Sunday, July 24, 2011

It seems like a lifetime since I’d come home from my Sunday walk with Anne to find breakfast ready to be plated. There are no cooked eggs and grits awaiting me today. It has only been six months since Dave was knocked down by the cancer treatment and sentenced to retirement. Six months of change, six months of different, six months of a new normal. I eat my Quaker Oats granola quickly and without ceremony these days. Oats are good for the heart aren’t they?

My heart breaks. I’ve been sorting through photos for personal projects and to assure I get the dates and stories recorded. I see a more robust and lively Dave. Baseball glove in hand. Singing with guitar or mic or bass in hand. Tuxedo-wearing and weddings Dave. A boy and his dog. Father. Young, unbearded. Middle aged, new father. Black hair and more of it. Teacher. Husband. Co-parent. Through sickness and in health. The contrast is stark to the man I see lying in bed today. Yes, his eyes and his words tell me it is him, but his thin body reveals a sick man. Some days are noticeably more difficult than others. There is additional effort required to lift his legs back into bed. Sitting up is more of a lean.

How long does this go on?

On Thursday last week when Leah arrived I took her to dinner. It was really I who needed to go out to dinner. We haven’t done that in a long while. Until we did, I didn’t realize how important for us to connect outside of the house might be. On Mondays we separate ourselves from Dave to hold The Real Housewives TV night, an escape for us both from actual reality. This time is for denial and laundry. It is our ritual that began before the diagnosis. Our time during dinner out was to check in with each other. I am so glad she is an adult, that I can have an adult conversation even though she is and always will be our child. I like that our feelings can be open and honest in grown-up ways.

How long does this go on?

The happiness gurus would have you believe that being present in the moment –experiencing, feeling, acknowledging and breathing the pain, sorrow, grief, joy, laughter and gratitude of ordinary daily life – is all we need for bliss. I agree, mostly. Being “present,” i.e., specifically taking in the now rather than living in the past or always toward the future, can be useful. But I don’t want to be present all the time. I’m not sure I want this present to continue. I am tired in this present. There are things I want to be doing that are hanging suspended, out of reach, while my attention is rightfully on caring for Dave. Can’t I just deny this for a while? Or can’t I just get on with life? OK, so this is life. This is my life, now.

It’s hard to be grateful to be at an end of life. Yes, the time is precious. Just because we are doing everything “right” with hospice, friends, family, support, memory work, care and time, this doesn’t make it easy, much less comfortable. We know how the story will end, is it possible to skip some pages? I have fears. Fear that Dave will linger in this limbo for a long time. (I doubt seriously that Dave would call his life as “in limbo.” He is still in “intellectual curiosity” last I checked.) And yet I fear that he will suddenly turn for the worse and die before I am prepared. But I am prepared, aren’t I?

Don’t misread me, please. I have no desire to hasten Dave’s death. I just don’t like being here sometimes. There is not much hope in this location. Hope is the driving motivator for life in the most dire of situations. Hope is the light. My hope lies in knowing I can get through this part of my life. I go through; Dave goes. It just doesn’t seem fair.

How long does this go on?

I notice there has been a recent change in my label. I identify as the “caregiver” now. I am still a wife, mother, friend and all the other roles, but I am predominately a caregiver. To me, this means that I have objectified my relationship for the time being. It provides me a little distance while still being tender. No judgment here, just another sense of being present. I am.

Talking about wanting to finish with this moment is scary to say aloud, but I must. I know that many others before me have thought the same. When does it end? There are thousands of caregivers with ill loved ones in a holding pattern or slowly declining. You don’t want them to go, but there is an inevitable conclusion. I want and don’t want to go onward at the same time, but just can’t. I won’t.

Can’t I just have a few minutes back the way it was before we go forward? Of course; the photos and stories… I should have known.

* * * * *

I’ve had many people ask me about Lucky dog. Lucky is still farting around the house (well, he does!!). It is definitely difficult for him to get upstairs, but we all seek a little more time, please. We assess his health on a daily basis.

4 replies
  1. Susan @ Grief Heals
    Susan @ Grief Heals says:

    Think of you often. The uncertainty of limbo is probably the hardest part of caring for someone. Add the exhaustion and the wish this weren’t happening makes it that much harder. It’s just impossible to be present every moment. Sounds good in a guru sort of way but practically it’s impossible for us mere mortals. Glad you’re getting a few precious breaks with Leah.

  2. joan
    joan says:

    Hi Susan! Your words are always a helpful reminded that I am not alone and quite “normal.” It’s nice to hear from you.

  3. Carole Ann
    Carole Ann says:

    I am on the other side of limbo…my son died 10 years ago at the age of 24…he was sick for two years before he died. The grieving takes many forms and changes with the years…I miss my first two years (denial) because I was functioning well and felt happiness…once this novacaine wore off the work really began. To me the pain was like a very hot fire and I just couldn’t get too close because I feared it would kill me…so I distracted myself when I got home from work, with gambling on line. When my 40lK money was gone (which took 4 years) I felt it was safer to get closer to the fire…problem was..the fire was still just as hot. In my 8th year I could no longer distract myself and faced the sadness, the pain, the never-ending “missing”. There are all kinds of limbo and we all handle grief in our own way….I wish I had faced it instead of trying to run from it though but it took years before I could do this.

    • joan
      joan says:

      Hi Carole Ann.
      First, of course, I am saddened to hear of your loss and the difficulty of your grief over the years. As a mother, the thought of my child not outliving me seems unbearable.
      I am also heartened to hear that you are at least on “the other side of limbo” now. It is hopeful, and importantly acknowledges that we must feel our grief sooner or later in order to reclaim a sense of well-being. You may always miss your son, so in that respect the grief will always be with you, but I wish for you peace and memories that comfort rather than hurt.
      Often, many years later after a death there is still a story to tell. I invite you to join others writing through loss in the Storybooks for Healing journal community to discover and share what you’ve experienced.


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