So I thought it might be a good idea to visit the bereavement counselor. I know that hospices have to offer bereavement services for those left in death’s cruel tracks. I’ve been on every side of death and dying. I have been an oncology nurse, holding hands with those who are brave enough to fight the ugly fight that comes with a life altering, lifesaving, life ending, anxiety provoking illness. I’ve sat next to those who I have administered toxic drugs into their crying veins and wiped their foreheads as they heaved their guts out into pink emesis basins and blue puke bags. Rubbed the backs of those in pain; watched and provided presence to the ones who I wouldn’t even touch because just a light caress would cause a pain more immense than I could ever imagine. I’ve shared in the joys that come when the bell is rung, and the chemo is finished, and one’s battered body has at least temporarily won the fight. I’ve shared the deep sorrows that ominously arrive when the news comes down that the cancer has spread, the cancer has come back, there are no more options left to try. The fear in one’s eyes when the realization that this illness will be the cause of their demise has finally settled in.
I’ve been a hospice nurse, rushing in when death is very near. Rushing in too late, when symptoms are out of control, when pain is too much, when breathing is too disrupted, when fear is heightened and out of control. I’ve been ushered calmly in, when those brave folks who have decided to stop treatment, or to never start it, have determined to make the most of the seconds and minutes and days and months they have left. I’ve been there so many times at the last breath, at seconds after, holding my cold stethoscope against a lifeless body, proclaiming that life was indeed gone. Dressing a body with muscles tight with rigamortis, with old, bloody vomit dried in hair, with thick secretions matted into jaundiced skin, with dry eyes fixed in an open state, with old blood, and bodily fluids staining sheets and mattresses that once made a bed of wedded bliss and trying my very hardest to make a body without a soul look like more than a pallid mannequin all decked out for Halloween. I’ve been there myself in death’s cruel wake providing support and understanding in a situation where there is nothing to make sense of.
I’ve been a hospice inspector, determining regulatory compliance with all the rules and regulations and stringent laws that hospices and nurses and healthcare professionals must follow. I’ve been an advocate for families to make sure that agencies are following the rules they are supposed to be following.
I’ve scrubbed and scrubbed the rotten scent of death off skin. That smell of decay that never seems to dissipate. I’ve taken home the pain and anxiety of patients and their families. I’ve cried into my pillow at night for your children who will feel the pain of losing a parent at much too young an age. I’ve tossed and turned with no sleep for the feeling you will have when your spouse, the only love you have ever known will be done and gone and your world will be turned upside down. I’ve made myself sick with anxiety when a patient my own age will soon be gone from this world and she is so, so much stronger than I could ever be. And my own pain and angst will not even hold a candle to anything your family is going through. I will sacrifice time with my own children, my own family, and my own interest, to be support for you. But, that is only the smallest little sacrifice I can make at a time when a world upside down will never be turned right side up.
It is Lent right now, and I guess a time of soul searching and looking for meaning and ways to give up things, to give alms, to relieve yourself of bodily pleasures. I think that being a hospice nurse is the most rewarding career I have ever had. It is a bit self-indulgent, because by helping you, I realize that every single moment I have is precious.
But anyway, I am going through it all myself right now. Dad never really accepted death, we never really had a relationship with a hospice nurse. We just had a blur of the last few days, with a truly horrible nurse who never even learned dad’s name. He was just a number to her. Room 4009. I was a busy nurse on a floor. I worked grueling 12 hour shifts where I never peed or ate and cried in the parking lot before I went home. And even though I gave it my all, I gave all of my six patients every ounce of energy I had. I can believe that many shifts had passed where I only knew you as a room number or maybe a last name. I never knew your hopes or dreams or desires. I never knew the love you had for your family or your career. I never knew much beyond your allergies and medical history and how to keep you alive. And I am truly sorry to you. Whether it was my fault, or I was just a flaw in a meaningless cog in a broken wheel of a healthcare system, I am sorry. From the other side, when your own father is nothing but a number, it is painful, it is raw, and it is misery in action. The clash between the machine that is healthcare and the personal, horrifying experience that is a death denied for so long is the most dysphoric thing I have ever experienced. All the things I never wanted for him. The false hope, the over treatment, the over promising, the chemo days before death, the poison in his veins that caused side effects no one should ever bear, the lack of time. Time for repentance, for making amends, for making sense, or making rights, for living, or loving, and forgiving, it was all stolen from you in a whirl of true American grit. Of promises of fighting to the end, even when the fight is futile and sure to be a losing battle on all fronts.
So I went to see the bereavement counselor. To bereave – to take away by force. I guess it was by force, dad definitely did not want to go gently into the cold night. I hoped that she could offer some insight. Some small comfort from the other side, I’d hoped she would let me know that I would come out okay. That life would one day go on. That the dreams, the nightmares that come would somehow subside. The last visions of my dad. A once powerful patriarch devolving into a man in tears, a man afraid, a man holding his daughter in a way he had never done. A man with synthetic opiates pumped through a metal port implanted in his fragile chest. A man with artificial tubes draining his dark, almost nonexistent urine and pumping dry oxygen though his blood. A man swollen with fluid leaking from his veins, so malnourished that there was no protein inside to suck the fluid back in and keep the swelling down. The man whose lungs were slowly filling with fluid making breathing difficult and noisy. The man who never accepted help but was now totally helpless, depending on others for even repositioning his limbs on pillows. The man who always held his head high, but now could no longer summon the will to lift his head from the pillow. The man whose strong voice had now faded into oblivion and the only sound left in the room while we held vigil was the pumping of the morphine, the breathy flow of the oxygen, the deep rattling in his lungs as he breathed. The ticking of the clock counting down the time left in life. I was hoping she would give me permission, finally permission to not be the healthcare provider, to not be the oncology nurse, to not be the hospice nurse, to not be the medical inspector, permission to be the bereaved– the one left behind. The one mourning, the one taken by force. But I guess it wasn’t all that I expected. I guess she cannot provide comfort or give me permission to be what I need to be. She can’t stop the hallucinations that have come running back full force. The voices that tell me I wasn’t enough. That I am never enough. Maybe my problems are too deep seeded for her. Maybe I know too much. Maybe being on the other side and coming back is just too much to be able to help. Maybe I just need to walk alone until I find my way. Maybe I need to help someone else to help me help myself. I am not sure. It is month three and the numbness has transformed to pain. And the pain is deep. And the pain is hard. And the pain…And the pain…