The Decision I Dread to Face

Yesterday evening as I sat  at the computer in my room, I heard a faint cry from my Mom calling my name.  I went to see what was up and found her down – halfway down on the floor of her bedroom and hanging onto the bed unable to get up.  My brain says, ” Time for hyper -vigilance again”.

As I see her struggle more and more with her mobility I know I must face THE DECISION.  Do I put her in a nursing home or do I continue to look after her at home? ( hopefully with added support).  We put Mom’s name on a list for a nursing home here in town almost a year ago.  They told us then it would probably be about 18 months until a bed was available.  Time is ticking.  I know one of these days I am going to get a phone call from the nursing home telling me they have a bed.  They don’t give you much time to make a decision and if I choose to say no to the bed I am penalized big time.  I go to the bottom of the list and that is after a 6 month waiting time when I can not apply to put her on a list.  What to do?  What to do?  I desperately want to look after her at home.  She desperately wants to stay here at home, her home.

As a kid, your parents have all the power.  They are the ones that make the decisions concerning your life.  Suddenly, I am in a position where I am no longer Mom’s kid.  I am her caregiver making crucial decisions about her life. The details of her life are in my hands.  I am suddenly the parent.

Me and decision-making don’t get along.  My autistic brain struggles terribly with decisions of any kind.  My brain hurts when I have to make a decision.  My brain often shuts down when I have to make a decision and then I go into procrastination mode.  When I think about it, it’s like a thousand mosquitoes buzzing around my head, each with a separate facet of the decision to be made.  They don’t stay still, they continually swoop around my head making it impossible to focus on the right decision to make.  Too many details swooping around,  too many options.  Why can’t it be something at least a bit simpler like do I have regular tea or decaf tea??

This is where my friends, family, church family come in.  I have to admit I need the help of others to sort out many of the decisions of my life.  And of course, in my case, my faith in my God helps me in my decision -making.  I have been praying passionately about this decision.  So far I have had no word except to have her stay at home with me.  So that is where I am at the moment.  But that moment is changing dramatically as her mobility continues to go downhill.

Today I sat down beside her in her sitting room and had a “Mom” to Mom talk with her.   “Mom”, I said, “I am doing everything in my power to keep you here at home with me”. You need to do your part too.  You need to do your exercises when the worker comes.  You need to get up out of your chair more than once in the morning and once in the afternoon to go to the bathroom.  You need to fight to keep your mobility because I don’t know what to do if you can’t get out of your chair or you can’t get to the bathroom.  I know the nursing home will be calling soon with a bed available.  What do I tell them??”

She listens, a demure look on her face.  Oh, how I love that face!  I love my Mom so much.  I want her here with me.  How do I do this?  She starts to get up out of her chair, commenting, “Well, I guess I had better go to the bathroom.”  Did she get what I was trying to tell her?   Does she understand the severity of it?  I think she does – at least for today.  By next week – not so sure.  Later in the day she asks for more water with ice cubes this time.  She never asks for water because she doesn’t like to drink – makes her pee and then that is another exhausting trip down the short hall to the bathroom and back to her beloved chair.  I know she is trying.

Shortly after having the mom talk with my mother, I went downstairs struggling with holding back the tears that wanted to come.  What am I going to do if I get that call?  Suddenly the phone rang and I panicked thinking what if that was the nursing home right now??  Instead it was God reaching down out of Heaven, aware of my anxiety and fear, and sending me his care.  On the phone was a dear worker from Hospice Kingston.  I have talked with her before and she is so kind and seems to just know what I am going through.  She was just making a monthly checkup call but what timing!!  I poured out my heart, my fears and she listened.  And she assured me that if I wanted to keep Mom at home even after she could no longer get to the bathroom etc.  there were ways to do it.  I would have to advocate for myself to secure more help.  I didn’t tell her how hard that is for me.  I didn’t tell her how nervous I am to talk to the coordinator on Mom’s case.  Another huge step out of my comfort zone but I will do anything for Mom.  I said I would make the call.  Another challenge.  This is so hard.  But I have to do it for Mom.

Decisions.  Advocating.  Not easy topics when you are autistic.  Just gotta try to focus on the one element that is the same in all this.  MOM.  And just continue to breathe…… as a dear friend keeps telling me.

Going beyond my comfort zone…

We all love to be comfortable.  We love comfortable clothes, comfortable chairs, comfortable beds, and overall just really comfortable lives.  Lives where things go smoothly, we’re not too stressed, things go our way, no obstacles block our path.

For me living with autism,  being comfortable is something I search for after I have dealt with all the stress and overwhelming feelings that are just a normal part of each and every day.  I come home from running errands so frazzled that I curl up in my favourite blanket and rock in my favourite chair and I strain to find that elusive “comfort”.  I go to bed at night fearing that Mom won’t be alive in the morning and “comfort” only comes when I say goodnight to the world. ( if I don’t have bad dreams).  I absolutely love going to church but attending a service often requires ear plugs, leaving when things get too much and a headache for the rest of the day from all the noise, commotion and interactions with so many people.  Would I stay home?? NO, not on your life.  My life, like this cup that I found does begin each and every day at the end of my comfort zone.  I live in the zone of discombobulation, confusion, being overwhelmed, being stressed to the hilt, and extreme exhaustion.

My comfort comes in the fact that I made it through the day.  My comfort comes in the fact that I stretched myself just a bit further than was “comfortable” and in the process I gained success.  The success of overcoming, the success of knowing that I can do a bit more than I was able to do the day or week or year before.  The success of knowing I am becoming a better person – a more patient person, a more self-less person, a more loving person.

I take for example looking after my elderly Mom.  When she moved in with me 3 years ago, I at first found it very difficult.  I was impatient, I was critical, I was self-centred, I was angry.  As these years have progressed and I have daily supported my mother through all her activities, worries, medical issues.  Every day I have been living beyond my comfort zone.  I have had to deal with strange people coming into my home to help care for my Mom,  I have had to deal with bathroom issues no one would want to deal with, I have had to deal with fears, worries, anxieties every day of whether she will fall, have a heart attack, or worst of all die.  All far beyond my comfort zone.  But I can honestly say that as time has gone on I was surprised to see that I have become much much more patient with Mom,  I am not near so critical, I forget about my own wants, needs to do whatever I can to give Mom the best, and I am no longer angry.  I have a new much deeper love for my Mom than I ever have in my life.  She is like a delicate, fragile flower I must care for and cultivate and nurture.  It doesn’t mean I am no longer living beyond my comfort zone.  I am still there every day.  I am so exhausted I think I could fall asleep standing up.  I am so emotionally exhausted my brain feels like mush but when I think of what I have learned by being beyond my comfort zone – I would not go back to a “comfortable” life for an instant.

Life really can begin at the end of your comfort zone.  And for those of us with autism,  I encourage you to keep stepping beyond your comfort zone.  Retreat when you need to  but don’t shy away from doing those things that just stretch you a little but further.  You’d be surprised at what might be waiting for you out there in the world.  I have been stepping out into the world my whole life and I believe that it is only in doing that, that I have found “life” and success and yes, a bit of comfort.  Life is not easy but it is worthwhile.

I found this quote that I think is fitting.  “Embrace uncertainty.  Some of the most beautiful chapters in our lives won’t have a title until much later.”  BG.    And another one – “The cave you fear to enter holds the treasure you seek” Joseph Campbell.

I must say I have entered a lot of scary caves in my lifetime and I have found nothing but the most beautiful treasures that have enriched my life today.  Be brave!  Step out and experience something new.

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.

 

 

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.

Easter -joy and fear

I LOVE EASTER!  I have so many wonderful memories of Easter as a kid at my grandparent’s home.  In fact, those are the only memories I have of my grandparents.  Grandma’s geraniums with their prolific blooms lining the windowsill even today brings me wafts of their earthy smells to my senses 50 years later.  Getting dressed for church with my new Easter hat and little white gloves and a chocolate bunny joyously discovered at the foot of Grandma’s brass bed lined high with her quilts.  That chocolate bunny, I swear, was almost as big as I was.

And of course, Easter means so much to me spiritually – a risen Christ!  I still get goosebumps every Easter Sunday when we sing “Christ the Lord has risen today – Hallelujah!”  It is my all time favourite hymn.

Mixed in with these wonderful memories and traditions are some very sad times from the last few years.  Two years ago on Easter Sunday my Aunt Marion died suddenly.  Then last year on Easter Sunday my Uncle Bob, her husband, joined his sweetheart in Heaven.  A strange but touching story, certainly filled with much sorrow but also tinged with a wisp of everlasting love and hope.

So it was as Easter approached this year, my logical, mathematical, autistic mind that thrives on making sense of the world through finding patterns started anticipating that the pattern would just continue.  Mom, my uncle’s sister, would follow suit and would go to Heaven on this Easter Sunday.  To you that may seem totally illogical but to my mind the pattern made perfect sense.  So as Easter got closer and closer my fear of losing Mom got stronger and stronger.  By Easter Sunday I was gripped with overwhelming fear that I would lose her sometime on that day.

For many of us with autism,  patterns are what help make sense of our world.  Our need for sameness, for predictability helps sooth our anxious thoughts.  Much of the time I convert activities, thoughts etc into mathematical – like formulas that will always ensure a predictable outcome.  Unfortunately, in this world, the word out is that “change” is the only thing that is predictable.  Try as I might I cannot control my world.  And unfortunately, for us as autistics, our need for patterns can cause great anguish like in this case, rather than sooth us.  It’s a double bind sometimes.

I must say that as I woke the day after Easter and Mom was still with me I was overjoyed.  This was one time when I sure was happy my patterns did not follow their supposed course.  What relief!  What joy!  To know that I still had Mom with me was the best Easter gift anyone could ever give me.

This Easter the dreaded pattern was broken.  I can relax now until some new pattern of my mind finds its way into my life.  It’s funny because Easter is all about breaking the pattern of humanity.  Christ died so the pattern of death is broken for all time.   Believing in Jesus, brings us life forever in heaven with Him.  And that’s a pattern that is written in his blood and death on the cross.  NOTHING can change it.  So I leave this Easter behind knowing I still have my Mom and knowing that the promise of life everlasting will never be broken.  My patterns may come and go and be broken over and over but God is the same yesterday, today and forever.  He will never change.  Wow!  That’s pretty cool to my autistic mind.  HE HAS RISEN.  HE HAS RISEN INDEED!

Flashing lights – Flashbacks

Last Friday I happened to look out my bedroom window to see an ambulance pull up across the street at my elderly neighbour’s home.  My stomach began to churn and I looked on with dismay as the paramedics gathered their stuff out of the back of the ambulance and entered into the house.  I did not realize the effect that seeing this scenario play out in front of me would bring back such vivid flashbacks to a day back in October when my Mom had her heart attack.  I had to call the ambulance.  I remember how calm I suddenly became – like someone just took over my body and was directing everything for me.  I don’t know if this is an autistic thing or not but I do react this way when there is a crisis.  When I worked with special needs kids at school I would become very calm when they went into crisis.  I read in a book on autism once that this is one way we react to a crisis situation.  I remember gathering Mom’s things – her list of pills, her pill bottles, her purse with her health card, her coat, and on and on.  I do not remember feeling anything except a strange calmness – a blankness except for the task at hand.  The paramedics brought Mom downstairs on her chair lift and then transferred her to a special chair that they would use to lift her out to the stretcher waiting in the driveway.  I remember wondering if all the neighbours were watching my Mom and how embarrassing that would be for her – just like I was fixed on watching my neighbour across the street.  I remember the paramedics saying she was in heart failure and how I wasn’t sure what that meant or what it would mean down the road.  I’m glad I didn’t know right then.  The paramedics invited me to ride up front to the hospital.  I will never forget that ride.  We raced along the road, lights flashing and the siren was blaring.  I thought to myself, “Is this the end?”  Is what I have feared for years actually going to happen?  When we got to the emergency department they asked me to go into the waiting area and they took Mom into the emergency dept. area.  It was then that the feelings began to sweep over me.  I wanted to be with Mom and they wanted me out here.  I got out my phone and fumbling with the keys I started phoning people – my brother, my pastor, my friends.  I gave the facts as I knew them at that point – just the facts!  I was like a reporter reporting on the story at hand.  Brief, concise, to the point. No time to waste with what ifs or should I ‘s.   I finally after asking to be let in to see Mom, got to see her.  She was hooked up to machines but she was awake and we chatted briefly.  For the next week Mom stayed in the hospital and I stayed in my role as caretaker, provider, supporter, and information seeker and giver.  I don’t remember if I ever cried.  Maybe I did.  I just know I had a job to do to look after my Mom. I was in extreme exhaustion but I kept going by some unknown strength – well, I actually know what strength it was.  It was God giving me the strength I didn’t have myself to do what needed to be done.  God was with me every moment, through every decision, every overwhelming moment.  He never left me for a second.  He’s like that.  He’s a good God and He was my rock during this incredibly difficult time.

As I saw my neighbour come out of the house and get put on the stretcher I watched as he was taken off to the hospital alone.  His wife stayed at home.  Alone…..   No matter how hard this job of looking after my Mom gets I will never leave her alone.  We are stitched together with intertwining thick threads that will never break.  Mom is home now.  She has been since that week.  She is basically palliative care in heart failure but she is doing well.  I live down the street from an ambulance depot.  I hear sirens often and I see flashing lights often.  I also have flashbacks often.  Guess it just goes with the territory.