Grief Encounters of the Non-Death Kind
On the Ambiguous Losses of caregiving
“I know you think this world is too dark to even dream in color,
but I’ve seen flowers bloom at midnight.
I’ve seen kites fly in gray skies
and they were real close to looking like the sunrise,
and sometimes it takes the most wounded wings
the most broken things
to notice how strong the breeze is,
how precious the flight.”
- Andrea Gibson
It once hit me hard on a train platform at SFO. I was just off a quick flight from Seattle, at the beginning of a 48 hour respite from a painful new world of caregiving. I was arriving to celebrate a happy occasion for a dear friend, but the tears just flowed. The adrenaline of urgent care needs was subsiding and with a break from the thinking, I was forced into feeling. My mother had just spent weeks in the hospital, with extreme physical illness but no clear diagnosis. Even more worrisome was the information that came to light about her cognitive impairment, and the fact that she would not be able to continue living alone.
Enveloping me at that moment on the train platform was sadness combined with the immense pressure to alter my life so I could figure out how she would be cared for and where she would go when she left the hospital. It was doing so in the midst of her complete denial, anger and rejection of the idea that anything needed to change. I was the only child who could help, and we already had a strained relationship. It brought feelings of anxiety, but also of a deep sense of loss, and it took being removed from the situation for grief to emerge from the deep places it was buried.
As caregivers we experience a lot of what is called “ambiguous loss” or “disenfranchised grief.” Ambiguous loss is “a profound sense of loss or grief without closure (or death).” When this grief is related to a person, it generally happens in one of two ways: when a person is physically present but psychologically unavailable, or when a person is psychologically present but physically absent. An example of the former would be slowly losing someone to dementia or extreme mental illness. Examples of the latter are the losses experienced by families separated by immigration, or to a child in foster care. Just about everyone experienced some form of ambiguous loss during covid-19, being isolated from loved ones and losing access to the everyday activities that provided connection, routine and joy.
When caregiving for our parents or sick loved ones, we feel a deep sense of loss for how things were, or how we expected things to be at this stage of life, or for the personal sacrifices we make in order to do the caring. As sandwich caregivers in particular, we grieve that our parents cannot be involved with their grandkids in the way that we hoped, like taking them on all-day activities or for overnight stays. We also feel the loss of the built-in support in raising young children that we may have hoped for. We grieve that on top of less support, we are sacrificing personal projects and self-care time we desperately need, in order to provide care on both ends of the age spectrum.
Moving through ambiguous loss is its own challenge, because the losses are not visible in the way that death is. They don’t come with a rally of support around you, sympathies, meal trains and flowers. There isn’t a clear social understanding that you are processing something painful, that it will take time, and that it is changing you. Death, like other major life events, is marked by social rituals, memorials, funerals, burials. With ambiguous loss it is impossible to pinpoint when the loss occurred, there is no line between the before and after, and there is no finality or exclamation point from which to start moving on. Rituals help not only provide closure, but also a way for community to provide support and a time and place to express grief.
How Grief impacts the brain and body
Like my mother, my father is sadly losing both cognitive and physical abilities. My stepdad Jackson has increasingly become my father’s caretaker, both of them now in their 80s. Last week, after a concerned call from Jackson about a recent hospital visit, I jumped into my familiar caretaker role. Alex and I changed our schedules, packed the kids in the car, and made a last minute trip to the nearby island where the dads live. I spent the day helping search for in-home caregivers, advising Jackson on resources and researching insurance and adjustable beds. On the way home, I could feel my brain fogging over after and the sadness and overwhelm rising up in my body.
Jackson and I have shared that we both grieve the version of my dad that is no longer here. Family dinners used to be engaging affairs, inevitably delving into lively discussions ranging from politics, travel, philosophical debates and fueled by good food and (too much) wine. My dad has always been the best listener, advice-giver, lover of music, books and travel. Time together and conversations are very different now, and it is a loss. I miss his mind. I can tell the he feels the loss too. For a few days after this visit, I was depressed and fatigued from the emotional toll.
Grief rewires the brain with one goal: survival. It is interpreted in the same way that emotional trauma or PTSD is, eliciting a fight or flight response, and can impact memory, behavior, sleep, the immune system and even the heart. The depression, brain fog and fatigue I experienced is a common physical response. With proper healing, grief holds the potential to activate post-traumatic growth. What strikes me in thinking about ambiguous grief and caregiving, is that without the same finality and rituals that happen with death, caregivers are often living in a state of fight or flight for a long time, which has the opposite effect. I know that many of us wonder - will experiencing this grief related to our loved ones’ declining health now ultimately change the way we grieve when they die? As in, will the early, drawn out grief lessen the grief when they die? Or, along with the inevitable sadness, will there be a feeling of relief that comes with the finality or the end of suffering (as hard as that would be to admit)?
From the American Brain Foundation:
Low to moderate stress increases nerve growth and improves memory while reducing fear. However, chronic stress causes a reduction in nerve growth and memory and increases fear to help an individual focus on survival. This stress response can have a negative effect and the more it happens, the more it becomes hardwired. Over the long term, grief can disrupt the diverse cognitive domains of memory, decision-making, visuospatial function, attention, word fluency, and the speed of information processing.
All the more reason that caregivers themselves need more than simply a way to outsource what we do. Sure, we need some of that, but we also need better resources and support to continue to do the non-transferable caregiving jobs for our loved ones (including emotional support). The feelings of ambiguous loss related to my mother actually started much earlier than this episode, but I have only recently come to associate any of these feelings with grief. I think naming this feeling and acknowledging the losses has helped me to accept and process what I’ve gone through, come to terms with our relationship, and recognize my feelings as valid rather than selfish. What I’ve learned, but am still very much working on, is that we must move through the grief - avoidance doesn’t work (believe me, I’ve tried). For me and for many others I know, therapy has been helpful to process these feelings and losses real time, and to make the mind-body connection between physical symptoms of anxiety and fatigue, and the grief we’re trying to process. Things I also find helpful include exercise, meditation, and creativity (writing!). A solo drive with a cathartic sing along to some 90s faves doesn’t hurt either.
Often after going through a stint of grief, processing, and a few of the above activities, I feel a renewed sense of appreciation for the positive things in my life: my healthy nuclear family, happy kids, a safe and comfortable home. As both brain science and Andrea Gibson’s poem suggest, grief can bring gratitude for the joys of life that we may take for granted during easier times. We just need to actively find ways to heal and convert the grief to growth before it consumes us. It’s not easy or immediate, but it’s possible.
Have you experienced grief / ambiguous loss as part of caregiving? Are there strategies that have helped you manage it? What kinds of social support systems would help caregivers through this type of grief?
📚 Reads
Why do terrible things happen to to wonderful People? Also Andrea Gibson’s substack Things that don’t suck and their poetry collections
Anna,
This is beautifully written. The notion of ambiguous loss is profound. It is so important to bring attention to it. Thank you.
Anna, thank you so much for this. For the last 10 years of my dad's life he lived in hospitals, nursing homes, and assisted living due to untreatable depression and anxiety. My two sisters and I had each other to help look after him and share the pain of ambiguous loss during those years. In 2020 we (unambiguously) lost him to COVID, which of course brought a whole different kind of grief. But it's true that I felt some relief that the ambiguous loss -- and his painful final years -- could finally reach closure.