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View Diary: My fiancee, now in hospice (47 comments)

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  •  Thank you. (2+ / 0-)
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    peregrine kate, samddobermann

    Sometimes the days are more challenging. Sometimes they're less so.

    Today, she told the hospice staff that she was "tired of lying in bed all day." She had them adjust the bed so she could sit fully upright most of the day, and I swear she's convinced them to have her try some light physical therapy tomorrow. Despite having a diastolic blood pressure in the 40s. Me? I feel like I'm going to pass out if mine hits 60. So we'll see how that goes.

    Family members have sent her like a half-dozen vases of flowers, and she wanted to talk to me when I got there about how and where she'll use the empty vases to decorate my apartment when she gets out of hospice, and I have to work double-hard not to cry. I cannot afford to hope for the impossible. But I damn well helped figure out where those vases would go...

    She's been getting a little annoyed with herself because she hasn't been able to read. She still very much can read -- it isn't a problem with hepatic encephalopathy or anything -- but focusing very long on the little words on the white pages allows the fatigue (see that blood pressure above; she's earned some fatigue!) and morphine to get the better of her, and makes her fall asleep. So she's been stuck on the same page in her novel all week. And that, she declared this evening, was her most serious complaint right now. Hey, I'm not going to argue with that!

    And I've always told her, even waaaay before this, that if she ever has a problem I can solve, all she has to do is ask, and I'll find a way to make it better. So I told her I'd read to her. She laughed, which meant I already knew I'd made the right choice. I read a whole chapter out of her romance novel (Jen: "It is NOT a romance novel!"). She smiled, and thanked me, and gave me a kiss, and told me she'd sleep well tonight.

    Some days are bad, and that joy takes a lot of effort to find. Today? Today's joy was easy.

    "All opinions are not equal. Some are a very great deal more robust, sophisticated and well supported in logic and argument than others." -Douglas Adams

    by Serpents Choice on Sat Mar 23, 2013 at 08:35:07 PM PDT

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    •  I was wondering about how you yourself (0+ / 0-)

      have enough "free" time, assuming you're working a day job. Yet another challenging aspect, finding enough time now when every moment is precious. Sounds like you're doing everything you can.

      I am not an expert in this area beyond my own experience, so please take this with a large block of salt. My guess is that her optimism and hope, her own joie de vivre, are what keep her going now. Once she comes to understand instead that her prospects are impossible, the end will likely be very fast.

      Why would she want to do that, though, as long as she can hold out? She has many reasons now to keep her here, after so long without.

      I don't know how she is managing her visitors; is it through you? It's a tough balance, having people come to visit or come to say good bye. In the best of cases, people manage to do both. It might be impossible for her children to negotiate this, since they are so young, but I hope they have a chance to try.

      Being read aloud to is one of my favorite, favorite things, too. It's a way of offering comfort and security, above and beyond the act of reading itself. That is a brilliant offer you made.

      It is such a hard walk you are on right now with her. I am thinking of you both often every day.

      Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Sun Mar 24, 2013 at 09:35:34 AM PDT

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      •  I work, yes (3+ / 0-)

        Fortunately, I live a mile from my workplace. And her hospice center is 10 minutes away. And I have an hour lunch. So between evenings, and sometimes the quick visit on lunch, I can be there quite a bit. I've also taken a few days off here and there as necessary. I'm fortunate in that I've got almost 10 years into a major multinational company, so I do have that time to take.

        She largely manages her own visitors' schedule. The late afternoon/early-evening window is usually for her kids. I come shortly before they go, and stay with her until she's ready to sleep. Other relatives have to make do with midday times where she may or may not be awake. I do say largely. Her mother has been with her 24/7 since Monday. So far, she's not caused significant problems, but I also haven't pushed on the issues that she objects to (which are several) If things are still going this well this weekend, I intend to spend at least one night there with her, and, well ... we'll see.

        It may well be that her force of will is what's keeping her going. It certainly is much of what kept her going through the low points of the last 20 years. And I'm pretty sure it's all that keeps her adoptive father alive, who has had a laundry list of medical crises (and was given a 10% chance to last a week ... three years ago). I'm not sure how long that can hold out against biological realities, but I know if there's anyone with the spirit and determination to find it out, it's her.

        "All opinions are not equal. Some are a very great deal more robust, sophisticated and well supported in logic and argument than others." -Douglas Adams

        by Serpents Choice on Sun Mar 24, 2013 at 02:42:26 PM PDT

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        •  You already know this, so I guess I'm writing (1+ / 0-)
          Recommended by:
          DarkHawk98

          this to remind myself.
          To love and to be loved to this extent--to cherish each other as you do--is one of life's highest blessings. How fortunate you each are to have had this time together. It will never be long enough, and yet it might not have happened at all. In and of itself, it brings healing to the spirit if not to the body.
          Thank you for sharing some of your moments together. Sending tender thoughts to you both.

          Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

          by peregrine kate on Sun Mar 24, 2013 at 08:09:04 PM PDT

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