Change is in the Air

Saturday, December 17, 2011

We started a private Facebook page for the extended family to stay in touch and for me to post some updates about Dave’s health. It’s nice because most of us use Facebook including the grandchildren. We don’t even have to be “friends” to send messages this way!

It’s a funny place to share at times. But here I can provide one message so everyone accesses the same message. Responds are also shared equally. Social media has changed the way people communicate.

Here is what has transpired this week (post to our Facebook group on Thursday):

Checking in about Dad/Grandpa/Dave’s health… Yesterday the nurse came for her scheduled visit. She noted that there are less sounds heard in parts of his left lung. The right is the same diminished sounds as he’s had all along; the left side is new. There is still good air flow in the upper and lower lobes, difference noted particularly on the posterior side.

What does this means? Changes are coming. She took the opportunity to remind us that this is a progressing illness. He will not survive this cancer. I think I for one get lulled into a sense of the new normal, keeping the outcome at arm’s length. Jeana brought us back to our reality.

Her caution is that we don’t know how this story will play out. He may continue a very slow decline until sleep and a comatose state occurs over a month or two (or more?), or he may take a sudden turn and there be a rapid decline with loss of life in as short as a week. We don’t know and there are not reliable predictors.

I’ve held a belief that when we have to call the nurse for increased visits and a need for the bath aid, etc then I’d have a warning for our presumed vigilance. She offered that we might call in all sorts of requests for support and then his body change so quickly that we require the higher level of support for only a week. Again, this predictor is a false sense of security. I know I’ve witnessed this rapid change in patients several times during my service as a hospice volunteer.

I do know that I see a gray area between Dave’s awake and asleep. He’s thinking and quiet; or, more disturbingly, not thinking at times. He has the strongest will of any person I’ve known. He requested two full waffles for dinner this week (rather than 1-1/2), trying to add in precious calories. I know an extra 100 calories at best aren’t going to help. Most of the time his mind is clear and on point when awake; often better than mine! He is still doing most self care, but I am needing to assist him more, now even with some moving around. His frailty is showing.

There are noticeable physical and mental changes. It’s as important for you to get a reality check as it is for me. I’m not suggesting to run-here-and-sit-by-the-bedside. I’m just sharing the observations and conversation given to us.

As usual, call or drop by as you desire.

3:30 pm

It’s late in the afternoon, an unusual time for me to be writing. I have just returned from walking a few houses down to the stand of mailboxes to check for pills and packages. The air is cool. The blue sky hides the fact it is a week before Christmas in the Northwest. It even looks like the neighbors have been mowing, I noted. I find four more bottles of meds for Dave’s week. Yes, the holiday package from mom arrived. I hope I can muster time for getting a few things for Leah this week. I hope she brings us her Charlie Brown Christmas tree for the bedroom mantle. It seems appropriate.

I took a long, hard nap this afternoon. I’ve got a cup of coffee; half- decaf so I won’t be awake all night. Dave is sleeping, finally. He’s had a couple of days of discomfort. Not pain so much, just not getting comfortable.

It might as well be a new day. I’m writing; he’s sleeping. I wrote all morning without a conclusion. I’m trying to sort through the angst of Christmas and December. I started that reflection a couple of weeks ago. It may need another year to formulate. I am, after all, still living with Dave this Christmas. Perhaps I can only anticipate the emptiness that death might bring. Maybe next year I’ll rewrite this topic from a different perspective.

He is tossing and turning between sleep. His form of tossing and turning is actually sitting up. We’ve been propping more pillows to behave like a hospital bed, lifting his feet or head, trying to change the angle for alleviating the pressure points, and entice his blood to circulate to every extremity. His right foot is constantly swollen now, sometimes warm, often cool and purplish. We are too stubborn, so far, to give up the sense of our room (normalcy) and the comfy tempur-pedic bed. I wonder if we will. I think the bed is a symbol of dignity.

I am afraid that we have entered into a new phase of illness.

Everything requires more energy now. Energy, as in effort. Getting up. Getting to the toilet. He has asked for my help. Getting his legs in bed and propped onto the pillows. Untangling from the blankets. It’s hot, he sweats. He’s cold. There is no fat, nor much muscle, to keep him warm. Can I find his robe? He’ll wear it when he sits. Can I rub his back some more? Aahh. He is a stringy mass of sinew and bones. There is not much to rub. I am here. Here I am.

New life appeared last night. She came in a bundle of purple velvet, Hello Kitty socks and pastel hearts. Two-and-a-half months old Sayler met her Great Grandpa, brought by proud grandparents Denise and Chuck. Of course I was happy to hold her! I even sneaked in a song and gentle bouncing to “trot to town.” She is beautiful and clearly adored. She is like a new, shiny penny as Dave would say. New life, he repeated to me today. We both know the stark contrast. It doesn’t have to be said.

I think I have given myself the permission needed to do only the bare necessities. Take care of myself. Take care of Dave. Food. Shelter. People. I, too, require more energy for everything I do. I am in maintenance mode and that’s finally OK. I remember that when I worked in an office really very little is accomplished in the last couple of weeks of December anyway. Most  “it” doesn’t matter too much right now. I have my priority. I have lessened the demands on myself. This is easy to say, more difficult to actually believe and practice. I am feeling peaceful at least for the moment.

I try not to think about the changes. I try not to consider what major dates are upon us. Christmas. New Year’s. My Birthday. I don’t want any suffering to be strung out over time. I want to get past all these milestones. I wonder what keeps him going. What is important to him? Is there any unfinished business, so to speak? Can anyone ever be ready? What makes him peaceful for the moment?

We increased his oxygen today. He added another long acting pain pill to his daily repertoire. We are taking each day as it comes the best we know how.

6 replies
  1. Christi
    Christi says:

    Reading your post about changes reminds me of caring for my father who died of Hodgkins Lymphoma in the winter of 2008. That time with him holds such precious memories, harrowing and sweet, all at once.

    I recognize your need to simplify and take care of yourself through this important time. Taste it, smell it, feel it, cherish it.

    • joan
      joan says:

      Thank you, Christi. I’m sorry to hear about your father. We managed to get Dave through Hodgkin’s 23 years ago. From that experience, and even more today, we certainly try to savor the moments as they come.

  2. Ellane Chandler
    Ellane Chandler says:

    I love the picture of Denise and the little bundle Sayler and her awesome Great Grandfather. What a smile! Denise has one of the best jobs ever – Grandmother 🙂 I hope Solstice is bringing whatever you need to carry on, and my heart goes out to all of you with Christmas greetings and love always.


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