There isn't much of a road map on how to be with someone actively dying. And from my experience with hospice professionals, medical experts and grief counselors, most are quite limited in practical knowledge. Unfortunately most end up simply getting good at creating intellectual distance, detachment and closing down their hearts.
I was an active full-time care-giver for my dad in his final 2.5 years of dying initiated by a stroke, the final 1.5 years included a mental and physical decline, leading towards eventual bed-ridden, digestion issues, home hospice care, and dementia deficits. My mom was also full time care-giver, but I ended up shouldering more of the emotional load for her and the rest of my siblings.
It's very common and natural for people when in emotional overwhelm to freeze and try to defer to experts or others for decision making.
I remember towards the end, when the medical director examined my dad, and gave an 'actively dying' prognosis of a few days to weeks. That was a game changer, all options and choices were now LOSE or LOSE. We could have chosen to take him to the hospital and 'keep fighting' (symbolically), but rationally that would have added more stress and invasion towards my dad, lowered quality of life, and possibly left him to die in a sterile hospital.
The choice of keeping him home and continuing to actively care to him in the face of immanent failure was also quite difficult. At the same time, it was a struggle with my mom's unconscious need to feed food and water to my dad. His ability to swallow was degrading, and his body was actively shutting down, so giving him water was likely raising his chance of pneumonia. But she had a rigid belief that starvation and dehydration was adding suffering, so she was dug in. It wasn't my place to take away her selfish choice to keep holding on. In the big scheme of things, all choices were lose-lose, so any particular decision doesn't really matter. But in the midst of the chaos, it can be hard to stay conscious and keep the bigger perspective.
I grew and learned from the experience immensely. One lesson I learned or possibly how I coped, was to focus on
'selfless service', it was about staying present and consciously open to everyone's needs and suffering. It was primarily around my dad's needs, but my own needs were just as important, along with my mom's needs and emotional limitations, and also considering my 2 brothers' needs and capacity for suffering. And also situational needs, recognizing the abilities and emotional capacity of hospice workers, limitations of medical experts and Allopathic medicine, and essentially everyone working against a big unknown towards a known eventual death.
It's so easy to shut down and mentally run away or check out. But these final moments are so precious and emotionally charged, underneath the initial overwhelm is a palpable transcendent energy, possibly a taste of divine surrender?
My mother triggers some of my parts so badly, still. Makes me feel helpless and useless and bad.
Maybe consider these recent triggers, as an unconscious and symbolic attempt by your mother to share her suffering with you. These feelings of helplessness, uselessness, and bad shame point towards feelings that she feels deep inside. This situation is triggering deep unresolved suffering from within, bringing it to the surface, and trying to force her to face it. And she's just digging in with her will power, and grasping for dear life with denial, avoidance, and blame (projection) towards you & others.
If there's any energy or capacity left, can there be a choice to keep the heart open? To radically accept and surrender to the present moment and all the overwhelm and suffering as it exactly is? To see your mom exactly as she is, allow her infinite freedom to be as unconscious, resistant, shut down, negative, manipulative, as she chooses to be at the current moment. To ease off attachment towards control, to let go of false hope, and to trust in divine grace?
There is just so much happening right now, so many levels and layers of grief and overwhelm being triggered within all involved. It is a precious and selfish opportunity for transformation and healing for you, but the more you can stay open for yourself, the more you also can be present and helpful with everyone else.
Sorry for the clunky response, hope it wasn't too intense.
Here's another perspective focusing on compassion by Joan Halifax who has worked with the dying for over three decades:
What is compassion comprised of? And there are various facets. And there's referential and non-referential compassion. But first, compassion is comprised of that capacity to see clearly into the nature of suffering. It is that ability to really stand strong and to recognize also that I'm not separate from this suffering. But that is not enough, because compassion, which activates the motor cortex, means that we aspire, we actually aspire to transform suffering. And if we're so blessed, we engage in activities that transform suffering. But compassion has another component, and that component is really essential. That component is that we cannot be attached to outcome.
...
A person who is cultivating compassion, when they are in the presence of suffering, they feel that suffering a lot more than many other people do. However, they return to baseline a lot sooner. This is called resilience. Many of us think that compassion drains us, but I promise you it is something that truly enlivens us.
--- "Compassion and the true meaning of empathy" TED talk by Roshi Joan Halifax -
