Still Here

Saturday December 31, 2011

Yes, of course, it’s the last day of 2011. Looking backward, looking forward. We all do this; it’s predictable and the topic can be anticipated in any blog or journal, public and private.

I have been fighting myself all week. Depressed? Exhausted? Post holiday again? My motivation and energy extend just to me and Dave, the bare minimum of care and feeding of us both. And this morning… it is the last day of 2011, ready or not. That means tomorrow I face a new year, a new beginning, right?

Actually, no. Because Dave hasn’t died yet.

Dave hasn’t died yet. This is the big end-of- year conclusion that sets up what I tell myself is to come for 2012. This was unpredicted a year ago. In fact, I expected to be a widow by this time. I expected to be focused on my business and forging forward into accepting my changed life and turning loss into meaningful experience. Life and death is simply not so tidy and predictable. In fact, I have continued to think and plan my life accordingly, thus setting me up for unrealistic milestones I think I should have reached by now.

Dave hasn’t died yet. Obviously there are lessons of life, love, grief, storytelling and caregiving to come. Life is what happens while we are making plans, you know. I am still in the midst of life – Dave’s life – our lives. But sometimes it seems my life is the smallest piece of this pie I’ve been dished.

It’s a scary thought for any caregiver to want or wish for their loved one to not be around. I can’t even say dead, because that is not what I really want; it is to not be in this role, in this scenario. I’d love to keep Dave around for many more years to support, encourage and care for me.

The shift from me, being “Joan” in all my definitions for myself until now, to “caregiver” is one that I didn’t understand a year ago, even as we drove to daily radiation treatments December, 2010. Now the role looks big and important. It takes a disproportionate amount of time and emotion. Caregiving is plural. I even distance myself from the term as I am now a Caregiver generically speaking rather than Joan, the caregiver. It is a transitional idea for me, a temporary position bestowed by circumstances (as compared to those whose profession is as a caregiver).

There was a moment that I first identified myself as a caregiver when I began to relate to the emotions and activities I’d read about from others in this role. It wasn’t immediate with the diagnosis of Dave’s cancer in October 2010 (I now have to add the year onto the date), nor even with his transfer into hospice service last February. I didn’t become his “caregiver” until I saw that he was dependent on my support for his sustenance. I recognized the change in my status  when I became his legs to go up and down the stairs for his meals on a regular basis last Spring. Yet, all along this journey this is what I do purely out of love and care for Dave and in return for the love and care he has shown me throughout the years.

It is hard to admit aloud, that I am ready to live my “new normal” without him. Perhaps it is a bit of a self-preservation response. I know it is not an unheard of, and is silently wished for, by a large percentage of family caregivers. It is even comprehensible when pain and suffering are present.  This time can be very painful not to mention tiring, emotionally and physically. It is not that I want Dave dead. It is that I want to get control of what I can control once again. I want to see him in his wholeness of the man I’ve known for a long time.  I mourn him in stages as he disappears before my eyes. I know I can’t have life as it was before, and I don’t like the way we live now.

Since Christmas we have both slept – a lot! We have been trying to revive our energy. Mine is starting to refill, albeit more slowly than I want. His is becoming depleted. I see subtle losses. A thought dissipates mid-sentence. His eyes close unknowing to him.  He struggles to move his body. He depends on me a little more to help him move about.

Lest you or I really think that I want him dead, I did have a moment of fear for this impending reality. On Wednesday, in complete exhaustion, Dave was sitting up. The position change is needed to reduce the pressure wounds on his rear. (That’s a story of its own.) I sat by his side, rubbing his back, easing the soreness of his ribs pressed by the tumor. He was half asleep, existing only in the moment. I could see and feel each ligament of his neck.  Suddenly, he fell into my arms, completely surrendering his weight and his exhaustion for me to hold. I could feel the true vulnerability of his life for the first time during this ordeal. “Oh yeah,” surprised by my own thought. “This life as we know is going to end before I am ready.” I was startled by the depth of my intuition. I will never be ready.

His body is failing. There is a relative rise and fall each day like his breath changes from shallow to deep. We can’t predict how much time remains. Only that what is, is.

As I look back even briefly, it appears each week has unfolded in the journal like the Boy Who Cried Wolf. Who could think dying could be so drawn out? Who could know someone would live so well with dying? How many times can one person go around the roller coaster experiencing the same ups and downs and loops?

I know I have more to be thankful for than not as we enter a new year, 2012, together tonight. A year ago I could not have anticipated his joining me for the coming turn of this calendar year. I don’t need to review the last year, as most of it is written down in detail I also could not have predicted. I have carved emotions deeper into my being, earning the new creases I see appear before me in the mirror. Some from smiles, some from tears. All from love.


3 replies
  1. Susan Warren
    Susan Warren says:

    I am sending you my love and support dear friend. I know that Dave is so blessed to have your love and care. Please take care of my best friend too – you are so special to me.

  2. Susan Warren
    Susan Warren says:

    Also – set the camera on a tripod and get in these family pictures. It is important that you are captured in the family moment too.

    • joan
      joan says:

      Thank you my friend. You should know by now I never have liked being on the picture side! Really, though we have so few photos of Dave, Leah and I together it is pitiful. If I could do one thing over it would be having done tripod set-ups. These days, well. I guess there is no excuse. (There are some photos with me in the extended family; I just haven’t posted.)


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