Occam’s Razor

Trapped in the portal called life

I had a creative writing teacher in college. He was one of these intense, bearded, Birkenstock types who, doubtlessly parroting someone else, said there are only two seismic mysteries in life: sex and death.

At the time, as I was only 18, I was far more focused on the sex part than the death part. For me the sex part was more about actually having sex. Now, at age 50 sex is no longer a mystery. My bearded professor though did not mean sex as in sexual intercourse, but sex as in procreation. Sexual intercourse (at least until recently) is the event which causes human life to start. The flip side of life is of course, death. I think that was my professor’s point. Death was as equally mysterious as creation. Death was also an inescapable fact of being alive. It came with the territory.

My professor was likely 50-something at the time I sat in his class in 1975. Which means if he still alive he is probably eighty something now. More likely, he is pushing up the daisies. Now it just so happened that I turned 50 not too long ago. Given that sex is no longer quite the consuming mystery it once was (although relationships in general remain baffling and mysterious) it should not be too surprising that I spend a lot more time these days thinking about death.

Just because death is an unfathomable mystery does not mean that I, like most aging humans on the planet, isn’t trying to fathom it anyhow. This angst was doubtless at least partially responsible for my delving into metaphysics the way I did when I was in my forties. It may also explain society’s general fascination with TV shows like Ghost Hunters, not to mention TV psychics like John Edward.

When you are 50-something you tend to have had the experience of witnessing the dying process at least once. As frequent readers know, my mother passed away in 2005. Since she was living close to me at the time, I got the dubious privilege of witnessing the American style of death. In my Mom’s case, dying meant progressively worse congestive heart failure, falling a lot, long stays in ICUs, and finally a parking spot at a very pretty but still dispiriting nursing home. Over five months she was there, I had an intimate look watching the life forces slowly drain out of her. I have many memories of visiting her in the nursing home and finding her parked in the TV room in a wheelchair with a dozen other short timers, none of whom had the least bit of interest in watching TV. Most were asleep. It seemed like their major daily activity consisted of remembering to breathe regularly. My beloved mother eventually died directly of a kidney infection and indirectly of Progressive Supranuclear Palsy while attached to a noisy nonstop machine feeding oxygen through her nostrils and an uncomfortable catheter buried deep in her private parts.

So naturally, those of us who witnessed someone dying like this are hoping that when our time comes things will go better, with less angst and fuss and without having to surrender our dignity. I personally am hoping I am one of the fortunate few that die suddenly and peacefully in their sleep, perhaps in the middle of a dream. Failing that, I would prefer to be unexpectedly run over by a bus, providing I died very quickly. Naturally, I do not want to die at all, but if I must die, I do not want to do it before I have lived a long, fully engaged and quintessential American life.

In some ways, every day that I now wake up in good health I take as a blessing. The older I get though the more surreal it feels. I am waiting for some sure sign that I too am mortal. There are many indirect signs such as age spots and poorer vision. I have yet to have that serious, life threatening traumatic event that will cement my mortality in my forebrain. Something like a coronary bypass would do it. My goal, of course, is to get through life minus such an event. However, I am sure there will be other signs to remind me that my life is finite. Perhaps it will be arthritic joints. All I can really do is hope that with a combination of good genetics, diet and exercise that I can enjoy a fully engaged and relatively pain free life as long as possible. I know in time the bell will toll for me too.

For being 50-something is also a time when you notice that others in your age group are not as fortunate. I know a number of people my age, some former classmates and some friends and coworkers who have gone to their great premature reward. As the ranks of your peers begin to thin, however slowly, it is natural to wonder how much longer you have.

The optimist says that the glass is half-full. The pessimist says it is half-empty. My problem is that I know my glass is no longer even half-full, which may be why my inner pessimist is coming out more. The good news is that I cannot see where the bottom of the glass is exactly. Suspense is a natural byproduct of mystery, and some of us are better at dealing with suspense than others are. Those of us who like our lives planned might almost prefer to know precisely when we will die. Then we would at least know how to spend our remaining time wisely. Perhaps we would then spend more of our time enjoying life rather than engaging in all this necessary but tedious exercise. Because what is the point in living if you are so engaged in prolonging life that it becomes harder to enjoy?

The good part about this stage of my life is that life I feel life more acutely. For example, when I go somewhere like Yellowstone I wonder, will I ever come back here again before I am, well, dead? So you try to revel in that moment when you dip your feet into a wild mountain stream. At the same time, your brain (or at least mine) is also participating in the experience as a dispassionate spectator. I find that the less I frame an experience the better it becomes. Unfortunately, it is hard not to apply the mortal frame to life events when your cup of life is less than half-full.

Perhaps successful living at my time of life comes from suspending disbelief about your own mortality. Perhaps it comes from laughing in the face of death, even though death at age 50 is likely many decades away. Perhaps it comes from thinking less and feeling more. For me I find it helps to stay engaged in tasks. For us older Americans, idleness can be deadly.

The only problem with full engagement is that while you are arguably having a great time the years go by so quickly. I have reached that age where I have a devilish time putting time into its proper perspective. Some months back I wrote a review about the movie made of the hit Broadway musical The Producers. I said I first saw it (likely on TV) some 25 years ago. I had to do the math. 2007-25 would be 1982 or so. That sounds right. However, the first movie of The Producers came out in 1968, which was almost forty years ago. I was too young to see it in the theaters yet still I remember 1968 fairly well, since I was 11 at the time. It is almost as if 1968 happened yesterday, not forty years ago. Memory does this to you. At my age, I have to think hard about the sequence and time between past events. Just when did I graduate from college? How long ago was that? What was the world like in 1978? How can it be 2007 when I feel it is more like 1987?

The world is always changing but my brain does not appear to be changing. It is stuck at a certain mental age, say age 30. I got a sense of this in Denver recently. A group of us went to a Whole Foods store for lunch. We noshed on very tasty, overpriced but organically certified sandwiches. I was overwhelmed by the size of the place. The varieties of choices blew my little 1960s-framed mind. It made my head ache just trying to wrap my brain around the vast supply chain created to bring all this choice to me, all of it wholesome and fresh. The supply chain had evolved in the last forty years, but my brain was still back in the 1960s. Back then, you felt lucky to find a couple dozen kinds of cereal at the local grocer. The closest cereal to being a health food was Kellogg’s All Bran. Whole Foods, rather than feeling all-natural, felt extremely surreal. To a twenty something wandering the store though, it was completely ordinary.

I am beginning to suspect that by a certain age that because of the way the world actually is compared with your frame of it that death can be seen as a blessing. I suspect that by the time old age arrives, you feel like you are living on an alien planet. I felt that way with my poor suffering mother. She could never quite grasp the computer. Superficially, it looked a bit like a typewriter, and she knew how to type, but certain things would not work like with a typewriter and mentally she could not get past them. She could not adopt. She was incapable of not hitting the enter key when she reached the end of a line. She could not comprehend the idea of copying and pasting. She was the sort who wanted to fix mistakes by using whiteout on the monitor.

I suspect as geeky as I am that I will think like this at some point. Maybe I am halfway there already. Like all of us, I am trapped in this portal called life whose beginnings are as mysterious as its ending is certain. The mystery of life is everywhere and pervasive, but as I age the apprehension is often there too. Therefore, like most 50-something Americans I keep engaging, generally happy with where I am in life, but somewhat apprehensive nonetheless. I keep wondering when my inner Energizer battery will slow down. While apprehensive I am still appreciative and more than a little wowed that I still have it all together. A hundred years ago I would likely be dead by now.

For me modern life is slowly becoming more and more surreal. Perhaps when it becomes totally surreal, life ends and, like Neo in The Matrix, you wake in a stupor to find that your entire existence was nothing but a complex simulation.

That is when I want to get hit by the bus.

June 1st, 2007 at 04:03pm Posted by Mark | Philosophy | no comments

In Life’s Last Throes

It is Thursday evening and I am on the road in Helena, Montana. I arrive back at my hotel after a long day of work. In my email box was an ominous note from my father about my mother: “I cannot say that (her) death is imminent, but it may be… she didn’t respond to anything I said… couldn’t get Mom to close her lips on the straw, or suck.”

Ominous indeed. My wife had paid her a visit the day before. While my Mom was not in great shape, she could at least make something resembling conversation. Until now, I had no reason to think her death might be coming in the next few days or weeks. I figured there were months ahead at least before she died. This suited me. I thought maybe I was ready to let her go, but I was not. Not yet.

I spent my last night in Montana sleeping badly. I anxiously checked my email in the morning before my predawn flight back home. Nothing new. I had a sinking feeling that I would arrive back in Washington to find my wife greeting me in tears and telling me that my mother had died. When I arrived back at Washington Dulles Airport in the middle of the afternoon, I promptly called her. My Dad sent a brief email that made me feel a little hopeful. The cloud of doom lifted, at least for a moment. Nonetheless, the persistent headache that I often get under persistent stress would not go away. I popped two Tylenol.

By evening, another email arrived with the prognosis I had been dreading. “The nurse practitioner thinks Mom may die within a day or a week, though no one is certain.” Elevated pulse. Elevated respiration. Urinary tract infection may have spread to the blood. Since she had ordered no extraordinary means to prolong her life, my father stopped her IV, ended the antibiotic, but agreed to give her oxygen and a liquid morphine to relieve her misery.

No, dammit, I was still not ready. I was not ready for my mother to die. This was too fast. Just two days ago, she could swallow food! How could she be spiraling so quickly toward death?

With the help of more Tylenol plus an accumulated loss of sleep from my trip, I managed to sleep soundly until 5 a.m. or so. That is when the thought resurfaced: my mother is in the last throes of life. I tried to get back to sleep but never fully succeeded. It was morning and the headache was back. It was time to pop some more Tylenol.

My wife had to go to work for a while. We planned to visit my mother afterwards while I took care of things that had to be done, even when loved ones are dying. This included chores like buying groceries. It was after 3 p.m. before we arrived at her nursing home, some 30 miles away. We both steeled ourselves. If my mother had days to live, this might very well be the last time I would see her alive. For now, the thought was too large to get my mind around, but I felt its awful weight anyhow entering the nursing home. My feet felt like lead, but we finally made it to my mother’s room.

My father was there. For some reason, although he has been married to my mother for 55 years, the cloud of doom that hung over my wife and I was not affecting my father. He seemed almost happy. In the hallway out of earshot, he explained. “Your mother has been dying for three years. She will soon be out of her misery and with Our Lord.” For my father, his Catholic faith was an instrumental coping mechanism in what was for me what seems a very bleak time. Still I could not fathom his perspective. Your life partner is almost dead. How can you be so chipper?

My Mom was face up on her bed. Mostly she was asleep, but occasionally her eyes would open and she would observe her world from her narcotic haze. She could neither move her eyes nor turn her head. Her fingers were deadweight in my hands. Her breathing was labored, punctuated by occasional coughs. Mostly there was a vacant look in her eyes, but often they seemed to be able to focus on me.

What can you possibly say to someone who cannot talk back and is in the very last stages of life? Her mouth was dry. We used a sponge to give her moisture. I told her I loved her of course. I told her the whole family sent love. We let her know that other siblings were on the way to see her too. We think she understood, but she could not say anything. She could not even utter a grunt.

An oxygen tube went into her nose. It was tethered to a noisy machine six feet away. There was little to really say or do. All I could do is hold her hand. My wife took the other hand. My wife tried to give her drops of water. She asked my Mom to open her mouth. She could not open her mouth voluntarily.

A nurse practitioner came by to assess her situation. She had not seen my Mom in a few days either. She too was shocked by her rapid deterioration. There was little she could do to add to her comfort. A lip balm went on her chapped lips. She tried to clean out her dry mouth with a rubber sponge soaked in water on a stick.

And so my mother drifted in and out of sleep, sometimes seeming to watch us with half an eye open, her breathing always labored, her pulse always high. We pulled back her blankets because she seemed feverish. We took turns talking to her.

What to do so close to the end? The hardest part for me was simply not dissolving into a veil of tears. My wife seemed to find strength that I did not have. She spoke to my mother of simple and pragmatic things. Although my wife has known my mother less than half the time I have known her, both are very bonded to each other. In some ways, my mother’s passing may be more traumatic to my wife than to me. Both grew up near the same area of Michigan. Both shared similar Midwestern values. Heck, they even look quite a bit alike. My wife has been an angel of mercy to my mother these last several months, visiting at least once a week by herself while I worked. If there were a daughter in law of the year award, she would win it without trouble.

But what to say? Eventually I found my courage to say what I felt had to be said. While she could not speak, I knew she knew that she was rapidly dying. “Mom, I love you,” I told her. “I love you more than I can tell you. I cannot begin to tell you just how much you mean to me. I am so sorry to see you suffer like this. I know the last months in the nursing home have been very hard for you. But for me they have been a precious time. Because I have had the time to be with you. Because I have had the opportunity to take care of you for a while, like you cared for me. Because I have enjoyed our time together so much, and feel it is a blessing to have had this time with you at this stage in your life.” She was looking intently. I could tell she understood me, but had no means to say something in return. Nevertheless, I articulated it. “And I know how much you love me too, Mom.”

She drifted in and out of sleep. As a deeper sleep caught up with her, I gently slipped my hand out of hers. I kissed her on the forehead. “Be at peace,” I said, tears welling up. My wife did the same thing. We hugged each other on the way out. It was not until we were in the parking lot that I started bawling like a baby.

I have a feeling I will be crying a lot more before this is over. For the moment, she clings to life. However, her hours are now numbered.

At this point, I just want her out of her suffering. I hope whatever Supreme Being that may or may not be out there is merciful and swift. She has suffered enough. Please let whatever merciful uberforce is out there bring her back to the source so that she is free again. I hope, pray even, that she does indeed have a soul, and this life is but one lesson in an eternal life. I hope she learned important lessons in this challenging life. Perhaps she will be reincarnated. Perhaps she will begin a new and more hopeful life after a period of reflection in another dimension.

Although I still feel some horror in witnessing the process of dying firsthand, I am also not quite so afraid of it. For in the end death is simply an ultimate peace, and she has earned her rest many times. Her misery will soon be over. In addition, those of us who mourn her passing can begin to grapple with dealing with the rest of our lives without her. Of course, she will always live on in our hearts. In that sense, she is already immortal.

Rest in peace, my beloved mother.

November 5th, 2005 at 09:49pm Posted by Mark | Life 2005 | 3 comments

Seize the day

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.

October 17th, 2005 at 09:04pm Posted by Mark | Philosophy | no comments

In the final lap of life, anxious, but embraced in love

How much longer does she have? That is our mostly unspoken family question. Occasionally one of my siblings or I will venture an opinion. One brother suggested that my mother has no more than three months to live. My own opinion: she could easily live a year or more. Of course, it is a bit ghoulish to talk about your own mother’s date with death. However, between us there is not much else to say about my Mom, who continues her slow but progressive decline.

We can remember her as she was, of course. Yet that seems an insult to someone who is still living. Five summers ago, she and my father celebrated their fiftieth wedding anniversary. They still lived the retired life in Michigan. We were all there: two parents, all eight of their children, and most of their extended in-laws and grandchildren. They picked the Long Lake Resort outside of Luddington, Michigan for our reunion. I have memories of my mother rushing around their cabin’s kitchen doing what she does best: preparing yet another favorite family meal, such as Pasta in a Pot or Beef Stroganoff. Even then, she was a bit awkward keeping up her traditional pace. She had many hands eager to help her. In kindness, we swapped evenings making the meals. For the day of their anniversary, we all drove into Luddington. We had a fine celebration in a first class restaurant overlooking Lake Michigan. I could slip the DVD into my machine, watch the videos, and see my 80-year-old mother in her fine blue dress, still looking twenty years younger than her age.

“Do you remember that, Mom?” I asked her yesterday. Yes, she remembers. We sat in the shade in the modest eighty-degree heat. We were in the garden at the Renaissance Gardens nursing home where she now lives. Thankfully when well rested she can still be quite lucid. We admired the flowers. We reveled in the quiet of the garden: quite a contrast from the 24/7 hustle and bustle inside the nursing home. The breeze blew like a gentle whisper. An occasional bird would venture into the garden and grab some seed from the birdfeeder.

I arrived yesterday about half an hour before lunch to find her in the activity room. She was in her wheelchair propped in front of the television. Like everyone else, she was asleep. She was parked there, as many of the residents are that time of day, because lunch was approaching. The activity room made a convenient staging area. I gently touched her hand and she awoke. “Hello, Mark,” she said. She knew I was going to be coming. My wife, who visited her the day before, gave her the news.

The news on the television tells any residents who are awake things they should not care about anymore. News has become obsolete because it no longer has any bearing on their lives. What matters is the increasingly narrow scope of things they can control. Visits and the personal attention they bring mean the world to these residents, as they do to my mother. Unlike a woman with Alzheimer’s who wanders the halls looking for her husband, my Mom’s mind is still reasonably sharp. Nevertheless, she sometimes looses track of space and time. She sometimes does not understand why she cannot go back to the apartment. On other days, she thinks she is in upstate New York, where she lived for many years.

Yesterday, she was anxious. She was used to seeing my father for lunch. She wondered why he was not here. She was feeling very scared and abandoned. I wheeled her back to her room. I pulled my chair directly in front of her wheelchair. This was necessary because with her condition she can only see directly in front of her. I tried to explain things but my logic did not penetrate very far. The truth, which I do not say aloud, was that my father was not there because he was on respite. I was there both to see her and to give him some respite. However, she did not understand it. Are they not married? Should not he be there anytime she wants him? I held her hands. Sometimes I cradled her head in my hands. Yes, Dad will see you later today. “I don’t believe it,” she said. She felt abandoned. Yes, she knows we all love her she said. Nevertheless, she still felt anxious and scared.

It was time for another lunch in the fifth floor dining room. Another lunch that was nice but so routine. The same woman with the stroke sat to her left. Another younger woman with Parkinson’s disease ate from a large plate of fruits. The man next to her largely ignored everyone and with relish ate every morsel on his plate. I spoon fed her soup (which she did not like) then helped her eat a Spanish omelet, which she did like. She enjoyed the decaffeinated coffee and the strawberry cheesecake ice cream. However, mostly she was tired. The moment she was done with lunch I took her back to her room, helped her brush her teeth and with the help of an aide put her back into bed for a nap.

My Dad and I planned a surprise: get her to the local McDonalds in the afternoon for a burger. However, she did not get to bed until 1:15 p.m. I called my Dad and explained how Mom was very tired and confused. He called off the trip. His experience was that when she is this way she becomes too difficult to manage for a car trip. She will need more rest than she will get, he thought.

I sat in the half-dark room and watched my mother’s labored sleep. She must have the head of the bed elevated, but even so, it was difficult for her to breathe. Eventually she started snoring. She cannot sleep on her side anymore. She has to sleep face up. Because I had neglected to bring something to read, I was reduced to reading Reader’s Digest. Since I half expected to stick around for a car ride with her, I waited for her to wake up. I do not want her to wake up with me not there and with no explanation. She would feel abandoned again.

After an hour’s rest, she awoke. Much to my surprise, she was well rested. An aide helped her into her wheelchair. We ended up in the garden, under the shade, looking at the birds and flowers but mostly talking. Mom, do you remember when? Yes she did. We talked about places we lived, people we knew, things we did and things going on in our lives.

I live for moments like this with my mother. I wonder how many of them remain for us. For an hour, everything seemed about as right as it can be under the circumstances. The weather was warm but neither too hot nor too humid. Outside it was quiet with only the bubbling garden fountain for noise. It was a hypnotic noise, and it was hypnotic to watch the cement statue of a little boy endlessly spill water from its mouth. We sat close. I held her hand. I often placed the other hand over her shoulder. Our heads touched.

She saw a bird watching us from just over the fence. We were delighted to see it move in toward the bird feeder. Wasn’t it Jesus who suggested that we could be happier by being like the birds and give no thought to tomorrow? It is not easy for us humans to live in the moment. Nevertheless, for a while at least my mother and I lived lucidly in the moment, just mother and son, smiles and reminisces. I was able give her all the loving attention I wanted as an infant but she could not give me at the time. (She had three of us in diapers.) For now, at least when she is lucid, it was like there was all the time in the world.

She is greatly diminished but she is still in the land of the living. Moments like yesterday are fewer and more fleeting, but they are moments we both live for.

Friday my wife visited and started crying when my mother told her that she loved her. How many daughters in laws hear that from their mother in law? For me, my moments are more sublime. When she is so obviously not herself, I do my best to give her personal care in the time that I have. I revel in those brief snippets of time when mother and son commune fully as one once again.

I hope that this was not our last time. There is no way to know for sure. Nevertheless, if it was our last time, then I will have no regrets. If I felt angst as an infant for getting insufficient nurturing from my mother, my time with her nearly fifty years later seems to have closed that chapter of my life at last. And if part we must, I can know that we parted embraced in love and its warmth.

August 7th, 2005 at 04:31pm Posted by Mark | Life 2005 | no comments

In the Nursing Home

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.

July 13th, 2005 at 09:00pm Posted by Mark | Life 2005 | no comments

The Vortex of Dying

Five weeks ago my 85-year-old mother could still get around. It was true that she often needed assistance. About half the time she could raise herself into her walker. Yes, she was a bit awkward shuffling forward or turning in her walker. But once started she could generally push herself forward. When she sat she was more likely to plop into her chair than brace her fall. But arguably she was mobile. She had some vestige of independence.

Five weeks ago she could also feed herself without much problem. Although her hands shook from time to time a drug made her tremors manageable.

Five weeks ago my mother lived in her own apartment. My father tended to her and was her constant, if sometime reluctant companion, day and night, catering to her many and seemingly endless needs. She slept in her own bed. Every evening she could count on a quality dinner at the dining room in their retirement community. She would enjoy that daily cup of coffee (now decaffeinated) served to her by waiters in uniforms. The coffee was poured into real china cups. She could count on enjoying a tasty entree fresh from the kitchens of the Riderwood dining facility. She especially liked the shrimp entrees.

Five weeks later finds my mother in a nursing home. The place is called Renaissance Gardens. It is a nursing home adjacent to the retirement community. She can no longer get herself into her walker. She cannot even lie down without assistance. Almost every act requires assistance. Her condition, PSP, means it is difficult for her to move her eyes. So she can only focus on what is straight ahead of her. She can still tilt and rotate her head slowly, but doing do brings fatigue after a while. So most of the time she listens and stares blankly at whatever happens to be in front of her.

Her days consist of meals, bed rest, occasional visits from occupational therapists and physicians, a visit or two from my father or a family member, and more bed rest. Her nights are long. She claims she doesn’t sleep, at least not very much. Days and nights blend together, as they have for many years now. She can read but only with concentration, and not for long. Her hands are not agile enough to hold a book. She has no interest in television and cannot concentrate on it.

And her condition is unlikely to improve. She may visit their apartment briefly from time to time. But it is unlikely that she will ever spend another night in her own bed. Instead she will be managed. Life is and will continue to be endlessly frustrating to her. Nothing can be done on her schedule anymore. She must wait. Wait for meals. Wait for someone to take her tray. Wait to be turned. Wait to be lifted into her wheelchair. Wait to be helped to and from the bathroom. More often than not she is changed like a baby. Underpants are useless. For the rest of her life she wears Depends.

She still hears very well, as long as her hearing aid batteries are fresh. She knows where she is. Even if she were mobile she cannot escape her ward. You see you have to know the number to type on the pad by the exit door and she doesn’t know it. Nor could her wobbly fingers press them accurately. She can recall most events clearly. Her hair may be gray but she has the skin of a woman twenty years younger. Her face may sag but there are few lines on her face.

Yet she keeps receding. She is clearly mentally ill. The extent of her illness is difficult for me to gauge, but it can be hard for those of us who love her to endure it. She is told one thing and remembers another. A 2 p.m. appointment becomes 1 p.m. in her mind. A fifteen-minute wait magnifies in her mind to an hour wait. As a result she is often bitter, resentful, and generally a complete killjoy. With luck, perseverance and enough conversation she can lapse into something like the mother I used to know. But increasingly the mother I knew throughout my life is gone. I ache for the moments when she acts familiar. But three quarters of the time or more she is not the mother I knew. The face is there but her personality has been magnified. The good parts have receded. Her unpleasant aspects have been grotesquely magnified. She acts more like a child than an adult.

To those of us who know and love her, she is in some sense already dead. Dead, yet alive, yet also inexorably sliding down a slippery slope. She is moving down a vortex from which life cannot escape. Hope is gone. She recognizes the reality of her condition but cannot fully grasp its dimensions. So she is understandably angry and depressed by her reality. She talks about her own death much more frequently now. She both resents her husband and admires him. She resents that he won’t spend every waking moment by her side engaged in conversation. She resents that he won’t lift her or put her down, even though he should not at 78. She resents that he cannot make things right for her, even though things are about as right as they can get under the circumstances. But she still admires the husband and father that he was, and wonders why on the dawn of their 55th wedding anniversary the husband she thought she knew and trusted is now more like Mr. Hyde than Dr. Jekyll.

For my father is being pulled into her vortex too but so far is clinging firmly to its edge. He is doing the best he can for his wife, wishing he could do more but finding it impossible. He has limits that he must respect. He loves his wife but mourns these changes in her too. He feels confused, hurt and resentful when she lashes out at him in anger. He knows it is her mental illness that makes her do these things. But it makes most interactions with her painful. It makes him want to see her less, not more. Yet he plods forward in his marital role as best he can. Her bills get paid. He sorts through her many medical issues. My Dad is fraying a bit at the seams too. He must pull away. For the first time in his life he is seeing a therapist. We wonder how he survived so long without one.

And now he comes home to an empty and deathly quiet apartment. He makes his own meals, but not for two. But he now he has freedoms he didn’t have before, like being able to get out for regular walks. But always there is the psychic tug of his wife and her wants.

No one is at fault. Everyone is doing the best they can. And no one is happy about the situation. We wonder how long my mother will be living like this. How long before death finally overtakes her? Days? Months? Weeks? Years? Most patients with her condition live one to two years after they are committed to the nursing home. There is no way to know for sure. But considering the extent of her deterioration in just the last five weeks I suspect it will be sooner rather than later.

We recognize that we are not super humans either. My siblings and I still have our own families and commitments. We love her as much as we always have. But we cannot be there all the time. She has to cope with this unhappy phase of her life as best she can. Yet she does not seem to be in pain most of the time. Her basic needs are seen to. Her other needs are difficult if not impossible to meet.

So we grieve too. Seeing a parent decline is like watching a fatal car wreck in slow motion and in exquisite detail, except we cannot turn away from it. We feel the emotional impact of her decline. We wish we could wave a magic wand and make things better. Like my father we cannot really turn off our feelings.

In the process we wonder if we see in our mother what we too will go through in time. Despite her high quality of care it still looks like a nightmare. I find myself hoping for a sudden and quick death when my time comes. Is what my mother going through really life? Is this the “culture of life” that we claim to so highly value? Or is it just existence? Whatever it is, it seems like a horror.

So we too stand on the edge of her vortex looking down too, confident that for now we will not be sucked into it but knowing our time will come too. We look because a lifelong commitment of love between parent and child means we cannot turn away now. For myself, I move through the rest of my life seemingly normal on the surface but a changed, humbled, frustrated and sometimes scared person. I hope when my time comes I will be more graceful in my decline. I want a death like King Theoden’s on Pelennor Fields. But I suspect mine will resemble my mother’s. I’d like not to think about it but I cannot. The pain is too close, too tangible and too persistent.

My mother will not survive this but we will. Death is a natural consequence of life. The feelings we go through when we are dying are natural too. I know I won’t enjoy this time of her life. But I will survive it. Perhaps when these horrid years are behind me I will live fully again, humbled but grateful for each day of good health. I hope so.

I wish I lived in a culture that had a better attitude toward dying. I wish my mother were a devout Buddhist instead of a Catholic wondering if she’ll die with a mortal sin on her soul. I wish she could embrace the changing experience called dying. But for the moment she is not in that space. Perhaps before the end she will embrace it. And perhaps someday I will too.

June 22nd, 2005 at 07:57pm Posted by Mark | Life 2005 | one comment

View from the last bus ride

This final bus ride toward oblivion is turning out a bit different than I anticipated.

It’s a mixture of the ordinary, the extraordinary and the weird.

My aging parents (Mother is 85, Father is 78) have downsized their life from single-family house to an apartment in a retirement community. Until shortly before they moved my mother was the one who used to do all the cooking. Now thanks to a case of Progressive Supranuclear Palsy she cannot even fry an egg. So it is my father, who has been catered to all his life, that now makes them breakfast and lunch. Their retirement community, Riderwood, provides a gratis dinner in their dining room. Arguably Riderwood provides better dinners than they would have if my mother could still cook. My mother was no slouch in the cooking department. But Riderwood has professional chefs. As I discovered last night they even come out among the patrons and ask about the quality of the food. Their meals are more nutritious, often tastier and lower in fat, salt and cholesterol than anything my mother would have made a few years ago. I am pretty amazed that my mother, who is very much a picky eater, is so enthusiastic about their dinners. At this stage of life I had visions of them getting Meals on Wheels, not dining extraordinarily well every night in a serving room with menus, waiters and linens.

Gone are my mother’s fixations with gardens, kitchens, crossword puzzles and game shows. Gone is her ability to use a keyboard or even to comprehend a paragraph. One habit still remains: Jeopardy. The highlight of her day is the complementary evening dinner. Otherwise her day is a lot like her nights: spending a lot of time in bed not sleeping, ingesting large quantities of pills and vitamins, frequently shuffling to and from the bathroom in her walker and getting to and from doctors appointments. She can use a telephone but only with the speaker feature turned on. It is difficult to sign her name or dial a telephone number. Yet she fights her disabilities with perhaps a naïve optimism. Certainly going to the fitness center every day helps her extend her life but if her diagnosis is correct her condition is progressive and irreversible. She both fights for life and wishes it were over.

She is also increasingly confused and worried. She is simply not thinking like she used to. She is most like herself in the morning when she is reasonably rested. As the day progresses her behavior gets weirder and occasionally seems bizarre. Yesterday her hearing aids failed but she never told us, just said she wasn’t hearing very well. We take her on occasional rides to the real world. But trips in a car can be logistically challenging. It is much like traveling with a baby. Two hours is her maximum limit before she needs to return home. A trip to Michaels yesterday was likely her big adventure of the week. On Sundays she and my Dad will often get into the car and get coffee from McDonalds. She’d love to do things like travel again. A trip to an audiologist in Baltimore is as adventurous as she is likely to get in her travels from now on.

As for my father, being six years younger than his wife he still seems relatively vigorous. But appearances are deceiving. This week their fragile deck of cards collapsed. My Dad woke up on Tuesday to discover he had an incarcerated inguinal hernia. That meant quick surgery to fix it, which happened the following day. It was outpatient surgery and he is in good spirits, but he is not allowed to support any weight with his abdomen. It was my wife Terri who actually took him to and from the hospital. My sister Mary stayed and cared for my mother in their apartment. Since then in order to care for my mother it has meant someone has had to be there day and night. My sister Mary is performing most of the heroics by basically staying there every night and during the days during the weekend. My unemployed wife helps out during the weekdays when she can. I spent some hours over there yesterday too, since I had the day off.

It’s a weird world. Caring for my father is not the issue. It’s caring for my mother. She is unsteady enough so that every trip in her walker must be carefully monitored. Most of the time she cannot even get into her walker unassisted. So even trips to the bathroom are fraught with potential peril. But being in decline has some unexpected advantages. For example she is now enjoying being fussed over. For all her whining about what she cannot do, she seems to like all the personal attention. But she cannot simply lay down in bed. The blankets and pillow have to arranged just so. It requires a level of attention and care that I found exhausting for just the six hours I provided it yesterday. That my father can do this day in and day out with few respites strikes me as an act deserving of sainthood.

My mother may be pretty much an invalid, but that doesn’t mean her personality is that different. She resents being taken care of by my father but at the same time expects prompt attention. She can get very upset when it doesn’t happen on her short timeframe. In fact she wants everything ordered so she cannot get upset. She wants zero uncertainty in her chaotic life. Yesterday my father took a short walk while she was lying down. He didn’t tell her but he did let me know. She arose when he was gone and quickly panicked. I tried to explain that he was okay with walking, he just wasn’t allowed to pick up anything. It didn’t penetrate. “I cannot sleep until he gets safely back! It’s so unlike him!” she said. Right Mom. Well, even if he were safely back you probably wouldn’t sleep anyhow. Poor dear!

Their precarious situation is largely left unspoken. Until my father can resume his caretaker duties we are jury-rigging an ad-hoc process to keep their system going. My sister Mary performs heroic 24/7 care while neglecting her own work and family. My wife and I get over there when our schedule allows. My father, generally the type to have everything planned to perfection, can’t seem to investigate nursing homes or start getting in-home care.

So it is the best of times under the circumstances yet with my mother’s progressive condition it often feels like the worst of times too. Their retirement community provides the benefits of a daily meal, neighbors, stimulation and many conveniences. And yet my mother’s body and mind continue to slip, sometimes slowly, sometimes in large steps, toward total dysfunction. Yet it seems like this wheel will never stop.

April 16th, 2005 at 03:25pm Posted by Mark | Life 2005 | one comment

Schiavo: It’s not the Right to Life, it’s the Right to Die

The Right to Lifers in the Schiavo case have it all wrong. It’s not about the right to life. It’s about the right to die.

As much as I love my wife, daughter, parents, siblings and friends they have no say in whether I live or die. They have no say because they are not me. I have autonomy. I decide what I do, what I eat and who my friends will be. I don’t need permission from anyone. Admittedly it would be pretty heartless of me to take my own life since it would likely leave my family devastated. But the bottom line is whether I live or die is my choice. It’s not something that needs to be enshrined in law. It just is a fact of life. Unless, like Terri Schiavo, I cannot speak for myself and am in a persistive vegetative state (PVS) I can choose the timing of my exit. If I have some incurable disease I can refuse treatment. If I am in a hospital or nursing home I can order that my feeding tubes be removed or my oxygen be cut off. And if I want to I can put stick a gun to my head and blow my brains out just like Hunter S. Thompson.

When we cannot speak for myself we have rules. A living will, recognized by most states, speaks for my wishes when I cannot. Terri Schiavo did not have one. This is not surprising. She was, after all, only 26 when lack of oxygen (allegedly a result of her mental illness: bulimia) caused her massive brain damage. She was however legally married to Michael Schiavo. It may be inconvenient to the Schindler family but when someone reaches eighteen they can legally make their own decisions. They decide if they want to get married. And if they decide to get married then their spouse, by default, has the legal right to speak for him or her. And Michael Schiavo asserts that Terri told him several times that she would not choose to linger in this world if she were in the state she was in.

And yet for an obscene fifteen years this soap opera has been played out, most of it in the courts. Twenty-three court rulings, all against the Schindler family, have said that Michael Schiavo has the right to act in behalf of Terri. But for some people the law and due process are insufficient. It’s gotten into the theater of the absurd. Woodside Hospital in Pinellas Park, Florida is virtually an armed camp. But Terri is just one of seventy patients there. Now we learn that the three to four minute security delay meant that Jennifer Johnson’s grandfather passed away before she could say a final goodbye to him.

No wonder our email in-boxes are filling up with references to how to create living wills. (I’ve had four emails so far myself.) The Schiavo case should encourage many of us to get off the dime and have our wishes signed, sealed and notarized. Still, while a living will ensures no ambiguity it shouldn’t be necessary. My wife knows how I feel about hanging on when there is no hope of recovery: I want to be let go. Actually, I would not prefer to die the way Terri Schiavo is dying. A week or two of starvation and dehydration is inhumane. Rather I’d like to have a nurse or physician give me a quick shot of something to put me out of my misery, just like vets do routinely to pets of all kinds. Unfortunately our so-called “culture of life” makes this impossible in our country. Even in places like Oregon where physician assisted suicide is legal, Uncle Sam is in court to ensure it doesn’t happen. So in Oregon like in the rest of the country you had best put your thoughts into a living will while you have your wits about you and resign yourself to a slow and potentially painful death. Fortunately, while I cannot know for sure, I suspect I won’t feel a thing. Any “me” in that body will have long departed this earth. I don’t know how to break it to the Schinders, but their Terri has been dead for fifteen years.

My wish for a quick end of my life in these circumstances is not just an expression of my deeply held feelings about my life, but also a kindness to those who love me. I want them to accept my death and move on. That’s the real issue with the Schindlers. The Terri they knew is gone and is never coming back. They need to let her go. They need to move on and to heal. Instead we have a great disturbance in the natural forces as artificial means keep her body alive. But her spirit is dead and long gone.

Of course a lot of the recent posturing has nothing to do with Terri and a lot to do with politics. The Republicans saw an opportunity to use the body of Terri Schiavo for their own purposes: to pump up their political base. What President Bush and the Congress did was horrifying and shameful. If you ask me it was the legislative equivalent of rape. Instead of showing respect for Terri they showed contempt. Rather than showing a love for life they demonstrated contempt for the law and for individual autonomy. No wonder the American public is overwhelmingly against what they did. No wonder Bush’s ratings are at new lows. The last thing any of us want to do is to leave our most private medical decisions to the government.

As for the Right to Life crowd, it’s now clear what is really going on. These people are not right to life. Rather, they are in denial of death. Death is a crossing we all must face someday but they deny it. In reality they have a phobia about death, and their anxiety about their own mortality is leeching out into the public sphere.

So the issue is really about law and individual autonomy. Terri Schiavo’s case will teach us we must be proactive to make sure our end of life wishes are respected. Her death will also teach us that we need to grapple with our own feelings on life and death. That is the only good I see coming out of her sad situation. Like Jesus, she was martyred for our sins. Unlike Jesus though I doubt she chose to become an example. Nonetheless she will teach us an important lesson. Let us hope that we absorb it.

Safe passage, Terri.

March 27th, 2005 at 10:38am Posted by Mark | Philosophy | no comments

The End of Life

My mother turned 85 on Thursday. Those of us who live in the area got around to actually celebrating it with my mother yesterday (Saturday). The only one who didn’t seem happy about it was my mother. “I shouldn’t be alive,” she kept telling us. I pointed out that she had beaten the odds. The average life expectancy for a woman in the United States is 80. She’s had a five-year bonus. But from her perspective there is not much to celebrate about having five more years. The last five years have been hard on her physically and mentally. And we are all realistic that it’s not going to get much better. She is alive thanks to a dedicated husband, family and generous social benefits. But from her perspective she is existing, not living.

She had periods when she improved remarkably. Her last stay in the nursing home was not a happy one. She had plenty of incentive after she was freed to work on her physical therapy. For a while she was able to get around in her walker unescorted. For a while she was able to ascend into her walker and drop back down to a chair safely. Those days are gone again. If they return they will not return for long. She requires help to do pretty much anything. She can still do a few things for herself. She can brush her hair and teeth and once in her walker she can usually use the bathroom by herself. Since she had part of her large intestine removed she is not always aware when she needs to use the bathroom. As a result she wears Depends all the time.

She is fortunate not to be in a nursing home. Every month though it seems like it takes more and more heroics to keep her out of a nursing home. My father fills in as her 24×7 nursemaid. My father, who is six years younger than her, is in reasonably good health. But it is a wearisome time for him to be constantly on call. His sleep is usually broken several times during the night by requests from my mother to shuffle off to the bathroom. That my Dad can still manage this is nothing short of heroic.

But it is not easy. Naturally Dad goes squirrelly after a while. It’s the nature of us guys not to complain about life’s burdens. And arguably my mother has been doing most of the care giving in their marriage all these years. So there is some karmic justice in my Dad’s heroic efforts now. He cleans up lots of accidents. He helps her with her showers. He drives her to many doctor’s appointments. He shuffles her off to dinner in the dining hall. He keeps their apartment clean. He doles out her medicines. Occasionally though the cracks begin to show. He needs a respite. But there are not a whole lot of volunteers to give him time off. Unless one of my siblings fly in there are three of us. There is my sister Mary in Columbia, who had been doing most of the care taking. Then there is me. And there is my wife, who is unemployed at the moment. I have been all but ruled out as anything other than a momentary caretaker. I am, after all, a male. She had a hard enough time letting her daughters help her out with intimate acts. Although I could certainly do the job competently enough there is too much of an embarrassment factor for her to let me help. So sister Mary occasionally burns some days of her leave and sends my father out to visit his sister, son or daughter.

My wife and I live thirty miles away. But many days it might as well be a hundred. Because we live in the Washington metropolitan area there is this unfortunate fact of life called traffic. To visit them we must cross the Potomac. There is really only one bridge across and it is often a bottleneck. For much of the week the Capital Beltway is in gridlock. A thirty-five minute trip can easily turn into an hour or two each way. Unless visits can be arranged to fit our schedules it is difficult to drop in as needed.

So what is left is a woman near the end of her life simply tired by life. Much of what she says about dying is her depression talking. It would be difficult for anyone not to be depressed in her circumstances. She wants to die and not be a burden on my father. She doesn’t want to be a burden on us either. When family visits she can turn her thoughts away from herself and her problems for a while. But when she talks about her feelings most of the time it is just a cry of anguish from being so immobile, layered on with guilt feelings for being a burden on all of us.

It’s like she thinks we are all hoping she will die. Nothing could be further from the truth, of course. What we want is for her to take some pleasure in life, despite her condition. What we want is for her to enjoy the moments she has left, not to obsess about the end of her life. But at 85 the end of life is no longer an abstraction. It is very real. The freight train is about to run her over. She feels its rumbling. She sees its headlight.

Arguably we her offspring are caught up in a cycle ourselves. We cannot help but love the woman who gave us birth and nurtured us through life. But we too feel some guilt that no matter how much we try to make things good for her that we cannot change her slowly crumbling body. We may perhaps delude ourselves. Does the time we spend keeping her spirits up say more about our impending separation anxiety from our mother than it does say about how we feel about our mother? Are we all playing a complex game of “let’s pretend” that my Mother sees through? Perhaps it would be simpler and she would be more relieved if instead of saying hopeful things we acknowledged the truth. She is a hurting and guilt ridden woman. Maybe it would mean more to say that we understand how sad and hurting she is feeling. Maybe it would be better to say we understand that coming to grips with the end of life is very hard. Maybe it would be better to admit that we too are scared, for we get a preview of our own old age watching her go through it. And it is not pretty.

Perhaps some honesty on her situation would improve things. But we are all playing our assigned roles. And to some extent that includes my mother. How much of the “I don’t want to be alive” is her or some guilt-ridden persona whose script she has read from much of her life is hard to tell. But we too are perhaps acting our scripts: caring son or daughter. I don’t particularly see my mother’s decline as a burden on me. But at the same time there should be no shame in admitting that my life was a lot less complex when they lived 600 miles away instead of 30.

If we live long enough we will doubtless go through what my mother is going through now. We will all have similar feelings of depression, anguish, regret and just being scared about the whole dying process. Even if we are blessed with excellent health until death happens, dying is a fact of life none of us can escape. How do we want to die? I know I don’t want to spend that much time thinking about it right now. But with my mother in her declining years I still have to think about it at midlife anyhow. I do hope when my turn comes that I can find a way to accept that time of life gracefully. I hope I can take pleasure in the day in spite of infirmities. I don’t know if a happy death is possible, but it is perhaps a final goal for which to strive.

March 13th, 2005 at 10:55am Posted by Mark | Life 2005 | one comment

Grieving for the living

In the movie Master and Commander: The Far Side of the World there is a poignant scene. It occurs when the HMS Surprise is rounding Cape Horn, which is known for its turbulent seas. A mast breaks and falls into the sea. A sailor up in the rigging falls down into the ocean with it. He desperately tries to swim back to the ship. The mast, which is still tethered to the ship, is acting like an anchor that threatens to pull the Surprise down into the ocean. It must be cut in order to keep the Surprise from sinking. But in the process of cutting it the sailor cast overboard has to lose his life. The poignant string music of Ralph Vaughan Williams’s Fantasia on a Theme by Thomas Tallis perfectly captures the mixed feelings of the moment. We see shots of the drowning sailor (popular with the crew), sailors crying in the hull and the grim Capt. Jack Aubrey cutting away the last bits of rigging holding the mast to the boat.

I know how that crew felt. I am going through similar feelings now with my mother’s decline. It is increasingly clear that she is in or is reaching her last stages of life. She may surprise us and live for years but her spirit is gone. She is at a point where I think she welcomes death as an escape from her earthly turmoil. She is 84 and a victim of congestive heart failure. She recently returned from a hospital stay not appreciably better than when she entered. My Mom is severely depressed. She spends most of her waking hours in her room watching TV. She tries to sleep but for the most part doesn’t succeed. She is at the point where she can’t do much of anything without assistance. She used to be able to navigate to the bathroom by herself. My Dad is there to assist her for pretty much every activity in her day.

Since her fall last autumn we have been trying to get them out of Michigan. They have a perfectly nice single-family house. But it has stairs. It is not very accessible. My mother’s sister (who is weary of helping out during her emergencies) lives in town. Her closest offspring is 400 miles away. Fortunately my Dad, age 77, is doing quite well and is able to keep up with her. But we know her condition is taking a large physical and psychological toll on him. So they finally sold their house and will be moving on Monday to the Washington area. Their new residence will be a retirement community called Riderwood near Silver Spring, Maryland.

We’ve been planning their move for months. Final preparations right down to the wallpaper for their new apartment kitchen have been haggled over and decided. We even have a wheelchair rental planned for my Mom. If we can get them to Riderwood life should be simpler for them. But it will still not be easy.

If my mother’s recent hospitalization weren’t enough the move alone may kill her. She grew up in a clapboard house in Michigan less than thirty miles from where she is living. The things she cares about most are in Michigan, including what remains of her family. Michigan is comfortable and familiar. It feels like home. Always a deeply shy woman about the only people my mother can related to these days are her increasingly few siblings and her children. Taking her away from her siblings may crush what remains of her spirit. She knows their lives need to be downsized and she knows the burdens on my Dad are hard for him to bear. But she leaves Michigan in a couple days with the crushing knowledge that if she returns it will be as ashes in an urn to be placed next to the graves of her parents.

At Riderwood both my sister and I will be in commuting range. We are hopeful that her new neighbors (including a devout Catholic across the hall) will revive her spirits. Perhaps she will find even at this late stage in life some joy and something to live for. But from reports I am getting she wishes she could just die and be done with life’s burdens.

My aunt thinks she has less than a year to live. She is probably right.

We, her sons and daughters, are bending over backwards to pick up her spirits and to facilitate this move in the best way possible. My parents will be spending Monday with us. My sister Teri will fly with them to help my mother navigate airplanes and restrooms. (A car trip would be too taxing.) Then we have to move them into their apartment in Riderwood, and try to get her established in their new home. But my gut feeling is that my mother will remain miserable. Getting out of her bed and using her walker to get to the bathroom may prove too vexing for her. Her short-term future may be a Washington area nursing home, not Riderwood.

She seems trapped in some sort of inexorable death spiral. We will do our best to change the situation and her spirit. But she doesn’t appear to want to change anything. She feels hopeless. She is withering: losing body weight, losing muscle mass, becoming stooped and increasingly unable to do anything by herself. Yes, I’ve talked to her many times about depression. She has always denied she is depressed and has refused repeated offers to get therapy. However I was successful in getting my parents to get some counseling together. That seemed to have some effect, as they were able to agree they had to sell the house and move on.

Those of us who love her are of course deeply affected by her condition and her attitude. We so desperately want to make things better for our Mom. We want to see her happy and smiling again. My mother’s life is all about giving of herself. But from her perspective there is nothing for her to give anymore. Even cooking, her main joy in life is largely behind her.

I realize I am involved in a grieving process for my mother. She has not died but to some extent she is already dead. All of us want her to be like she was: happy, humming, putting together some tasty creation in the kitchen or tending to her flower garden. But that part of my mother is dead. What remains is a severely depressed woman scared witless by the impending end of her life but unable to stop this train that she is on. We offer words, we offer comfort, we offer food but not much penetrates. Perhaps listening to her will help but I am not sure she has anything she wants to say. She wants to totally withdraw.

I would like to think there is something called “the good death”. But I don’t see it happening for my mother. I suspect it doesn’t happen that way for most people. We can do as much as we possibly can for our mother but I don’t think any of it is going to penetrate. We come into this world alone, but must we elect to leave this world alone too?

We on the periphery of her life bite our nails, grieve and mourn for our mother who is still with us. As we watch her go we feel her terror. We know her issues are issues we will have to grapple with someday. For myself her experience only feeds my own fears about my dying. It seems so unfair for anyone to die. We know death is the price of living yet to watch the process with someone you love just makes me apprehensive and angry with the gods. Death should not have to be so wrenching.

Williams’s Fantasia perfectly describes how I feel: Anxious, poignant, resigned and hopeless. I am mirroring my mother’s own feelings. I try to stay busy and keep with the tasks of the day, but her dying hovers over me constantly. Now that she is moving closer it will become an even closer and more personal experience. I need to go through this experience; it too is a part of living. Yet it leaves an acrid taste in my mouth.

I am left hoping I can find the personal courage to give my mother my best in her last days. She needs to feel the love we always feel for her. Yet I know when her passing comes will be both a traumatic blow and a relief that she (and we) are free at last.

August 7th, 2004 at 03:21pm Posted by Mark | Life 2004 | one comment