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Understaffed and Neglected: How Real Estate Investors Reshaped Assisted Living is an investigative report in the Washington Post that details some of the awful consequences which can result from a profit-centered operating model for assisted care facilities. When real estate investment vehicles compete with and control the facilities’ management/operations budgets, funds can be siphoned away from patient care and instead directed to investors at a rate that prevents the delivery of promised care to residents. It is a frightening exposé.

This is one of the reasons that The Montessori Alzheimer’s Project maintains its focus on guiding families in using Montessori methods to allow caregivers to continue to support their loved ones at home, with safety, dignity and surrounded by love. The longer your loved one can stay at home, the longer they are insulated from many of the perils in profit-driven care facilities.

If you have implemented our recommendations, you may have found that you’ve been able to keep your loved one at home with you in a much better situation, for both of you. This is not to say that, at a certain point, it is likely that you may need to move your loved one to a facility. It is our view that the further down the road this has to take place, the better.

Not all facilities are operated in ways that prioritize distributable profit over care. Care facilities and their staff that are resident-centered may be found everywhere. However, articles such as this Washington Post piece remind us of the critical importance of informed care facility selection. The article also serves to emphasize the need to remain vigilant once our loved one becomes a resident there.

When selecting a care facility, pay close attention to staffing, turnover rates of staffing, and do not be misled by pretty exterior designs and attractive slogans. Remember that it is the facility’s lowest paid staff members who are the people who provide the majority of the hands-on care that your loved one needs. Look to see how personal care assistants, the maintenance staff and everyone else not in the marketing or medication side of the facility look and behave. Observe the quality, respect, and compassion, or lack thereof, expressed through their interactions with the residents.

Keep in mind also that if management/ownership demands are overwhelming for the facility’s staff, then there is no way for them to provide the warmth and close attention that your loved one needs.

Once your loved one has moved into the facility that you have chosen, maintain your vigilance along these lines. Use your access to the facility to see its day-to-day operations. This enables you to look even more closely at the quality and consistency of care that your loved one, and other residents, are receiving.

The Montessori Alzheimer’s Project provides information you need to make life at home as workable as possible and to make any needed transition as safe as possible. This information better prepares you to better interact with the facility and its staff. You know what has worked for your loved one, and why. This can and should be shared with those then responsible for day-to-day care.

As we wrote in The Montessori Alzheimer’s Project, a key Montessori insight is that human beings have a fundamental need to do meaningful work. We are all looking for meaning in our lives, beginning in childhood and continuing throughout our lives. This does not end with a diagnosis of dementia. 

An article in the Washington Post about Dementia Cafes in Japan is a society-level, real-world demonstration of the basic principles we identify as keys to care: Standardize, Simplify, Signage and Redirection. 

Even the title of the article highlights the power of kindness, patience, and safety: At Japan’s Dementia Cafes, Forgotten Orders Are All Part Of The Service

It is uplifting in so many ways, for participants with dementia, for caregivers, and for caregivers whose loved ones have passed away. While our focus is on applying those principles in the home, to see them in action at a public commercial venue brings tremendous joy.

https://www.washingtonpost.com/world/2023/09/19/japan-aging-elderly-dementia-care/

Here is the link for my talk this morning on Caregiving as a Spiritual Discipline.   The focal point was the generosity  called Protection from Fear.  I hope it is helpful.

[The discussion here is directed to the process of caregiving as a spiritual discipline. It is not oriented to any specific religion. Instead, it focuses on the development of compassion. The view here is that genuine spiritual discipline is expressed as immovable kindness and unshakeable compassion, which is the heart of all religious teachings.]

Kindness and compassion are easy to talk about. They are not so easy to embody. Without cultivation, they do not spontaneously arise in any stable manner. Caregiving is a most direct path to cultivating compassion. Whether one starts out as a caregiver with simplistic altruistic intentions or with simplistic neurotic guilt, whether it is a mix of the two or somewhere in between, whether it is for love or money, the act of caregiving is stronger than we think. By its nature, caregiving both points to and expresses spiritual discipline.

For all caregivers and in all facets of caregiving, there is a common ground of experience: We have all been sick, we will all die. Our fear of sickness and death will be exposed in the caregiving process. Because we cannot hide, because we get up the next day and care some more, that very fear is transformed into a path. That path uncovers the connection between the heart of the person being cared for as well as our own heart. It is easy to understand how we can connect to the fear of another; it is right on their face, right in their body, and right in their voice. We can see it and we can sympathize – from the distance of our separation. However, equally important, by acknowledging and connecting with our own hopes, fears, and revulsion, we can do more than just sympathize. We can touch. By acknowledging the fear in here, we can touch the fear out there. Then we can truly be present.

Caregiving as a spiritual discipline means doing that hard work of turning away from hope and fear. It results in a sense of honesty about sickness and death. While the goal of benefiting the ill person is fundamentally kind, the side effect of truly giving care has tremendous power and benefit to the caregiver. This is clearly seen when you encounter ordinary human beings thrust into the position of being a caregiver. It is not a spiritual discipline open only to the initiated, the learned, or the charismatic. Untrained, non-professional people are in put in the position of being a caregiver every day.

Everyone is guided, more or less, by self-interest. When their self-interest becomes overwhelmed by the suffering of someone they love, or by the impending loss they see on the horizon, they become transformed. Often for the first time, they put the well being of another ahead of their own. They swallow their pride of social position, and lovingly clean up bodily waste, dress and undress their loved one, brush that person’s teeth, and, most importantly, consider what needs to be done the next day. Individuals who have dealt with others in a generally compassionate manner may find their skills enhanced. Sometimes, they may find out that their “compassion” was conceptual whereas the smell of a dying person’s body is not.

Usually, we first experience the process of another person’s illness from the point of view of how it impacts us. In other words, while we think, “How awful my parent is dying”, we simultaneously think, “Now I am going to be all alone in the world.” Our experience of their illness isn’t really very direct because it remains based on our reference point of separateness.

As fears increase on the part of the patient, that can exaggerate one’s own fears and panic. Alternatively, if the patient approaches illness and immanent death as a process which is part of life and cuts off the notions of hope and fear, that can exaggerate one’s own self-confidence and strength. The suggestion here is to reverse that process. Instead, when one’s own fears arise, view illness and immanent death as a process which is part of life thereby cutting off the notions of hope and fear. That will support and encourage the self confidence of the patient. Similarly, when the patient’s fears arise, let them arise and dissipate. Communicate that you are participating in the process with them without succumbing to the panic. Essentially, when they express their panic, they are going to key off of your reaction. Project immovable kindness.

Experiencing the attachment to the other – first arises in the context of holding on to hope that the patient will recover, or go easily, and fear that they will pass away in difficulty. From the point of view of the patient, one can experience their attachment to things, recollections, and their body. Visits with family can be wrenching as a result of attachments to unfinished business as well as a result of attachments of affection. Getting caught up in the hope and fear again will exaggerate the attachments. It is taking sides. The only side which exists is this moment. As life becomes undeniably short, there is no time like the present. Being present in this context is not moving when the patient’s mind moves. Being with them without being trapped by them. This gives a reference point for them to return to. If they express anger, meet it gently. If they express panic, project stability. If they express desire, meet it softly. Anticipation is embedded in all of those states of mind. The point of kindness is to support the present moment. “With no future be true to yourself.” In other words nothing can save you from the present moment so relax any sense of struggle. From the point of view of the caregiver, this requires tremendous exertion. Hope and fear continually arise in the caregiving situation. The future or the lack of future can easily become monumental for all participants in the process. Undercutting that pattern of intention opens up the present moment for genuine communication with and without words.

The process of grieving starts when the patient is clearly beyond recovery. It is critically important for the patient to have the psychological space to experience the process of their own mind without rubbing up against the caregiver’s mental tides. They need their strength and waning energy to connect directly to the process of illness and death. Bringing in one’s own issues drains that strength and energy. Part of the spiritual discipline of caregiving is creating that open and supportive space for the patient. The boundary of the patient’s world, which becomes more and more intimate on both the physical and psychological level, needs complete respect. This requires the caregiver to work with their own emotions, conflicting, intense and swirling, separate from the patient’s space.

© Lyle Weinstein 1997