Wednesday, October 8, 2008

A Hole in my Heart

In September my mother died. It has left a hole in my heart.

She was 85, so it was not unexpected that she would die sometime in the future. But she died suddenly. Not from a lingering disease or a chronic condition. Instead, I got a call from her on a Saturday morning saying that she had fallen in the shower on the previous Wednesday night and was now in the hospital and that they had taken a CAT scan and found a tumour in her brain.

At first I under-reacted. Your parents live forever. Events can't possibly be catastrophic. There will still be time to respond. So I talked, and shared the worries over this, offered to rush down to visit, but we decided it was not necessary. I made a series of calls to her hospital room and my worries grew. In the conversations, without her ever becoming explicit, it became obvious to me that she was expecting me to advance my normal plans of visiting in October to a plan to rush down and be with her for the surgery. But we agree that we would wait to see what the MRI found.

On the very next day, Sunday, I called her hospital room and suddenly I could tell something seriously was wrong. First, she was a little more confused than I would normally expected. Sure, as you get older facts don't jump to your fingertips, words are slow to come, but this was worse. So I worried. But what clinched it for me was that she confessed to problems that she had held back mentioning. She was a woman who bottled up her problems and never wanted to burden others with her pain or her sorrows. She disclosed a series of falls. I already knew she had problems typing. Suddenly I could understand that the tumour in her brain was serious. So I immediately contacted my brother and said we had to get on the road quickly to get down to see her.

On that same Sunday I quizzed the surgeon carefully because I wanted to assure myself (and my mother) that the surgery would be safe. My attempts to evaluate options by asking him what choices of treatment and what likelihoods could be attached to each were met with no success. He simply refused to discuss probabilities or statistics. Instead he made the fatuous and obvious claim that "each case is individual". I knew that. Just like every ball pulled from an urn with 70 black and 30 white balls is a random event and there is nothing certain that can be said about it. But knowledge of the population allows us to assign a probably of 70% that my reach into the urn will turn up a black. This surgeon either didn't understand this simple mathematical fact or statistical characterization, or he purposely acted disingenuous and hid behind "each case is different" to refuse to make a claim that might lead to a lawsuit. Despite my earnest plea to give me the statistics and my assurances that I understand that probabilities are not predictions, he refused to give any charaterization other than (a) the surgery was simple and (b) although my mother was old, she was strong so he felt she could successfully undergo the operation. Nothing I said could get any other information out of him that would help me guide my mother in her decision. (She had initially indicated to me that she would refuse an operation, but after the initial shock, she had come around to accepting it as a way to "gain time".) I had emphasized repeatedly to the doctor that I was concerned to identify the risk of any "mental deficits or function loss" (my words) as a result of the surgery. I told him that my vague knowledge of brain surgery was that he would have to operate on her while conscious to ensure that nothing critical was damaged. He assured me that there was no need for that. She could be put to sleep for the operation and that the operation was "simple" because the tumour was on the surface of the brain and easily excised. He made it sound relatively safe and easy. I was "reassured" despite the fact that I couldn't pin him down on risks or alternatives.

The initial prognosis for my mother was GBM, a tumour which if untreated kills within 7 months. With surgery the average life expectancy was 11-12 months. With surgery and the tumour "responds" to treatment, you can expect to live maybe 2 years. Bleak news indeed. Here are some statistics I found on the web:

Because of Bush's "security" border I couldn't fly (no passport). So I would have to drive the 2000 miles. I would have to wait a day for my brother to drive the 500 miles down from north of here to join me for the drive south. This decision was made on Sunday but the need to get cash and other obligations meant he couldn't leave until Monday. That meant we left my house of Tuesday and were on the road for Tuesday and Wednesday arriving near midnight. My mother had undergone surgery late on Tuesday. So upon arrival I was eager for news. But I got none from my father except that the surgery was "done".

The next morning my brother and I headed out early to the hospital. I had high hopes to see my mother recovering and eager to visit given that we had precious little time to spend since the tumour was putting a limit on her life. But my eagerness to see her ran into a brick wall.

I used the room number and found my way through a maze of rooms in the ICU "recovery room" area. I rushed into a room looking for my mother but was startled to see an old lady slumped in a chair, dazed, being spoon fed. This wasn't my mother! I started back peddling with my brother behind me telling him that we must have the wrong room. But the nurse on duty put a dagger through my heart with the words identifying this woman as my mother.

I hadn't recognized my own mother!

My mother was a vibrant woman. A woman who was always full of ideas, very determined, and always in charge. The surgery left a shell of a woman. My biggest shock was seeing a nurse hand feeding my mother! This wasn't the result that the surgeon had pictured for me.

When I recovered and walked to within a few feet of my mother and said "hello Mother!" to get her attention, she only slowly lifted her head, and from a great distance puzzled then finally said "oh hello X" where X is the name of my brother, not me! I was horrified!

I had worried in some theoretical sense about the surgery but never pictured the horrors of a surgery gone wrong because I had put it out of my mind. The surgeon had assured me there would be no problem. So I didn't dwell on it. Instead I eagerly looked forward to greedily spending the few months, maybe a year or two, left to visit with my mother. Now, however, I was faced with a horror that my mother really wasn't there.

I pulled my brother over to me and and said "no mother, here is X, I'm Y". She then recognized her error and began to name us correctly. But as I interacted with her I feverishly tried to understand the situation. I soon realized that her slouch to the left and her inability to use her left hand and her neglect of my brother X because he was standing to her left were classic symptoms of a condition I had read about in psychology, "left neglect". You never expect to find a supposedly rare psychological condition confronting you, but here it was. It made sense to me of what I was seeing. So over the next few days I approached every medical person I could saying "is this left neglect". A few days later I got confirmation. (One of my shocks is how the medical system abandons you when a failure occurs. Over the next two weeks of my mother's life I found very few doctors willing to spend any time talking to me about her condition. It was as if they simply abandoned her when the result wasn't "positive". That was a shock to realize. The system utterly abandons you when you need it most.)

My initial shock wore off and I focused on "helping" my mother to recover from the surgery. Being naive, I thought that these symptoms were a result of the surgery and would "wear off" as she recovered. Over the next few days a few of the staff led me on in this foolish belief by telling me that she had "swelling" of the brain that caused the problems and that as the swelling went down she would recover function. I passed this "good news" eagerly on to my mother to give her courage and strenghten her will to put in the hard work to "recovery" from the surgery.

Only over many days did I discover that she had a hematoma. In my mind that is just a blood bruise and as the body reabsorbs the dead blood cells the tissue clears and everything gets better. So I persisted in telling my mother that over time she would "recover". In fact, the hospital after six days signed her over to a "rehabilitation hospital" with the purpose of helping her "recover". Only slowly, and after persistent questioning of any medical staff who would put up with my questions, did I discover that a hematoma in the brain is not something you "recover" from. Instead it is like a stroke. It kills brain cells. You don't recover from this. I sadly had to tell my mother that although we would work to "recover", the outlook was getting significantly bleaker.

The medical establishment never sat down with my mother to explain the results of the surgery. They never sat down with me. In particular, the surgeon never came to explain the result of the surgery. It was left to me to pester people and pull out the truth piecemeal. This is completely unacceptable. Over the course of two weeks I was transformed from somebody who saw doctors and hospitals as agencies of healing into a cynic who saw only byzantine bureaucracies filled with people who treated their responsibilities as "just a job" and who never bothered to relate on a human level to the many patients who flowed through their lives. On one level I can understand the institutional failings. These medical people have to deal with so many people and there a lot of tragedies. But on the other hand, if you choose a medical career, you are proclaiming a desire to heal and succor and your responsibility is to connect with the patients and help as much as you can.

On many occasions I found my mother alone in her room with food that had long gone cold. She couldn't "find" any food on her left because of the left neglect condition. Worse, she was having trouble with proprioception, so her ability to maneuver a fork or spoon to get food from plate to mouth was poor. Worst of all, the hospital served meals with implements wrapped in plastic or in hard to open sealed containers that for a healthy person with two good hands it would difficult to rip open or manipulate to get access to the food. Oh, the odd nurse would take time and help feed my mother, but on most occasions they left her alone. I ended up feeding my mother many days, but since the visiting hours were restricted and I had a need to feed myself and do other things, I was not always there to ensure she was properly fed.

The worst for me was the recognition that between my phone call telling her that the surgeon said that the surgery was simple (and presumably safe) and that first visit with her was a full day that she spent alone in a hospital room. A day spent waking up knowing that something horribly wrong had happened, but nobody explained it to her. A day not understanding what had happened. A day in which her husband "visited" but was so horrified that he quickly abandoned her. That was why she was the shrunken old woman, lost, alone, and so hard to pull out of her deep funk that I saw on the first day. She was abandoned. Abandoned by everyone. By the hospital. By the medical staff. Even by her husband.

Within half an hour of that first day that I spent the morning with her, her spirits visibly picked up. That no hospital staff has connected with her, reached out to pull her out of her funk, or even felt it was their duty to tell her what had happened and what she could expect. That was horrible. That was inhumane.

Over the two weeks left to me, we got my mother into fairly good spirits and got her into a "rehabilitation hospital" where she could expect to be assessed and learn coping skills (and I kept promising her, a chance to recover some of her lost abilities). But within 48 hours at the rehabilitation hospital she became sick with H. Influenzae and atrial fibrilation. The last morning, that my brother and I spent visiting with her at the rehabilitation hospital, she was dead tired because she had been up most of the previous night with impacted constipation that required night staff to work to help relieve by "disimpaction", i.e. use of enemas and the physical digging out of the impacted stools. My mother mentioned these problems to us, but apparently the day staff didn't really pay attention to how this wore her out. So the day staff told my brother and I not not let her sleep so that "she will sleep well tonight". Instead, we "followed orders" and kept her awake and consequently she became severely ill and ended up in the emergency room in the original hospital later that afternoon.

We spent a few days with her "recovering" from the strains put on her by the "rehabilitiation" hospital. My mother was becoming increasingly unhappy. She was a vibrant woman. She could not stand the fact that she was now paralyzed on one side and depended on others to help move her to prevent bedsores and help her to use the bathroom (mostly using bedpans). She had one particularly grim experience where staff put her on a bedpan then abandoned her for several hours. She was left screaming for help and was ignored/not heard. Over the last few years my mother had become quite gaunt with very little fat cushioning her buttocks. Even sitting in a chair had become painful, so I had used the Internet to find for her a "space age cushion" using materials developed for the astronauts. This had served her well for a number of years. But now, in the hospital, they had left her for hours on a metal pan with her bone resting unpadded on the edge of a bedpan. Very painful.

The number of indignities I saw that were showered upon her by clumsy, unobservant, hurried, and indifferent staff had already outraged me. On my very first day, within two hours I had observed three occasions where staff stepped on her feet as they manipulated her to/from bed. She had very fragile bones and stepping on her feet was not only painful but could easily break bones. I watched on many occasions as staff lifted her and yanked IV lines as she cried out in pain. The biggest horror for me was the dozens of times that I observed staff place her "service call button" on her left. I would point out to the staff that she had "left neglect" and would not be able to find the button in case of need to call for assistance. Staff claimed they hadn't done it and that they would "make sure" it wouldn't happen again. But in a single afternoon visit I observed this happening three times. Staff simply didn't register that this was a patient with a special need. And the hospital had no mechanism to draw staff's attention to this fact to prevent this kind of mistake. In short the staff really didn't take their nursing responsibilities seriously and the hospital was unaware (or unwilling) to develop practices to prevent these abuses.

Over the two weeks that my mother survived I only slowly came to realize the extent of her physical problems. As I said, she tended to keep things to herself and was never one to complain. But beyond the obvious "left neglect" I realized that she had a problem with proprioception. This was my preeminent concern when the surgeon talked to me the Sunday prior to the operation. I knew that my mother already had trouble typing and was falling more and more frequently, so something was badly wrong with the parietal region of her brain. I knew the doctor would operate there. In my time with her I saw several things that brought home to me the new problems the surgery had caused. She was often unable to reach for a glass or spoon or find find in front of her. She would over-reach. I noticed that she could sometimes successfully grasp a glass and pull it to her mouth and successfully find the straw to drink. More often she would miss to the right. At times she would find the glass but pause running her finger around the rim as if to convince herself that the glass was indeed where her vision system told her that her hand was. On rare occasions she would reach a glass and pull it halfway to her, then stop. When I inquired if she was "stuck" she would admit it and if I gave a slight push she could compete the motion to her mouth. She never wanted to discuss these problems. She silently put up with them.

Only after a week of persistent questioning whatever medical staff who would let me ask questions, did I learn that they had removed part of her occipital lobe. This explained to me some of her bizarre behaviour. After studying her, I mentioned to her that I believed that she no longer "took in a scene"normally and that she was recognizing her family and others by clues such as voice and clothing, i.e. piecing the scene together from clues. She did admit that. Again, she never talked of the problem or complained of it. I had to elicit it closely questioning her. She simply never complained. But in quiet moments I thought to myself how horrified she must have felt upon awakening from the surgery to find herself trapped in a body where she couldn't move and wasn't even aware of the half that didn't function, where she no longer saw objects but had to paste them together as if solving a puzzle, and where she found a horrifying mismatch between the felt sense of body and what her vision told her so that as she reached for something there was this mismatch between sense and sight. Again, she never complained. She silently endured what must have been agony.

My suspicion about her silent sense of loss explained to me something I noticed. She put extraordinary effort into remembering people, especially their names. She tried valiantly to be positive and "chat" with everyone she came into contact with. I interpreted this as a desperate attempt to keep hold of a world that had crumbled. She must have felt as if she had slipped to the edge of an abyss and was clinging precariously, so every contact that helped her make sense of the world was precious to her. While medical staff around her generally ignored her or treated her cursorily she struggled to maintain a relationship to help make sense of her life and keep a lifeline back to normalcy. It must have been horrible. But, again, she never complained. That was her character. She was not one to discuss, or complain, or plot & plan. She always took life as it was and worked hard to organize it and manage as best she could given what she had. Her whole life she had striven to rise up beyond her poor rural roots and "make something" of herself. She was quite proud of having achieved a solid middle class lifestyle with a fine home and lots of lovely trinkets that reassured her of her worth and her sense of beauty and her joy in life.

The truths about my mother's condition came out in dribs and drabs. About 4 days after I arrived at the hospital I heard that she did not have GBM but a "small cell cancer tumour". This lifted my spirits because GBM was a quick killer. But then I was pulled aside by a stand-in doctor for the family practice doctor doing rounds at the hospital. He told me that I should not let my hopes run high because she in fact has a metastisized tumour. GBM would be a "primary tumour", i.e. a tumour that started in the brain and the success in removing it determined the outcome. But with a metastisized tumour, it has already spread, so the prognosis was more grim. Over the next day or so I finally got the news that the "small cell" cancer was "consistent" with lung cancer. In short, lung cancer had spread to her brain. But this was puzzling because the CAT scans showed no lung cancer. Apparantly she had lung cancer with no visible symptoms and this had metastisized and spread to her brain. In short, her prognosis was grim. This was indeed sad news, difficult to take, but we, the family, accepted it. What was unacceptable was that this "news" was never delivered directly by the attendant physician. (I to this day don't know who supposed to play this role: the surgeon? the neurologist? staff from the oncology group that were treating her and pointed her to the surgeon? the ward doctor of the hospital? or the family physician and his stand ins?) It was whispered to me as a result of my persistent questions and only when I was pulled aside and secretively given "the facts" by a stand in from the office of her family physician as a "little secret between the two of us". I found it terribly upsetting that the medical establishment has no apparant procedure for keeping a patient/family informed of the status of a patient. Presumably the case book has all this in it, but it is guarded jealously by the hospital and we never were sat down and had this material "revealed" to us in a systematic or coherent way. Instead, I teased it out over a week, piece by piece, which only made the whole process more disheartening and painful. Especially when I could never be sure that the story I got was the "official" one. To this day I do not know the cause of death of my mother. I have had not official statement of what her disease was, nor of the outcome of the surgery. All I ever "officially" received was a phone call from the surgeon saying the surgery was a "success" and one visit by the surgeon that quickly devolved into his "feelings" being hurt when I simply noted that her condition was not consistent with what he had led me to believe in the phone call in which I tried to inform myself of her treatment options so that I could advise her. In short, the whole medical system failed us, ignored us, and turned my mother into a victim.

After the trip to ER from the "rehabilitation hospital", she was back on the ward at hospital. Because of her previous bad experiences she quickly became very unhappy and wanted to "get out of here". We struggled for a way out. The only obvious technique was to sign her up for "hospice", i.e. a ploy that told the system to "let her be" and "let her die with dignity". At that point I really didn't expect her to die (at least not for months and hopefully a year or more). She was not obviously dying. She had always had a will of steel, but she was at the end of her tether. She wanted away from all the medical "care". I simply wanted a way to get her to a facility that showed more care for their patients. A visit to the hospice revealed a wonderful facility that was quiet (the hospital was always noisy filled with staff loudly chatting, continually coming into a patients room and rousing them from sleep) and where the staff seemed really focused on making the patients comfortable and willing to spend time with the patients. So we got her signed over to the hospice and moved.

Once at the hospice we were soon told that since my mother was not "actively dying" that she would need to be moved within a week to a nursing home since the beds at this facility were reserved for those who were actively dying, i.e. were expected to die within two weeks. So over the next three days my brother and I spent precious time running around trying to find an appropriate nursing home. This was time that could have been spent with my mother. But since she wasn't "actively dying" we had given our marching orders. So we spent the better part of three days visiting a half dozen nursing homes, one large commercial operations but that reminded us of the "hospital" setting, so we focused on small private homes that took in a handful of patients for care in a home setting.

Sadly, within 5 days of putting her into the hospice she was dead. She died faster than most of the "actively dying" patients. Why this facility forced us to spend time on the road looking for a place for my mother when in fact she was dead within a few days is just another mystery to me. Just another insult from a system that treated us shabbily in so many ways.

Even the hospice let us down. On the last day of my mother's life I went in to find her barely covered with a sheet. A foot and an arm were outside the covers. When she didn't respond to my greeting, I touched her and to my horror discovered that she was deathly cold. I immediately put several blankets on her. For some reason the staff had either removed blankets or not noticed that she had pushed them aside and her body temperature had fallen. It was so low that I could not rouse her from the deep sleep she was in. Her family doctor, a man who had lived two houses doors down from the last place my parents moved to years ago, came in that morning. (I had fought with his office for most of the previous day trying to tell them it was urgent that he drop by early to visit with my mother because she wanted to talk to a doctor independent of the ones who had "treated" her in the hospital.) After much pressure I finally got him to agree to come over first thing in the morning (between 8:00 and 8:30 AM). My brother and I arrived at 7:45 AM to ensure that we didn't miss him. But that meant we spent 45 minutes with my mother in a state where I could not rouse her. Sadly, when the doctor arrived he couldn't rouse her either. He seemed distracted. He clearly indicated that he saw this "visit" as an imposition. So all he did for me was help identify her neurologist and then left. (I spent the rest of my mother's last day calling this neurologist's office incessantly trying to talk to him about (a) my mother's deep sleep and (b) the fact that she had grabbed the right side of her head with her right hand and seemed to be in pain. I felt the hematoma was probably spreading and she was in pain. I wanted a doctor to see her and tell me what was happening.)

The only good news is that on the last day of my mother's life we got a call at 4:00 PM from the hospice warning us that her breathing had changed and that this probably indicated that death was imminent. My brother and I rushed down and spent the last 45 minutes of my mother's life with her. I would love to say that I spent that time telling her how much I loved her and blissfully recalling wonderful times. No. Instead I spent the time worried about her pain. I held her hand. I comforted her. I kept repeating that "things were fine" and that she should "breathe slowly, deeply" (a technique I had used a week earlier to get her though a panic when she was coughing and having heart problems). I caressed her face and tried to ease her over to the other side. She wasn't able to speak. I'm not sure my squeezing her hand evoked a squeeze back from her. I think so, but it could have been my imagination. I'm not sure that all my words comforted her, but I think they did because I have a sense that she was looking back at me as I talked to her. But I positioned myself to talk to her so it may have been me putting myself into her vision and not her looking at me. But... still... I do feel that I helped ease her over the great fear of impending death. Her breaths were gentle. She never panicked. He last breaths came more slowly and then... she just stopped breathing. I waited ten minutes. Then I went to find a nurse to tell her that my mother had died.

Death came gently. I hope I helped ease her way. I'll never know for sure. But I like to think so. I know that I certainly would want somebody to sit with me at the end of my life and help ease my fears as I slip away. I feel I did help my mother at the end.

How do you repay a mother? She has given you life. She has done so much for you over time. In this case, she was always the one who listened to me, who cared for me, for all of my years. She was my best friend. I shared all my thoughts with her. It is so sad to go on with life without her. I know I must. But there are so many little things that remind me of her. We spent over three hours a week on the phone just talking. So many times each day I catch myself thinking "oh, this is something I should talk to my mother about" only to realize that there will be no more phone conversations. Her death leaves me awash. I now feel more immediately the finitude of life. I know now that I have roughly 25 years before the Grim Reaper takes me. These are hard thoughts. You want to kid yourself and pretend you will live forever, but the death of your mother puts a boundary to your life, a boundary that closes in, a end that looms, an emptiness that haunts and pains. Life will not be the same.

I will go on. But now I go on alone. That is the saddest thought of all.

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