Recalculating!

Lately, on TV, there is a car commercial that keeps repeating the word “recalculating”.  As I heard it being repeated I sudddenly realized that this word sums up my life these days.

When you are dealing with someone in palliative care there is no constant state, it is forever changing and usually not for the better.  At least not in the long run.  The thing is – my Mom may seem like she is on the way out one day and then she wakes up all cheery and fine the next morning.  Meanwhile I have spent an agonizing night thinking I am going to lose her at any moment.

It’s like being on a yo-yo.  Someone is whipping you back and forth sometimes at top speed that makes you dizzy and sick to your stomach and then once in a while a yo-yo trick is thrown in just to complicate things.

This past week I had an electrician come to the house to do some very minor changes on two outlets.  In the course of turning the power off and on a couple of times it just happened to knock out Mom’s chair lift – the one that goes up and down our stairs and cost 10,000.00 to install.  A fluke.   I call the company I bought it through and was told you could not get parts for it any more and they would not send out a technician to my house.  It is less than 4 years old.  So I RECALCULATE…..   what do I do now??  I am in a new reality of crisis proportions since now my elderly mother is trapped on the top floor of my house.  Fortunately after a day of extreme anxiety the electrician and another company were able to get a replacement part and it is now working again.  RECALCULATE….

I go with Mom to the doctor hoping to arrange for a palliative doctor to be assigned to Mom’s case.  RECACULATE… no such luck.  She’s apparently not imminently palliative so I am just supposed to keep calling and leave messages to the doctor when I have a problem.  And wait….

Mom was taken off one medication for her diabetes.  She was put on another one and reacted terribly to it.  I thought I was losing her.  RECACULATE….  Acting as doctor for my mother I call and tell her other doctor that I think she is reacting to the medication and she should come off it.  Doctor agrees.  Now her blood sugar levels are screwed up and I must every night RECACULATE to hopefully get the dosage right so her levels don’t spike.

Mom is getting weaker.  She needs more physical supports to get around.  I buy a new tension floor to ceiling pole to put in her bedroom so she doesn’t fall like she did one night.  She loves it and it is helping her.  I need to RECALCULATE…. I’m not used to her having a pole almost in the centre of her room and I bang into it every time I’m in her room.  I’m clumsy at the best of times.  This will take some extra RECALCULATION…..

I now have 4 hours respite every Sunday morning so I can go to church and not worry about Mom.  This is all fine and dandy until I realize that every sunday morning now I have to make sure the kitchen and living room is tidy, instructions are given, food is left ready, etc etc    RECALCULATE…..

Are you getting the picture here??  Everyday there is something that happens that I have to physically or emotionally or both RECALCULATE to care for Mom.  RECALCULATE = CHANGE.  I don’t do well with change especially when it is happening constantly and often at top speed.

And change is most difficult when it concerns what is directly happening to Mom.  I am in constant limbo about her condition.  Is she getting worse?  Will she bounce back or is this the new normal?  When she feels horrible at night will she be alive in the morning?  When the fullness comes in her chest and down her arm is she likely to suffer a heart attack?  When? So I RECALCULATE… thinking I am going to lose her.   No, false alarm.  Maybe something she ate.  RECALCULATE….

That word RECALCULATE is my new norm.  My new reality.  Except RECALCULATING means my new reality changes every time.  My head spins sometime.  My heart sinks lower and lower.  RECALCULATING is exhausting and highly anxiety producing.

I’m not exactly sure what the car commercial is all about concerning the word recalculating but one thing I do know.  Recalculating a car is very different than recalculating life with your elderly mother day in and day out.  There is no manual.  There is no guide.  This is uncharted territory and I am terrified.  The road has so many twists and turns and potholes and bumps that you just hang on for dear life.  You just grip the steering wheel till your knuckles are white and you RECALCULATE…. Again…. and again……and again……

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.

Mom’s Wish – My Loss

Today was Dad’s birthday. I wonder if they have balloons in Heaven?  He would have been 89.  He would have caught up to Mom who was 89 in April.  Mom was the first to mention it this morning.  I sang a lively rendition of “Happy Birthday” to Dad much to Mom’s delight. ( I am know for my serenading people on their birthday with various renditions of “Happy Birthday” including the Hallelujah chorus rendition!)

I have been getting more and more worried about Mom.  She looks so sad and dejected.  She sits in her chair with her eyes closed or just stares off into space.  She is not having good nights, often up with trouble breathing and not feeling well.  I have been going to bed myself wondering if she will be awake in the morning.

Tonight was an especially hard time that has catapulted me once again into hyper-vigilance with hyper-anxiety.  I asked a simple question I have asked her a million times.  ” Is there anything you would like, Mom?”  I’m usually referring to some food she might like.  This time though her answer took me by surprise.  She said, ” I want to go home.”  ( home meaning Heaven).  My heart quickened in my chest and my stomach felt like I had just been punched.  I replied, “I know you do Mom.  Although I want you with me forever, I know you want to go home.  I can’t be selfish here.  It hurts me to see you suffer and be miserable.”

What transpired next was a half-hour conversation where she asked me a number of questions like how much was left to pay on my mortgage,  what would I do for income that I would not be getting from her monthly stipend etc etc.  I got the feeling she was wanting to know I was going to be alright without her.  I assured her I was going to be alright.  I had a few close friends, a church family that I felt closer than I ever had before, I was going to be an Aunti to a new little adopted girl who I adored by my best friend’s daughter, I had my brother, my “belle-soeur” ( my sister in law) and my wonderful niece and nephew and my cats.   I told her I was trusting in God to look after me and provide all that I needed.  ( she does not know I have autism and when I said this I knew I was trusting God for a lot more than what she might think.  I was basically going to be alone.  I had already a hard time coping in the world.  I knew trusting God was going to be key for me to my being able to keep going in this world as someone with autism)  I then showed Mom the ring I had bought but had not shown her yet – a silver ring with 2 hearts and an infinity symbol band on the ring – symbolizing mom and me being together forever.  She was quite interested although I don’t think she grasped the significance the ring had for me.  I am very sentimental and I have many, many things that have special meaning to me.  Things in my life are given meaning I think to help ground me and help to keep real the parts of my life which are no longer tangible.  Memories are cemented in my mind by a thing that I attach a meaning to.  Unfortunately, it means I have a lot of things in my life.  Sometimes people don’t understand my attraction to things of all sorts.  They help glue all the pieces and memories of my life together.

So back to our conversation… We continued talking for a while and then just sat quietly with each other, the cats joining us in the bedroom.  We were all together my little family.  All I could think about was what was going to happen?  Was Mom going to die tonight?  I don’t know.  She may surprise everyone and live another several years or she indeed may go tonight.  I just know that these episodes put me in such a state of hyper-vigilance for days until I think the danger is over and things resume a calmer state.  This wreaks havoc on my whole system.  Everything goes haywire – my eating, my sleeping, my ability to concentrate, to look after the house and all the other things I have to tend to.  It exhausts my already exhausted frame.  I feel shell-shocked.  I feel physically sick.  I cry.  So now as I am writing this I wonder – will I be able to get to sleep tonight?  I don’t know but will probably need to sleep part of the night in my easy chair wrapped in a blanket, my knees tucked up under my chin.

Mom’s wish.  A simple wish to go home.  We all wish to go home when we are away.  I can’t deny her that.  But Mom’s wish come true means my loss.  Am I selfish? Yes, indeed, at times I am.  I want her here with me – always!  My loss will be overwhelming, immense, unfathomable, almost unthinkable.  But my loss will come just the same.  There is no control here, no say.  Just loss.

As I am typing here, Mom is asleep in her room.  I just heard her cry out “Lorne!”  That’s Dad’s name.  Oh, how she misses him.  She needs to go home.  I must say goodbye soon.  I must loosen the grip I have on her life and let her go.  And accept the loss.  Wishes are more important than losses.  Wishes are often the result of losses.  I wonder what wish will come forth from my loss.  Tonight ( or in the days ahead) a wish and a loss rest in the heart of God. A God with a heart big enough to make any wish come true and any loss to be cut down to a size that is not overwhelming or unbearable by His great great LOVE.

I Give Myself Permission…

I am what you might call a driven person.  I have to be doing something, I have to be achieving something,  I have to see progress, I have to see results.  I am a person who lives with lists of to do items.  My world is formless, and empty unless I make a list every morning.  Then my day has substance and boundaries around it that I can see and understand.  I don’t always have to cross everything off the list – I just have to have the list.  But…. I am driven to get as much off the list as I can.

I feel like I can’t waste a moment of time.  Watching TV ( I mostly watch the news) has to be watched while doing something like flipping through a magazine, or updating my budget, or writing another list.  I love reading but I have a terrible time reading fiction.  I can’t allow myself the luxury of just reading for the joy of it.  I mostly read non-fiction where I will learn something.  Then I feel I am being productive.  I am working on this.

I worked in the school system for 33 years as an Educational assistant with special needs kids.  I worked all day, then often did things in the evenings, on weekends and holidays.  I go overboard with almost everything.  I love it this way,  I feel productive, worthwhile and accomplished.  When I retired 2 years ago, the first year was hell.  Not having the routine of going to work every day was so disruptive for me and foreign to my way of life for so long.  I had lost a big part of myself.  My saving grace was getting a job at the public library and at a Teacher’s Resource Centre.  I also  took over the library at my church.  These things kept me busy and feeling like I was still productive.  I also delved into doing projects around the house.  Anything to keep me going.

Of course, looking after my Mom was a huge part of my daily routine.  As she started failing more and more,  my stress level went higher and higher.  The physical duties of looking after her were not as overwhelming as the emotional stress of dealing with the fact she was failing and could leave me at any time.  I got more and more exhausted.  I tried to ignore the exhaustion and keep up a rigorous schedule.  I became more and more anxious and depressed and the exhaustion deepened.  I fought back with just upping the ante.  More jobs to do, more tasks to carry out.  Stay up late, get up early.

About a month ago,  I had an issue where I spiraled downward emotionally.  I withdrew from everyone, locked the front door, closed the curtains and did not answer the phone.  I basically curled up in my rocker-recliner with a blanket over me and hid from the world.  This went on for over a week when I finally surfaced and felt I might just be able to face the world again.  The curious thing though that happened was that even though I was back being with people and engaging in the world around me again I still found myself curled up in my easy chair a lot of the time.  When I wasn’t directly involved in looking after Mom or having to go out to work or run errands, I would retreat to my chair with a cup of tea and just rest.  At first I thought I was maybe getting depressed and I was worried but then I realized that I was actually feeling better.  I wasn’t zooming around at top speed and I didn’t seem to be distraught about it.  I was seeking out my chair more and more and relishing the time spent doing nothing.  This was so foreign to me but a relief somehow.

I know that I am totally exhausted both physically and emotionally.  I know I am in a critical state of overload.   I know that if I am to continue to care for Mom something drastic has to happen or else I will not make it.  Yesterday while talking to a friend about my resting so much in my chair I blurted out words I never thought I would hear myself saying.  I said to my friend, ” I am giving myself permission to do nothing!”  I think I shocked myself as much as I shocked her.  I have never voluntarily given myself permission to do nothing without dealing with the fallout of anxiety and self- hatred.  But when you are at the end of your rope,  your world view can change drastically in order to survive.  And for me to survive looking after Mom, I need to do a lot of NOTHING.  It’s very freeing to give yourself permission to do something even if that something is nothing!

I feel a bit like an earthquake just hit my world view.  Things are shaken up for sure.  This is new territory for me and certainly not completely comfortable yet.  But I want desperately to be able to continue to look after Mom in a healthy way  so as the dust settles, I am going to continue to settle into my easy chair or my hammock chair, sip on a cup of tea, maybe flip through a magazine or enjoy one of my cats on my lap and I am just going to rest.  And maybe, just maybe I can get through this time in my life without disintegrating or collapsing.

I challenge you to say those words, ” I give myself permission…..” and fill in the blank with something in your own life.  It will be a challenge but I believe it will be a positive experience for you, a ticket to move ahead in your life and leave negative patterns behind.  What could be better than that?

I look at my cats and see how they live without a care ( except when their next meal is coming and are they going to get their treats today?)  I want some of that serenity and bliss I see as they snooze in a patch of afternoon sunlight.  I want that ability to give myself completely over to relaxation and rest.  I wanna be a cat, but since I’m not – I will take a lesson from them and do my best to find a way to enter into a rest that will keep me going on this difficult and exhausting  journey with Mom.