So I'm here in the living room with David. Joanne is here too, but since she has work tomorrow, I'm the point person, and she's my backup. It's a good system, at least one of us gets a little sleep, and noone gets burnt out. So far there have been 5 or 6 people who've spent the night in this way, and we're getting better at it. Last night two friends where here, Susan and Chris, and they took turns being point person in addition to having me as back up. They managed fine, gave meds in the night, and then at 4 when David said "I really have to go!!" they rang the bell and I came downstairs to help. I had had 6 solid hrs of sleep.
We worked together to get David out of bed and onto the commode next to the bed. He isn't able to stand on his own now, and so needs full b0dy holding and support. Chris was wonderful moving David. When I showed him how to put one foot between David's feet and hold him close he said, "Oh, the tango, I can do that!" So Chris did a very slow tango with David and managed to move him the 12 inches need to line him up with the commmode. One person in front and one behind, we helped him to sit down. BTW, I found the commode seat is very sharp!! One of our support people taped a small folded chux pad over the edge, and that makes it much safer. I scraped David's back one day "helping" him sit, and that really sucked. Back to yesterday morning, David sat for a bit, us trying the tricks we know to help someone pee; water sounds, fingers in water, a psss sound, all to no avail. So back to bed for all of us.
At 7am I called the on-call weekend hospice nurse and asked about a catheter for David. At that point he had not peed since 11 am the previous day, despite repeated attempts. She agreed and said she'd be here at 9. Karin had already arrived and I was getting ready for work. The nurse checked in with us, told David what she was here to do, began undressing him in preparation for the catheter, and he responded by peeing a large amount of light colored, totally normal looking urine!! The nurse joked that this was his way of being clear he didn't want a catheter!! I'll admit I was glad for a reason not to have to change a whole wet bed and person, and to leave David in capable hands. As I was about to leave, I heard the nurse say tenderly "You're welcome, David." She told me later that as soon as she had gotten all the wet clothes off, and dry ones on, he turned to her, opened his eyes and said clearly "Thankyou."
Today there is a plan for Lucretia to visit with the new baby, along with Minh, Oai, and probably Tyler, Seth, Anna, Ada, etc. I talked with the nurse about how to give David the best opportunity to be alert. We agreed to decrease his meds a bit, essentially waiting till he clearly shows he needs them before giving the next dose, as opposed to giving it on a schedule. Also, come morning, to give smaller amounts and see if they are adequate. David is on liquid meds at this point, so they act pretty quickly. It's an experiment.
All that as a preface to the morning that we're now in. Joanne and I decided last night that it made sense to give the full pain med, and a 1/2 dose of the anti-anxiety med that David has normally been taking, as I have wondered if that lasts longer as a sedative. Joanne is also a nurse and said it's usually given every 4 hrs and she didnt' think it had lingering effects, but we're erring on the side of alertness just in case. David has begun to have very wet sounding breathing, and some blood in his mouth again the past few days. He's coughing quite a bit I think in response to the gunk in his throat.
It's 4:30 now, pitch black out, a few lights on inside. I turned on James Taylor about an hour ago when I was feeling lonely. The cat is asleep at the end of my little bed. David is a few feet away, bed tilted up high to keep the liquid down in his lungs, and he's gurgling away, sounding pretty uncomfortable. The little hospice end of life book says that gurgling isn't necessarily uncomfortable, so I'm trying to stay relaxed about what this is like for him.
The past few days I've had the sort of shocking realization that he's not coming back. You know, there's a way that I could almost believe that this isn't really David. David is away somewhere, and one day, he'll come home, his vibrant, loving self. The first time it happened I was at his folks house and saw a photo of him a few years ago. There he was smiling and bright, and it hit me, I'm never going to see that David again. He's been such a source of healing, connection, and support the past 2 1/2 years and now with this hard thing, he's not here to help! Funny, wierd, impossible, and I notice sometimes I think he should be here, or I wish he was. Now who's having a hard time letting go?!!
Anyway, I slept a little between 10 and 2, and have been awake since. I rested till 3, got up for some cereal, repositioned David a bit to see if I could help him be more comfortable. He's often hot and responds best to just a flannel sheet over his midsection, feet and chest exposed. Finally at 4 I figured I'd write, since I don't seem to be sleeping. I'm feeling a little raw, and like my brain isn't working very well. Yesterday at work, I could do most things, but when it came to being patient and having perseverance with a customer who was looking for a wedding outfit and didnt' like the 30 or so things I'd brought so far, I asked a coworker to step in because I could feel that I didnt' have any more extra resources or creativity available. It's great to be in a situation where everyone understands that this may happen for me, and is willing to step in. At my work, we have this kind of supportive commitment to each other, and it's especially helpful at times like this.
David's approaching death is intense for everyone so all the relationships are being challenged. I am happy to notice that I am staying pretty clear. I am in an amazing place in my life right now. After many years of internal work to get "healthy and happy", having not started my life in situations I would label that way, I am very glad to be having the internal experience that is here now. And I'm indebted to friends who remind me when I forget how to reconnect with my essential self, and be here. All that work is definitely showing itself during this time. I have had a few difficult conversations with family members, and each time, I notice I'm showing up pretty fully. Often I pray before and during, to be the open channel, and I'm thrilled that I can mostly stay with myself, be kind to the other and at the same time clear, and breathe and be, in the midst of the challenges. I can feel the strength building in me, as I enter these conversations with an open heart, courage, and love for self and other, not shrinking away out of fear.
Byron Katie says "Everything happens for us, not to us." I can find that here. As mind-blowing as that can sometimes seem, I'm finding that it's true.
One last thought, yesterday was the first day David stayed in bed all day. I feel sad when I write that. No going back, you know? I miss him so much.
Tara
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