Anticipatory Grief – a new round!

This morning I was bustling around the house getting ready for church.  I was desperately trying to remember everything I had to do to get ready – my usual predicament.  I went upstairs to get Mom’s dishes to get her breakfast and took one look at her and knew something was not right.  Her face was flushed and her eyes big with fear.  I said to her,  ” You’re not feeling OK are you.  I’m not going to church.  I’ll stay here with you.”  I could tell she was relieved that I was going to stay home with her.  She said she was coughing a lot and as I listened to her coughing I realized it was a lot worse than it had ever been.  It was gurgly, and loose and she was wheezing and sometimes whistling as she breathed.  She said she had been coughing all night.  Was her heart failure worse?

Again, I went into hyper-alert mode.  Organization mode.  The first thing I did was call the nursing company and ask for a nurse to come and see Mom today.  I got her breakfast.  I got her pills.    I got her nitro patch.  I messaged my pastor to pray.  I went through all the motions while the silent screams filled my head.  Were we getting closer to the end.  Was this it???  I wasn’t expecting this.  She seemed to be doing well.  We were just kidding the other day that she would be living to 100.

I made a cup of tea and sat with her sipping silently, listening to her struggle as she coughed over and over again almost to the point of gagging.  When that cup was gone I made another and did this over and over most of the day sitting by her side.  She dozed on and off.  We watched a bit of TV.

Later on she decided to lay down for a real nap.  I went downstairs and listened to the news about Hurricane Irma reaching Florida.  The news droned on as I sat in my easy chair trying to make sense of what was happening today.  Somehow what seemed to be way in the future was now right in front of my face staring me down.  Daring me to face it head on. My own hurricane of sorts.  Was today the day she was going to die?  Or was this another false alarm?  Maybe a false alarm but a giant step closer to what I did not want to face.  Yes, Yes, Yes…..   I am ready to let her go.  I can’t hold on to my Mom forever.  I have rehearsed this moment over and over and over in my mind.  The moment she goes to be with Dad in Heaven.  I see them embracing, so happy to be together once again.  I am happy for them.  I am happy Mom is no longer suffering.  Then I remember.  I am now alone.  Alone without Mom but not alone totally.  I have Jesus who is right with me holding me, and I have my beloved kitties and I have my friends and my church family.  No, I am not alone. But oh, it sure feels that way.

The nurse comes.  We wake Mom up and the nurse gives her a good going over.  Nurse’s advice – phone her doctor tomorrow and tell her things have changed.  The nurse tells me in private that most likely her heart failure is worse.  I say good bye to the nurse and go upstairs while Mom continues to nap and I clean my room.  Might as well be productive in a crisis.   I start to feel sick to my stomach.  I feel I am going to throw up.  I realize that listening to Mom coughing is bothering me so much that the stress of it is making me nauseous.  I agonize for my Mom as she has to go through this.  Some say those with autism do not have empathy but with many of us just the opposite is true.  We are so empathetic that it distresses us greatly.  Maybe not in the usual ways but it does cause us great grief.   I go downstairs and put on my christian music to help me cope, to ease the panic, and the stress I feel.  The nausea does not go away.  And now a full blown headache rears up.  I wrap my blanket around me and rock back and forth, back and forth.  Hurricane Irma is now a catagory 2.  My hurricane has just been elevated to a category 8.  A 10 and I will explode into a million pieces.

I call my brother in Ottawa and let him know Mom is having a hard time.  He relates to me all my nephew’s hockey practices this weekend. Hockey season has just started again.  It is intense.  He says they will have to try to get down in the next few weeks.  I hang up.  I feel empty.

I don’t know what will happen in the days to come.  I don’t know whether this is just a bad day or whether this is the start of a new reality for both of us.  I will stay close to Mom, my beloved Mom.  I will cherish her every moment.  Even if each moment stretches into months down the road or stops tomorrow.   I just know each moment is precious.  And I know that when it is the darkest, God’s light shines the brightest.  He will be my light to maneuver through whatever lies ahead. And I will rest in the shadow of his wing.

One Day At A Time

In talking to people about grief and in my readings on grief, one of the main issues is connected to TIME.  If people are really honest with you they will tell you that it is the not knowing how long a loved one will continue to live and how long they will have to go on caring for their loved one that brings them a lot of stress, anxiety and yes, grief.

This has definitely been true in my own case of looking after my Mom.  Being autistic only adds to this dilemma as we like to have things down to a science.  We want to know when, where, how long, what and a myriad of other answers to the questions that press in on us so that we can be certain of as many variables as we can.  That brings relief, less stress and anxiety and gives us a sense of security.

Unfortunately, dealing with a loved one in palliative care has no answers to give except “don’t know”, not sure how long, wait, I can’t answer that.  There have been times in the last 3 years of looking after my Mom when not knowing has just about drove me crazy.  I became so anxious that I became close to suicidal.  I would spiral down, down, down, as I frantically tried to somehow pin a time on when – when this would all end.

BUT….through this maniacal journey, I have ( I think) found something that helps deal with the unknowns.  When we deal with unknowns we are dealing with the future.  The future is unattainable, uncharted territory.  But TODAY is much more manageable.  If I can stay in the present and not allow my brain to fast forward into the future I can stay somewhat sane.  TODAY has a lot of predictability in it that I like very much.  It agrees with me.  Like….

….  I get up, I get my tea, when Mom gets up I get her breakfast.  I dole out her pills and other medical applications.  I might visit for awhile.  Then I can go do my own stuff.  Certain days I have appointments, respite, work at the library.  Evenings are usually the same.  I get Mom her usual Egg McMuffin (homemade), glass of milk and a cookie, then she watches “Murder She Wrote” and I do my thing until 9:30 when I get Mom ready for bed – pills, ice water, etc etc.  Lots of predictability.  I like that.

Of course, there are always new adventures thrown in that are not expected like a bat in the house or me getting a concussion or Mom falling and getting a goose egg on her head.  But at least they are in amongst the predictability of that day.  I can manage much better with these random adventures when I am not thinking beyond that particular day.

Taking one day at a time has really helped me to lower my anxiety, my stress level and my time with my Mom is happier and calmer.

The bible has a wise verse in Matthew about this.  It says, “Therefore do not worry about tomorrow, for tomorrow will worry about its own things.  Sufficient for the day is it’s own trouble.”  It really is true.  Focusing on the present is like a present to myself.  I am so much calmer and able to handle things.  I can do this job for as long as Mom is with me.  I can enjoy my time with Mom much more.  The rest is up to God.

That Which I Have Feared the Most

A quote by Joss Whedon says, “Loneliness is about the scariest thing out there.”  Concerning my Mom, I don’t fear her dying.  I know she will go to Heaven and I know she is ready to go.  She is weary and tired of life.  I don’t fear the funeral.  I spoke at my Dad’s funeral and I will also speak at my Mom’s funeral.  What I fear more than anything is BEING ALONE.  For years this fear has preyed on me, following me into my dark moments and even lurking out in the bright sunshine.  It’s a fear so overpowering that for a number of years I was adamant that when Mom went to Heaven, I was going to follow her shortly after.  I was NOT staying on this earth by myself.  It has only been in the past year that I have mustered the courage to commit to staying here on earth till my last breath is chosen by God not myself.

I have struggled to understand this incredible sense that I will be all alone.  My friends annoyingly ask me,” Well, what are they?  Chopped liver??”  Don’t they mean anything in my life.  I am also told I will have my church family.  Yes, I know that full well and am very grateful for the wonderful people in my church and I know I will need them like I have never needed them or any group of people in my life before.  I have my wonderful brother and sister in law and an amazing neice and nephew and other cousins.   But for some reason that escapes me it is not the same as having your mother alive.

Hope Edelman who wrote Motherless Daughters: the Legacy of Loss has this quote which helps me understand a  bit of what I may be going through.  She says, “When one parent dies, the world is dramatically altered, absolutely, but you still have another one left.  When that second parent dies, it’s the loss of all ties, and where does that leave you?  You lose your history, your sense of connection to the past.  You also lose the final buffer between you and death.  Even if you’re an adult, it’s weird to be orphaned.”

For me, my mother has always been a huge part of my life even when the huge part was negative.  For years I struggled with a love/hate relationship with my Mom.  I also struggled with feeling very abandoned by my Mom as her autism ( and my autism) played a role in her parenting of me and my responses that left me feeling very detached from her. She was often very depressed and not emotionally available to me and this left me with a huge hole in my inner most being where I longed for her and the hole ached all the time.  I also longed for her acceptance.  Mom in her lack of understanding how words can hurt has told me ( and others) that she wanted and boy and she got me.  Not a month goes by and I am again reminded of this family fact.   It was only when Mom moved in with me 3 years ago that slowly that hole filled up and now it is basically healed.  It has healed because for the first time in my life she sees me as valuable and acceptable.  She recognizes that without me she is totally lost in this world with noone to look after her. I now have worth.  I hold no grudges and have forgiven her.  Looking after her, God has given me such a love for her that it is overflowing.  I love her with such tenderness I never knew I had in me ( and actually I don’t – it is God in his mercy giving me the gift of service and love for my Mom)  I am forever grateful for the last 3 years because now when she passes I have no regrets.  That is a precious position to be in.

I really feel that when Mom goes I will be totally alone in the world.  It is the fear of all fears.  Mom has always listened to my stories, my news in my life, she has prayed for me every day, she even listens to my endless  passionate chatter about my beloved cats.  Who will do that when she is gone??  Noone that I know.  Only a mother would do that.  But like the quote I mentioned above, there is something much deeper,  a much more profound loss when you lose your last parent.  You are indeed an orphan in the world.

If I am going to remain here after Mom leaves this earth I must find a way to survive and not just survive but to continue to grow and flourish in who I am.  Janet Fitch in White Oleander quotes, ” Loneliness is the human condition.  Cultivate it.  The way it tunnels into you allows your soul room to grow. Never expect to outgrow loneliness.  Never hope to find people who will understand you, someone to fill that space.  An intelligent, sensitive person is the exception, the very great exception.  If you expect to find people who will understand you you will grow murderous with disappointment.  The best you’ll ever do is to understand yourself, know what it is that you want, and not let cattle stand in your way.”

Did you know that God talks about orphans in the bible?  John 14:18 says, “I will not leave you as orphans.  I will come to you.”   And in Psalms 27:10 it says, “When my father and mother forsake me ( or die) then the Lord will take me up.”  And Heb. 13:5  says, ” I will NEVER leave you nor forsake you.”  These are precious promises that I intend to hold onto with a grip so tight that nothing can take them away from me.    And one last one.  Isaiah 41:10 says, “So do not FEAR, for I am with you, do not be dismayed for I am your God.  I will strengthen you and help you.”  I can either choose to accept these promises as the total truth that they are or I can continue to tremble in my fear of being alone.  I know I will feel alone but there is someone bigger than that aloneness that I can take refuge in and find peace.

My job now is to plan for the future without Mom.  And I am doing that.  God is a God who believes our purpose is not wrapped up in another person.  Our purpose is wrapped up in God.  Yes, my purpose now is to look after Mom but that will end and I will have to find new passions and purposes to carry on with.  This blog will be one of those purposes.  My job at the library will be one of those purposes.  My desire to speak and advocate for those with autism will be one of those purposes.  My passions like photography, my greeting card business, my new love of knitting, my books, my desire to write a book, my crazy cats are all ways I will carry on in this world.  But as I carry on with all these things I will carry my mother’s memory in everything I do and think each and every day.  As long as I remember her she will never be far away.

No matter how much planning I do, no matter how much courage I muster up, I know that which I fear will come true.  I will feel alone and feel like I am nothing in this world.  But when you have nothing left but God you have more than enough to start over again.

I read another quote, this one by Ayn Rand who said, “Every loneliness is a pinnacle.  I am not exactly sure what this author meant by these words but I looked up the word pinnacle and one of the words for it is “Peak”  like a mountain peak.  I imagine myself on the day Mom dies as standing on a mountain peak surveying my world. I could jump to my death and follow Mom to Heaven or I could fulfill God’s purposes for me that have not been carried out yet and be an adopted child of God with much to do.  There is still a promised land out there waiting for me, a land with milk and honey and as I stand on the peak of an new dawn and the sun rises I see all the richness I still have to live for.  Yes, there are giants in the land to be conquered but I am confident me and God can make mincemeat out of them one giant at a time.