On Passion and Purpose After Loss of the Person for Whom We Advocated:
What Lies Beyond When Caregiving Ends?
“The end of caregiving isn’t freedom….It’s grief.” ~ Anonymous
Having a purpose that we feel passionate about can be the North Star to help us navigate the darkest parts of our grief, after losing a loved one. I know that was the case for me when I lost my dad over eight years ago. The grief was tough, but I had several projects that fed my purpose for living. I was in the early years of my radio program to help others find their passion, and I was in the early days of writing The Passionate Life: Creating Vitality & Joy at Any Age. But looking back, I realize that I had the highest purpose of all — of making sure my mom was OK, as she not only lost her husband but was at the onset of her own physical limitations for which she required more care. I see more clearly now, in hindsight, that the purpose of advocating for Mom’s care so she could maintain her best quality of life was one of the most powerful factors in helping me to heal after the loss of my dad.
With the death of my mom, however, my world has turned upside down, and there is no clear North Star to help me regain my course. Since my mom passed away in October 2023, I’ve looked for resources to help people, such as myself, who were caregivers or health advocates for their loved ones who have passed. For many of us, our advocacy created a strong purpose and passion during that period of our lives, and when our loved ones suddenly died, that purpose died as well.
Most resources that I’ve found, whether through self-help bereavement books, groups, or online seminars, are directed specifically toward grief. And, while that is an important part of the big picture, the loss of a loved one that we’ve been advocating or caregiving for is a more complex form of grief because of the sudden loss of this extremely important role. For me, it was an honor to be able to be there for my mom in that way, and I have found that only those who have been in that situation can truly understand it.
My advocacy for my mom’s care became a very big part of my daily life and, at times, demanded more of me, especially after she was moved into a skilled nursing facility. There were constant calls to the nursing home staff, meetings with the care team, checking with the camera we installed in her room, and flying across the country to see her frequently. My mom and I had a standing appointment on Zoom every afternoon, which began when Covid didn’t allow for my personal visits. We loved it so much that we continued even after Covid was no longer a key issue. We even zoomed in when I went on trips. My partner pulled over to the side of the road on one road trip to California so we could show my mom the desert scenery. She and I both felt like she was traveling with us.
My mom and I became closer than we had ever been, as my advocacy for her expanded, and it became my second full-time job on top of my regular day job. One task was organizing and facilitating a virtual family council at her nursing home. I’m proud that we, as a council, accomplished quite a bit to increase the quality of life for all of the residents at that home.
Then, suddenly, as quickly as the snap of one’s fingers, all that stopped with the sudden and unexpected halting of the beat of my mom’s heart. In addition to missing my partner in crime and my BFF incredibly, the loss of the purpose that I had become so passionate about vanished, leaving me floundering. While deeply involved with my mom’s care, I was able to have a clear perspective about what was most important in life. When something else in my life or the world was not going well, I could cope fairly easily with it because I knew that my highest purpose was to make sure my mom was alright and that she was getting the best care. Now that my person who was, in a sense, the rudder of my life’s ship, was gone, I was left not only grieving but disorientated. Any equilibrium I felt in regard to my purpose was gone. And the things that I have no control over in the world started taking up too much space and weightiness in my life.
There is an ancient myth held by some cultures that, at any one time, there are certain people around the globe who must be alive at the same time in order for the world to keep spinning smoothly. As the story goes, none of them know that they are one of those people, nor does anyone else know it about them. But, if any one of them should die before the next group of special people is born into the next generation, the world would completely fall apart. I had completely forgotten about that myth, the specifics of it, or even where I had heard it. But, when my dad died in the fall of 2015, it felt to me that the world completely was off its course, and this mythical story came to mind with the odd feeling that he was one of those people. In his absence, my outer world shifted and was now out of control. However, with my mom’s death, it is my inner world that has completely shifted.
The loss of a clear, purposeful course, as a result of losing that job, added to the turbulence and perception of being out at sea in the fog from the grief of losing my mom. I’m sure that fog is not uncommon among those who are part of the involuntary membership in the club of grieving the loss of a loved one. But I was and am unwilling to stay lost at sea.
In the absence of resources to guide me with this specific type of loss, I’ve decided that 2024 is the year for me to find my way out of the darkness, to regain my course of passion and purpose, once again, and to create equilibrium, as I know my mom would certainly have wanted me to do this. And, in doing so, I hope to find a light to shine that others on this same voyage might find their own way. In my blog, Finding Grace in Flexibility: Showing Up When Things Fall Apart, I wrote about the need to have flexibility and the ability to change course and still find passion when life presents new obstacles. And this surely is a new obstacle, if there ever has been one.
I have found it helpful to remember lessons taught to me by my mom in the way she lived her own life. I will jump in right here with one lesson from my mom that is most needed by me right now, and that is the lesson of “forgiveness and balance.”
Forgive, don’t dwell on the negative. “Don’t make yourself sick over what you can’t change. Life is about balance.” Mom had her share of strong reactions and anger when she felt that someone did something that was hurtful. At times, she used some pretty colorful language. But she was also quick to forgive and move on. She didn’t hold grudges. Once she said what she had to say, she was quick to forgive if the offending behavior was changed.
When we had our daily Zoom meetings, she’d ask me to tell her more details about various news stories she had heard on television. If the details were disturbing, she’d state how she felt about it, but then she’d say, “Ok, tell me something good.” She knew that, as much as there was bad news, there was also good news, and that it was important to not get stuck in the bad news that we had no control over. She also knew that sometimes good people do selfish or unthinking things and, once they changed their behavior, it was alright to forgive them.
She helped me to stay in balance too. “Don’t make yourself sick over it,” she’d say. I know she’d be saying that now, with regard to all of the turmoil in the world. And she is right. In her almost ninety-five years, she saw quite a bit of sadness and difficulties in her life and in the world. And she “muddled through,” as she described it, by looking for the positive and not getting stuck in the negative. And she knew that, at the very same time that there was sadness, there was also joy and light — and she reminded me of that daily by shifting the discussion and shifting the mood º and through her forgiveness.
This lesson is one that I’m working on for myself, and I often remind myself of it when I get caught up in the bad news by asking, “What would Mom say right now?” Then I remember that bad news sells, so the media’s focus on the bad news doesn’t mean that, in reality, there’s more bad news than there is good. I am reminded that we can do more for the world and bring more light into the darkness when we fill ourselves up with the good news and the joy. I witnessed that with Mom, as she was truly a bright light in the world who continued to make so many people feel positive and loved right up to her last day.
The job of advocating for a loved one who is immersed in the healthcare system or in long-term care is a necessary one. Without loving advocates, those who cannot speak for themselves and, especially, older adults, often suffer the consequences of ageism and ableism, leading to a quality of life that is less than ideal. Sometimes, as I wrote about in my blog, Ageism in Healthcare: The Dark Side of Hospice, it can lead to the ending of the life of someone who still has more stories to tell. Such advocacy is a noble and purposeful role to play.
However, it’s important to remember that the loss of passion and purpose experienced by those of us who suddenly lose that job when our loved one suddenly dies is real. The first step toward healing is often awareness, and the second is being seen. So, I want to tell you that if you’ve lost your way after losing someone whom you were caring for, I see you. And I hope to see you again as we make it to the light.
In loving memory of Maxine Karpel, February 5, 1929 to October 25, 2023. Her memory will always be a blessing to those of us who had the fortune to know her and love her.
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