Author: Lyle Weinstein

[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

There is an article detailing the negative results of hospital patients not walking during their time in the hospital and how quickly their muscles weaken.  Either at home of in a nursing facility, movement every day is critical maintaining the well being of your loved one. Creating meaningful activity that uses major muscle groups in the hands/arms/legs is key. This can be as simple as walking outside to see flowers or trees, or a garden. Inside it can be as simple as walking the hallways watering plants.

https://www.washingtonpost.com/health/overzealous-in-preventing-falls-hospitals-are-producing-an-epidemic-of-immobility-in-elderly-patients/2019/10/11/d1894374-d8ab-11e9-a688-303693fb4b0b_story.html

The Washington Post recently published an article entitled Caregiving for a Sick Loved One Can Be Stressful, Harrowing, Depressing – And Rewarding. (The link to the article is provided at the end of this blog.).

The article demonstrates one of the founding principles of The Montessori Alzheimer’s Project: caregiving is a spiritual journey. This term spiritual may be interpreted in many ways, but for MAP, as we say in our book, it means that “Each time we establish meaning in our loved one’s life, we engender meaning in our own. This is a basic, fundamental spiritual component of living each and every day in the most positive uplifted way.”

For MAP, this spiritual journey is revealed in many ways:

• Caregivers love without the expectation or demand that they will be loved back, or that the love returned be shown in the same way as it once was.

• Caregivers give without the expectation or demand that they will receive. They help their loved one through the decline that accompanies dementia without concern about somehow being “repaid.” This is truly “Doing unto others as they would have done to themselves.”

• Caregivers forgive their loved one for past hurts as well as for recent hurts that are inflicted unknowingly as a consequence of the dementia. And at the same time, caregivers find it possible to genuinely forgive themselves for hurts that they may have inflicted in the years that preceded dementia’s onset as well as for those that they are currently unable to completely contain right now. They give back and repay in service to their precious loved one.

• Caregivers respond intuitively to the needs of the person for whom they are caring. These intuitions are based upon a deep knowledge of the person who has dementia, both as they are and as they were. And caregivers also constantly seek new understanding and new knowledge, expanding themselves as a person, and extending their ability to provide care.

• Caregivers understand that they cannot “know” what will happen today, nor control the day’s unfolding. To the extent possible, they maintain an acceptance of life, of living, and of caring that serves as their personal foundation. As their heart centers them, even though their world may dissolve temporarily into chaos, they strive to provide a safe harbor for their loved one.

• Caregivers find joy and laughter in the rewards that can be found in each day, and in the ability to take lightly the disappointments that also occur. The spiritual nature of caregiving is enriched by a caregiver who practices a slowness to anger, and the ability to find joy where others might not first see it.

• Caregivers seek the truth of each event as it unfolds. This search for truth supports the life and experiences of a loved one in decline. There becomes less and less fear of making a mistake. Spiritual caregiving understands that error provides its own lessons.

• Caregivers become less and less affected by the opinions of others. Caregivers must do what they think is right. They strive to be the person they must be to best support their loved one. They find their own inner compass and follow its guidance. Caregivers become more skilled at releasing themselves from relationships that do not serve their caregiving mission.

• Caregivers honor and accept the reality in which they find themselves. As Albert Einstein once observed: “There are two ways of looking at the world, one as if everything is a miracle, and second, as if nothing is”. Day-to-day caregiving reveals daily miracles – A face lighting up with joy for any reason… A tender thank you through word or action for love given … The serene contemplation of the world of nature that lies in a simple backyard garden.

• Caregivers serve with humility (a key Montessori principle), cherishing each opportunity to help and to support. The spiritual nature of caregiving is manifested by purposeful action each day. One counts one’s blessings with a sense of gratitude for the small miracles of that day and the opportunities that it offered. Humility is expressed through kind speech and gentle acts with gentleness.

• Caregivers find solace and renewal in moments silence that may be found each day. Caregivers seek time to reflect upon their days, to meditate upon all that has occurred, to build their resilience, and to take time for themselves wherever possible. Why? It is so that they can recharge, so that they can find renewed strength and self-assurance as they prepare for the caregiving needs that beckon on the horizon.

Greg MacDonald

https://www.washingtonpost.com/health/caregiving-for-a-sick-loved-one-can-be-stressful-harrowing-depressing–and-rewarding/2019/09/27/dbb41cf4-c918-11e9-a4f3-c081a126de70_story.html

We have written about the joy caregivers experience when they bring a smile to the face of their loved one, or generate a laugh from them.  Here is an article about the power of professionals – comedians connecting with dementia.  Stand up comedy is always about connecting with the audience. This article is about connnecting with an audience of one.  It could be time for all of us to start working on our stand-up acts with our Loved Ones!

https://beta.washingtonpost.com/lifestyle/2019/09/17/comedians-are-being-hired-by-hour-help-dementia-patients-their-goal-full-belly-laugh/