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.

Anticipatory Grief Again – Really!?!

Every day as I look after Mom I live in a state of limbo between death and life.  I know Mom is going to die sometime in the future – probably sooner than later.  I watch her slowly deteriorate as if she were a slowly deflating helium balloon.  But then there is always the possibility that a proverbial pin will puncture the balloon in one single deadly instant.  And when will this happen, and how long will it go on? Questions I cannot answer no matter how much I wish I could.

I am experiencing anticipatory grief – that feeling of loss even before a death occurs.  I sometimes feel it must almost be as bad as the actual grief at the time of death.  It certainly consumes me like it is eating me from the inside out.  I wrestle everyday with thoughts of fear, great sadness, worry and I am in a constant state of suspense.  I am in the middle of a living horror movie knowing  it will end but not knowing anything else about the details.

I am on constant alert.  I call it being “hyper -vigilant”.  The constant alert goes to HYPER ALERT when something happens to Mom to indicate there is a change for the worse.  This happened this week.  Wednesday, our caregiver came downstairs to tell me that Mom was in a confused state, unsure of what was happening.  She was also needing her nitro spray often and hours later Mom confessed she had been having pain down her left arm.  I struggled to know what to do about going to work.  Should I go or stay home and watch Mom?  Mom assured me she wanted me to go to work so reluctantly I headed off with phone around my neck in case she phoned.  I silently worked away at the library putting books away  the tears close at hand.  I wanted to run home and hug Mom and make sure nothing happened to her.  Yet, when I left at the end of my shift I was afraid to go home – afraid of what I might find.  Constant limbo, constant suspense, constant alert.

Mom has been with me for over 3 years now.  3 years of living in limbo.  Three years of not knowing when or how.  It wears you down and after a session of being in HYPER ALERT I just grind to a halt.  Managing what I need to do for Mom is all that gets done.  The rest of the time I am in my easy chair rocking, rocking….  trying to get back some semblance of normalcy, a daily simple rhythm again.  It may take days to get to this point.  And then in the facade of normalcy I wait…  wait on tenderhooks for the moment something happens again to send me hurtling back into HYPER ALERT.

Being autistic does not make this any easier.  In fact, it makes this life much more difficult.  We like order, we like sameness, we like predictability.  I live with none of this and it wreaks havoc on my body and mind.  When I worked in the school system,  I worked with one young autistic boy who used visual aids extensively.  He had pic symbols across his desk to outline his daily routine.  Preciseness, predictability and knowing what was going to happen next determined his whole emotional well-being.  I made sure his symbols accurately detailed his day, I gave him 5 min. warnings when things would shift to the  next symbol.  I did all the things I needed to do to keep this boy on an even keel.  I even had a magic card – the CHANGE card.  I would quickly switch it in if there was an unexpected change in the day and then talk about the change with him.  Most times the change went smoothly with this magic card.

I WANT THAT MAGIC CARD!   I want someone to hand me the CHANGE card when something is going to change in my day.  But I don’t have that magic card and neither does anyone else for me.  There are no warnings, no alerts across the TV screen, just this sickening sense all the time that my whole life can change at any moment and I can’t do a thing about it.

Grief – we think of grief when someone dies.  We don’t think of grief before someone dies.  But it is just as real, just as potent, just as relentless. It puts your life on total hold.  It’s called anticipatory grief.   Harriet Hodgson wrote an article entitled, “Why is anticipatory grief so powerful?”  You can probably google it but it was on http://thecaregiverspace.org.  I leave you with a quote she says, “If sudden death hits like an explosion, knocking you flat, then a slow decline arrives like a glacier, massive, unstoppable, grinding you down.”

I am out of strength.  I am spent totally.  But I have a God who gives me the strength that I do not possess to keep going day after day for as long as necessary.  His power is made perfect in my weakness.  And as long as I have my beloved, precious Mom with me I know my God will carry me through what I have to go through.  He does not promise to dispel the despair we suffer but he does promise to walk through it with us.  He is my ENOUGH when there is no answer, when there is no predictability and when I want to quit.

Time – precious thing that it is, keeps ticking.  The angel in my photo at the top is holding onto a clock.  Only God knows the time Mom has here on earth.  We watch the clock sometimes wishing it were over and at the same time wanting time to go on forever.  That’s anticipatory grief.  There’s no” time timer” ( a special clock to use with autistic kids)  here to see how much time we have left.  Each moment with Mom is a precious moment.  Today I gave her a bouquet of dandelions.  Their bright yellow bobbing heads the ultimate mother’s bouquet from her dear child.  Will I ever have another chance to give her this precious little bouquet?  I don’t know but I’m not taking a chance on time stealing my opportunity.  You really do live as if each day is the last one.  I live this out in real time but this story could happen to any one of you.  A loved one could die in an accident or have a massive unexpected heart attack.  I appeal to you, no matter what you do remember life is fragile.  Despite going through this living hell of anticipatory grief I am still thankful that I at least get to go through it knowing I can make a difference in the time I have.  Make sure you make a difference in the time you have with your loved ones.