Tuesday, May 19, 2009


Hospice Care

Definition: A model of care that focuses on relieving symptoms and supporting patients with a life expectancy of six months or less. Hospice involves an interdisciplinary approach to provide medical care, pain management and emotional and spiritual support. The emphasis is on comfort, not curing. It can be provided in the patients home as well as freestanding hospice facilities, hospitals, nursing homes and other long-term care facilities.

I got the call early Sunday morning. To come. Come when we could. The end is very near. Hospice has been called, Dad goes home tomorrow. It was his wish to be at home. I only wish somehow that he knew what was happening. I don't even know if that is the right thing to wish. The one perpetually in control, directing all things (my Dad, not God) is now in the most opposite of positions. Things are changing so quickly inside him. So many struggles, risks, battles lost, losing battles. Failing systems... failing understanding.

We drove 5 hours, spent 3. Dad slept for over 2, then our visit. Through his difficult speech he expressed frustration that he hadn't been awake for the first part of our visit. He hadn't slept in over 2 days. I was glad to let him rest, to just be with him. But like him, when he woke and his bright blue eyes found me there, when his face lit like a light bulb, I did have regret. I have it now.

I did not say "goodbye". I could not; not because I couldn't bring myself to due to my own pain. I don't want to cause him pain. I don't think he is now able to understand, though I'm told it's been explained to him, what is happening to him. That his mind and body are both failing. That he has had another stroke. That the pneumonia is not clearing. That his throat function is nonfunctioning, and that the months of struggling to eat, spending 4 hours to find a way to chew and swallow a tiny meal, is a cake walk compared to now. That his stroke risk and aspiration risk and choking risk and pneumonia and heart risk coincide with the, I'm told, inevitable shutting down of his systems, with his daily increasing dementia, which in conjunction daily decreases his ability to speak, or to swallow saliva, or ice chips. That his throat is nearly closed due to collagen break down from his leukemia treatment 20 years ago.
He is the strongest person I know, in so many ways. A less strong person would not have survived the amazing life he's had, would not have survived the past year, the past week. The doctors have said that the only reason he is able to speak, to form sentences, to converse and relate to us at all is due the fact that his brain is so developed, so many neural connections strong, so very brilliant for so very very many years.

I am certainly walking a fine line at every moment, in denial most times-- I must be, and living in the moment the rest of the time. Is it a sign of maturity, or a free and clear blessing that I am able to exist this way? That I am not superimposing past losses, fears, fear of loss at this time-- am able to think somewhat clearly, and yet still not feel a desperate need to over analyze and find a way out of this, to control it? I feel blessed. I don't feel mature. I do feel old. I am suddenly very tired. I break down more and more. I find myself looking for distractions, a few minutes here, a few there.

Thank you. Thank you. For being there. A few minutes here. A few there.


  1. Crossing the threshold between life and death is surely one of life's great mysteries. In the end, it is love that keeps our connections strong. Love, love love our moments together. Love the gift of separation, for it strengthens us. When the time comes, you will have a great soul on the other side, guiding and protecting you. We never truly lose the ones we love, the connection is ALWAYS there. Blessings on you and yours during this transition. Break down, there are people to watch over you...

  2. Thanks, sweetie, for your words. Blessings...

  3. i am so sorry to be reading these words of your sadness and your father's struggle.
    you are in my thoughts and in my heart.

    if there is anything at all that i can do, please let me know.
    if you want to come and stay here, our door is wide open.

    xo i love you, girl.

  4. Thanks sweetie-- I love you, too...

    I really do need to see you. I just don't know what each day is bringing me right now (more than usual, that is).

    I means a lot to have you there.


  5. Dear Circe,

    I am so sorry for what you and yours are facing. There really aren't words for it, I know. It's such a helpless-feeling place. You, your father, and your family are in my prayers and many thoughts.

    I'm reminded of those angels. A candle has been lit for you all.

    A great many hugs are being sent, too,

  6. Thank you, Amanda, thank you. For thoughts, prayers, candles, understanding.


  7. I cannot, in my darkest imaginings, begin to guess what you must be going through. I cannot allow myself to go there.
    Every heartfelt blessing I send to you. You are in my thoughts.


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