Who is the Parent?? – Part 2

I had to come back to this topic and add a Part 2 because several of my friends objected to part of my blog and after thinking about it I have to agree wholeheartedly.  In my recent blog “Who is the Parent??”  I wrote, “I am only a custodial parent. A taking-care-of parent”  I was reminded that in taking care of my Mom I am much more than that.  I do not just take care of the everyday mundane things like meals, laundry, medication, trips to doctor’s offices etc etc.  No, I am really much more than that.  Not that I relish this role, it just comes with the job of looking after someone you love so much and someone you want the very best for.  Not only am I am “custodial parent”  but I am also the guardian of her emotional life, her psychological state.  I am the mother whisperer!  I am the soother when she is anxious,  or upset.  I am the one who sets each day out for her – telling her what will happen that day – what appointments we have, where i have to go, who is coming in to stay with her.  I often have to have what I call Mother-Mother talks with her when I have to go over what she needs to be able to do to stay at home with me – like drink her water, exercise, be able to get to the bathroom, etc etc.   I recently had to have a very heart to heart talk with her when she didn’t call me or push her life line button after she had fallen because she didn’t want to bother me.

Mom is very likely depressed although she would never admit it.  She is often despondent and talks about how she feels useless, and worthless.  She is in a lot of discomfort with the effects of the stroke she had many years ago that are now getting worse.  She often cries, moans, tells me she doesn’t want to be here.  It is at these times I have to step in like she used to do for me many years ago and try to instill hope, worth and love into her battered self.  It is not easy to watch her like this and I think back to the many years I struggled and what she must of felt and struggled with herself, as she only wanted the best for me, just like I want for her.

I am the encourager.  I bring her flowers either from the store or from my garden.  I bring or make her treats to encourage her to eat.  I watch movies, TV programs with her that I really don’t like to keep her company.  I listen, I hug, I tell jokes.  I buy her an new outfit.  I bring her a book she might like.  As she gets more and more frail it is becoming harder and harder to find things to bring meaning to her life.

Mom and I are connected very intricately.  Our emotions are all tangled up together like the many tentacles of two octopuses intertwined.  If I am upset about something, Mom gets upset.  If Mom is upset, I get upset.  We set each other off, alarm bells ringing.   If I am upset about something I have to be so careful not to let her know.  Thank goodness for my “girlcave” in the basement where I can go and cry and scream and pray and Mom cannot come or hear me.  It is truly my sanctuary, my place of refuge where I crawl into my yellow easy chair and imagine I am in the arms of God.  There is a song I often listen to  by a christian music group called Casting Crowns.  It is called “Just Be Held”.  It is a call by God to just come and be held when times are overwhelming and too hard to bear.

During this time of being an emotional support to Mom I have to try very hard to take a step back and not be intertwined with her.  I need to be separate in order to relate to her in a way  that  does not bring in  past hurts, anger, disappointment etc.  This is difficult because it is so easy to fall back into old patterns and old feelings.  For me that time has to be set aside and I need to focus on what Mom needs in a pure and simple way.  In the three years Mom has been with me,  God has healed many of those hurts, anger and disappointments.  They have not entirely disappeared but it’s like there is a glass wall up between them and my present relationship with my Mom.  Her sharp comments, her occasional hurtful words do not have the same effect on me anymore.  I can only say that this is healing from God and I am so thankful for this.  To know that when Mom passes on, I will have no regrets is truly a priceless gift from God.

So yes, I am much more than a “custodial parent” to my Mom.  I am her encourager, her soother, her comforter, her reassurance, her security, her needs filler, her information giver, her window on the world, really, I AM her world….

……..just like when I was little she was MY world.  And the wheels of life keep turnin’.

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.



Speaking for Autism

Today I spoke at a teacher conference on autism at my local school board where I had worked.  I told my story of living with autism.  I felt very honoured to have been asked.  It was so nice to see familiar faces of teachers and educational staff I had worked with.  I realized how much I miss being back in the school system.  I also realized how much  I missed speaking.  I had been doing more speaking before I retired but none since.  I love speaking.  I must say though that although I do not get very anxious beforehand I have a wicked time afterwards.  But I figure that’s just par for the course.  I just took it easy tonight and spent lots of time with Mom since I had been away most of the day.  I worried about her as usual when I am away.  I worried about what I might find when I came home.  I did have a respite person in for the afternoon so I could relax a bit then but I kept my phone around my neck all day.  Mom has been having more shortness of breath lately and she seems quieter, more in contemplation.  That worries me too.  I worry that if I forget to say “I love you” before she goes to bed she may die in the night and I wouldn’t have said it to her.  I guess I worry alot about her.   Tonight she was commenting on her birthday balloon which is still floating in her sitting room.  She said it might be her last birthday.  What do you say to that?  I said yes, it might be but then it could be my last day on this earth too.  None of us knows when our last breath will come.  This is heavy stuff and it makes my heart heavy, and my shoulders heavy like the weight of the world is on them.  The weight is unbearable sometimes.  I feel I will crumble.  But you gotta keep going.  So I joked with Mom tonight.  Tomorrow there are no buses with it being Good Friday so I will be home all day.  I asked Mom what she wanted to do.  I suggested roller blading or square dancing.  That got a laugh.  And so life goes on…

Today is Mom’s Birthday!

Today was Mom’s 89th birthday!  She seemed to thoroughly enjoy herself.  To give a bit of background – my Mom moved in to my home over 3 years ago.  She had been in a Retirement home but it was so expensive and she was not taking advantage of all the home had to offer.  She is much like a hermit and stayed in her little apartment most of the time except to go out for meals.  I have been adamant that I did not want Mom to go to a nursing home so now she resides at my nursing home which is basically what I am running at this point.  I look after her meals, her finances, her laundry, basically everything in her life.  I chose to do this and I do it willingly and with a grateful heart but it is, I believe, the most difficult thing I have ever had to do in my life.  Being a caretaker to an elderly person is hard for most anyone but when you add autism into the mix it is like a living nightmare every day.  Today was a happy occasion but for me it was also a very difficult day.  I have been close to tears often because when you are looking after someone who is deemed “palliative care”  you do not know what the future holds.  Will there be another birthday or is this the last one she and I will celebrate together?  Every special occasion is tinged with apprehension of “what if?”  I hate being in this state.  We autistics like to know exactly what is going to happen.  Uncertainty is not a word we like.  But uncertainty is my new reality and it is slowly sucking the life out of me.  Today also was tinged with anniversary grief.  6 years ago today my Dad was transferred from the main hospital to another hospital where the doctors had great hopes that he would recuperate well and be able to go home. Just over a month later he died.  I am one who holds onto dates and events and they constantly shuffle through the year.  My unconscious mind even remembers when I forget.  I will start crying for what seems no reason at all till suddenly I remember – oh, yes, this is when that happened.  Right on cue every year my mind unleashes its memories to my utter dismay.  I must interject here to say that good memories are unleashed too.  Like the day I got my new cat or the day I started my job 33 years ago.  So perhaps I can slide this day – my Mom’s 89th birthday – into my mind as a good memory cause it was a great day overall.  A day we laughed together, reminisced together and celebrated together!  Happy Birthday Mom!

First blog post

Thank you for visiting my blog.  I am just in the middle of setting it up and I am navigating a whole new world doing this.  Please be patient with me as I set up my site over the next couple of days.  It is definitely a work in progress.  I look forward to sharing my journey with you and hearing your comments as I go forward.  L J.