired (and I would argue, needed) by the elder, it is the elder who loses out, not the facility. The elder is paying for a service she is not receiving, and she has no recourse to complain. If she does put up a fuss and is insistent on what she wants, the elder can be labeled ‘difficult’. If she persists in her demands, medication is sought to manage her ‘behavior’. The similarity with Brave New World is readily apparent here.
The truth is that the facility is not able to keep up its end of the contract, and defaults to safety mode and risk management protocols, thus protecting itself first and foremost, and secondarily protecting the elder’s body while not recognizing that there is a spirit that is equally involved in the equation. When the spirit is repeatedly overlooked, disregarded or relegated to low status unhealth ensues. In the psychic economy of the person, tending to the spirit, no matter the circumstances, makes the difference between depression and well-being. This is all the more so when we are old and dependent on others to help us meet our needs.
In this situation, the facility is doing its duty. It is protecting the body of Miriam and making decisions for her with the belief that she is no longer capable of making decisions for herself. (In my experience, people with memory loss, especially in its early stages, are fully capable of making decisions.) So, in our case example, Miriam is the one who suffers. She suffers because the group of people she wants to stay connected to, and the kinds of activities that brought her pleasure, are no longer accessible to her. She is expected to adapt and adjust; however, what she is offered in return is a more sterile and less stimulating environment. All too often I have seen elders in these circumstances respond by withdrawing. Mental and emotional capacities begin to disintegrate. Facilities believe they have done their best to take care of the elder. Decline is attributed to disease eating the brain, not to the environment. From autopsies done on many diseased brains, we know that not every old person who has a diseased brain on autopsy showed signs of that disease when alive. The difference is that those elders who remain engaged with activities that brought meaning to their lives, were amazingly able to mitigate the usual problems associated with memory loss. Every facility needs to take this finding into account. Safety is not sufficient for quality of life.
Is an elder with memory loss going to decline? Most likely. Does that automatically mean a lower quality of life? Compared to when the person was ‘well’, yes. Compared to what is possible in the person’s present state, the answer is no. It is not the disease in and of itself that results in disquiet and ‘behaviors’. Rather, it is the lack of appropriate care stemming from a lack of personal attention to who Miriam is, and what she needs to thrive. Underlying this lack is not only the belief that Miriam needs to be protected, especially from herself, but also that she really doesn’t know what she needs. This mentality undermines any possibility of Miriam being responded to as the unique individual she is.
As a society, we all need to educate ourselves about age bias, about what it is like to be old, about issues affecting older people in facilities, and what is required to continue living as fully as possible, no matter our age. Until such time as we have a cultural shift, the only way I have been able to figure out how to counteract the restrictive nature of facilities is to ensure that each elder in a facility has a knowledgeable and attentive advocate. If family members live in geographically distant places, and cannot regularly monitor their loved ones’ care, then they need to identify a good friend or hire a care manager who can be their eyes and ears. The advocate must be willing to consider the elder’s overall well-being and not be bamboozled by well-meaning, but ultimately unhelpful attitudes pervasive in the world of facilities.
Yes, falling is a part of life, and so is risk. When you take risk away from older people, you inadvertently take away their life and shorten it. Who among us wants to exist our life rather than live it? If you have an elder in your care, think about what you would want for your life, listen to and respect what your elder wants, even if the elder has memory loss, and then, make sure that healthy natural choices remain available to your elder until they die, even when that means risking safety for quality of life.