Swimming in the swirling waters

I have entered into the swirling waters of caregiver for my father who is in hospice.  As I told the Deacon at church on Sunday, care giving is showing me my faults like nothing else.  I have an image of who I should be, how I should be as a loving daughter caring for her father.  Upbeat, positive, doting, patient — all those words.  But it is hard when the waters swirl and it feels so out of control.  David is shouldering much of the work as I struggle with a myriad of emotions.  There are times I can enjoy the water, much like the river rafting we would do in California, floating along basking in the warmth of the sun.  But more often, it is like canoeing the rivers in Alaska, trying to avoid sandbars, trees, underwater hazards, and raging rapids.  Never knowing what is coming up, will it be peaceful or will it be hard work or will it be even worse like the time we suddenly found ourselves with a wire stretch across the river about neck high with nothing warning us to watch out.  And with every bend, hope is dashed for there is not the port but more swirling river, more rapids, more bends ahead.  It seems never ending.

As I navigate these swirling waters I struggle.  Anticipatory grief is part of every day it seems.  But even harder is managing hope.  We monitor everything wondering ‘how long’.  The last few days he has slept more and had difficulty with some tasks he could do without difficulty.  His appetite isn’t as good.  So perhaps this is the final slide to death. At the same time he is improving in other ways. His humor and flirtatious ways have returned — just ask the nurses and CNAs who provide assistance.  Death no longer seems to be at the next bend, so perhaps this is a minor hiccup.

Swirling in the water is hospice folks thinking he might be a hospice failure.  That death might be many months or even years away.  And while that is a wonderful possibility, it plunges me further into the chaos of the water.  The thought of being full-time care givers for an extended period of time feels like the swirling water will be swifter and more demanding to live in.  It will be finding ways to care for him when hospice ends, as early as mid-February.  New nurses, new CNAs, new routines, exchanging out hospice medical equipment for the same equipment but from another sources.  It will mean managing the expenses that are now part of hospice and making decisions that are not needed when he is in hospice.

Dad is very thankful for everything.  He wants to be as independent as he can be.  He works to do as much as he can.  At the same time his care is taxing.  He wants me to be with him in our sun room.  I have moved my computer in, next will be the paperwork.  I yearn to be in my office.  I yearn to be sewing on Meg’s quilt.  There is only so much room in the sun room.  He wants to watch the news all the time which I find exhausting.  I have introduced him to to home improvement and house hunting shows (he built and remodeled homes as a sideline).  Finding food that he can enjoy or at least be willing to eat.  Checking on him during the night when the baby monitor wakes us.  Having people in and out of the house constantly or so it seems when we have a dog that doesn’t handle strangers well and is a runner.   And,as dad has gained in strength, we now deal with his desire to own a car, to drive.  While it seems so easy to answer, there is his yearning, a deep and powerful one, to own a car again.  To own something of meaning.  He owns virtually nothing now other than the clothes he wears and his walker and wheelchair.  That longing is very real for him.  He has graciously let go of so much in his life but not having a car, and all that it means, bothers him.  Right now it is winter and he knows he doesn’t want to car shop. We have reached an agreement.  If his doctor says in spring that he can drive then he can get a car.  The hospice social worker said that was a great inspiration for affirming his desire and my fears.  In all of this I recall Tim Sedgwick’s ethics class and his famous line, ‘one this hand there is…. but on this hand there is ….”  That is my world. Thank you Tim for giving the language to think about the 4 goods of ethics (do no harm, do good, autonomy and do justice) during this time.  I use it over and over.

My prayers have become simple “thy will be done” for I have no idea what to pray for beyond that.