Caregiving – Breathing Room

A Balancing Act

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.

Seeking More than What Is

God is a very present help, when we recall Him to mind: shiveesee HaShem l’negdi tamid (I am ever mindful of the LORD’s presence). Without doing so, we are taking Him for granted, as if He is somehow present with us, despite our actual awareness of that presence, and that He is sanctioning everything that we are saying and doing, as long as it seems to be within our own set standards for ourselves. Yet, this is an egotistical stance, based upon pride. Rather, it is written, “Do not lean on your own understanding.” And, “seek the LORD’s presence,” for without it we are very limited in our capacity to cope with all the complexities in life.

As a family caregiver, my limitations have been apparent from the start. Yet, I have been learning from experience. Caring for a loved one often involves obstacles that are placed in the way of the care that we are attempting to give. Moreover, the acts of care may be received without gratitude, or sometimes rejected forthright. At times, flexibility allows for the care act to be accomplished at another time within the framework of its necessary time window. The point being that all genuine acts of giving can be counted as chesed shel emes, a true kindness regardless of how well it is received or not. So, whether appreciated or not, received or not received, the effort is not in vain. Even if it is met with harsh words, it still counts as a mitzvah (good deed). Because a true act of kindness is one that does not bring anything in return to the giver.

When needs are met, regardless of how they are received there is a sense of satisfaction on my part, and ultimately a sense of acceptance on my mother’s part after the fact. That is the fleeting moment of reciprocity that occurs on occasion, as well as when she is calm enough to hold hands with me. Sometimes, I do so, before she goes to sleep and when she is still sleeping in the morning. It is a sign of presence, simply focusing on “being there” for her, while setting aside all of the other tasks and unresolved issues. Then, there is the existential need to also be present for myself:

When that space opens up inside of me, emptied out of everything else, it is a still quiet place, yet, it is empty. Perhaps, most people do not even find this place within oneself, because we are too caught up in externals. For myself, I experienced this briefly when in a support group I decided not to talk about anything going on in my personal caregiver world; rather, I intended to focus on myself. At that point, I realized, that my “self” seemed vulnerable, and as if I never entered that part of me or forgot it entirely. This ties into the phenomenon, known amongst caregivers, as losing oneself in the midst of a role that demands full attention to another person, the caregiver’s “loved one,” in this case, my elderly mother who has vascular dementia and CHF.

What is this place within me? The Fertile Void. Like “the open moment,” it is a place of potential for something meaningful to occur. When I empty myself of preconceptions, as a caregiver I can slow down my pace and focus more on presence. In that moment of simply being present with my mother, aware of her presence, her breathe, an being it becomes a sacred moment. I can set my tasks aside while being present for my mother. And even though this should not be as challenging as I would think because I have task paralysis anyway, it is still challenging not to fall back into active mode while quietly spending time with my mother. In truth, it is only the major unresolved tasks, where I am hesitant before proceeding, and those can be set aside as well as the smaller day to day tasks. Each day brings its own requirements, and space and room to breathe is always a welcome moment away at any time during the day.

Reclaiming a Sense of Self

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.

A Caregiver’s Journal

My life as a family caregiver began in September 2024, when I moved to Florida from the Southwest, in order to care for my elderly mother is wheelchair bound. She also has vascular dementia, and this factors into the equation in ways that are challenging to know the best approach toward her. Other factors include my mother’s personality, my own temperament, and the amount off care that I am required to provide.

Anyone who is a family caregiver knows that we occupy a unique niche in caregiving, wherein no one could understand our plight, except for another family caregiver. Yet, I venture forth with this blogpost to begin a new series of posts, touching on this existential experience, the life and times of a family caregiver to provide an expose of the subject.

It is a highly stressful role to play in relationship to a loved one. I have seen comments on Facebook family caregiver support groups, wherein at least one doctor and nurse have posted comments, denoting that the role of a family caregiver is more stressful than the vocation of doctors and nurses. To begin with, this may often be the case for a family caregiver that is devoted 24-7 to the care of loved within, usually with very little time for oneself.

My own journey so far has brought me forth through several shifts in the level of care that I was required to provide, to the point, currently, whereof it demands most of my attention 24-7; although I have the assistance of staff at an assisted living facility where I live with my mother as her caregiver. It is a demanding role, both a blessing and a curse; yet, I am hoping to transform the curses into blessings too.

Caregiving 101 – In the Image of G-d

According to Chat GPT: (with specific reference to dementia):

How can I see past the suffering of my mother to the person created in the image of G-d?

That’s one of the most sacred and difficult questions a child can ask while caregiving. When a loved one’s suffering—especially from something like dementia—seems to eclipse who they were, it takes deep spiritual work to still see the divine image shining beneath the illness.

Here are some gentle pathways from Jewish and contemplative perspectives that may help you see past the suffering and reconnect to her essence:

**1. Remember: the Tzelem Elohim never fades.**

Jewish thought teaches that every person is created b’tzelem Elohim—in the image of G-d. This image is not the personality, memory, or even moral behavior. It is the being itself, the divine imprint that is unaltered by sickness or age.

Even when the mind forgets, the soul remembers.

When you look at your mother, try silently saying:

“This is a soul, still radiant, still beloved, still whole before G-d.”
Let your gaze soften, as if you are looking not at her suffering, but through it—toward the eternal spark that illness cannot touch.

2. Distinguish between her soul and her symptoms.

The frustration, agitation, or confusion you see are not “her”—they are the distortions of disease acting upon her brain.
Try gently naming this difference to yourself:

“This confusion is not my mother. My mother is still here, hidden behind it.”
This shift allows compassion to flow where anger or despair might have been.

3. Seek the sacred in small moments.

The divine image may appear not in grand recognition, but in fleeting gestures—a faint smile, a touch of the hand, a sigh, a flicker of eye contact.
Each of these is a whisper of her neshamah reaching out.
Let these moments be your prayer beads—count them, bless them.

4. See your caregiving as a mirror of G-d’s mercy.

In Jewish mysticism, to care for the frail is to become a vessel for Rachamim, Divine Compassion. You are doing avodah—sacred service—each time you bathe, feed, soothe, or comfort her.

The Shechinah, the indwelling Presence, is said to rest with the suffering.
By being with her, you are, in a real sense, dwelling with the Shechinah.

5. Practice a contemplative prayer of seeing.

When you approach her, take a deep breath and inwardly say:

“Ruach Elohim chayavah b’kirbah” — The Spirit of God lives within her.
Let this phrase settle your heart before every encounter.
It re-trains the mind to look for what is alive, not what is lost.

6. Tend to your own soul’s sight.

Seeing holiness through suffering requires rest and renewal. Prayer, nature, music, journaling, or studying Torah can help cleanse the “lens” of your heart so you can see her more clearly.

Your compassion will deepen when your own soul is nourished.