Caregiving, Guilt, and Grief
By Richa Mohta · Published
Caregiving often leaves behind a quiet guilt, the sense that you should have done more. A therapist reflects on the exhaustion, grief, and even relief that can follow caring for someone through illness or loss, and why none of it makes your love any less real.
A perspective from inside and outside the therapy room
If you have ever taken care of someone through illness or loss, this is for you.
The Illusion of Control
When a person takes up the caregiving role, they often adopt the assumption that if they do enough, stay alert enough, or give enough, the outcome will remain in their hands. Consequently, when the person passes, a specific sentence arrives almost inevitably: "I didn't do enough." When you carry a sense of control over the entire process, the loss triggers that heavy burden of perceived failure. The truth that is harder to accept is this: You are not responsible for keeping a person alive. Even when you do everything in your capacity, it is often not in your hands to do more than what has already been done. However, when you carry that burden, it has a correlation with the amount of guilt we experience.
You were not responsible for keeping them alive. You did what you could.
The Weight of Exhaustion
Sometimes people have taken on so much responsibility already that they get to a point where they just want this to end. You can have this feeling like, "I am sick and tired of it." There is often even a layer of resentment, not toward the person, but toward the role itself and the feeling of being trapped by love.
But then you feel guilty for having those feelings. We think we are not supposed to feel exhausted just because we love or care for somebody; we think we should only look at them from a single definition of love. It is almost as if being a caregiver means you are not entitled to feel as a human, almost as if the definition of care does not include the person themselves. Others might even add to the guilt by constantly asking, "Are you doing this? Are you doing that?" They forget that the caregiver also needs care, love, and acceptance. The person behind the caregiving almost becomes invisible.
You needed care too. That was always true.
Suffering Is Not Proof of Love
In times of loss, it becomes even more overwhelming. People are often quick to judge if you do not mourn the way they picture it. What it does is often lead to a "performance" of grief where we feel we must continue to suffer to prove how much we loved them. We see suffering as a testament to how much you loved somebody.
Sometimes that guilt also leads to shame. You feel like, "I shouldn't be feeling like this, I'm not a good person."
I saw this on the show Mom once: Marjorie loses her husband after a long caregiving journey and she feels nothing, maybe even relief, and everyone around her makes her feel like something is wrong with her. And then Wendy, who is a nurse in the group, tells her that when someone has done caregiving for too long, they have grieved long before the actual passing. Not feeling the pain in the moment does not mean you loved them any less [4].
Coming back to yourself and opening up to someone who gets the ambiguity of it is a difficult journey. But it is an important one.
You Forgot You Were There
There is grief in that as well. It is about how much time was lost in caretaking. Many people forget about themselves and do not know how to come back from it. When that person is not there, how do you deal with that sense of emptiness? Everything you did and felt was dedicated to that person. Sometimes it is not just the grief of losing them. It is the grief of not knowing what to do now. It is a sense of feeling absent from your own life. It is a loss of identity.
It reminds me of that line in Fleabag where she is grieving her mom and tells her friend, "I don't know what to do with all the love I have for her. I don't know where to put it." When the person is gone, it is almost like an amputation. For a long time, being a caregiver was your primary identity, and now you are left with all this caregiving love and nowhere for it to go [5].
That love is not lost. It is still yours.
Grief Has Its Own Timeline
Grief is not as simple as one would expect. It continues, and it does not end when you want it to. It comes in random, bizarre moments because your brain is trying to organize it. I read somewhere about how some of these memories are in old cabinets and they're not organized; when there is finally time, space, and safety, the memories start to organize themselves and they hit you. Research on how emotionally significant memories are stored shows that they are held in a fragmented, non-linear way, and when the stress of caregiving lifts, they surface in waves, often without warning [1].
There is also a physical collapse that happens. Your nervous system finally stops being on high alert for a cough or a footstep. Studies on caregiver stress show that being in that state of high alert for a long time keeps the body in a sustained stress response, and when the role ends, that shift can feel very disorienting [3].
The truth is that your body is coming back to baseline.
Many often talk about their grief as a companion. You cannot actually change the feeling, but your life evolves and expands around it. The grief does not go away, but you find new ways of living and new meanings.
It is important to take care of yourself when those moments of grief return.
Grief research shows that the experience is mixed. It is not one single feeling. It can be sadness, relief, love, and even joy, sometimes all at once [2]. Sometimes you could be sad, sometimes you could feel happy reliving memories, and sometimes you could even feel relief like, "Thank God it's over." These are all different ways in which you remember somebody, and it does not have to be a single definition.
If you are someone resonating with this, let me tell you: you cared and you cared deeply. But you deserve that care too. You deserve to live and to find people who do not tell you how you are supposed to feel. Grief, guilt, exhaustion, relief, and love, these things can all exist together.
There is no single way. There is no right way.
References
[1] Bhattacharya, S., et al. (2009). Memory consolidation and the hippocampal role in emotional memory processing. Neuroscience & Biobehavioral Reviews, 33(2), 141–152. https://doi.org/10.1016/j.neubiorev.2008.10.009
[2] Bonanno, G. A., Wortman, C. B., & Nesse, R. M. (2004). Prospective patterns of resilience and maladjustment during widowhood. Psychology and Aging, 19(2), 260–271. https://doi.org/10.1037/0882-7974.19.2.260
[3] Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The Caregiver Health Effects Study. JAMA, 282(23), 2215–2219. https://doi.org/10.1001/jama.282.23.2215
[4] Gorodetsky, E., London, N., & Baker, A. (Writers), & Widdoes, J. (Director). (2018, October 25). Flying monkeys and a tank of nitrous (Season 6, Episode 5) [TV series episode]. In C. Lorre, E. Gorodetsky, & G. Baker (Executive Producers), Mom. Chuck Lorre Productions; Warner Bros. Television.
[5] Waller-Bridge, P. (Writer). (2019). Fleabag [TV series]. Two Brothers Pictures; BBC Three; Amazon Prime Video.