Having served as a hospice chaplain and now as a palliative care educator, I have met some incredibly courageous people. Those people confronted by the daunting challenges of serious, advanced, and terminal illnesses serve to teach me about the truly meaningful things in this life. By companioning those confronted by their own mortality, I am learning how to live – how I choose to live. Their stories, their perceptions, their understandings of life enrich my own understanding and enhance my capacity to serve others. This is certainly true when it comes to the experience of caregiving. As caregivers and care receivers, we are put through the emotional wringer as we vacillate between feelings of rage, love, and everything in between. Often what we are feeling is dependent on where we are in our journey of caregiving. The stories shared with me by caregivers and care receivers highlight the fact that a myriad of emotions is the norm. Caregiving is much like an accelerated roller coaster ride during which there are times we must simply hang on for dear life through the exaggerated highs and lows.

In order to teach effectively, I must be authentic. I must teach about that which I know. I know the challenges of caregiving. I know the fear generated by a terminal diagnosis of a loved one. I know the heartache of dementia. I know the transformative power of death, both positive and negative. I know the darkness of despair. But I also know the journey of caregiving to be so much more. There are times when caregiving is about love, joy, humor, laughter, devotion, commitment, communion, faith, possibilities, and incredible transformation. The challenge is to attain (or maintain) a balanced perception of the journey as we navigate the myriad of emotions triggered by our experiences.

As the Community Educator for Life Quality Institute, I created a program on caregiving that invites individuals and families to create a community of care, a group of people who share in the responsibilities of caregiving. An important part of the discussion revolves around the risks and rewards of being a primary caregiver or a care receiver relying solely on one person. The risks are fairly obvious (physical exhaustion, emotional and spiritual angst) to which most people readily relate. However, depending on where people are in the journey of caregiving, some people find it very difficult to identify any rewards or blessings. The current challenges are endless. The grief is raw. The risks overshadow any possible rewards. Consequently, some people find it difficult, if not offensive, to hear me speak of the “rewards” or “blessings” of being a caregiver. My comments seem flippant and “rose colored” to those who are knee deep in the journey.

Thus, it is incredibly important to understand where people are (physically, emotionally, and spiritually) in the journey of caregiving. I have been a caregiver which provides a basis for understanding the experience of other caregivers. However, I am reflecting on my past experience; it is not my current reality. Having the luxury of time to integrate my experiences (good and bad) and the subsequent losses into my life, I have a different perspective and appreciation for my experience as a caregiver. My emotions are no longer raw. The heartache I experienced as a caregiver slowly faded into the background as the realized blessings became the more prominent aspects of my memories. Time didn’t heal my wounds; however, time allowed for the process of healing to occur as a result of self-reflection and “re-membering.” Therefore, when talking with caregivers and care receivers, I must listen first in order to appreciate their perspectives of caregiving and subsequently serve them well.

It is important for those of us who companion caregivers and care receivers to recognize the importance of time and timing. Just as in the bereavement process, we can’t rush people through the process. People need to be encouraged to feel what they feel, when they feel it, as long as they feel it. For those caregivers struggling to get from one day to the next, they have little interest in hearing about the “blessings” of caregiving. Their present reality is everything BUT a blessing. Instead, we need to encourage and honor those who are courageous enough to name the dark side of caregiving. The caregivers who attend my class and honestly admit that they are frustrated, angry, scared, tired, distraught, hopeless, and incapable of seeing anything positive about their situation are saying what every caregiver has felt, is feeling, or will feel at some point in time. They are bravely naming what others do not, cannot, or will not. However, there is always a sense of relief in the room once the unnamed is named. Sometimes the greatest gift we can offer caregivers is the time, the permission, and the encouragement to share fearlessly.

The best advice I have to offer those challenged by the journey of caregiving comes from my mother – words that continue to guide me in all aspects of my life. When faced with a daunting task, “take one step at a time.” It took me many years to understand the essence of her words. She was advising me to be present to the moment. To focus on now. To have faith that by doing so, I’ll be prepared to take the next step…and you will too. Blessings to you and yours…..


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