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.

A Special Day

Two weeks ago today ( I know – I am not consistent in my blog writing lately), it was the day of my Mom and Dad’s anniversary.  They would have been married 65 years  this year.  I believe it was a bittersweet day for my Mom as she really wanted to celebrate it but without Dad here ( he passed away 7 years ago) it just was not the same.

This is a picture of them on their wedding day.  They look so happy as usually newlyweds look.  Although their marriage lasted their whole life and I can say it was a basically happy, contented marriage, there were tough times.  I remember in my teens I was scared silly Mom and Dad were going to split up.  I knew things were unhappy in our household but was not sure what was wrong.  It’s only been the last couple of years of going through stuff from their house that I pieced together some of what was happening.

Dad was starting a new job as a carpet cleaner.  This was a franchise business. He was responsible for setting it up, advertising and promoting the business, book-keeping, collecting payments etc etc.  If you knew my Dad, he was not an entrepreneur or salesman.  This unfortunately was the worse job Dad could have picked for himself.  What started to happen was that he turned most of these jobs except the actual cleaning over to Mom who was an unhappy and unwilling business partner.  She was not much better at these tasks and so much friction developed. Consequently, without much effort going into the business, financial issues became urgent.

Despite what people might say about those with autism not having empathy or awareness of other’s emotions, I was acutely aware to the point of being terrified.  I was not aware of details, I just knew something was wrong in our household. I tend to be very aware of the emotional atmosphere around me, although I may not understand what’s going on and any tension can really bring on strong anxiety and panic.

To make a blog story short,  I am happy to say that Dad got out of that business and got a job at the public school up the street as head custodian and he excelled at the job.  He was probably the best custodian that school had ever had.  Mom also got a new job as an admitting clerk at the nearby hospital where she also excelled.  These permanent jobs meant stability, especially financial stability in their lives and things were much better for all of us.

Mom and Dad were like two peas in a pod.  They basically spent all their time together with very few other people ever coming into our home.  They were each other’s best friend and companions.  They were truly devoted to each other and although did not outwardly express it often they loved each other dearly.  When Dad was on his deathbed,  I knew how hard it was for him to know he was leaving Mom behind.  I promised him I would look after Mom, a promise I could never break.  I have gotten myself into a real situation where Mom should really be in a nursing home but I continue to care for her at my home because as I said, I promised “I” would look after Mom – not the nursing home.  My friends try to explain to me that me looking after Mom can take many forms including her being in a nursing home but I cannot make my brain switch from what I believe I promised my Dad in his last hours.  My autistic brain is stuck and I am not sure how the future will play out.

What I have learned from watching my parents is that they made a commitment and stuck with it through thick and thin.  It wasn’t always easy or pleasant but they managed.  They provided their children, my brother and me, with a relatively stable household in which to grow up in which was very important to me. From watching my parents over all these years, I have a good understanding of what commitment means.  I am playing out that same kind of commitment as I strive to look after my Mom in a way that is honouring and best for Mom.  Commitment is hard.  You so often want to give up but it’s something very important in so many areas of our lives and in our world and it is so worthwhile.

I put on a huge party for Mom and Dad’s 50th wedding anniversary and I am so glad I did.  They had, and Mom still has, very fond memories of that special day.  It was the first time in my life that I took on a project like that where I had to organize an event and deal with many issues at the same time.  I was terrified I couldn’t do it but was pleasantly surprised that I indeed could manage a task like that.  Since that time I have had a number of other major tasks to organize ( like the cleaning out and renovating and selling of Mom and Dad’s house and the setting up a large, automated, school library with 25,000 books).  That first task of planning Mom and Dad’s 50th anniversary party gave me much confidence to tackle other things in my life and be successful at them and has also helped in convincing me I can look after Mom in her last years.

On what would have been their 65th anniversary, I wanted to do something special for Mom.  I did not know what to do until I stumbled upon an idea.  Mom loves flowers – not bought from a store so much but from a garden.  I had along the side of my house a lovely flower garden I had made in memory of Dad since he loved to garden.  In the morning I went out and picked a bouquet of flowers for Mom, put them in a nice vase and presented them to her as if they were a gift from Dad for his sweetheart.  I think she loved it.  I also had ( and this shows the pack rat in me) one of the picture boards I had assembled for their 50th wedding anniversary.  I brought it up to her sitting room and we had some good times reminiscing over the  pictures of her  wedding, her honeymoon etc etc.  She also had a good time showing them to her PSW and respite worker in the next couple of days.

Those special days are so important even after a loved one has passed away.  I think it is so important to recognize them and celebrate them.  For Mom I know it was a joy to her and I enjoyed talking to her about some of those old memories of times gone by.  I know that even after Mom passes away,  I will continue to celebrate her birthday, her anniversary etc etc.  It brings comfort to me and represents a kind of continuing on of memories and life histories.  It helps me feel stable in an unstable world, it brings an order to my life and keeps that order present as I often struggle to make it through the days, weeks, and months with all sorts of unsuspected things happening to throw a wrench into my life.  So next year, whether Mom is here or not,  I will be celebrating on July 12 – to honour two very special people in my life and the important legacy they left me.

Helpless and hating it…

One word we so often associate with those with autism is the word CONTROL.   We want and NEED control in our lives.  We need sameness and order, predictability and logic.    So what happens when those things disappear out of the picture and get replaced with a terrible sense of “out of control”?

That is where I am right now.  I love the somewhat whimsical word discombobulated to describe how I feel when my world is mixed up and confusing but my world right now is beyond discombobulated.  I am what some have quoted down through the ages as in the “dark night of the soul”.

Through circumstances that are happening in my life right now I feel totally helpless. I couldn’t think of a worse word to describe how I so utterly feel.

What do you do when the person you love the most in the world is dying and you can do nothing about it?  Not only that but every day, week in and week out, you watch her deteriorate.  You listen to her laments about wanting to die.  You see the  pained look in her eyes.  You see her struggle to make her body do what it just can’t do any more.  You see her fight tooth and nail what is happening to her and understand that she knows she is losing the battle.  Getting old is not pretty.  And I don’t just mean physically.  Mom complains about the wrinkles on her skin and the ugly brown spots  on her arms and hands as she calls them. She complains she can’t hear and she can’t see.  She gets so frustrated when she tries to work on the computer and her hand can’t control the mouse like she wants and all kinds of strange things happen as random things are pressed.  Then I have to come to the rescue and bring every thing back into order again.  If only I could do that as easily with her life as I do on the computer.  And that’s the problem right there.  I can’t do anything about any of this.  Not one darn thing.

I think the word helpless and all that it entails is one of the most saddest words in the English language.  The feelings of helplessness knocks the wind out of you and brings you to your knees.  Your heart aches like it has never ached before.  Watching someone struggle day after day,  knowing someone is miserable and depressed,  knowing someone feels useless and forgotten in this world of do, do. do…   What can you do when you are 89 and can’t hardly see, can’t hardly hear, and can’t hardly get to the bathroom, and can’t do pretty much anything.

I’m struggling with all this.   I keep thinking there must be something I can do to make things better.  After all, I have always been the family member that made everyone happy, and solved their problems.  What if there is no solution?  Nothing except WAIT…   Wait for life to play out the way it is to go.  And how long do I wait??  A week, a month, a year, 3 years???

Misery breeds misery.  And as I deal with the misery my Mom feels it wraps it’s twisted fingers around my life as well.  I am miserable – so miserable I am almost immobile.  I sit and rock in my chair with my blanket wrapped around me to shield me from the world I am facing.  It’s all I can do these days.  I can’t handle my life that is so out of control.  I can’t handle that there is no predictability.  I can’t handle that sameness doesn’t exist anymore.

Being a caretaker for my mother wasn’t supposed to be this difficult but the reality is that I am not the only one going through this.  Unnamed, unnoticed households across this city, this province and this country are going through the same grief and helplessness.  We privately go about our job of taking care of our loved ones and often deal privately with the pain and struggle it entails.  That is partly why I am writing this blog.  To bring a voice to those of us who chose or are forced into caring for the elderly members of our family.  And because I am autistic,  the issues can be much more intense and debilitating than for the one without autism.  Many of us have been diagnosed late in life.  I was not diagnosed till I was 50.  My Mom does not know I have autism and does not know that she is likely on the spectrum herself.  In my particular case, it is best that way.  But it brings with it a host of problems and a lot of suffering in silence.

I have a faith.  My faith keeps me going day after day.  I have the assurance that my God will never leave me nor forsake me.  I have the assurance that I don’t have to be a slave to fear because I am a child of God.  And I won’t be totally alone when Mom goes although I know it is going to feel like it for a while.  Right now, being helpless puts a whole new spin on my faith.  Being helpless, means I have to give up that need for control and trust in the God who holds all things in his hand.  It’s a tough lesson, especially for an autistic.  But I know without a doubt, with my whole being that trusting in God to look after the helplessness is the only way out of this “dark night of the soul”.  As I talked about in one of my other blogs,  “life begins at the end of your comfort zone”.   And so tomorrow I will wake up and life will begin once again and I will survive this.

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.