As I sit here at my kitchen table I am listening to some of the music that soothed my Mom for her last year and 4 months.  It is excruciating and beautiful all at the same time.  As I hear, “Blessed Assurance” and “Savior like a Shepherd Lead Us” I am transported back to her dimly lit open living space with her laying in her hospital bed central to whatever was happening.  She was always the focus no matter what else was going on; home care workers, nurses, friends and family.  Life went on outside her window, people coming and going with their groceries and children.  Sometimes I would just watch them as they went on with their lives having no idea what was happening behind the partially drawn vertical blinds.  But life seemed to stand still in apartment 101.  As her newly peaked interests started to fade from everything that she was so thankful to enjoy to barely moving the one thing that kept her was her music.

And now that music keeps me.  Some days it feels a bit like torture to listen to “It is well with My Soul” and I wonder why I do it but it is also the best memories I have of my Mom.  Her time of sickness was also her time of peace.  But we helping her gain peace left me pain.  I am left with wounds and scars that may never heal.   I do not regret a minute of it but I am here to say, “Tread lightly.”  There are things that doctors, nurses, etc. do not tell you about caring for a family member.  I feel haunted some days.  I hear someone breathe a certain way and I am instantly sent back to her last hours when her breathing became raspier.  I hear my son say, “OK, ok.”  And I’m instantly transported back to her bedside listening to her say that same phrase over and over while she struggled to keep her thoughts together as her brain and body became weaker from starvation.

Living with almost constant tension, anxiety and exhaustion for a year and a half has left me with painful joints and tension that have finally started to let up 8 months later.  I have also been left with mild anxiety issues that used to turn into panic attacks.  They have lessened greatly but every once in a while I know that I have to back away from a situation to keep it in check.

I have been told the typical phrases of well-meaning “consolation” many times over the years through many periods of grief.  I know the steps of grief not from a book but from life.  I know that the steps of grief are not a straight clean staircase with a few landings put in for resting.  The steps of grief are messy.  There’s stuff all over them that has to be dealt with.  You can just step over the stuff but it’ll just be there waiting the next time you come around.  Some staircases holding the steps of grief are winding, you never know what’s around the bend.  Other staircases are narrow and treacherous and you feel like you are going to lose your footing and fall back to the bottom of the stairs.  And some days you do fall.  Then there are staircases that seem to go in a never ending circle and you just keep ending up at the same place you started at.

I am here to say that care giving and loss are painful.  There is no quick fix.  I will not deny or ignore my grief because I have watched others make that attempt.  I’m not okay.  I’m grieving.  I’m grieving for not only for my Mother but other family who went before her.  Her absence makes their absence more apparent.  I grieve not only for my Mother’s death but also for the relationship we had finally started and more so for her suffering.  And not just the 18 months of suffering but the 33 years before that as well.  I know that she is in a happier place and she doesn’t care about the suffering that she went through and I’m so happy and relieved for her.  But I do care; I am here on earth and still feel the pain that we helped her carry.  I know this will become a little easier but until it does I have the music.