The doctors want to know if my mother is on Coumadin. They want to know if she is in any pain. They ask her her name. She can answer none of these questions.
When she slipped out of her wheelchair and on to the floor the nurse who was with her left my mother where she was and called an ambulance. There was no one to accompany her to the hospital so my mother’s sister and brother-in-law, both well into their eighties, drove the 25 minutes from their house to be with her.
When the nurses and doctors asked my mother questions, my mother’s sister answered for her.
“She has advanced Alzheimer’s,” my aunt said, “She can’t answer questions.”
The doctors and nurses murmured like they understood, but for the next six hours, while my mother was examined, poked and prodded, sedated in order to be calm enough for an MRI and x-rays, the same questions were asked over and over.
Over and over questions were asked, the same questions about medications, how she was feeling, if anything hurt. My mother could answer none of them. Her chart was never examined.
“They should put a big red sticker that says ‘Alzheimer’s Patient’ on the top of her chart,” my aunt said to me, “So people would know.”
It wouldn’t matter, I knew, because no one looked at her chart anyway. And physical charts no longer hang at the foot of a patient’s bed; they are accessed by computer. This might seem like a time saver, a way to make sure everyone is on the same page. But no one looks at the charts. The doctors and nurses enter my mother’s room over and over and ask questions of her, as though she will finally have an answer.
In the ten years since her diagnosis, my mother has been hospitalized only once. For pain. But in the past month, she has been hospitalized twice: the first time for flu and pneumonia, the second most recently for slipping out of her wheelchair and onto the floor.
When I went to be with her in the hospital that first time, her flu and pneumonia were being treated with Tamiflu and antibiotics; she had an IV for hydration. Her arms from wrists to shoulders were black and blue from the combination of the IV’s insertion into her fragile skin and the restraints used to tie her to the bed so that she would not try and escape. The first night she was admitted the ER doctor talked to my aunt about my mother’s code, and whether she had a DNR. A day later my mother was trying to rush down the hall, dragging her IV. She was restrained and has since not walked without help again.
Days of sitting with my mother as she recovered from the flu and pneumonia meant trying to get her to eat, to leave the bed, to hobble down the hall. It meant feeding her as she would eat from no one’s hand but family. It meant trying to get her well enough to return to the memory unit of the assisted living home where she had been for a decade. The fifth day of her stay a doctor came in and examined her and then asked me if her current condition was normal.
“She has end stage Alzheimer’s,” I told him. He frowned. He hadn’t looked at her chart.
The next to the last day of her hospitalization my mother would not wake, she would not move, she would not eat or drink; she would not rouse at all. I kept trying to find nurses and doctors to help me wake her, to ask if she needed an IV put back in so that she would not get dehydrated. Everyone told me she was just having a bad day but I saw her dying in front of me, cured of the conditions which had brought her to the hospital but dying nonetheless.
But in the morning my mother was sitting up, shakily, on the side of the bed; she was sipping juice. An hour later, I asked some nurses to help me get her out of bed and walk her down the hall. In the afternoon, nurses from the memory unit were coming to assess her condition and determine if she could return. I wanted to show her at her best. But it wasn’t enough. That evening, New Year’s Eve, the hospital discharged her and we moved her, temporarily, we hoped, to a nursing home. There, we hoped, she would learn to eat and walk again, enough so that she could go “home.”
What happens to an Alzheimer’s patient who has no family? The patient who has no one who loves him or her? The patient who has outlived his or her family? The one who has no advocate to answer the questions the patient cannot? What happens to a patient won’t try and feed himself or even take nourishment from a nurse or aid? Who has nowhere to go? Who matters to no one? I shudder to think.
In the last decision my mother would ever make, she chose to go into assisted living in New England where she had lived for the past 26 years. Two of her daughters lived hundreds of miles away, the third nearly two hours away on an island. My mother’s elderly sister lived close by, and there were many friends and co-workers to whom my mother had become attached. She felt at home; she did not wish to leave. I might have been able to anticipate all that would come from that decision had I not been still reeling from her diagnosis. I asked her to come down close to me. She said no; she wished to stay where she was.
But friends and coworkers have fallen away or died or finally realized that my mother does not know them. My aunt has grown more frail; she does not drive. Her husband tends to my mother’s financial needs and drives his wife to see her. And they end up being called in emergencies, while I worry from a thousand miles away.
The Telegraph recently wrote about the British Medical journal report on “a checklist of 29 assessments (which) could spot which of the elderly are closest to death so costly treatments are not wasted on them.” Included in the “‘The Critera for Screening and Triaging to Appropriate aLternative care, or CriSTAL” are low systolic blood pressure, need for oxygen therapy, hypoglycemia, low urinary output, a personal history of active disease including dementia, previous hospitalization within one year, weight loss, weakness, evidence of frailty, inability for physical activity or new inability to stand, and being a nursing home resident.
My 86-year-old mother has all of those signs, although not others and no disease other than her dementia. She has a DNR; we have asked that she not be taken to the hospital unless absolutely necessary. We do not support long hospital stays or costly treatments. But what do you do when a person comes down with the flu and pneumonia or falls out of a wheelchair? Who makes that assessment? If my mother was at home we could have just made her “comfortable,” but would we have been comfortable with that? She is not ready for hospice, or at least we don’t think she is. Their guidelines include several of the same indicators as above but she is unable to make her own choice and we are not quite ready to make it for her. Besides, we have no idea whether she has a week, a month, or a year or more left. Aside from the dementia she is healthy; had she not come down with the flu and pneumonia (70% of the elderly who are hospitalized for pneumonia die), she might well have never had to leave the memory care unit. And as it turns out she did not break a hip (1 out of 5 patients with hip fractures die within a year) or any other bone when she fell out of her wheelchair.
I don’t want my mother to die. But I don’t want her to remain in a nursing home for the remainder of her life. My family and I fought hard against it, even though the facility she is now in is better than most. We had hoped against hope that her transition from assisted living to the memory unit in the same facility would be her last move. We are now confronted with what seem like new issues and concerns daily. We are not asking for extraordinary care; we have signed a waiver against feeding tubes or transport to the hospital for anything but the most extraordinary issue. But day to day my mother deteriorates: her recent hospital stays have sped up that deterioration. One day she could walk and feed herself and now she needs help. In October she knew me, in December she did not. I have really lost her.
In “The Fallacy of ‘Giving Up,‘” Atlantic Monthly writer James Hamblin discusses recent books by Atul Gawande, Sherwin Nuland, Angelo Volandes. These are books by doctors who reveal the ways in which the elderly are kept alive by physicians, the ways in which we can’t talk of death and dying.
Volandes, writes Hamblin, notes that “most doctors currently in practice graduated medical school before palliative care was ubiquitous, and before The Conversation (about end of life issues) was part of curricula.” And Volandes points out that while 80 percent of Americans wish to die at home close to 55 percent die in nursing homes or hospitals. This, is of course, assuming that they can make that request. My mother cannot.
Hamblin notes Atul Gawande’s statistic that in the 1940s, almost everyone died at home. “But by the last 1980s, a mere 17 percent of people did.” And so, says Hamblin, people today “died fighting. They died fighting even when the fight was futile. They died on sterile wards with electrodes taped to their chests and tubes in orifices both natural and manmade. They died deprived of sleep and good food and all things familiar….And worst, they died the way they most likely wouldn’t have wanted to die.” As Volandes stresses, much of this could have been avoided if doctors and patients could have had The Conversation.
My family and I have had The Conversation. We have talked about my mother’s death; we talk about it still. We have to; we have been living with it for years. Most recently we actually talked about the details of it: what will be done, where she will be buried, who will do her service. I lie in bed and mull over her eulogy.But there is such a fine line between major intervention and treating her for things that happen, things from which she may well recover, at least physically. And when my mother has no voice, when no conversation was had with her before she got ill, we are now torn between asking the doctors and nurses to make her comfortable and asking them to put in an IV because she will take fluids by mouth. As soon as my mother’s flu and pneumonia were “cured,” the hospital wanted her out. We had to find a place for her to go. To live or to die.
We aren’t giving up. But we aren’t fighting too hard, either. Except for comfort and safety. At this point all I want is for my mother to be at peace for the time she has left. I want her transported to no more hospitals in no more ambulances. I want her no longer sedated so that a test can be run or a line can be inserted. I want nothing to add to the agitation that seems already to permeate her day to day life. I want no more disruptions, no more interventions. But she cannot die at home or with me. That avenue is lost. So if she falls ill or slips from a chair she will most likely end up in a hospital again. And we will answer the doctor’s questions because my mother cannot.
So this is how you die. Not with a bang but a whimper. With a slow leaking of self, with a mind which no longer exists but is trapped in a body which won’t give up. This is how you die and how those who love you watch it happen, helpless.