The night before last (Saturday night) I began to write this post with
Laura’s condition no longer seems as dire now as I felt several days ago when I wrote last. She has a remarkable ability to move about the house, sometimes rather quickly with her walker, considering that she is consuming not much more than 30 ounces of fluids per day — maybe 200 calories — if she’s lucky and keeps this small amount down. She is now very gaunt and I wonder how long she can continue what seems like wasting away. But despite the continued weight loss, tiny appetite, and slow weakening, I feel like she will continue to hang on for a while — for the better, I hope.
I was then going to write another long piece about the mental aspect of dying, specifically how I was surprised and upset to see Laura losing touch. A senility of sorts was setting in: a lack of ability to keep track of time, a proclivity to wander down incongruous tangents. It is so upsetting because it becomes apparent that the love of my life is not going to leave me soon, but has already begun.
I am not consoled by the thought that Laura suffers less as a result of her lack of awareness or her apparent loss of emotions. Maybe it’s true, but I think it’s equally conceivable that she might be deeply troubled by her losses (I mean deeply in the sense of a fundamental conscious awareness) and that it could be even more painful because she can’t articulate, even in her mind, what is happening. It made me think of the name of this blog — how the play on words was meant to suggest a balanced approach to our lives’ foremost challenge — that we could try to leave the unnecessary troubles and struggles behind and focus on a few key concerns, namely family and Laura’s health, in a way that we hoped would maximize quality of life during the short time that she has. What I didn’t consider was how “loose strife” might be thought of as “letting go” in a slow and unknowing way — as I now see Laura.
Anyway, that’s about where I was in my thoughts and writing when I left the computer late last night, too tired to continue to type. And when I walked into our bedroom in the dark, Laura immediately stirred as though she was quietly, restlessly waiting for me to come in. I found her awake. She sat up, lay down, got up, and was clearly agitated. She was almost entirely unintelligible and when I could understand her mumbled whispers it was wildly incoherent. She stared into the darkness across the room and asked, “who is that there?” There were words associated with guests, snow, play dates, art projects, books, family, and many others. She could hardly walk with her walker. When I took her to the bathroom, I stupidly waited for her in the doorway and as she stood in front of the toilet I watched her fall like a tree backwards, smacking the back of her head. She wept in pain, although she was not seriously hurt. I sat by her for an hour as she lay in bed picking at the blankets or sat on the side of the bed and stared, squeezing my hands tightly. When she sleeps it is fitful and her eyes remain half open; her breathing is sometimes punctuated by gasps and other times she talks in the dark.
During the day today it has been the same — a little worse at times. Somebody sat with her almost all day. A hospice nurse came and adjusted medication. We talked about logistics were she to die. The nurse said that she couldn’t predict how long Laura would survive because Laura was young, so she was fighting it and working through so much in her mind, as any of us would naturally do. The last 24 hours were not the slow, unknowing, tranquil “loose strife” that I had perceived before.
And so Laura’s condition now seems more dire again. She finally fell into a more sound sleep early in the evening, but as I write now, well after midnight, she fidgets frequently, coughs loudly, and whispers.
8 responses so far ↓
1 Mark Taggart // Sep 29, 2008 at 4:39 am
I couldn’t sleep tonight, so it seemed a little coincidental that this post was waiting when I went online. It’s easy to say “the only constant is change”… much harder to live with that fact. Our bodies are so absurdly frail– a good friend who is an occupational therapist frequently shares stories of patients with the most minor damage, a slight tear of tissue, even a minor blow to a major location… all of whom find themselves with a brain (& therefore a persona) that refuses to cooperate as expected. Hearing that she is fighting so hard to keep the pieces together speaks to her strength, and though I’m terribly sad to hear that her illness is headed in this direction, I smile a bit to hear the nurse tell you that Laura’s still in there swinging. I’m sure that when you hold her hands & return that grip, it must mean everything to her.
2 Nicole // Sep 29, 2008 at 9:03 am
Dave, I am so sorry. Thinking of you all daily.
3 Angie // Sep 29, 2008 at 1:53 pm
David~
I feel so deeply for you all, I want to scoop up your whole family into a big cradle hug under a warm autumn sun. I admire your strength and wit through all this, and writing is truly a wonderful mechanism for expression and articulating what can sometimes be only felt. If you ever need us to be with the girls, please let us know. We are going to be moving out of ashfield within the month and will miss the frequency of visits, but will keep in touch. We’re only moving to northampton (or easthampton, still undecided). Anyway, I really just wanted to send some love to your family and the girls especially. much peace.
4 Enten & Mary // Sep 29, 2008 at 2:37 pm
David, you four are never far from our thoughts. This latest, while not unexpected, really touches us deeply, so we wanted to be sure to let you know how much we think of you and lift you up. Please give our greetings to Laura and the girls… we wish for all of you much love and peace, and precious moments yet (like many we were able to share).
Enten & Mary
5 Suzy // Sep 29, 2008 at 7:24 pm
I’m thinking about you all. Please let me know if there is anything you need. David, I admire your strength. My love goes out to all of you and your extended families.
Suzy
6 katrin // Sep 29, 2008 at 11:22 pm
David, Your courage, compassion, and eloquence are extraordinary. This weekend I was cleaning out piles of stuff stashed into drawers and long forgotten, and found both a postcard from Laura (and you) from Bali, and a photo of Laura with Cristina, Hilary, and me along with a very little Lily and was remembering the time we shared. I hope you are able to find some peace and solace in the memories of good times both great and small as well. I’m holding you, Laura, Lily, and Naomi close to my heart and in my prayers. Peace & love, Katrin
7 Kay and Ed // Sep 29, 2008 at 11:29 pm
David,
I struggle to put into words anything that would be significant to you at this time. But I want you to know that our whole family thinks of your family so much . Our kids especially identify with what your sweet little girls have been and will be facing. We’ll continue to pray that God gives you the strength you need each day as it sounds like sleep doesn’t happen much. We love you all.
8 Mary Ann Payne // Sep 30, 2008 at 2:43 pm
David, I was just watching a brilliantly red leaf fall gently to the ground. I thought of you and Laura. May her leaving be as gentle, with her hand in yours.
Mary Ann