Take time out to observe around you, everything that you see, without judgment. Especially in the realm of caregiving, it is too easy to make judgments about how a loved one is communicating, if we are only using our own perspective. We must needs have an empathetic view, asking ourselves, what is my loved one trying to communicate with words, behavior, silence facial expressions, bodily movements, mannerisms, tone of voice. If I am too caught up in “tasking,” that is to say, attempting to complete a caregiver task, without paying attention to presence, then I can all too easily miss the cues. And, so rather than meeting a human being, namely, my mother, where she’s as, it is as if the only role I am playing in that moment is one of functionality.
This is a conscious process, identifying the underlying concern of the loved one, behind the speech or behavior. It becomes more challenging to navigate as cognitive decline continues to progress. Moreover, cognitive baseline is not always stable, depending upon various factors such as situational agitation, UTI’s or other infections that cause speech confusion and possibly delirium. So, this empathetic stance, tuning into the world of the loved one, and honing one’s relational skills is essential as the inevitable diminishment of cognitive capacity seems to occur over time.
Yet, in my own experience, it has been a struggle to follow through on my own words, as stated above. I need to heed my own words and be more empathetic. The question is how? I think that the answer lies in the approach toward my mother that I take upon myself as a family caregiver. A quiet, gentle approach, respecting the human being in front of me, created in the image of G-d.
What does this look like in actuality. Perhaps, at times a firm yet gentle approach. Seeking not to incur any agitation on my mother’s part. Having a lot of patience, especially when giving medications, when she can exhibit obstinacy. The goal is to honor her independence by letting her take her own medications, by putting them in her own mouth one by one.
Taking a breathe, pausing and reflecting on brief momentary situation that will pass. Giving my mother space and time as well as myself (self-care). Even if she is agitated, looking past this, knowing that this is not herself. Honoring when she is more calm, clear and recollected as her best self, more in alignment with her godly image.
And, for myself, thinking before responding; not requiring myself to say anything at all. Silence is often the best policy. This can be especially helpful in regard to perseveration, when a question or phrase might be repeated over an over. Another technique in that case to use is redirection away from the thought. As well as somatics, holding a hand, gentle touch on shoulder, reassurance if it is a “distressing thought.”
These are all aspects of the caregiver’s approach that I am learning for myself, through research, experience, and learning from others. A caregiver’s education is essential to continue serving in a role that usually is taken upon oneself without any prior experience or knowledge about how to cope with various situations relative to an elderly person with vascular dementia.
It’s been over a year and two months, since I’ve become my mother’s caregiver. I had the intent to do so, primarily to fulfill the mitzvah (commandment) to honor one’s parents, prior to my actually moving across the country to do so. Yet, when I heard from her doctor’s office that she fell and was on the floor overnight until her hired senior companion came in at 10:00 a.m., I knew it was time to make the shift.
I left my apartment behind me as well as my religious community. I spent most of my time during the week studying and writing. Over the weekend, when I attended services, at the synagogue is the only time I spent quality in-person time with others. All this would drastically change, beginning with my move to Florida, whereof I stayed with my mother at her Independent living apartment, covering the 12-5 p.m. shift and overnight. She had morning and evening aides, yet, my roles overlapped to some extent with both of those shifts.
My guiding mantra, regarding falls was “not on my watch.” Yet, my mother had a fall, and wound up in the hospital with four broken ribs. I was her patient advocate almost 24/7 for twenty-one days, interacting with doctors, nurses and aides. I’d never been that interactive to the extent that I was during that time. Then, I was also with her, while she was recovering in Rehab. That was less demanding, yet, still challenging for an introvert.
My mother’s second fall occurred toward Spring of the next year. Being a patient advocate in a hospital for my mother is so much more challenging than only being a caregiver. My mother was in Rehab for six weeks, whereof I was also with her most of the time, interacting with staff, etc. Toward the end of my mother’s stay in Rehab, we realized that she could not go back to Independent Living. SO, instead, we arranged for her to go into an assisted living facility.
Needless to say, as the most involved of three siblings, because I am the only one with the time and mobility to be present there for her, I arranged for the move out of her apartment. I singlehandedly packed all of her possessions. Uncannily, my favorite painting of my parents was scratched in several places during the move. My values were represented by this painting that had sentimental quality to it as well.
Here at the assisted living facility, I am involved with every aspect of her care, inasmuch that I am usually the second person assist. So, I have had very little time for myself. Moreover, as a caregiver, I became totally focused on her care. I lost a sense of self. My writing… my studies were abandoned. Only recently have I been somehow able to start reclaiming a “sense of self.” It’s like recovering my soul buried in the debris of fallout from receiving a crash experiential course in caregiving 101. Although, I think I am at the equivalent of a 500-level course by now.
Part of the neglect and subsequent loss of self had been the disappearance of identity markers for myself. Small things, that had been part of my routine prior to my life being disrupted for the sake of my mother, had been missing from my day to day week experience and the losses accumulate. Listening to music, a familiar environment, writing poems, posting blogs, studying Torah (not a small thing), all encompassed expressions of who I am and what I value in life. It’s like becoming a cipher without an identity or purpose except to serve one’s loved one. Those who have been or are currently caregivers will understand this.
The starting point for reclamation may not be simply going back to prior activities, hobbies and pastimes. It could be sorting out the essential from the nonessential, and adding anything new that would be in accord with one’s values. The key issue for caregivers is always the need to find the time for oneself in the midst of caregiving responsibilities. For myself, I am listening to music again; although, somewhat new, and more akin to background music, for the most part, without lyrics. Rather, calm, meditative music that stills the restless soul amongst the many challenges day and night. Also, case in point, by way of this blog and others, I have returned to blogging, although, my content has now shifted to the caregiving world.
Perhaps, more importantly, before embarking on a reclamation of identity, one needs to take some time to figure out who one is, despite the abandonment of self to the care of the loved one. I have been taking walks every morning to the ocean, before my mother’s morning preparation routine. Simply having time for oneself to rejuvenate provides the opportunity to be more present for the other. As I’ve heard from various sources in the caregiver world, we can’t pour into others’ lives from an empty cup.
Moreover, the other half of the coin is the subsequent loss of relating to my mother as she began to gradually decline to the point where she is now. The meaningful ways we spent time together are mostly diminished as is the person who she used to be. This is the travesty of vascular dementia upon the mind of a loved one. One must meet a loved one where she is, not where she once was. This is the lesson that I now need to learn in its singularity, as it encompasses most if not all interactions now. As for the loss of who my mother was, I will speak about this in more detail in another post.
For now, I will conclude by noting that without a foundation, a person can become unbalanced. The remedy is to return to the aspects of that foundation that can still be recovered. Otherwise, rebuilding that foundation one stone at a time, by keep adding upon the stones, cemented in place, to help one endure the rest of the struggle. I know for myself, that without God’s help, I would be in shambles by now.
Walking with the LORD, I had been focused on Him exclusively to the exclusion of others in my life, before I became a caregiver. I had been living my life like a hermit. Recently, I have been attempting to transcend my negativity by casting my gaze heavenward. Yet, to do so may not mean avoidance of my feelings, nor transcendence; rather, acknowledging my emotions in the moment, and seeking G-d in the midst of the chaos of my life as a caregiver. The unpredictability, the constant pouring out of self, the diminished time for myself – all these and more challenges abound. Yet, hope abounds more.
For now is the time of renewal in the moment. No need to wait until the next morning for the ice to melt; rather, to chip away at the ice today, climbing the mountain to the summit. Where the sun shines, above the clouds, I desire to be. Yet, the way is arduous, and the journey long toward gradual transformation of the heart from one burdened with negative emotions to a heart rendered clean though purification by nisyanos (trials).
I bear the suffering of my mother as the most prominent witness and her near constant companion as her son and primary caregiver. My journey is one of personal transformation, growing emotional maturity and reconciliation with my mother. Yet, without my connection to G-d, I would not be able to face the challenges each and every day of this journey.
My friend told me months ago that it is only for a season. How long that season will be is only determined by G-d, since I am in this for the long haul until the end. And, while my mother goes to sleep every night with a fear of death, I always look forward to the dawn, when the light streams in and a new day begins. Even if that spark of renewal is diminished as I begin to start my daily grind, I am resilient enough to abide in patience, until I am brought to a place of relative peace and safety, while my heart is guarded from emotional duress.
It is not easy. I fail over and over in some things, while doing better with others. I am no saint, despite the praise I receive from others. I am human like all other family caregivers. We go through a complete range emotions that contains both positive and negative feelings. It is accepting my own humanity at this point that seems key. Then, transforming myself with G-d’s help.
Five thing essay: the spiritual dimension of the psyche
The pursuit of meaning in life requires the defining of existential goals for oneself. These may include whatever endeavors enrich one’s life, within the framework of meaningful tasks. Although the tasks themselves may not appear to be meaningful, they may lead to a greater good reward. So, consistency requires diligence and work.
The dominant mode of thought amongst those who seek self-improvement, especially in the area of mental health, as well as the overall zeitgeist is that the pursuit of homeostasis is essential to wholeness in one’s life. Yet, Frankl posits that the dynamic tension in life between oneself and one’s goals is key to a fulfilling life. Thus, he compares this concept to the need to strengthen an arch by placing one more stone into that structure, in order to fulfill its purpose. It is the tension of the stones against each other that braces the archway.
So, if we would like to walk through the doorway that leads toward a life of enrichment, then it is not about seeking whatever might relieve the tension in our lives. Rather, it is about focusing on the pursuit of meaningful goals, that will contribute to the overall richness of our life. This may entail a reorientation of one’s entire life, toward the finding out of what is most meaningful as a unique individual and seeking the fulfilment of that meaning.
The obstacles in the way of reaching a goal may be the enticement of our psyche by whatever would provide immediate gratification, relief from stress and pleasure, only providing a temporary diversion from our goals. Yet, the true way to freedom is through the transcendence of our struggles by continuing in meaningful tasks, experiences, and endeavors. Too much freedom in the sense of giving ourselves breaks from what is most important will detract from the gain that will result from responsibilities.
Therefore, it may help as a guideline, for anyone interested in pursuing a life of meaningful intent, to contrast the Freud’s “will to pleasure,” with Frankl’s “will to meaning.” It is necessary to differentiate between the pleasure-seeking principle that operates within a human being, from the noological or spiritual dimension within us that may only be gratified through meaningful endeavors and experiences. Both of these polarities exist within us; yet, it is recommended to not fall sway to the natural inclinations, rather to the aspects of ourselves that allow for the highest fulfillment of a human being, that of transcending the physical for a higher purpose.
Have you ever had the feeling that “it’s later than it seems?” This feeling could manifest within the framework of your daily routine, yet, point toward something of greater significance. We tend to ignore, overlook, or distract ourselves from one of the fundamental givens of our existence: that our lives on earth are limited to a certain number of years. From the perspective of existential psychology, this existential given that everyone faces, causes us anxiety that manifest in indirect ways in our lives. Therefore, it is better to be brought out into the open, at some point, so that we can acknowledge what will eventually be brought to our awareness, sooner or later.
Yet, instead of acknowledging this reality, we might unconsciously try to avoid any reflection upon the brevity of our lives, by constantly distracting ourselves. In other words, by default, we face this particular existential given, by avoiding the recognition of our life on this earth as finite. Rather than think that we only have so many days to live in a way, pleasing to G-d, many of us live by always occupying our time with something to distract us from our own personal anxiety, fear, and uncertainty about the future, and the inevitability of death.
And, so, like water flowing where it will, or dandelion puffs blowing here and there, our natural inclinations lead us astray, acting against contemplation of the givens of our existence, and bringing us further away from the responsibility of actualizing an overall purpose in our lives, above and beyond the daily grind, and the seeking of pleasure, entertainment, and relaxation for its own sake.
Moreover, rebellion has become normative. Our flight from reality is sanctioned by the ongoing progressive cultural milieu of our times. For, if we do not even acknowledge the finiteness of our lives, then we may see ourselves within the framework of a delusion – that our lives are limitless, we can pursue whatever gives us satisfaction without any repercussions upon our conscience, especially if we are our own masters of conscience, and arbiters of truth.
As such, we disavow any claims made upon our lives by an authority higher than ourselves. Part of the tragedy stems from our views of authority from childhood, as influenced by the surrounding culture. Unless there is a tight-knit cohesion of the family unit, it is subject to decay, by way of outside influences. Its authority, in terms of positive parental influence is decreased in the minds of youth, who show signs of disrespect, and the parents themselves, who want to raise their children having a sense of freedom and autonomy they themselves value in their own lives. Yet, freedom must be balanced with responsibility, and autonomy must be weighed against the sovereignty of others.
There is a difference between dominion and domination. Mankind has been given dominion over the world, in order to serve as responsible stewards of the archetypal Garden of Eden. Adam and Eve lived in a Paradise, wherein a threefold harmony existed between themselves and G-d, with each other, and their environment. A fourth harmony was the inner sanctity within each of them as individuals.
This harmony was abandoned in favor of disobedience, the lure of becoming independent actors in a world created with a purpose and directive by the ultimate Director, whose script they chose to no longer follow. Instead, we establish ourselves as the highest authority, and end up dominating, instead of guiding the lives of others. Yet, G-d is compassionate; ever since the Fall, the expulsion from Paradise, G-d has been calling us back to him. He also took a measure of propriety to ensure that mankind would not have the leeway to continue outside of the initial plan – he limited the lifespan of mankind to 120 years maximum.
And, yet, we fill up our years, whether they be 70, 80 or more with material concerns (in Hebrew, gashmiyos), irrespective of the destiny of our souls. We attempt to dominate time, by making sure that we are always active, or always accomplishing something, yet, while concomitantly relinquishing our responsibility to use our time wisely. Rather, we need to redeem the time, by way of more meaningful pursuits in our lives.
Consider, that a conundrum exists between the focus on our physical existence, to the neglect of the soul. Our physical lives, in particular, the body, will eventually be subject to decay, while the soul is eternal. If our soul is eternal, then shouldn’t we begin to nourish what will last forever? We wouldn’t invest in a company that has a declining stock value. Yet, we continue to invest our lives with interests that are ephemeral. Moreover, whether you receive this or not at this time in your life, know that we are held accountable for the way we conduct ourselves in this life. The quality of our eternity depends upon how we lived our life.
Nobody wants to face death; we would rather enjoy our lives. Moreover, if this is all there is, irrespective of any kind of an afterlife, then most people who think this way, perhaps, would tend to live outside any sense of telos – an ultimate, purposeful goal beyond the ordinariness of our lives. And, yet, if we have not already considered what might be our ultimate purpose or individual mission in life, then the question may beg an answer, if only below the level of our awareness.
We distract ourselves from what is the most value in life. We are consumed with busyness – busy activity – even outside of our normative roles, tasks, and challenges for survival and to provide for others. However, of virtue, destiny and telos we remain ignorant, unconcerned, and even resentful toward any claim of an order that exists outside of our own individual kingdom where we seek to reign by giving into whatever we feel, think, or desire for ourselves. Thus, we do not even realize, that, in actuality, we our slaves to our desires.
Our lives have been stolen from us by the influence of therapeutic culture, an ever-pervasive “philosophy of life” that emphasizes our subjective pursuits for safety, freedom from suffering, and the lowest common denominator in terms of responsibilities – only to adhere to the path that will bring the most satisfaction. In doing so, we risk acknowledgment of the value and integrity of others. We honor ourselves more than others, and even worse, give no thought to honoring the Creator. Thus, the inherent danger in regard to G-d’s creatures – our fellow human beings – is to disregard their autonomy. Moreover, when we objectify others, we deny their dignity.
A repair of the human soul, a reordering of our values, and a reconstituting of a greater harmony going out beyond ourselves is in need. While we might remain faithful to the responsibilities of our lives, we have abandoned the yoke of Heaven. Yet, the path to harmony within and without begins with a first step, made in tandem with an answer to a higher calling. We may still have a chance to place our faith in someone other than ourselves before it is too late.
Breathing Room 