Another Change in Course

If things were to stay the same too long or consistent during this journey, you long time readers might think you had accidentally hit a Favorites button on your browser that took you to Boringbloggin’ rather than Walliebloggin’.  So to bring you up to speed, the homecoming didn’t last as long as you may have expected.

Every person we have met associated through Kansas City Hospice has been above and beyond what I had expected.  After some preliminary meetings and paper signings, Miki’s care was underway.  It began at the house with our hospice nurse, Kathy.  Our first 24 hours, I was to monitor Miki and her pain and nausea and administer some medication as needed to help our nurse determine a path for her comfort at home, since she could not be there all the time with us.  Would I  be able to provide the care she needed?

The next day, I gave my observations and record keeping to Kathy, who interpreted it as only a veteran hospice nurse could.  She added that information to her previous and current observations and felt strongly that Miki would be better served at the KC Hospice House.  I would have a significant portion of caregiver responsibility taken from my shoulders and Miki would receive excellent round the clock care in an environment that is perfectly matched for the situation we find ourselves in.  In turn I would get to be full time husband, friend, and chief Kleenex consumer.

Kathy laid out the reasons to Miki as to why this would be a good move that would remove her from her home and to level out her pain from the previous roller coaster-like ride she was on.  Constipation was still a serious concern and before Wednesday was over  , Miki was transported by ambulance to Hospice House and yet another correction to her course was taken to help facilitate Miki's wishes, to be free of pain and the body that was being inflicted by it.

That brings you to her current location.  Not back to Centerpoint, not another doctors office visit, and not at home.  At this point I am hoping the phrase, home is where the heart is, lives up to the words within it.  

Forty-seven postings ago, I told you that this portion of my blogging would not be from the road, but from my perspective as we headed into our detour through the land of cancer and I hope I made it primarily that.  To be true to that intent, the following are some thoughts on recent days.

Up to this last visit to the hospital, I had my sights set down the road where a basket with all our eggs was waiting called MD Anderson.  I had been looking ahead, weeks at a time.  Since then, it has become a day at a time.  And I anticipate that to be pared down to hours and minutes and I hate that thought.

A few friends and family have noticed I've lost some weight, but since we haven't owned a scale for a really long time, I couldn't tell you, but my pants are a little more loose.  I never miss breakfast, but I can easily sweep through the day and realize I was eating dinner at bedtime.  It doesn't happen very often, but can.  That diet can be attributed to Miki Gazing.  It has taken the place of watching TV and an over abundance of computer time.  A phenomenon known to happen when sitting next to Miki, as she has progressed to this point on this journey.  Step one consists of watching each breath she takes as it raises and lowers her chest, then repeats.  Step two consists of tracing each small wrinkle on her face back to a smile, a story, or just a moment we shared.  Wishful thinking that they all belonged to me, but you probably have claim to a few.  And finally, the search for the elusive open eyes.  If her bright, clear eyes are the prey, then I am the predator, lying in wait to catch them when they appear.  It's worth the effort, every time.  Do that and you won't think about eating.  Don't worry though, what I have lost can be considered what I started gaining when I turned 30 and Miki told me I was starting to "spread out."

These last few run a little deeper.  Ever since she has either lost the appetite to eat or has issues trying to eat, it is hard to enjoy a meal or a bite of one, knowing she cannot.  Even away and out of sight from her, its on my mind and doesn't seem right.  Now before you go all psychobabble on me, it doesn't keep me from eating and Denial is just the name of a little river in Egypt!

One last thought about the what-ifs.  Miki straightened me out early, on this leg of our journey, that every decision we made along the way to the present was perfect.  Like Monday morning quarterbacking, you can't undo the game for a different outcome, so why waste your energy on it, when you can put it toward making a difference that counts somewhere else.  Like most thoughtful people, we considered what we had at the time and drew our decisions from that.  Each of us brings a different set of tools we accumulate to and through our journey.  We did the best we could with what we had.  If only we had a crystal ball among our tools.

Miki is not done here, but how the next steps unfold is anyone's guess.  Her breaths have become a little more purposeful.  Her physical strength is waning.  So it is important Miki is surrounded and held up by our love for her and that is as good as it gets.  Our support is overwhelming and continues to be abundantly appreciated.

P.S.  The cards (including birthday cards!), emails, and other forms of communication continue to overwhelm both of us.  When I show Miki a stack of cards that came in the mail, all for her, she beams.  We find the time between visitors when I sit down by her side and read each one to her and the name(s) at the bottom.  Friends, acquaintances, former students, family, it makes no difference.  She takes a moment to love each one.

My Zen from Home:  The power of volunteers.  Here at Hospice House, volunteers provide a number of meals for the families who are being supported by Hospice House.  They are not just meals though.  They are an extension of their appreciation for what Hospice House has done for them and their loved ones.  A nice surprise for those of us that support our loved ones that need it.  As I walk through the line of food prepared with thanks, I feel a hug from those who have walked before me and know a version of Miki's story.

Miki modeling a birthday gift from a friend.