The subject of death comes up often in this line of work. On this blog, Alice and May have visited it on more than one occasion. They have shared how they experienced losing residents they’ve known and cared for, and how they cope with the deep sense of personal loss. These experiences and feelings are echoed every single day in the hallways of LTC facilities and on social media. Death and loss are realities that all caregivers have to deal with at some point. For some, it becomes too much to bear and they leave the field.
Death is also at the heart of the negative public perception of nursing homes. The term itself, nursing home, evokes images of forsaken and forgotten souls, a place where we “stick” people when they are no longer of any use and we don’t want to be bothered with what’s left of them. That even facilities that offer good care and where the residents seem content, are still essentially gilded human warehouses, nice places to go and wait for the inevitable. Abandon hope all ye who enter here.
Those of us who work in direct care know that the reality is not quite that dreary. While we can be the staunchest critics of the nursing home industry – because of what we know about the very real problems – we also know that these places are and can be so much more than just human warehouses. We know that not everyone who enters them is prepared to simply submit and waste away. That sometimes people who have experienced severe neglect on the outside can actually rally after admission. Good medical care, proper diet, therapy, and a sense of community and belonging, can go a long way in restoring a sense of wellbeing and hope. That yes, even here, life goes on.
While good care is essential, it does not address the deeper question of a meaningful existence. Here, in the final stages of life, where comfort is often regarded as the highest value and the will to live runs on sheer momentum, the question arises – and I’m going to be blunt – why bother? Why bother to go on when you no longer feel productive or useful? Why bother when you feel as though you’ve become nothing but a burden? Why bother when you’ve lost so much that you hold so dear? And the toughest question of all: why bother when the end result is going to be the same no matter what you do?
Good caregivers do all they can to address the “why bothers?” Through our awareness of our elders as individuals and by engaging them emotionally, we assure them that if nothing else, they still matter because they matter to us. We can’t give them back everything and we can’t reach everyone, but there are opportunities to make a real difference and we morally obligated to make the most of them.
Still, there is that nagging reality always present in background, the sense of doom and meaninglessness associated with our mortality.
But we are not powerless. First, we have to reject the conventional view of aging: that the final stage of life is less meaningful than everything that comes before it. We need to embrace the idea that we can change, grow and develop right up to the end. And we must stop downgrading the intrinsic value of moments that are experienced during this stage of life. Even to the end, we can retain our capacity to be surprised or fascinated or enthralled, and to value the comic absurdity of life. And we can still lose ourselves in these moments and share them with those around us without reference to some ultimate meaning.
Second, we have to rebel against death itself. Not against its reality, but against its hold on us; against the idea that our fate to die must inform our actions and constrain how we experience life. We need not be held captive to the ego’s revulsion to nonexistence. By liberating ourselves from death’s grip on our being, we are giving ourselves permission to really live.
For our elders, it’s not enough that we tell them that life is still worth living. Instead, as caregivers we must discover what that means to them, in the most specific, practical terms. We must facilitate and share with them, when we can, those things they find meaningful. Each time we do this, we are joining them in their rebellion against death and boldly answer the question “why bother?” And we celebrate with them one more victory in life.