When I first became a patient of this hospice program, one of the best things about it was my nurse, Lauren, whose twice weekly scheduled visits were a chance to talk about all kinds of things, way beyond the routine taking of vital signs. Last month, Lauren was out on sick leave and other nurses started coming instead. At first, no one even told me that she was sick, and I wondered why I no longer got to see her. Even when she got back from sick leave, she hasn't been making home visits, and I only occasionally got to talk to her on the phone.
On Sunday morning, I woke up in a really bad mood, feeling very hopeless and alone, partially manifested as generalized physical pain, and put in a call to hospice. On weekends and nights, it's picked up by an answering service, and is relayed to whichever hospice nurse is on call, and I was very pleased that when the phone rang a few minutes later, it was Lauren. I heard real concern in her voice, and she listened to me as I tried to articulate and explain the complicated feelings I was experiencing. I have been in so much physical and emotional pain, as I get weaker and weaker, but somehow my body just hangs on. Lauren explained to me that many people with my disease, by the time they reach the degree of diminished lung function that I have, the rest of their bodies are so deteriorated that they slip into a coma, and they don't suffer, but because my heart is so strong this hasn't happened to me. This follows my pattern of being atypical over so many years, so it's not surprising that it is continuing.
Lauren's own way to conceptualize this, with references to god, who determines when people die, doesn't work for me, and she acknowledges that it doesn't, just as I accept that it does for her. I don't know why I'm still alive--but here I am. Lauren is one of the few people in hospice who seems willing to hear my pain without responding with platitudes, which I don't find at all helpful (Marie, the chaplain, is another person who is open to these complexities). Our conversation came to no conclusions, but just gave me the opportunity to express my pain and confusion, knowing that Lauren could accept my feelings as real and valid.
Marty, of course, has been trying to help me so much, but when I talk about wanting to die, and death being better than this sort of half-aliveness, that's so hard for him to hear. We both wish that we had met much sooner when we could have had so many more good times, and that there's a deep irony in finding the person each of us wants to spend the rest of our life with, when the rest of my life is so finite. That's not usually what is meant--saying "I want to spend the rest of my life with you" usually means an unknown (but long) time!
Another thing I told Lauren was that I'd barely been eating, and she said that I shouldn't let anyone tell me that I should eat, but only eat when I felt hungry, which I told her was what I had been doing. The whole conversation somehow reassured me, and made a dramatic shift in my mood. I felt bad that I had waked Marty up at about seven because I was feeling so miserable, but after talking to Lauren I was much calmer, and was able to tell Marty how much I appreciated all his care and concern, even when I was saying to him--as I had over the past few days--that he should just leave me alone, and was pushing him away when of course that wasn't what I wanted at all. He is so amazing thoughtful and sweet. Just one example--when he and Donna were cleaning up on Friday night after the Hannukah party, he came out with two boxes and told us that he had gifts for us but was sorry that he hadn't gotten to wrap them. Mine was in a Junior's cheesecake box, and I said glibly that I was sure it wasn't a Junior's cheesecake, but in fact that's exactly what it was. He had gotten me one a few months ago (maybe for my birthday, but I can't exactly remember); to us New Yorkers, Junior's is the holy grail of cheesecake (www.juniorscheesecake.com)! Donna's present was a continuation of his tradition with her of an unusual ornament for her Christmas tree, in this case a lovely little penguin from a museum shop. So in the midst of his feeling so overwhelmed he was thinking of making each of us happy. His friendship with Donna is longstanding and one that I'm glad he has.
I have actually been eating a bit more the last few days--still not normal meals, but more than I have been eating, and I've been able to eat some cheesecake, although it's so rich that I want only tiny slices. Even when I feel hungry, I've been thinking carefully about what I want to eat, as I don't want to get back into having stomach aches and nausea. Marty asked me yesterday if I wanted a reheated latke, but I told him my stomach wasn't ready yet. But I may want one or two for dinner tonight (I asked him yesterday to save some).
I had told Lauren how much I missed seeing her, and she said that she was hoping to stop in, just to say hello, some time before Christmas, which will be great. To me, Lauren epitomizes what a hospice nurse should be--one who accepts the fact that each of her patients, at some unknown point in the reasonably near future, is going to die, and who interacts with each of her patients with that shared knowledge. Honesty is so important--and in our death-denying society, hospice is one of the few places where people should be able to talk about death, yet even in hospice I find some of the nurses use platitudes like "you'll feel better tomorrow," which I don't find helpful at all.
I'm really not scared of dying--what scares me is lingering for an extended time in this state where the simplest things become so complicated and so exhausting. My mind still works for "big" things, like the letter to the Globe, but for "little" things, like keeping track of bills and other paperwork, it doesn't work at all, and Marty is trying so hard to straighten it out. I keep losing and misplacing things, which makes me feel so frustrated and so helpless.
But at least I now feel less agitated and less desperate, and Marty says he sees the dramatic shift since my talk with Lauren. Objectively, nothing has changed, but since I feel so different, clearly something has.