Monday, June 1, 2009

Mary, I need you ...

“I know that you believe you understand what you think I said,
but I'm not sure you realize that what you heard is not what I meant."
Robert McCloskey

Sometimes I fantasize about writing a book. When I am in that land of make believe I'm assured that my book will be a bestseller and I will end upon the Oprah show and we'll sit next to each other in those big comfy chairs and laugh about life and Oprah will reach over and touch my hand and say, "that was an 'ah ha' moment for me." In this fantasy I won't be stumped for words or crying. My hair will look great and the camera will show me at my ideal weight.

I don't really believe I've got the "write" stuff to produce a book. I doubt my life is the fertile ground from which books blossom, certainly not an Oprah class book. But I've learned in my writing group that I'm far better at writing what I know than fiction.

I think I have decided to call my [fantasized] book Mary, I Need You. The words don't have a lot of pizazz in them when you see it written on the page, but believe me when you hear the them come from across the hall in the wee hours of the morning by the one who's named you his health care surrogate sounding old or sick or scared or a combination of all three they can make even a sound sleeper like me come alive. Moms and caregivers should be able to relate to the book.

Normally I don't move very fast. Yet, I continue amaze myself at how quickly I can go from a deep sleep on one side of the hallway to standing by my father's bedside before he gets the second "Marrrrry" out. Adrenaline is an amazing thing. Adrenaline is my friend.

We practiced the drill twice last week. One mid-week morning, about 2:30 am, I got the call. I zoomed into Dad's room to find him sitting in his reclining chair, not his bed. His pajama shirt was tucked into his diaper-like underwear. He looked more like a child than the father who still has me jumping through hoops.
"What's going on?" I ask while trying to adjust my eyesight to the semi-dark room.

"I feel funny," said Dad. Even in my only half awake state I am aware that this funny feeling is anything but humorous and I'm going to have to apply my deep powers of observation to determine exactly what is bothering him.

"Do you hurt anywhere?" I ask as I tenderly put my hand on his forehead and determine that he is a bit sweaty, but not feverish.

"Nope, no pain. But my hands feel, funny .... tight." He flexes his fingers as if to jump start the circulation the to the tips. "Do you think we should go to the ER?"
The words emergency room shoot through my brain like an electric shock. Followed closely by, is this the end and oh god, please don't let it be the end, I'm not ready for it to be the end.

Dad asks this question in a matter of fact way but I hear it as a direct order. At times like this Dad flip flops between being the patient and the man in charge. In fact every time we've had one of these middle-of-the-night drills, he has never NOT been in charge. Despite pain, fever, or heart arrhythmia Dad's military training kicks in and he gives orders.

I imagine Dad's arrival at the Pearly Gates something like this: He stands at attention with his hand to his forehead in a crisp salute. "Reporting for duty, Sir, " Dad says using his Captain's voice no longer weakened from age and illness. St. Peter chuckles to himself about having another sailor aboard who must be taught in heaven he no longer needs to be in charge.

I think we should call the hospice triage team. After all, one of the reasons we opted for hospice (in my understanding) was to eliminate visits to the emergency room. Because there was a lack of any sign that would definitely point to a heart attack or imminent death we both agreed to go back to bed to await what would happen next. First I called hospice and, thankfully, was assured by the nurse on duty that they could - and would - send someone out to check on dad, give him some anxiety medication from the "special" box and notify his nurse in the morning. It was my call. I decided to wing it.

"I'm not anxious about anything," said Dad. "I just feel funny. Where's my pee pill?"
I gave him the diuretic he asked for and crawled back under the covers. I tried to slow my breathing back to a normal rhythm in an effort to go back to sleep. After about an hour of listening and praying, I succumbed to the coma-like sleep state that occurs when the adrenaline wears off.

The next morning when I checked on Dad he was sleeping like a baby. The hospice nurse called to say she'd come see us later in the day. While Dad slept I had time on my hands to think.

Are these little blips on the cardiac seismological graph of a 92 year old man with congestive heart failure and cancer precursors to the "big" one that Dad is sure is coming any day now? Does dying happen like an earthquake? Little tremors, here and there, then boom an 8 pointer happens and you're gone? What are the warning signs that an "aggressive" cancer has eaten its way through my father's body? Are there warning signs? And what about Dad's tough, I'm-ready-to-go talk? Does it fly out the proverbial window when he has to actually face the end? What about the caregiver? Does she go to "GQ" (navy lingo for General Quarters - all men to their battle stations) at every odd feeling the patient experiences? Or does she hold the DNR (Do Not Resuscitate) order in her hand and let things happen?
Once I had myself worked up into another frenzy brought about by my own fears the hospice nurse cameThe three of us sat around the kitchen table talked. Sweetie hovered in the background wondering if he was a part of the it all or just a silent bystander. In the light of day, and in the face of someone other than his daughter Dad's demeanor was light and bordered on witty. It almost seemed as if he was questioning MY concern; that I'd made a mountain out of his feeling "funny"molehill. (ME????????) He could remember the early morning problem but it was fuzzy. Fuzzy or not, he was sure of one thing - he had not be afraid. (Who was that scared guy sitting in the chair taking his blood pressure, not once but thrice, I wondered to myself before I refocused on the conversation.)

We covered a lot of the same ground we've covered before. Most of it was rote. Some of it was new. Dad gave his "I don't have a death wish ..." speech and I tried to listen more carefully. Or maybe I just heard it with new ears.

It took awhile for it all to sink in, but here's what I finally realized. My father is old. He's got cancer. His mate of 60+ years is gone. Most of his friends are gone. He has aches and pains that keep him from being active. He does not look forward to many more days/weeks/years of this kind of life. He is a bit of a grumpus. He is an engineer. He is very practical. It makes sense to him that a life, which has been a good one, should be over sooner rather than later. He's ready to go.

BUT ..... he does not want to hurt. He's chicken, to use his word.

Apparently what I see in the middle of the night is not a man who is afraid to die. It's a man who is afraid to hurt. A man who doesn't want to be alone in the dark wondering how bad the pain that kills him is going to be. Two sides of the same coin? He calls out to me, not so much for help but for companionship. It kind of makes sense that if I'm there to boss around, then he can feel in control.


There is a part of me that doesn't really believe everything he says. I don't think he's as ready to give up the ghost and cross over as he says he is. He's there in his head, but I don't buy that his heart has followed suit. However, my job is to listen, be patient, be compassionate and be supportive. If that means staying calm in the middle of the night and making his boogie men go away, then I've still got some learning ahead of me. Dying must be a narcissist's dream. It is, after all, all about him. We'll each have our turn and none of us knows how we'll do until our time is near.

I believe there is a reason I'm learning these lessons. I'm just not sure yet what that reason is.
Merry ME


terri st. cloud said...

what an amazing journey,
and what a good insight.

that so seems to be it so
many times...
not afraid for it to be over,
just afraid of the pain.

i wonder if you'd like the book
'who dies' by stephen levine.
one of my all time favorite books!
so many sentences are gems....

this entire post was a gem.....

Fire Byrd said...

What an amazing post Mary. It was just so accurate about what bothers most people i think, not the dying just the fear of the pain. And the fear is at it's worst in the middle of the night for us all.
And BTW you will never be ready for your Dad to die.

Anonymous said...

For someone who has had interrupted sleep for the past week, these words come from a pretty lucid mind. He is the most fortunate man to have you for his caregiver. This gave me goosebumps! Thank you for being there and for all that you do. lg

Molly said...

This brings back so many memories. I cared for my grandfather from 50 miles away, with round the clock help. I struggled, and in the end, the decision as to timing was not mine, as it shouldn't be.

Oh, and I like the writing!