Seize the day

The Thinker by Rodin

For those of you wondering about my dying mother, she is still alive and unfortunately she is not improving. I do my best to visit her once a week. I try to visit on Saturdays around lunchtime. This usually works best for my schedule. I arrive about forty-five minutes before lunch. By this time, her long morning nap is over and she is often reasonably coherent. This gives me a chance to talk to her for a bit before lunch. Lunch is served promptly at noon in the dining room, so I make a point to have her there on time. She can no longer feed herself, so I feed her. I can tell she resents my help but she also accepts that this is the way things are. As miserable as she feels she is not yet ready to check out of this life.

I have to check myself when I feed her. I find myself unconsciously opening my mouth, as I did with my daughter as an infant when I fed her. It would be insulting to say, “Open up the barn door and let the horsies in.” Yet the words want to form on my lips. Forkfuls of food go lackadaisically into her mouth. She chews but swallowing is increasingly difficult. It can lead to coughing fits. This is just one of the effects of her disease, Progressive Supranuclear Palsy. There is this, along with her difficulty in moving her eyes from straight ahead. Focusing is also difficult for her. At this point, her muscles are atrophied. A couple months ago, she could usually sit up on the side of the bed by herself. Now this is beyond her. Her one remaining act of self-care was to brush her teeth. Now this is becoming impossible for her too. I gave her an electric toothbrush and had to turn it on for her; she does not have the agility to press its on button. She can no longer seem to reach beyond her front teeth. Therefore, I do most of the work. She may be dying, but I will not let my mother suffer the indignity of dirty teeth and bad breath. She would not want this either.

Now she must be carried to and from her bed, dragging a catheter bag with her. She can still move her arms and legs a bit. Nevertheless, you can tell she is still overwhelmingly frustrated. The only good part of her dying process is that she spends much of her life asleep or dozing. I woke her up last Saturday about 11:15 a.m. I put her to bed for her nap at 1:15 p.m. She was more than ready for sleep.

I do not know how typical her dying process is. I get the feeling that hers is a lot more benign than most. She can still think clearly. Her speech is often soft or garbled but she can tell us how she feels. She is not like the sixty something woman with Alzheimer’s endlessly walking up and down the halls calling out, “Mother? Where are you mother?” Nor is she like the woman who sits next to her in the dining room, who had a stroke, who grunts instead of talks, and can only use the left side of her body. Nor as best I can tell, is she in any pain, other than perhaps mental anguish. My father visits her twice a day but this is not enough for her. She hates it when he leaves. She feels abandoned and unloved. She does not understand why she cannot go and live in their apartment. She believes we could take care of her there. If she cannot have full use of her limbs, she at least wants the dignity of dying in her own bed in her own home. Why can we not give her at least this?

Maybe at the very end of life that will be possible. If we were certain she had a week or two left perhaps nurses or loved ones could be there with her around the clock. Not yet. Perhaps in time she could go to a hospice. At least in a hospice she could get more of the focused attention that she wants. For she can no longer play card games. She cannot focus on the television. She cannot read a book. There is just the frustration of an active mind trapped in a body that mostly refuses to respond.

When I can pull myself away from her situation, I can observe the dying process as it actually is rather than in the abstract. It is not quite what I expected. Although she has only been in the nursing home about four months, it seems inordinately long to me. I do not know how much longer she has. Typically, it takes one to two years before this disease kills. Her kind of dying seems to be like death from a thousand small cuts. Each time I see her she is slightly for the worse. It is hard to know which one will cause the final collapse of her fragile system. Nevertheless, with certainty one of them will cause her death.

Last week I brought pictures of my wedding to share with her. It did help cheer her up a bit. She liked looking at pictures of herself when she was still so young and vigorous. She was 65 when I was married but looked closer to 45. With each picture was a story and a memory. One picture was of my wife’s grandmother. She passed away about five years after our wedding. “Everyone dies in time,” my mother said sadly, yet in a matter of fact way.

To the dying and to those who love the dying, death is not fair. Dying is a slow motion horror movie that is not make believe. Its certainty and finality are both inescapable and crushing. It is also, at some point, simply accepted. I think that is where my mother is now. That is also to some degree where I am too. There are few things in life that are absolutely certain. Death is one of them. Death will consume us all in time. Whether we devolve into nothingness or, like chrysalides, are transformed into another form of being, no one can say with certainty. Nevertheless, death is final. No matter what divides us from each other, dying is our one common experience.

Through much of my twenties, thirties, and even into my forties my mortality stalked me. I had no answer for it other than to try to ignore it. That was futile. It was like trying to ignore an axe murderer you know is outside your door. However, through observing my mother’s dying process I now find an odd sort of catharsis. Seeing the reality of what will happen to me in time (although my exact experience will likely be different), I am no longer quite so afraid of age, dying and death as I used to be. Now, for some reason, I feel an odd sort of peace with my mortality.

In a way, though I still in midlife, I feel almost reborn. It took neither a savior nor a holy book to make me feel this way. I just had to grapple first hand with my fear. Now dying is not so mysterious. I do not like to see my mother this way, of course. I feel sad and frustrated for her too. I feel more than a bit helpless that I cannot do more for her. Now dying is not an unknown. It is tangible. It feels like silly putty. I can shape somewhat to my own ends, though it always remains the same stuff.

Death is hard to look at but is no longer quite the horror movie of my worst imagination. It was not Freddy Kruger outside my door. It is more like an old, miserable, hungry and abandoned dog wailing out its misery. It turns out, for me, that the way toward acceptance is to open the door and pet the dog. While I cannot make the dog happy, I can give it some comfort. I can hold it to my bosom and I can experience its pain. Moreover, maybe if I shed a tear then my sympathy will turn into empathy. Then maybe I have brought some form of solace to the dying during this distressing time, and some comfort for myself too.

Now I feel what I heard in so many words but could not emotionally grasp. Life is finite. So squeeze. Squeeze every drop of vitality out of this limited mystery we call life. Live life fully so you can leave it with as few regrets as possible. As Gandalf (the wizard from The Lord of the Rings books and movies) put it, “All we have to do is decide what to do with the time that is given us.”

Seize the day.

Bird Flu Fever

The Thinker by Rodin

If Occam’s Razor ceases to exist a year from now, it will not be because I will have lost interest. It will be because I am dead. Dead of avian flu, the bird flu that is wreaking havoc in Southeast Asia, has already infected humans and now has migrated to Turkey.

Until today, I was concerned but not really on edge. I can read terrible stories about massive death and destruction but still feel relatively safe in my cocoon. Hurricanes happen to people along the coast. At most, those of us who live here in Northern Virginia have to worry about flooding from a hurricane. Earthquakes like those in Kashmir that killed tens of thousands of people? It could happen here, but it is not very likely. I am far away from major fault lines. Could I become a victim of terrorism? Possibly, but it is not very likely. I do not work in Washington D.C. anymore. I do not take the Metro. I either hop in my car or bike the three miles to work. As gruesome as it sounds, if suitcase nuclear bombs were to go off downtown, at least I am outside of the likely blast zone.

Yes, I could contract cancer, have a stroke, die suddenly in a car crash, or develop some other terrible disease that could fell me early. While I would not wish an early death on myself (or anyone), I would feel better about dying from something conventional like a deadly heart attack than from contracting a virulent form of the avian bird flu.

The Washington Post, perhaps American’s scariest newspaper, printed this article on page A-2 of today’s newspaper. Many of us have heard about the 1918 flu that killed millions of people in this country. As awful as that was, this avian flu could be much, much worse. How much worse?

“This is a nation-busting event!” warned Tara O’Toole, CEO of the University of Pittsburgh Medical Center’s Center for Biosecurity. Speculating that 40 million Americans could die — that’s about one in eight — she warned: “We must act now.”

“We and the entire world remain unprepared for what could arguably be the most horrific disaster in modern history,” inveighed Gregory A. Poland of the Mayo Clinic and the Infectious Diseases Society of America. Somebody in the audience sneezed, and Poland added: “The clock is ticking. We’ve been warned.”

It was hard to top that, but Constance Hanna, an occupational health specialist, tried. “Let me paint you a little picture,” she began. “Twenty to 30 percent of your employees don’t show up to work . . . schools are closed . . . transportation systems are curtailed or shut down . . . Critical infrastructure will or may fail: food, water, power, gas, electricity.”

If that is not enough to get your heart to skip a beat while sipping that café latte, it only gets worse:

“Suppose the pandemic comes next year,” she said, and “a year and a half from now, next winter, you’re thinking about today. You were one of the lucky ones: You got sick but you recovered and now you have immunity against the pandemic strain. But one out of four Americans was infected, one of four people sitting here today, and half of them died.” Some people looked around: There were about 200 in the room, so about 50 would get the bug, and 25 would die.

“Death rates approaching this order of magnitude are unprecedented for any epidemic disease,” contributed O’Toole.

This was difficult to top, but Poland tried. “I want to emphasize the certainty that a pandemic will occur,” he began. “When this happens, time will be described, for those left living, as before and after the pandemic.”

Humans have already caught the Avian Flu. Of those who caught the Avian Flu, the mortality rate has been over fifty percent. What has kept it from turning into a pandemic is that the virus has not mutated into a virulent form that easily infects humans. However, this virus has already mutated into many deadly forms. It would not be surprising if it did mutate into a form that kill millions or billions of us.

What to do? Clearly we need to develop a vaccine, produce it in mass quantities and give it to every man, woman and child in the country. There is one big problem. The vaccine we develop for today’s version of the flu, if we can make it at all, may be ineffective on a newer, mutated, virulent form of the flu. In addition, there is another problem. The cost of the vaccine would be $5-$16 billion. That is not exactly pocket change.

Our president thinks he is on top of the situation. He is pondering using the military to quarantine parts of the country that might pick up the disease, an option that is probably illegal under current law and probably impossible to enforce. Moreover, he has our public health officials talking with international health officials to come up with strategies for dealing with the threat. These are necessary steps, but they should have been done years ago. Instead, as usual, we largely ignored the problem.

What we have not seen so far is much understanding from our public officials acknowledging the seriousness of the threat. Imagine what life would be like if we lost ten percent of our population. Imagine if one in eight Americans died from this pandemic. Imagine if you survive at all, whether your spouse or children would survive. Imagine trying to get them to a hospital to find that they are overwhelmed with flu cases. Just like in New Orleans, when you need help there may be none available.

For the survivors, the world would be changed dramatically. Not only would millions of people die, it is not even clear if survivors could maintain their current lifestyle. A flu of this magnitude would effect everyone. Would there be enough doctors and nurses left to care for the living? Would food be able to get to market? Would there be enough people to keep refineries working? Would civilization as we know it collapse? Would we devolve into a brutish anarchy?

I am no public health expert but it is long past time to blow the claxons. We need to sober up our elected officials very quickly, and we need them to act intelligently. We should be developing a vaccine to protect against the current form of the disease. It may or may not work against a virulent form of the flu, but it is better than doing nothing. It might cut the mortality rate. In addition, of course we need to monitor the spread of the disease carefully and its mutations.

Even if we had perfect knowledge, there are no guarantees. The virus will likely be able mutate faster than we can develop strategies to deal with it. We cannot trust to luck, but we may have to. There may be no place on earth untouched by this pandemic. If we do not know how the citizens of New Orleans or Kashmir feel then we may all soon have similarly profound experiences.

Up next, Isaac Weisfuse, the New York City deputy health commissioner, provided some logistical fears to add to the medical ones. “We’ll be inundated,” he said. “We have no [antiviral] Tamiflu. We have no vaccine. . . . There is no cache of respirators.”

There was little left unsaid for speakers lower in the program. Jeffrey Levi of George Washington University prophesied a panic of “millions and millions of people” trying to get antiviral prescriptions filled. Hanna struggled for superlatives: “We haven’t even begun to conceive of, to understand, to comprehend what that may mean for our workplace.”

That was ominous, but it did not approach O’Toole’s apocalyptic fervor: “uniquely virulent . . . hospitals will be quickly overwhelmed . . . this time of peril . . . quarantine is not going to work.”

In the Nursing Home

The Thinker by Rodin

When my time comes to depart this earth, I want it to be unexpected and swift. I want to be doing something innocuous like reading the paper one moment then be instantly dead. Is that too much to ask? Perhaps in the afterlife I would regret my decision. Perhaps I would have wanted closure. Perhaps I would have wanted one more opportunity to tell my family how much I love them. Perhaps, just to be on the safe side, I would have wanted time to call a priest over and make a final confession, just in case all that Catholic mortal sin stuff is true. (“Bless me father, I have sinned. It has been 32 years since my last confession or even went to church.”)

However, if I reach the point where I cannot care for myself I will most likely be like my mother and end up in a nursing home. Her nursing home is probably better than most. Renaissance Gardens at Riderwood is, if nothing else, a clean and attractive place. It helps to be in a new building. The lobby is broad. The windows are plentiful. The receptionist smiles. The floors shine. They had better. Because nursing home living here is not cheap. It runs about three hundred dollars a day, plus expenses.

I blanched when my father told me the price. I remember being shocked to pay $700 a month for day care. Nevertheless, three hundred dollars a day? That is over a hundred thousand dollars a year! I had best take out a long-term care policy right now. College is but a drop in the bucket compared to the cost of slowly fading from this world.

For that kind of money, I would expect more amenities. But the reality is that when you are in a nursing home you cannot appreciate amenities. You want the basics. My mother gets a hospital bed, a small closet, a nightstand, a sink and her own bathroom. She gets a call button that summons an aide. With luck, he or she will arrive in a couple minutes. Of course, it often takes much longer since you are likely in a queue. One resident next to my mother’s room still has the power of the human voice and he is not afraid to use it. “Nurse!” he bellows on and off during the day, very loudly until he gets attention. It makes my teeth rattle. Fortunately, my mother does not seem to notice the noise.

She is however sensitive to light. Even in a room with a northern exposure and with the blinds drawn, the light is still a trial. Therefore, the lights in the room are usually off. However, her door is typically open, so lights from the hospital-like corridors usually bleed through.

There is no such thing as privacy in a nursing home. Generally, she needs help for everything. Help into bed. Help out of bed. Help to the toilet. Help getting off the toilet. Help into her wheelchair. Help getting out of her wheelchair. Help putting on her shoes or slippers. Help brushing her teeth. Now she often needs help eating.

I have been visiting her around noon so I am often there for lunch. When you have a group of people and about half cannot feed themselves, you end up with one aide for every two or three residents in the dining room. This nursing home has a nice dining room. It has tables with linens, cloth napkins and real silverware. Each resident gets a printed menu with the choices offered. There is a cafeteria line on one side of the room but the residents do not wait in it. Instead the aides do, fetching food for the residents. About a third of the residents cannot feed themselves. My mother has reached the stage where she cannot eat everything on her plate by herself. I had to tear apart her chicken so she could eat it. Salad is increasingly challenging for her. She cannot easily get a full fork full of salad, so I find it is easier for me to feed her a forkful at a time.

Despite the table linens, despite a pleasant staff, despite decent but unexceptional food I find the dining room a dispiriting place. The woman sitting next to my mother is a recent stroke victim. She cannot speak but she can sometimes grunt. It is hard for her to tell people what she wants. In addition, the last time I was there it was hard for her to get attention. A plate of food was put in front of her but due to her stroke she could only reach the left side of her plate. She gave me a nod when I asked her if I could cut up her food. She looked grateful and sad at the same time. She must have had plenty she would like to say, but no way to articulate it. I kept up one side of a conversation, and held her wrist a few times to let her know I cared.

Others sit in front of their meals with vacant stares. The meals arrive in stages. It may be ten minutes or more before the next item appears. Only a few talk or even want to talk. With a few exceptions, they do not appear to know each other’s names.

It is summer but the day is neither too hot nor too humid. I take my Mom outside into the garden. It is a nice garden with a flowerbed and an artificial waterfall. Even with her sunglasses on it is too bright for her. We find a shady spot and admire the flowers. For a while, I can take her mind onto other thoughts. She identifies a few types of flowers that I cannot name. I am glad to see that she retains a good memory.

We pass by a room (it is Sabbath) where a Jewish worship service is in progress. Only a few of the worshipers appear to be residents. Family and members of local congregations fill out the service. In another room, we pass by a dozen residents arranged in front of the television. Rhett Butler and Scarlet O’Hara are talking but no one is watching. Two thirds of the residents are asleep in their wheelchairs. The rest are looking blankly at nothing.

Such mild activities as a ten-minute trip outside are still taxing for Mom. After lunch, she wants to rest. With the help of an aide, we get her into bed. As she naps, I sit in a chair and try to read a magazine in the poor light. I cannot concentrate on it. Instead, I concentrate on her breathing. Every breath seems an effort. I wonder, does she need oxygen? About the time I am figuring that out she awakens. Moreover, she is anxious. She is suddenly upset about her bowels not moving. And she is convinced the nurse’s aides hate her because she so often requests to use the bathroom and nothing happens. I talk to the nurse on duty. He assures me that no one minds how often she calls. Nevertheless, later when I talk to my Dad he says that some of the aides have given her a hard time in the past. It is hard to discern what is true and not true. My mother does not always seem to be totally there.

My mother’s PSP condition has progressed to the point where she can no long read. Nor can she watch TV. She can take short naps of thirty minutes or an hour at a time. Otherwise she is awake and in bed. Unless there is company (my father pays twice daily visits), there are only her thoughts for entertainment. Otherwise, her days consists of three meals (usually in the dining room), physical therapy, dressing and undressing, and often-unsuccessful visits to the bathroom – all with assistance.

I do not know what passes for her thoughts during these long and lonely hours. I would hope she would be remembering pleasant parts of a challenging but often rewarding life. However, it seems she is more focused on her present than the past. And the grinding reality of nursing home living is her present. Days become increasingly difficult, frustrating and laborious to get through. If her life were a movie, you would expect the scene to fade to black. Instead, every day life slowly diminishes. This is her reality of dying.

When she dies, I do not think it will happen in a moment. Rather she will gradually slide into oblivion. Some part of me hopes this happens sooner for her rather than later. And I suspect that she agrees.