Caregiver of the Year

I nominated my dad for Caregiver of the Year for our local Relay for Life event coming up on May 14th.  He doesn't read the blog, so I know I can post this here without him seeing it.  Let's hope he doesn't get a wild hare up his you-know-what and decide to visit.  Anyway, here's the essay I wrote last night for his last-minute nomination.  It stirred up stuff, of course, which just continued today at school.  More about that later.  Anyway, it's a post, finally!
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I would have liked for someone else to write this essay, and it breaks my heart that that’s not how things turned out. And so, I write this not only for myself, but on behalf of my beloved stepmother, Edna. She would agree with me that my dad, Jerry, is the Caregiver of the Year. There are many reasons why I know that my dad is the Caregiver of the Year, and if he isn’t chosen by the Relay Committee, I will give him this letter so that he knows exactly how much I appreciate all that he went through and all that he did.


When Edna was diagnosed with Stage IV lung cancer in January of 2009, it was a terrible blow to the entire family. Some of us knew from research that the odds weren’t good, and Edna had a hard time fighting it from the get-go. Somehow, it seemed that she knew what the rest of us weren’t willing to admit—that she would lose her battle no matter how hard she fought.

Edna’s fight would last until October 18, almost exactly a year after she first started having symptoms. Throughout it all, the one person who steadfastly refused to admit there was a possibility that she would die was my dad.

A man who is squeamish enough that he can’t stand to see children’s runny noses learned and performed procedures that she couldn’t handle on her own—and he never flinched. He dealt with every possible situation with the utmost care and sensibility, in a way that not only took care of the task at hand, but with every pill, every treatment, allowed her to see exactly how much he loved her and respected her.

A man who had lived a fairly old-fashioned existence learned new things: he learned how to cook, how to run the washer and dryer, and how to load the dishwasher properly. He learned how to grocery shop, and how to buy the very few things that appealed to her non-existent appetite. He made certain that Gatorade, canned peaches, and black cherry ice cream were always on hand, and he provided and pushed those with persistence when she might have given up and grown weaker even earlier than she did.

He sacrificed many things during that year. He sacrificed things that make him happy, that keep him sane. He gave up everything that didn’t involve being with her to take care of her and spend time with her. He lost sleep while making sure she was okay in the middle of the night and drove himself to the point of exhaustion taking care of her. He spent untold nights with her during her hospitalizations, while educating himself at the same time, asking for explanations, seeking second opinions, and buffering her from unpleasant or upsetting tasks or interactions.

My father is a very proud man. He doesn’t like to ask for help, and, like many men of his generation, he doesn’t like to show or admit his weaknesses. So I know that the rare occasions when he did call for “back-up” were out of sheer necessity. As the “second string,” my sister, my husband, and I, along with our young son, spent as much time as possible with our parents, but emotional support and just being there were usually all the help that was accepted.

During the last few weeks of her life, when it had become clear that the end of her suffering was near, she wasn’t really “with us” very much. Her moments of clarity became fewer and farther between, until it was obvious that she had “a foot in each world,” as I saw it put in reading material we were given about the dying process. Dad left her side only out of necessity, talking to her, hugging and kissing her, and eventually, although I know it was the hardest thing he’s ever done, telling her it was okay to let go.

During those long, last few weeks of her life, he broke down frequently, but never within her earshot. Several times he cried to me that he didn’t know what he was going to do without her. The only response I had for him was that he was already doing it!

It had been clear to us for years that she was his rock, his best friend, the one that kept him centered and balanced, his caregiver so many times throughout the years and the minor illnesses we all encounter in our lives. As I write this, it occurs to me that the way things progressed happened in a way that allowed to him to learn to live without her a little a time; it allowed him to grow in so many ways that he isn’t even aware of.

My father misses Edna terribly, as we all do, and the grieving process has been slow. To compound the grief, “survivor’s guilt” also gets him down, in spite of the fact that he did as much as any person on Earth could have to make sure that the last year of her life was as happy as it could have been. I am nominating him for Caregiver of the Year not because I think he wants to be rewarded for his actions, but because it is the best way I know how to show him exactly how much I admire him and how grateful I am for the care he gave one of my most favorite and beloved people. The strength he showed, and continues to show in the wake of her death, is inspiring. The example he set for us, his children, and for my son, is priceless. Dad, I love you, and you are stronger than you know. You were Edna’s hero, her protector, and her best friend, and I know that wherever she is right now, she agrees.

And We Wait...

I can't describe the feeling we have as we sit here and wait. It's surreal, and it's excruciating. The need to be here is overwhelming, but as time passes, the need for it to be over also becomes overwhelming. There has been no normal for about two weeks, but especially for the last week. No set meal times, no real groceries in my house, no sleep to speak of, and certainly no comfort, because it just goes on and on...to the point where my sisters and I are asking each other how it could possible still not be happening and what day it is.

My dad is falling apart. He both needs it to be over and doesn't want it to be, although he could never verbalize that. Tonight he said to me, "I just don't know what I'm going to do without her." I wanted to say, "But, you're already doing it." And he is...there is very little of her left here with us at this point. At least, I hope there is. Sometimes the doubt sets in, and I wonder if her thought processes are clear but her body won't let her communicate them. She's responsive, but barely, and her responses become harder and harder to make out as the hours pass. From a list of "symptoms" of the dying process given to us by hospice (and which seems to be pretty standard, from my poking around on the internet), we have determined that it could be hours or (still) days left before she passes, and as terrible as I think it sounds, at this point, we all need it to be hours.

So, as midnight quickly approaches again, I'm torn between staying here and holding the vigil, with the possibility that nothing happens, or going home to be with James and Andrew and get some rest. If I stay, nothing happens, and if I leave, all hell breaks loose...in my head, at least. I know my decision has no effect on it either way, but it's weighing heavily on my mind.

Even More Despicable

I have avoided writing this post for a while now, even though I have needed to write it for quite some time, for sanity's sake. In the hopes that things would turn around, and with the need to keep some privacy sacred for our family, I have kept it inside. But it doesn't really matter now, because it's clear and inevitable that Edna is dying.

I have not written sooner because she has been one of my blog followers since its inception. She's one of my biggest fans, period, and not just in the blogosphere. She has read regularly until recently, and we have all been keeping up the illusion that she was getting better, because we didn't want her to give up hope. We have made a concerted effort to keep up appearances, both for her and for the public. Not because we were in denial, but because we never wanted her to think she was dying. It's a decision I haven't always been comfortable with, because even though I know that she has no amends to make and no wrongs to right in her life, and because I agree with my dad when he says that she has shown us every single day how much she loves us, I want the chance to make sure she knows how much we love her. The thing is, though, in spite of the fact that no one has told her what's happening, she knows, at least subconsciously. In a moment of clarity tonight when we were alone, she said, "I know there's nothing they can do to help me. I know I'm dying." When I asked her to repeat what she said, she drifted back off into sleep. I have not told my father that, because he takes solace in the fact that she doesn't know.

Tonight I sit in my parents' living room, watching Edna sleep her morphine-induced sleep in the hospital bed and Dad give in to his utter exhaustion on the couch. Throughout this vigil, which has so far lasted since Friday, my sisters and I have taken turns staying here with them...partly because we want to be here for every possible lucid moment that she has until the end, because we would not be able to live with ourselves if we weren't here at the end, and because Dad can't stand the thought of being alone when it happens.

We have all been on an emotional roller coaster for about a month now...from the time we first got the adjusted prognosis. The troops have been rallied several times when it seemed like time was short...and then something would change and we would stand down for a day or so. I have been back and forth through the stages of grief many times now, to the point where I have thought several times that I had no more tears left. I'm wrong about that every time.

It's hard for my brother and sisters and me to watch our dad going through this. We all wonder about how he's going to manage when she's gone. While we all sort of lean on each other in times of crisis, she has been his rock, his constant, his center. And while we all completely sympathize and understand when he has his meltdowns, there's a part of me that wants to not have to be the strong one, the practical one. The luxury of wallowing in my grief is something I just don't have, for Dad, for my sisters especially, and for Andrew.

Throughout all of this, my need to protect Andrew from what's happening, and from what will happen, has been my overriding emotion. He was crushed when my Nannie died last December, and he didn't have a close relationship with her. Andrew loves his grandma fiercely, and she him. I suspect he must know something, but so far he hasn't asked about the possibility of her dying. I dread the conversation, and although I have tried my best not to hide things from him, that's a topic that hasn't been breached. I have been neglecting him through the last few weeks, and that's starting to take a toll on me as well. He and James have definitely had a lot of quality time, but at my expense, ultimately.

I don't know how much longer this will go on, and that's a huge part of the struggle. We're stuck in limbo, not knowing which way to feel. Looking at her right now as she sleeps, it's hard to fathom that she's slipping away before me. A booklet that hospice provided about the dying process put it as being "with one foot in each world," and that's exactly how it seems that she's existing.

I took tomorrow off from school. I need to be here, but I also need to focus my energies on getting through this. Tonight will be a late night, and I'm already exhausted, physically and mentally. My nerves and emotions are frayed...which is most likely why the news that a former student who was in a car accident on Monday morning is brain dead and being taken off life support tonight caused me to break down in near hysterics, and why I almost went off on our moronic janitor for standing around being stupid and trying to talk to me about shit I didn't care about. Oh, and it's definitely the reason I called the local busybody and yelled at her about keeping her mouth shut when she heard and repeated smalltown rumors about Edna's condition. Well, wait, maybe that was just for fun.

Sometimes I Have to Rant

Some of you already know that I also maintain a CaringBridge site for my stepmother Edna, who was diagosed in January with Stage IV Lung Cancer. This is today's update for her site.
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"Life isn't about waiting for the storm to pass. It's about learning how to dance in the rain."

As I was reading through comments that have been neglected lately, I ran across this one that Bev posted a few days ago. I don't know who said it, but he could teach us all a few things, I think. It seems most days as if the storm clouds are sitting right over us, and especially over Edna, who can't always see the sun trying to break through, even though the rest of us know it's there and coming.

I've had to use a lot of restraint lately in my personal and professional life. People whine and complain an awful lot about stupid stuff, have you noticed that? The lunch table at school is especially difficult, because I feel like people are missing the big picture when they're complaining about the petty stuff. They're healthy, they were able to get out of the bed that morning, they were able to go to a job they love and contribute something, they were able to play with their kids and grandkids, and most of all, they were able to go about their day without the fear and the grief that comes with a diagnosis like Edna's.

People with good intentions and good hearts make thoughtless comments, or even errors of ommission by showing public support or rallying the troops for so-and-so who also has cancer, but not mentioning Edna or thinking about how it affects us to hear things like that or to be publicly slighted. At the risk of losing my job or making major waves, I just bite my tongue. Maybe you know who you are?

Well, back to the intended subject...Edna's really having a hard time lately, something that I'm sure was exacerbated by the inevitability of her announcing her intentions to retire. Had her health still been good, Edna had no intention of retiring in the foreseeable future, so this must come as a huge blow. I know it does.

This storm will be a long one, and it's going to "rain" a lot before the sun comes back out. My wish for today is that everyone who reads this takes a bit of the energy they might spend griping about taxes, gas prices, or the jerk who cut you off at the stoplight, and focus instead on the great things you have and might take for granted. I need this reminder as much as anyone, if not more, trust me. And while you're doing that, pray (or whatever it is that you do) for Edna to find the strength to dance in the rain. I'll be there too--no umbrellas allowed.

--Tamara

Andrew created this string-art portrait of Grandma today while we were home for a "snow" day.

I have been sadly neglecting the blog recently, as all three of you have noticed. I have great intentions of updating more frequently, and even start composing things in my head, but then I get sidetracked. Facebook sucks.

I've also been working on and updating a separate "blog" for my stepmother as she begins her battle with lung cancer. As the self-appointed PR specialist, I've been keeping her adoring public apprised of her medical condition and progress on a near-daily basis at www.caringbridge.org/visit/circlesofhope , which has occupied some time as well. While she will, of course, get mention here on the mothership, I really felt a need to create a place that was special for her, which she can eventually start maintaining herself.

We have another snow day tomorrow, even though there's really no snow. I was disappointed after hoping for at least a couple of inches (enough for Andrew to play in), but maybe we can go out tomorrow and slide around on the ice a little. I vow, with all my heart, to come back and post again tomorrow--in spite of the world stopping its rotation a couple of weeks ago, there are some nuggets of normal life to talk about. ---Tamara

Update

Just a quick update, because we need to get Andrew in bed soon so I can mindlessly watch the 2nd half of American Idol. I can't miss the funny ones when I so desperately need to laugh. We found out today that Edna's cancer has spread through her bloodstream and into her spine. She starts radiation tomorrow. It's not great news, of course, but we remain hopeful that if she can regain some strength, she can fight. Consider this a global request for positive mojo sent her way.

A Despicable Twist of Fate

There are some things you just can't anticipate or prepare for. The kinds of things that, if you think about them long enough while they're happening, will break you down so much that you can't bear to go on. Instead, you try to hold on to normalcy as much as possible in the hopes that things return to the way they should be. We're going through one of those situations right now, and I've avoided writing about it, because that makes me face it. But the time has come, and even though reality may smack me upside the head and say, "Wake up, sweetie, nap time is over!" when I'm finished, or even while I'm writing, here it goes.

We found out a week ago that my stepmother, who really is a second mom to me, and not a "step" anything, has lung cancer. There were clues, and as any good English teacher will tell you, the foreshadowing usually leads to something. I, however, looked for other possibilities anywhere I could find them, and actually had myself convinced it would be something more treatable, or curable, even though Edna herself knew better.

Now, lung cancer, for those of you who do not spend your days poring over internet statistics, is the least friendly of all of the cancers. It sets up residence, sometimes even building vacation homes throughout the body, and proceeds to kick the ass of the neighborhood watch in a heartbeat. So quickly, in fact, that a seemingly harmless cough can lead to someone being practically an invalid in a matter of days, and that's what's happened here.

What we all knew as reality is now gone. Every conversation is interspersed with comments somehow related to the diagnosis and upcoming treatment. The things that used to matter, don't, and none of us have even had time to process, deal, or comprehend the fact that this is happening. Each one of us is on auto-pilot and reacting the way we always do to "normal" situations, but amplified by about a thousand--I'm gathering information and learning all I can; my dad is micro-managing; one of my sisters appears to be completely avoiding the issue, the other stuck between wanting to help her mom and wanting to hold on to her own life; my husband is drawing the inevitable comparisons between his own mother's death from cancer years ago. The one thing that we ALL have in common is that we all want to believe that she will overcome this, no matter what the odds are, no matter what the doctors say. And SHE needs to believe that too, which is the hard part. We are all scattered throughout the stages of grief (for life before diagnosis), while she seems to have skipped right ahead to acceptance without fight. It's in my nature to fight, for some reason, or at least to not give in to things that are wrong, and I'm trying to will some of that energy her way.

I'm not big on prayer, God, etc., but whatever it is that you do in these situations, please do it. Light candles, get Buddha on the phone, draw circles of salt on the floor, and if you know a voodoo priestess, I'm willing to call her. Sorry, that's my poor attempt at humor in my request for positive energy sent in Edna's direction---the more energy sent that way, the better.

In the meantime, remind me NOT to read Brian's Song with my classes anymore, because for some odd reason, that's what I planned for the classes after Winter Break. The irony is not lost on me that I have to teach a story about a guy with lung cancer while this is going on--reading should be an escape from reality, not salt poured into the wound.

--Tamara