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Sunday, July 10, 2011

I don't want to start any blasphemous rumors, but I think that God's got a sick sense of humor and when I die, I expect to find him laughing"...Dave Gahan, Martin Gore

It's been a ridiculously long time since I've made an entry, here, life intrudes. I'm writing this in the hope that some of you can relate. It may seem a bit whiny, fair enough. I've had several talks recently with people that have been in this situation, and it seems that if you haven't been down this road, you just don't get it. A few of you know that I'm helping take care of my dad who has Alzheimer's and now cancer. The cancer is not curable, and when he was more lucid, less than a year ago, we made the decision not to treat it. He would be risking a collapsed lung, or heart attack just from the biopsy alone. His quality of life at the moment isn't bad. Radiation and Chemo won't cure him, and at this point, well...there is no point. In the very weirdest Catch 22 way, the Alzheimer's is a blessing here, as he has forgotten that he has terminal cancer. So far, he's not in pain. A little short of breath, decreased appetite, that's it so far.
The past couple of nights have been tough emotionally. The memory loss has become more severe. Dad is now forgetting how to do basic things like when to eat, that fact that the bus at his facility can take him to the store, where his razor is. When he has to make a choice, it's really difficult for him. Menus confuse him. tonight at the diner, he couldn't figure out which door was the right one for him to enter the restroom. When the waitress offered side dish choices, he got overwhelmed. Too many things on his plate overwhelm him.
He also repeats himself often, asks the same questions over and over, and make statements that don't make sense. It's very chaotic, because his mind is in chaos. He forgets that I'm coming over to see him, that I've called him that morning, how to use his debit card, figure a tip, write checks. The past couple of nights this has all really gotten on my nerves, and that makes me feel incredibly guilty. He is also engaging in a lot of very juvenile behavior. He drags the straw from his drink across my hand, he steps on and holds down my down foot under the table, throws the paper from his straw at me. It's so surreal, as it's like he's another person. He was always the most even keeled, easy going guy I ever knew. Even if he was really angry, he was subtle. He would go all still and Clint Eastwood, talk quietly through his teeth He didn't swear, or yell, or lose his cool. All of that has gone out the window, and it's very difficult to be around.
I've learned is to keep things very regular. Call at the same time, go visit at the same time, Order the same things for him that won't confuse him.
There are some great moments, along with the scary ones. Today, a regular day, I head over to Dad's for cards and Martinis.
He gets ice, (downstairs at the facility) and makes the ritual Martinis.
I get the cards, I deal. Gin Rummy. We play. I kick his ass first round. And the usual litany, OH POOR ME starts...
"How can you do that to me? I fed you, clothed you...Is this what I get?"
"Oh Geeez, yeah Dad, I'm sooo mean... your deal..."
We play, I win, which honestly has to do with strategy, and a great man with memory issues can't win over someone who knows him...
And we play again. And luck is on his side...and we play again, and again, and then he kicks my ass, and then me him, and over again...
And we have these conversations..."Do you hate me? Because you must, with the hand you've dealt me".
"Yeah, I feel so bad for you, *snort* not...and well...There's that pesky time you have left thing again... This is the good stuff.
I've had some serious heart to hearts with good friends in the past couple of days. Those that know me, and know the disease. The running theme has been we are engaged in a war zone. Seriously, WAR. It's a mine field. You never know what you are going to get.
I am a a reader, I've been thinking in the past few days of  the iconic Richard Matheson novel "I am Legend". In this story, the protagonist, Robert Neville, spends a great deal of time sitting up at night, having a drink, and contemplating what life means. He thinks about who he is, and why the universe can be so cruel. He listens to the diseased outside his home, trying to get to him, trying to sap his strength. I relate to this because Dad's disease is like a vampire, sucking the essence of who he is out of him. I've struggled to maintain my own sanity, be mindful and not let things get to me. I've spent a lot of time to myself, sitting with a beer on the porch staring at the Lake.  I wake up late at night and fight anxiety. I feel like I'm weathering the vampire assault, emotions boarded up like the boards of Robert's house. Every day I have things I must do to arm myself for the chaos. I exercise, I make myself go out, as when  I hole up here, the walls start to make an inward march. I try and do something creative so that my mind doesn't dwell on issues at hand. Garlic and mirrors. I try and slough off the anger and dark thoughts. There is a certain amount of futility to suck up, as I know things will not improve. I feel under siege. The bunker is the home that Dad and Mom made, and it is full of their ghosts, reminders of things lost. This visit, I rearranged things, and brought some of the comforts of home with me. My cats, some brighter lighting, projects. It does help. The anxiety lessens, even though the chaos, my nemesis, waits outside like the vampire horde that Richard Neville tries so desperately to make peace with. I found some today thanks to friends on that social network.

Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.
It matters not how strait the gate,
How charged with punishment the scroll,
I am the master of my fate:
I am the captain of my soul.

Amid the chaos of disease, I try to be the captain of my soul. I know that I am making the right choices out of difficult ones. I treasure the time spent with my ailing Father, and know that when it has reached it's inevitable conclusion, I'll have no regrets. Still, it's a tightrope to walk that I wouldn't wish on anyone. In the meantime, I will try and channel my inner Van Helsing, and keep the Faith.


  1. My beloved wife--

    I am so moved by this. You convey everything you can't on the telephone.

    I am so proud of your caring heart, and your determination to be steady in the face of what you see, and feel, and bear.

    I wait, with love. I am sorry I am not there to share the work of helping your dad, and regret I am not the one you can lean on or bare your hurt to at any moment of the day.

    So glad to be your husband.

  2. Jane,

    Remember I'm only a phone call away. I know what you're going through. I went through it during my last year with my grandma as her brain cancer took her from me. So if you ever need to talk you can call me any time on my phone. Think I gave you the number. One thing I learned from my experience is that I COULD do it. You Can do it too Jane. And you're stronger than you may think!