HOSPICE UPDATE

One of Valerie's GREAT-nieces (in both senses of the word).
She was doing a dance for her lovely Great Aunt Val.

We officially entered into hospice care this past Monday (4/22).  I have had many chances to update the blog but have been so pulled between the imense vulnerability of this situation vs. your continued love and participation in this journey with us.  And so many of you contnue to text, email, facebook, etc. to check on us.  So I'm opting for an update.

As so many of you have aptly said, there really aren't words.  There's really no way to describe what this process is like.  I will say that I naively thought that Valerie would sleep peacefully with moments of clarity until she drifted off one last time, never to wake up again.  That is far from the truth.  I'm sure it's different for everyone, but for Valerie, there are many moments of sheer confusion - ex: she asks for an "ice cold drink" - I bring her some tea from the fridge and after her first drink she winces and says "that's really cold!"  After living with Valerie for the past 15 years, moments like these make me smile and say "I'm sorry baby, I must have misunderstood."

It's the confusing moments that seem to cause her distress that are harder to watch - forgetting how to stand back up and wondering why I'm not doing something; or mumbling something incoherent that makes perfect sense to her, but no sense to me.  Those are harder to watch because there's absolutely nothing I can do about it.  The most difficult part of this confusion is that she seems to have forgotten the decision to move to hospice care.  When she woke up Monday morning, it was as if she needed to keep fighting - she wouldn't use a walker or wheelchair even though she's been severely weak and wobbly on her feet - she is confused by the flowers and cards being sent - she doesn't understand fully what's happening.   That is the hardest of all. (I told her they are all belated anniversary gifts - our 15th anniversary was on 4/16 - and she smiled and nodded her head in understanding.)

It's an all consuming process, while having stretches of doing nothing but sitting by her side.  It seems like an ideal time to catch up on something, but I can barely manage to take the time to write this.  I've never had such long stretches of doing nothing.  I just watch her sleep and wait for a moment that she might look at me with some recognition and affection.  Valerie has always been much more introspective than me and it's always been a huge difference between us - she can sit quietly with just her thoughts, and I can do that too.... for about 2 minutes, then I'm watching somehting, listening to something, you get the idea.  She used to threaten to hide my iPhone after we first got them because I couldn't put it down. :)

For the past several weeks, different family members have been to stay and/or visit - all 3 siblings, Michelle, Sara, and Jon, and a niece Vanessa, with her youngest baby, Gabe.  Valerie has seemed to know all of them at different times of their visit and has been able to share a moment here and there.  Those are priceless.  Valerie has also been able to FaceTime with many nieces and nephews.  Those times with her nieces and nephews are the moments she's smiled the most.

In the hopes of reconnecting with some of our oldest and closest friends - even ones we haven't maintained regular contact with in the past few years - I sent out an email to alert people of Valerie's circumstances.  The responses have been so heartwarming and helpful for me - I haven't read them to Valerie, due to lack of comprehension or confusion.  But the comfort they have offered me has been immeasurable.

Lastly, for now, I want to say something about all of the kind words that people have said about my care and dedication to Valerie during all of this.  While I appreciate the kind words, I want to be clear about where that drive and devotion comes from... it is a reflection of Valerie.  She has inspired in me a love and devotion so deep and abiding that I never knew was possible.  So when you see the actions that come from my love for her, you see HER inspiration, HER dedication to us, and HER strength.  I am only priviledged to reflect it back in a way that I hope is comforting to her.

love to you all.