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.

Guilt to Gratitude: The Happy Wanderer

Several weeks ago I came home from church to find Mom sitting in her easy chair with blood all over her and all over the carpet. She had fallen and hit her head and hurt her back.  That moment created some sort of paradigm shift in my existence.  Where before I had felt fairly comfortable leaving her to do errands and other outings, I now felt terrified to leave her even for a few minutes.

Suddenly, my world had caved in upon itself.  I was no longer free to come and go as I pleased.  This would be very difficult for anyone but for me with autism it was doubly difficult.  I am a wanderer.  I spend a lot of time wandering around town, whether it is to do groceries, to visit my favourite stores, to meet with friends at Tim Horton’s, to just go walking.  Wandering is a huge stress releaser for me.  As a young adult years ago when I was having severe problems,  I would find myself wandering in the middle of the night in my pyjamas around my neighbourhood – sometimes even in the middle of winter.  I would often run when things got tough.  I would run when things got scary.  I would run when I was overwhelmed.

Suddenly I was a prisoner in my own home.  Trying to set up respite was difficult and I could find noone to come in on the weekend.  That meant not going to church and being in the house for 2 whole days.  Just the thoughts of it made me squirreley.  The first weekend I spent at home I became deeply depressed and then I came down with very sore blisters in my mouth – surely a sign of stress.  After 2 weeks of this entrapment, I decided I could no longer do this as it was going to be the end of me.  Part of the problem was that when Mom fell, she declined to phone me ( I ALWAYS have my cell phone with me when I go out) and she didn’t push her lifeline button.  These were two safety nets Mom and I had set up to make sure she would be safe when I went out.  She had refused to use either one of them when she fell.  How could I trust her?  I had a long talk with her about the importance of using the safety nets we had set up and I told her that if she did not use them I could not leave her.  Now, she was also feeling trapped.  She did not like me hovering around her and particularly did not like being “babysat” as she put it.  After much discussion, we decided that we would go back to the way we had done things before she fell.  She would phone or push her button and I would leave her on her own for short periods of time.

Only there was one thing I did not count on – GUILT.   If I tried to leave her for a short period I felt an overwhelming sense of guilt that if she fell or something else happened it would be my fault.  I had to be aware of how she was at all times.  I soon realized that this guilt was partially my feeling that I had to have everything under control.  I could not walk in on a scene like I had that day after church.  Controlling every detail would prevent the extreme fear I had experienced that day or so I thought.  But trying to control every detail was impossible for one thing and for another it was not the way God wanted me to run my life.  By trying to control everything I was removing God from the equation of my life and that could equal disaster.  I wanted God back in His rightful spot – at the centre of my life with Him in first place, not my act of controlling.

I had to fight the guilt and control.  So I decided to take a trip to my favourite place – Value Village and NOT get someone to stay with Mom.  She would be on her own.  I stayed away 3 hours and they were the most anxious 3 hours I have experienced in years.  I almost passed out several times from the extreme anxiety of leaving Mom.  But I did it!!  And Mom was no worse for the wear.    Over the last week I have ventured out on my own several times leaving Mom alone.  Each time it gets a little easier but I have to commit her to God’s care and ask God to help me deal with my anxiety.

So I am free to wander again.  I am so full of gratitude for this privilege.  And that is how I look at it now.  It is indeed a privilege that at any time could be taken away again.  To feel like a caged animal in your own home is a frightening experience and not one I want to repeat.  I still feel trapped in the sense that I am bound to Mom for her care and well-being but I will deal with that as best I can.  That is just my life right now.  As long as I can wander I can experience some relief from the restraints that are on me at this time in my life.  And wander I will…..

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.

A New Revelation

Today I was in conversation with my grief counselor when I had one of those light bulb moments.  One thing I have always felt is that when Mom goes I will not only be alone in the world but I will be LOST.  I have never really understood why I felt that way.  Of course, there are a number of good answers but they didn’t seem to fit my situation.

Today I think I found the key that unlocked the door to this overwhelming feeling of being LOST.

As most people with autism will acknowledge, we just don’t connect very well with people, with our world, with anything if truth be told.  For my whole life I have distinctly felt a disconnect with everything around me.  I go through life as if looking through a glass window not able to reach what is beyond.  I feel most of the time as if I am  in a deep fog.  I struggle to make sense of my surroundings all the time and if it is not a good day my surroundings overwhelm me greatly.  I struggle even to cross the street some days.  I will stand and look at the traffic lights and try to compute what red means or green means.  Sometimes I stand so long the lights change several times.  Other days I have no trouble at all.  Most days I have the feeling that if I just reached out and touched with my one finger a building or other structure around me my whole world  would tumble down like a house of cards.

But today in talking things out,  I suddenly realized that I do connect in one point.  I connect with my Mom.  It has not always been a good connection, in fact very detrimental at times but there is a connection.  I can say that in the last few years our connection is much more positive as lots of healing as happened.   I can’t quite find the words to explain but it is a connection that goes beyond time and space.  It is a deep, spiritual-like connection.  Something binds my Mom and me together – whether our shared autism, or that inexplicable mother-daughter connection people talk about.  I just know that of anything on this earth, my Mom is likely the closest I come to making a connection.  I never felt that way with my Dad yet I loved my Dad passionately and miss him so much.   So when I say I will be LOST when she dies I understand more fully why that will be.  I will lose the only thing/person that attaches me to this earth. Not even my beloved cats make the mark although they come pretty close.  Without her I am like a child’s balloon suddenly let go that bobs off into the sky with no direction, no security, no anchor to earth and at the mercy of the elements like the wind, rain, and electrical wires or tree limbs.

So what do I do with this revelation?  What would you do ?  It is good to know this but I don’t know what to do about it.  If Mom is the only connection I have made and I could lose that connection at any time what am I to do?  Do I live the rest of my life indeed feeling LOST?  I don’t know.  My attempts at making connections with things or people  have failed so far so what chance is there that I am going to have success after she goes with someone or something else?  Am I going to be a balloon forever bobbing around on this earth and goodness know where I would end up.  No wonder I am so petrified of losing Mom.  This is a tough dilemma. The world has just gotten a lot scarier tonight.

I guess I will have to take this one to God.  He is good with tough problems.  He has promised to look after me and I guess I have to just trust in that promise even if that means living in a world unconnected and alone.  God will be my ENOUGH.  One thing about being lost is that it is understood that when something is lost someone is looking for it.  It has value and is worth finding.  I saw on the news yesterday that a young boy accidently lost his cell phone in the garbage at his school.  The father took if upon himself to find that lost phone for his son.  He went to such lengths that he searched through a 50 foot pile of garbage at the garbage and recycling site.  And would you believe that he actually found it??  Jesus talks in the bible that he comes to seek and save the LOST.  I can have assurance that Jesus values me so dearly that he will seek me till I am no longer LOST.  I don’t know what this will look like but I will look forward to that day that I am found.

Now I am going to go and “connect” with my Mom as I get her ready for bed.  My beloved Mama.

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.