No Words

I decided when we arrived at Hospice House Wednesday, that I wouldn’t be leaving until Miki does.  I signed on for the “better or worse” part when we got married and even though we may not have stated it in those terms in our vows, it’s the clearest interpretation of sticking it out together I can imagine. And that is what we both signed up for.  I trust that she would have done the same for me these last six months that I have done for her...and then some.  We’ve had a lot of the better, but life tends to balance things out one way or another.  There are no words to say this without sounding selfish, but after tomorrow (Monday, December 2), I am asking that Miki receive no more visitors, so she and I may have what time is left to be alone.  I don’t know what to expect as time draws near for her, or me for that matter, but the hospice nurses and our doctor here are exceptionally full of experience and compassion and have handled and guided me with grace.  They are amazing.

There have been no words from Miki since last evening.  As she has lost her energy to do the smallest of activities with any control, such as holding a cup of water on her own, she has lost the ability to communicate with words.  The last few days has shown that it has gotten harder for her to search out and verbalize the right words she has needed to use.  And when that happens, frustration comes close behind.  If you know Miki, that has never been a problem.  Not the getting frustrated part, but the free flowing words part.  The gift of gab, for lack of a better description, is truly one of her gifts.  When encountering someone in the grocery store we knew (friend, parent, or both), I knew I might as well find a pop can display to sit on, because words would be flying for at least a few minutes as the ice cream began to melt in the cart.  She has rarely been at a loss for words.  For that reason, I cannot fathom what she must be experiencing, trapped in her head with no way to get a thought out.

This lack of energy came to a head last night when she woke up and began moving as if she were getting up.  The difference was she had little control over her body in a way I had not seen.  She no longer was able to help me, help her.  It was as if I was trying to manipulate a handful of cooked spaghetti.  After the nurse helped alleviate the situation and got her back in bed, the conversation with the nurse turned to using a catheter to help eliminate the need for Miki to expend her energy in one area in order to have it for another.  This morning a catheter was put in place and essentially marked the point in time when she would not be getting out of bed again.

If that were not enough for one day, as the morning grew longer, she did not “wake up.”  She looked as though she was sleeping.  Each breath seemed short and somewhat labored.  I spoke to her to see if I could raise a reaction, but with no success.  The nurse shared that if this continued throughout the day, it is most likely that she would not “wake up” again.  One of the stepping stones that marks her journeys end.  But on the positive side, she should be able to hear me no matter what, the nurse said.  So the day has been interspersed with short one-sided conversations between us.  If we could only have one day back for every time I told her I loved her today, she wouldn’t be in this mess right now.  I read a letter from a friend to her that she grew up with from back in Arkansas that her mom forwarded to me.  I read her a book called “Just One Day,” a friend of ours wrote, and I read her more from the cards and emails that have been piling up.  She has had friends sitting with her reminiscing and I’m sure she was eavesdropping on conversations I’ve had today with friends that have stopped by.  It may not appear to be this way, but the light is still on and there is still someone home, the nurse assures me.

Even though it has been a relatively short time for me to assimilate to these behaviors, without the interaction its easy to fall into a crack that lets you think she is just asleep and in a few minutes she’ll be ready to talk about the day.  When that reality creeps back in, so do the tears.  I’ve tried to dissect the feelings that come from each good cry.  Am I crying because I feel bad for her, or sorry for me?  And until she’s free, it’s not about me.  As many of you have expressed, this frail body, breathing oxygen through a tube, does not belong to the vibrant, active soul that we call Miki.

As I stated recently, there have been numerous moments between Miki, friends, and family and I hold out hope that selfishly there might be one more for me.  The stories that have been relived, the photos dug out, and feelings that have been uncovered, all help in the process of letting go.  But those of you that have already experienced what I am coming to know, surely realize that like the cancer that is taking her life, it’s effects are unique to each person it attacks. I can only assume that losing my Miki is also uniquely similar in that way.  All I know is that right now, there are no words.

My Zen from Home:  I've not felt a zen for some time, but this hit the spot yesterday.  In 2006, Miki and I made a rendezvous with some friends to backpack in Colorado.  One of the hikers in the group was 5 year old Hannah.  Like the rest of the motley crew heading up the mountain, Hannah had her own backpack.  In that backpack was Purler, a white stuffed bear.  At some point along the trail, Purler found his way into a mud hole.  Miki came to his rescue and got him as clean as you can clean a white stuffed bear in the wilderness and placed him back into the care of Hannah.  That was 7 years ago.  Yesterday, Hannah came to visit Miki at Hospice House and told her that she didn't need Purler anymore and that she could hold him through this difficult time for her, just as Miki had helped Hannah through her difficult time when Purler fell into the mud.  A little kindness goes a long way.  In this case, it goes miles up in altitude and years down the road.

Hannah and a muddy Purler.

Purler on Miki duty.

Bonus Pic

Beth and Eric came to visit today with goodies in hand.
Not only custom cookies, but pizzas for hungry hospice
families to enjoy.  Nice touch.