Guesses, plateaus, and cravings

Brian here.  Bad news is rough, but no news often feels worse.  I’ve been stressing about Julie, wondering how much longer I’d be able to enjoy her company.  On bad days, I thought she might have two weeks left.  On good days, I thought six weeks was more likely.  But of course, I’ve never been through this before so I don’t give my estimates much credibility.  I imagine a lot of you have been wondering, too.

Last week I asked the hospice nurse for her guess.  These folks deal with the dying day in and day out.  They don’t have any magical insight, but they do have a lot of experience to base their guesses on.  Her guess: somewhere in the two-to-six-week range.

I wrestled with whether to share this with Julie.  On the one hand, I couldn’t see that it would help her.  On the other hand, who has more of a right to know than Julie herself?  We’ve never held anything back before, and I couldn’t see a reason to start now.  Ultimately, it came down to the fact that I wanted to share it with her family and all of you, but I was afraid it would get back to her.  I knew that if she heard it, she should hear it from me.  So I told her.

That turned out to clearly be the right thing to do.  Julie doesn’t see some of the changes in herself that I see, and she didn’t enjoy the idea of carrying on as she is indefinitely.  It looked to her like she was staying in place, and it’s not a great place to be.  The knowledge that the end was coming, that pain and pain pills and sleeping nearly around the clock would cease, that was a relief to her.

On the physical side, Julie’s health seems to go in plateaus.  She’ll take a sudden drop in some aspect or another, and then stay pretty stable for a while.  A few weeks ago she suddenly had problems rolling over in bed.  If she’s was uncomfortable laying on one side, she’d have to get out of bed and get back in in order to lay down on the other side.  I don’t know if this muscular or neurological, but it’s the reality she’s living with.

A few days ago, Julie suddenly became too unsteady to walk unattended.  One day she was OK, the next day she needed help.  She can still walk down the hall, but I have to be at her side or behind her, steadying her as she goes.

Then on Friday I came home after being a way for several hours to find her sitting on the edge of her bed.  She didn’t know how long she’d been there, but it had been a long time.  It seems she’d gotten herself up with the intention of laying down in a more comfortable position, only to discover she couldn’t do it without help.  So instead, she sat on the edge of the bed and waited for me.  I don’t really understand the problem, but it’s hers and it’s real and it’s what we need to deal with.

She sleeps a great deal.  I’d estimate that I see her awake about an hour a day, spread out over four or five short segments.  She pretty much only wakes up when she needs something — a pain pill, a bite to eat, etc.

Speaking of eating, she’s prone to cravings.  A while back she developed a sudden (like instantaneous) craving for Taco Bell.  I picked up food from Taco Bell, figuring that she’d have a bite or two and I’d wind up eating most of it.  But no!  She skipped the tortillas, but ate the insides out of two Burrito Supremes in short order.  If I’d known that was going to happen, I would have ordered something for myself.

Another time it was Kentucky Fried Chicken.  This was less of a success, though, as she reported it wasn’t as good as she remembered it to be.  That may have just been a matter of bad timing though.  3PM may not be the best time to pick up freshly prepared chicken — especially given that the store was vacant of customers except for myself.

Yesterday, it was Krispy Kremes.  She wanted whatever they were currently making, but when I got there they’d finished all their doughnuts some hours earlier.  Left to my own devices, I got her a cream-filled glazed doughnut.  I took it home, where she devoured most of it in about two minutes.  For a woman who’s had next to no appetite, that was a great success.

So you see how her time goes.  Lots of sleeping, occasional declines, and rare moments of cravings satisfied.  And when we’re not discussing the possible need for another pain pill, we talk about the joy we have at being in love.  It’s not a good life compared to what we had, but still, we count ourselves lucky.


6 Responses to “Guesses, plateaus, and cravings”

  1. September 12, 2010 at 11:19 pm

    Thanks for the update, Brian. We have all been wondering, thinking of you, and holding our breath. I’m so glad that even as the end comes near the two of you are holding tight to your love. Please give Julie a hug (or a hand hold if its more comfortable) from me and a kiss from my girls. Tell her Lily is holding tight to her ‘cancer bear’ that she sleeps with every night that she got from one of our walks for Julie. XOXO

  2. 2 Lynnette
    September 13, 2010 at 12:31 am

    We are keeping you both in our thoughts and prayers. It warms my heart how much in love you two are and how you can make that a light in these darker days. I agree with Jenny, give Julie a loving touch from me in whatever way it feels best for her. Have someone give you a hug for us too. I am proud of how you are both holding your chins up even under these circumstances. Much love!

  3. 3 Laura Illige Harvey
    September 13, 2010 at 5:49 am

    Love and hugs to you both. At least with food cravings its something concrete you can do that gives immediate results. The waiting must be so hard. Love you both lots, Laura

  4. 4 kevin
    September 15, 2010 at 12:16 pm

    Thank you Brian, very much. It is good to know that Julie will see the face of Love as she completes this season of her life. But that is something I knew all along.

  5. 5 Dusti
    September 16, 2010 at 1:48 pm

    Dear, dear Brian, Only God knows how much longer we will be blessed with Julie’s presence. There is a special place in heaven for hospice & other caregivers that help those that we love. Brian, thank God that Julie has you. You are a wonderful husband and support for her. Our prayers are with you and Julie. Please give her a little kiss on her forehead for me. Love and prayers, Dusti

  6. 6 margaret Stonich
    September 17, 2010 at 6:54 pm

    I have been in the hospital the last few weeks and just got released today. I was holding my breath as I logged into Julie’s website. Thanks so much Brian for keeping us posted. I thought about Julie a lot and have been praying for you both. I have no idea how you are both coping. Sometimes we are asked to do the impossible.

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