My mother died on a Monday a few weeks ago. We buried her, in the Jewish tradition, the next day. But we lost her more than a year before when a cardiac event she survived robbed her brain of the oxygen that sustains it and ushered in a dementia that took her away well in advance of her death.
She was 90. I try to recall the long and full life she lived, but the erosion of her later years, especially when she lived in the fog and psychic distress that a compromised brain induces, occupy the foreground of my mind.
Dementia is a cruel disease -- whether delivered by Alzheimer's or stroke and other circulatory problems. Memory loss is just the surface of it all, and more germane to the person affected early on when they know they are losing it. But when more advanced dementia destroys our sense of time and location and the mind becomes awash in eras, places and people past. For my mother it was her years as a young woman in New York City and the family I recall as a child. Had her mind conjured up sweet memories maybe we all would welcome an escape to times long ago, but she was frequently helpless and unable to find someone or do something that to her had a sense of urgency. "When will Abe be here to get me? I'm not ready, let's get going! Where is Eva?" These reveries would escalate in intensity as would the volume of her crying out. I have seen this state in many people with dementia.
The mental torment of dementia is what gives it its unique cruelty. There is no way the sufferer can say, "here is where and how it hurts." They suffer and seek relief with actions that do not serve them or simply know not what to do. Mental pain, helplessness and no exit are the trinity that drive suicide in the cognizant; for those whose minds cannot process what is happening their distress mounts, which we see in their agitation, moans and screams. As horrific as the psychic pain of dementia is, I wonder if it gets the recognition it warrants. Medical care has come to appreciate the crucial importance of mitigating physical pain but mental pain, no less agonizing, has yet to receive its proper due. Psychic pain is equally distressing as physical pain, and to make things worse, for dementia it has few good remedies.
I know death was a relief for my mother -- a desired end. She told me so, echoing earlier conversations, last year before her brain was so damaged and when she had the clarity to see her debility growing. She also had made her wishes perfectly clear years before in her health care proxy and power of attorney. She understood, though never used the term, what dying with dignity meant. She also did not want to be a burden on the family; even when she could barely think she always answered a question I would ask about her with a return question that asked about me. "Are you hungry? Where will you sleep tonight? Was it a long drive to get here?" Even when she did not recognize who I was.
While my mother saw her debility coming and she was already wheelchair bound, she could not foresee, nor could her family, that overnight she would go from frail and slowly mentally failing to severely demented. Six years earlier she had moved from her own home, long a widow, into what we call a retirement community -- one where as age and infirmity mount a person moves to greater levels of support and care, with the highest level being a skilled nursing facility. And that was where she spent the last year of her life among two dozen others on a ward devoted to those with dementia.
Her residence was one we were fortunate to afford. My mother and our family received thoughtful, kindly and capable services. Kindly was perhaps what helped her the most during the dog days of confusion and fearfulness. I don't like to think of the countless others who will never receive this standard of care.
As a doctor, I have seen death. But as up close and personal as this was over a protracted time (my father died in weeks from the complications of a cancer) I was taught anew how death is usually a process. Only the very final stage -- when breathing, pulse and blood pressure signal that life is unsustainable -- has a pretty predictable clock of hours to days, at most. Otherwise, dying marches to its own drummer. Never believe what you are told even by the experts because dying follows the law of large numbers, which is to say there is a great variance around an average (known as a distribution curve) and for all those who fall into the average time predicted many proceed more quickly and many more slowly into the good night. I made a few trips this past year prepared for a funeral only to return home having discovered that it was not quite time.
Which is also to say that decisions abound during the process of first declining then dying. Not to mention the often tortuous decisions about money, there are decisions about treatments: how should someone be treated for their illness as well as the cascade of complications that frequently befall someone as their immunity diminishes and their infirmity increases. There are decisions about care taking: home or institution, supplementing or not the staff of a facility or the family at home. There is the decision about whether to hospitalize during a crisis and then what is done at the hospital; the most well known decision is whether to DNR (Do Not Resuscitate), but the questions are far more nuanced, as a rule. Here is where a living will or health care proxy is a blessing; no need to guess about someone's wishes, because you know mostly about whether to use aggressive measures like a breathing tube and ventilator, or about using antibiotics, or food given through a tube or into the veins when someone cannot nourish themselves. When aversion to death results in no prior talks or clear wishes, we have added perplexity and potential family conflict to the already heartbreaking process underway.
Whose responsibility is it anyway to talk about and decide the tough and chilling choices for the process of the near to and end of life? Of course that will differ with each person and family. What seems to be the most troubling is when each party looks to another instead of joining with each other -- including the person whose life it is, their families and other loved ones, and medical professionals charged with their care -- to face the process of clarifying, recording and bearing the emotional demands this evokes. My family is big on reality, facing it unblinking, so we were fortunate to know the road we needed to follow. Be kind and deal with the process of decision-making as early as possible. That will be a gift to all concerned.
Just as we know from the Bible and its popularization, there is a time to live and a time to die. My mother's time was ushered in after she fractured her hip trying to climb out of bed during a night of terror we could only infer was from her distress. But here is a story about American medicine that needs to be told.
The fracture was discovered some days after it occurred when she was rushed to the hospital with trouble breathing. I received a call from the physician's assistant to the chief of orthopedic surgery. My mom had a hip fracture but the bone had not been displaced from its socket. There was no way to have known since she had not walked for more than two years and relied on a wheelchair for mobility. She was in no pain. The PA said they wanted to operate, to place a set of screws in her hip. When I said I would speak with my family, but I thought not, that was when I found out how ill-programmed our health care system is -- so to speak. I called back to say no and soon received a call from the surgeon himself to urge me to proceed with the surgery. I can't imagine what someone not a doctor might have done. I had learned that the standard of care in Europe for such a fracture in someone as infirm and incapacitated was three to four weeks of bed rest.
I knew my mother was failing and she had no pain. Why would we subject her to surgery that would cause great pain, from which she would possibly not survive? Or if she did, infection could readily follow, which would debilitate her even further in the remaining days of her life. What if my family had to pay, instead of pretending we did not because Medicare would when, in fact, we are all paying for Medicare and an alarming percentage is on late life treatment that does little or nothing to benefit? So we held our ground, no surgery happened and off to bed rest my mother went after she left the hospital and returned to the nursing home.
That moment was a wake up call for our family. We asked ourselves what would give mom the best moments of life and experience in the time she had left? We realized that goal would be best achieved if we placed her in hospice care. This may sound oxymoronic, but when the time comes give it a try. Fundamental to hospice, contrary to common understanding, is how to make the most out of what time remains, not how to deny care or bring life to a rapid conclusion. For my mother, we were able to take her out of a bed and into a wheelchair, where she had no pain even when seated on her hip. She perked right up when she sat among the living in the day room and gazed about, despite the dense fog of her dementia. With hospice she did not have to be confined at night to a bed she sought to escape; instead a comfortable mattress was placed on the floor and her nights passed peacefully. The nursing home, with the support of hospice staff, focused not on her medical care but on kindly ministrations that enabled her to more fully feel the comfort of human caring.
Weeks passed but then her time came. When it did her breathing labored, the oxygen thinned in her blood and her feeble organs closed down. In hours, her ordeal was finally over. She had passed by the time I got a plane and arrived, as did others in my family, to prepare for the funeral the next day. There was little to do but help everyone get there and support one another since my mother had made every arrangement and paid, in advance, about every bill that death produces.
The night after the funeral I had a dream. I was robbed when going about some noble business. Try as I might to recover my possessions, which seemed of great value, the deed had been done and there was no repossessing the goods. The injustice was what first struck me upon awakening. Loss strikes many a chord. Since then I have felt relief (for my mother, myself and my family), a melancholic heaviness, anger and greater proximity to those I love. I imagine those are openers in the process that has begun.
I also ask, and find no good answers, how the end of life might be better handled, at least in my country? Western medicine seems particularly short of effective interventions with many terminal illnesses and diseases of the brain like advanced dementia. Fighting death and disability at the end too often steals what few moments of actual life remain for someone facing imminent passing. For my family, it was human kindness and eschewing aggressive and dubious treatments that enabled our mother to savor at least a few good moments while still on this earth. But thankful as I am for that I still wonder, until we have more miracles in medical care, is there a better way than the path we are so stubbornly now on?
The opinions offered herein are solely my own as a psychiatrist and public health advocate -- and in this case, as a son.
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