Day 8

Wow…what a day.

The nurse visited today.  She is a very caring nurse, very knowledgeable, and very kind to my mother.  However…she is a nurse.  No, she is a hospice nurse.  Yes, I know it’s not her fault, and she is here to help my mother…I get that.  She is also a symbol, though.  She is the Angel of Death coming to visit twice a week to measure the progression of my mother’s disease like you or I might check on a roast in the oven.  Is she done yet?  Nope…add another 10 minutes to the timer.

Okay, that’s harsh.  Still, the imagery was reinforced further by my mother’s behavior.

As anyone who has watched this unfold can tell you, there is a progression to this disease that is different than other forms of cancer.  With other cancers, there is often a cascading failure of organs that serve as an alert that the body is losing the battle. Conversely, brain tumor patients have been known to still be in possession of their motor and speech skills just a couple of days before their passing because of one crucial difference: the brain, in its role as the control center for the whole body, has the capacity to shut down everything in one motion, without taking it organ by organ.  However, the one area that does deteriorate slowly, in stages, is the brain itself.  As a result, higher brain functions are often the first to go.

Some of the earliest symptoms of this deterioration of the brain include confusion and memory loss, the inability to sustain a conversation, and random questions or statements juxtaposed with clear, rational questions about death, arrangements, etc. (You might recall that yesterday I mentioned examples of this, when she randomly asked me from the other room what I was drinking and later asked me about brain death and pain.)

To combat this, she has begun a mental exercise.  She recites the days of the week to test her memory, first starting with the current day.  The manner in which she does this is somewhat eerie; it’s more of a nervous tick you might expect to see in a patient in a psych ward.  It was as the nurse loomed over her to check her pulse that my mother decided to perform this exercise.  In my mind’s eye, this was almost a perfect reenactment of Van Helsing warding off Dracula by reciting Psalms 23:4 continuously.

Yeah, I know…I’m morbid.  Feel free to select your favorite societal scape goat and blame it for me.

Another ‘sign of the times’ is the periods of confusion she is suffering from.  Today she came into the kitchen, got three words into a sentence, and just stopped as if someone had hit her off switch.  Now, we all have spacey moments (especially when we are tired) where we sit and stare off into nothingness, lost in our thoughts.  I know I have.  The difference with her is that these moments are occurring with increasing frequency, completely at random, and are more about trying to simply find and hold on to a thought than they are about sitting thoughtless and tranquil.

In a perverse twist, the day ended well, though.  In a way, it was like finding a holy relic in a den of iniquity.  As we sat down to dinner, I noticed her struggling with her food.  As she had done for me on countless occasions when I was a child, I asked if I could help.  I then sat there, cutting up her food for her, to which she meekly said, “Thank you.”  I told her she was welcome, and that I loved her.

The Angel of Death will just have to wait another day.

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Day 7

Yesterday started the same as the last few. I was supposed to be off of work one more day, but I decided to return early as there was a lot of down time here at the moment. The focus of course is still on my parent’s needs. However, I can’t just sit on the couch waiting, so…to the laptop I go.

After making coffee and getting set up for work, I thought I would also get started on breakfast for them. I threw a dozen biscuits in the oven, as I know both of them like sausage and biscuits. The sausage was already prepared, having been cooked up and frozen the day before. (Thanks honey!) All that remained was to bake the biscuits and ‘nuke’ the sausage, and voila! Breakfast is served.

Unfortunately, my mother wasn’t very hungry when she got up.

Overall, she seemed the same as she had the past few days. Her speech was still stiff and slow, as though the act of moving the jaw was taking extreme effort. It reminded me of what mine felt and how I sounded like when I was frozen from being outside too long in one of Illinois’ colder winters as a kid, when your jaw muscles went all tight. I am not sure if her difficulty is because of an issue with the control messages getting to the muscles, or if the issue lies with the process of forming thoughts…or both. All I know is that she sounds most of the time like she is intoxicated.

For the most part, though, the appearance of intoxication ends there. She is aware of her environment, can walk, and can still do basic things on her own. Still, it’s sad. She has moments of clarity and then can suddenly seem like a person in the middle stages of Alzheimer’s. During her moments of clarity, it is clear she understands what is coming, and is trying to approach it with resolve and dignity. Unfortunately, those moments where the clarity fades rob her of both of those.

This afternoon, while in the next room, she called out quite randomly and asked me what I was drinking. It was almost like it was part of another conversation, so much so that I would have thought she was talking to someone else if not for her using my name. She has also taken to telling both my dad and I, at random, that she loves us. Those are the truly heartbreaking moments, when you know she knows. She gets it. Time is up.

As the day progressed, I kept busy alternating between work and taking care of them. The hospice aid came and gave Mom a shower and that seemed to brighten her mood a bit. As she lay on the couch, dozing off and on, she would occasionally call out to my father or I that she loved us, to which of course we would respond in kind. Everything seemed to be about as okay as they could be, until later afternoon when reality gave me a gut check.

My father had stepped out (his way of staying busy and coping, just as this is mine) when she called out to me. I got up and went to her side. She looked me straight in the eye and asked, “When my brain dies, will I be awake or asleep?” It wasn’t in the tone of an adult asking how something works. It was like a child asking what happens to the family pet when it dies. After I answered her question as best I could she then asked, a small tear in the corner of her eye, if it would hurt. I reassured her it would not, shouldering the pain of that question as best I could. A rock, I reminded myself…a rock.

Later, after my dad returned and I ran a quick errand to the store (she had requested garlic bread to go with the spaghetti I was cooking) I cooked diner, then cleaned up the kitchen and washed dishes. She and Dad watched her favorite show (The Voice) while I did this. Once done, I joined them and together the three of watched TV, talked, and laughed. When Dad asked her to go out and to the porch with him for a bit, though, she declined, crying a bit as she did. This was the first time she had done that, and it hit Dad hard.

The night ended with me, being the pragmatist I am, giving Dad the hard facts after she went to bed. The doctors had told them she had 2-3 months, but based on her symptoms I was pretty sure it was going to be less than that. I told him what to look for and what to expect…something doctors never seem to do unless you drill them for it. Then I went to bed to give him time to cry in private, as I knew he would prefer.

Why Blogging, and why now?

That’s a fair question, one that I have asked myself several times today. A great many people who chose to blog have many insights to share, and are experts in their areas of choice. Not so with me. While I have certainly had my share of experiences and adventures, I am by no means an expert or an authority on pretty much anything. As a friend of mine stated recently in his own lament about blogging, “I don’t have anything unique to say.” And I don’t, at least not from the standpoint of subject matter.

However, one of the responses to his post struck a chord with me at this moment in my life. The person said that a blog by someone trying to find their focus and discover their “passion” in a structured way would be fascinating. Well, I am not trying to be fascinating. As an artist, though, I can totally understand the point he was making about letting your passion move you. In my myriad experiences I found that only one thing motivates someone, inspires them to create and relate in new ways, more than any other:

Pain.

Which brings me to the question of, “Why now?”

Last Tuesday, I found out that my mother’s cancer had returned. A year ago, she was diagnosed with extensive small cell lung cancer. She fought with everything she had, of course, and underwent a multitude of chemotherapy treatments and tests. That fight seemed to bear fruit when, just a few months ago, she was given a clean bill of health and declared in remission. Unfortunately, with small cell, it is possible (even likely) that it has already metastasized by the time you have discovered the first masses, yet still be too small to detect. This was the case with my mother. Unbeknownst to everyone, the cancer was already in her brain.

So, here I am, trying to do something positive with the pain, as I watch my mother’s decline and my father’s heartbreak.

Let me start out by saying that I do not intend for this to be a sob story or to be overly depressing. (Although, I cannot promise it will be all sunshine and roses. You were warned.) I also do not intend to paint myself with a flattering palette. I intend to do this the same way I do my artwork…stark, honest, real. As anyone who has seen my artwork can attest to, I specialize in photo-realistic pencil work. I intend to do the same here. I am not perfect, and I would hope that any of you reading this do not expect me to be because (gasp!) neither are you. I won’t hold it against you if you won’t hold it against me.

Thanks for listening.

Michael