Vignettes of Grace and Grief – #2

Vignette #1 –    Mom has been wanting a laptop for quite a while ever since her computer crashed.  She kept asking me about it and I knew I had to get going on finding something suitable for  her.  After my concussion I was not supposed to be online but after a couple of quiet days I went online and madly researched laptops and finally came up with a model Ifelt would work for her.  I was able to get it at a local computer shop.  Today I picked it up and brought it home much to Mom’s great delight.  I knew she wanted it set up as fast as possible.  BIG PROBLEM!  I don’t know whether it has anything to do with my autism or just an idiosyncrasy but when I buy something new it usually has to stay in the box for quite a while maybe even several months.  When I bought my first digital camera it stayed in the box for 4 months before i was able to tackle it.  A few years ago I bought a new easy chair.  It took 2 YEARS before I felt comfortable in it and saw it as really mine.  I recently bought a new land line phone system- actually 2 months ago.  It is still in the box.  So….. I came home with Mom’s laptop and I brought it up to her room.  she was eager to see it.  I must say it was all I could  muster to take it out of the box.  I was so anxious I had to leave and go downstairs for a couple of hours with a cup of tea and sit and try to calm myself down.  I know I am perfectly capable of setting this laptop up.  I have done many things on the computer like install  my own router etc but for some reason ( and I believe I am just too exhausted from looking after Mom to deal with one more thing that requires a lot of brain energy) I just feel I can’t set this laptop up.  I finally got up the nerve to talk to Mom and told her my predicament.  I told her I was going to phone Staples to have someone set it up for us.  The money spent on this was far less worry that the damage the anxiety was doing to my well-being.  Mom took it well especially when she realized how anxiety – provoking it was.  But I feel like a failure.  I know I could do this.  Why does my anxiety have to again interfere with what I want to do in life?   Now Mom will have to wait while I take it in to get set up and that will take a few days.  I wanted to do it for her tonight.  I know my autism gives me many positive things in life.  I have wonderful creativity and I can think outside of the box.  I am passionate about many things and I am hard working and honest.  My passion and focus helps me to look after my Mom when it can get very difficult.  I am determined.  I don’t give up easily.  But unfortunately, with my autism also comes some difficult things like extreme anxiety and idiosyncrasies that get in the way of normal life.  I have to learn to take the good with the bad and I say bad but I don’t mean that really.  They are all just parts of me that make me who i am.  So tonight a laptop got the better of me.  Maybe tomorrow I will have victory over something else in my life.  And so life goes on…..

 

Vignette #2 –    It’s tough looking after Mom.  It’s very tough.  So tough, I often feel like throwing in the towel and giving up.  It’s often when things are at their worst that God drops a gem of joy into my lap.  Just because.  Just because he loves me.  Just because I am his child and he cares about what I am going through.  Today was one of those days.  The last few days have been extremely difficult.  I have been worried about what the future holds for Mom and I and whether I will have to put her in a nursing home and if i don’t will I be able to still take care of her properly at home.  As I was going downtown to pick up Mom’s new laptop I was reading a children’s book on the life of Maud Lewis the famous Canadian folk art painter from the East Coast.  After I picked up the laptop, I was walking along the street and went to pass by an art gallery that I have passed by for years but have never gone in.  I love art and so I decided today was the day I was going to go in and see what they had.  I went in and was surrounded with some beautiful paintings.  Then I noticed a display of 2 paintings (prints not originals) of Maud Lewis’s.  Apparently there is an online auction to auction off 2 of her paintings.  I showed the owner of the store the book I had been reading on the way downtown.  Then he asked me a question that just about bowled me over.  He asked me if I wanted to see the originals!  Would I!!!!!  I was so excited.  He brought them out and I gently and gingerly held them and drank in the beautiful colours and scenes of the two paintings done by a little old crippled lady who for most of her life noone knew anything about her.  She lived in horrible poverty but painted such joyous paintings.  As I held her art work I wondered about what she thought about as she painted.  So today God did indeed drop a gem of joy into my lap, one I could never have imagined receiving.  God must have fun planning what he does for his children to bring joy into their lives.  In the vignette above my anxiety was so great and in this vignette my excitement was so great I had to take medication to calm myself down.  My life has ups and downs so steep that it takes my breathe away.  Sometimes I wish for more gently rolling hills of experiences but I take it all in stride.  My life is definitely not dull.

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.

My Apologies for no blog

I have not written a blog in almost 2 weeks.  It has been a very difficult 2 weeks where I have felt like I was literally drowning in my grief, my anxiety and my responsibilities.  I also came down with very painful mouth ulcers (blisters) that are probably a result of the stress I am under.  Thankfully they are mostly healed up now and although I still feel I am struggling in violent waves that continue to crash over me, my head is above water for the moment.  I am hoping to write a couple of blogs in the next few days.

In a Twinkling…

A couple of days ago I went to one of my favourite places to shop – Value Village.  For anyone who is not familiar with this store it is a second hand store selling everything under the sun.  It is a mecca for treasure hunters and a big part of the fun of going is in the hunt itself.  To find that elusive item that you just never thought you would ever find, or that unique item that winks at you and begs you to take it home with you.  Well, I was looking at the jewelry when I spotted a silver bracelet.  I love silver jewelry and as I looked closer at it through the glass counter I saw the words ” Kate Spade New York”.  I love Kate Spade things but I can’t afford them so I just drool when I look at items in a store.  Here was my chance to have a real Kate Spade item and for the super price of 7.99 ( and I had a 30% off coupon).  Can’t get any better than that.  When I got it home and took a closer look, I realized it had a saying inside the rim.  It said “in a twinkling”.  How interesting I thought considering what I have been going through.

All my anxiety, grief, worry, heartache that I am experiencing daily these days is all wrapped up in that little saying,  “in a twinkling”.  When Mom takes her last breath on this earth, in a twinkling she will be whisked off to Heaven and in that same twinkling, my life here on earth will change forever.  It’s hard to believe that a mere moment in time can change everything!

I wonder every day what it will be like without Mom.  I also wonder how I will handle Mom passing.  Will I fall apart?  Will I act as if nothing happened and just stuff everything inside and move forward with my life?  Will it be a bit of both?  Will I react right away or will it be days, weeks, months later?  I’ve read some research on autism and grief that states that we often have a delayed reaction to our grief.  Will that be me?

A number of years ago, I had a very special childhood friend who I called my Aunt Agnes.  She was not my real aunt but a distant relative just the same.  I loved her to bits and loved to visit her.  When she died I was living hundreds of miles away and I invented an elaborate scenario in my mind of how she was not dead.  I believed this with all my heart for several years till I ended up in the hospital for depression and suddenly and unexpectantly it all spilled out.  I cried for days and days.  Am I going to do something like this with Mom?

I also have a habit of closing myself off when I am upset.  I don’t answer the phone, I lock the front door and basically retreat into my own world.  This is my greatest fear of what might happen when Mom dies.  I told my Doctor the other day to please, please not let me do this if it happens.  She said that for me it may be alright for it to happen for a little while but she would be there to help me reconnect with the world if I couldn’t.  It scares me.

I also worry if I will be able to do all the things that need to be done for the funeral etc.  When my Dad died my Mom was there to help me but I won’t have her this time round.  I am determined to speak at her funeral just like I spoke at Dad’s.  Will I be able to get something together to say?  Something that is honouring and loving and will bring a sense of legacy and meaning to Mom’s life?

How can a moment in time be so scary?  That “in a twinkling” is the stuff of nightmares for me.  But I guess I have to think that for Mom that “in a twinkling” will be the stuff her happiest dreams.  “In a twinkling”, she will no longer be in a body that does not do what she wants it to do, she will be free to walk without weaving and stumbling from the effects of the stroke.  She will have no more headaches and she will have her “new” head she always tells me she wants.  She won’t be an “old lady” that she despises being so much.  Best of all, she will be again with Dad and all the other members of her family that loved the Lord.

But “in a twinkling” I will be left alone here on this earth.  And I dread that moment with every part of me.

So back to the bracelet…  I am wearing it.  I am going to continue to wear it.  It is a daily reminder of what is to come but it is also a daily reminder of another “in a twinkling”.  One later, sometime down the road when I too, will in a twinkling, go to be with Jesus and I will see Mom and Dad once again.  This bracelet can be a symbol of hope if I choose it to be.  It’s all how you look at it.  Momentary pain for eternal gain.  And what I do after that “in a twinkling” that whisks Mom away from me will determine what the time between those 2 twinklings is going to be like.  I want to continue to live my life to the fullest.  I want to try new things.  I want Mom to be proud of me in how I handled myself.  I want God to be glorified in my life that I have left.  I want to help people.  This girl has plans…..lots of plans….. that will be for another blog!

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!