Anticipating Discombobulating!

One of my favourite words in the English language is the word “discombobulate”.  It has it’s origins as an early american slang word that means to confuse, disconcert or befuddle.  It also means to cause to be unable to think clearly.

I think I first really came to appreciate this whimsical word when I was working with 2 little autistic girls in kindergarten.  The one little girl would emphatically complain, ” I’m discombobulated!!” whenever she was overwhelmed or confused.  It was the perfect word to describe how she was feeling and it has become my go to word when I also am confused or overwhelmed.  The way it bounces around on your tongue is exactly how my brain feels as everything is bouncing around in my brain.  Thoughts are pinging back and forth with no rhyme or reason.

I think this is a wonderful word for us on the autism spectrum.  It so thoroughly describes how we feel when too much is coming at us, when we are totally bewildered with the world around us.

I have found myself saying this word a lot lately.  It seems my world is ever changing and confusing and as a result I am totally discombobulated.  Let me give you an example.

My elderly Mom fell last week and she is getting steadily weaker.   She told me the other day while crying,  that she didn’t think she could get to the bathroom by herself anymore.  I went into hyper-alert mode where I felt something had to be done to address this new state of affairs.  I asked for more PSW support,  I asked for volunteers from my church to help stay with Mom while I did errands because I did not think I should leave her alone.  With some people lined up I felt more secure in thinking I had tackled the problem and Mom would be safer.  The next day Mom was in good spirits and told me she could get to the bathroom by herself – thank you very much!!  So this is where I suddenly get very discombobulated.  The whole scenario has changed.  What happened to the way she was feeling the day before??  How do I plan for Mom’s care when things change so drastically from day to day??

I have learned that this is the new normal state of affairs – total discombobulation!  I never know which Mom is going to wake up – the weak, struggling mom or the confident, cheery mom.  And how do I look after her effectively when each day has the potential to be so different?  I have had wise advice that I just go with the flow and do my own thing like I have always done.  Continue to do errands when she is napping, get her to go to the bathroom before I go out, remind her she has a lifeline she can activate and that I always have my phone on me.

Even though I love the word “discombobulate” I detest how it makes me feel.  It’s like living with pain in your brain.  It’s like you are walking on jello.  Everything is all wiggly and jiggly.  Nothing is for certain or stable.  Not a fun state to be in.  Looking after Mom is often so discombobulating which just adds to the stress I am under but it’s all part of the journey I am on.  Travelling along the road of Mom and me together and suddenly you hit a mess of potholes and you bounce around like those ping pong balls in a bingo machine. And let me tell you,  our roads are full of potholes especially this time of year.

Well, so I am anticipating more discombobulation.  Comes with the job description.  It’s a small consolation to at least have fun saying the word when I am in that state.  DIS-COM-BOB-U-LAT-ING!!!!!

Birthday Mission Accomplished

I wrote my last post 6 weeks ago – far too long to be not writing.  Unfortunately it has been a very tough 6 weeks and the last thing I felt like doing was writing.  I did not want to think about grief, I did not feel like talking about my feelings.  I wanted to be in a fog, in some never never land.  I wanted to just be on auto- pilot all the time and not deal with life.  But life has a way of going up and down,  being good and bad.  The last 6 weeks were very bad but now its not so bad.  I say that almost whispering it, for fear of what might happen if I said it out loud.

I want to go back and tell you about Mom’s 90th birthday celebrations.  They couldn’t have been more perfect!  Both days, the day of the party and her actual birthday were beautiful sunny days.  Mom felt very good on both of those days which was a blessing.  I managed, despite living in a fog, to pull everything together and put on a real nice time for Mom both for the party and for her luncheon on her actual birthday with her childhood friend who is now 94.  I did not think I could do it but I managed.  Mom was in her glory!  For one of the very few times in her life she was the one we were honouring and she lapped up every bit of the attention bestowed on her.  It was wonderful to see.  It felt good to really treat her like a Queen.

I must admit though that I sensed a shadow over things as the celebrations were happening.  I had this nagging feeling that things were going to change once she was 90.  Unfortunately, my nagging fear is coming true.  Ever since she  turned 90 she has been steadily going downhill.  I don’t understand it except to suspect that somehow in Mom’s mind, 90 was the turning point.  Or perhaps I should say the point of no return.  She used to always say she was going to live till she was 100.  Now she does not say that. Instead, almost every day she talks about how she is not going to live much longer.  She’s 90 now she exclaims.  She’s not going to live forever.  So I am watching her decline before my eyes and I can’t quite catch my breath for the fear that is rising in me.

Last night she fell.  Hard.  But my 90 year old mother has bones of steel.  She is my Wonder Woman.  She says she is not even sore.  Her crashing to the  floor woke me out of a dead sleep.  She just missed cracking her head on the corner of the wall.  It ‘s like an angel just lowers her down between the furniture and other obstacles so she does not hurt herself.  The problem is trying to get her up.  She does not like me calling the paramedics so she stubbornly tries to get herself up into her chair.  After much struggle and several puffs of her nitro spray she managed to do it with the little help I could give.  She sat there for a few minutes while I sat on her bed and then she looked at me and grinned.  Oh, she is a stubborn lady.

She may be alright.  No bones broken.  No head injury etc.  I should rejoice right??  During the time I am helping her I go very calm and methodical.  I have heard that those with autism often do this.  I become almost robotic like.  But it’s after that I fall apart.  I can’t sleep.  I fret and worry about her falling again.  I wonder what this means in the whole scheme of things.  And the fear of losing her ramps up a few notches like I just turned up the sound on the TV so it is blaring in my mind.

Is it all down hill from here?  Was 90 the magical date where everything starts to change?  Mom said tonight as she was crying in bed, ” I feel myself going downhill more and more all the time”.   I stroke her hair like I would a child and I can think of nothing to say except that God will look after us.  He always has, He always will.  I give her a kiss, tell her I love her and turn out her light.  I close the door to her room and fight back tears.  Grieving is not easy but it is comforting to know that you don’t grieve unless you first love.  Grieving is the expression of that love.  I love my Mama so much.

But whatever happens from here on in,  the birthday mission was accomplished.  She reached her 90th birthday – a major milestone for her.  And we did it in style and grandeur.  After all,  there may be a Queen in England but Mom is the Queen in my house and life.

Stepping Back

When someone is sick in our society, we do everything in our power to make it better.  Our survival instinct is very strong and our whole health care system is set up to “cure” the sick.  I hurt my back a couple of days ago.  All I wanted to do was to make the pain go away, to be back to full mobility again, to do everything I could including icing, heat, exercises, rest, visiting the Emergency department, medication anything, ANYTHING…. to make it go away.

Looking after someone who is in palliative care is like doing a total 360 degree turn in thinking.  You literally have to rethink everything you believed about health and getting well.  Instead of fighting tooth and nail and forging ahead like a bull with it’s horns ready to fight, fight, fight….  palliative care requires us to step back.  To take off the boxing gloves and don gloves of the softest cashmere to caress and comfort instead of fight.

To my autistic brain this doesn’t make sense.  It’s not logical.  When you love someone you must do everything in your power to keep them, to preserve them.  To me it seems like giving up.  I’ve spent my whole life having to fight to keep going, to survive that to suddenly step back and just let nature take it’s course is as foreign as being on the planet Mars.

I have to admit I am having a real hard time with this.  I have had several conversations with the palliative care nurse about her blood sugars or her not exercising or not drinking enough water.  She has to each time gently remind me that this is not about these things any more.  This is about keeping her comfortable, and letting her make her own choices about how she wants things to go.  I listen but in my head I cry out NO, she has to do these things.  I can control what she eats, I can control whether she does her exercises.  You are telling an autistic she has to let go of all control.  Stepping back is a huge NO NO.  An impossibility.  Not logical.

How do you let go of someone you LOVE?  I know, I know, I have heard the saying about if you love something you let it go and something about it will come back to you BUT… Mom is not going to come back.  She will be GONE.  I want to cling to her, hold her so tight and NEVER let go.

Stepping back is like turning your back on all that you care about.  I feel like I am standing high in the air on the very edge of a diving board.  I step back and I spiral down and crash into the water sinking deeper and deeper.  I can’t breathe and I struggle to find my way in a strange watery world to a world that makes sense to me and I can breathe.  But I can’t make it to the surface.  I’m drowning, drowning in sorrow and loss.

Stepping back is the new reality for me now.  I have no choice.  The only choice there is, is to keep Mom comfortable and happy.  So can I somehow, turn my fight into fighting to do this in the very best way possible for her.  I think that will be my new goal.  That is the only way I can see to go through this and not drown in the process.  My mantra will be “comfortable and happy”.  I have to let go of the old way of fighting and embrace this new way of fighting for my Mom.  The only thing that’s different is that there is no winner.  And the grief goes on……

A Dreaded S-word!

OK, so I know what some of you might be thinking after listening to the weather report tonight but the dreaded S word is NOT SNOW!!!   Wish it was though, it would be a lot easier to handle than my S word.  STRESS!!  It’s actually got 3 S’s in it just to get the point across loud and clear!

STRESS – my main bugbear when it comes to being a caretaker of my elderly mom.  Every part of my being is stressed.  My body, my mind, my very soul.

My joints have started aching again after several years of very little pain.  I feel sick most of the time.  I have headaches nearly every day.  I clench my teeth, grind my teeth and tap my teeth together making a clicking sound.  I pace.  My restless leg syndrome is in high gear making life miserable.  I get every bug around it seems and they settle into my system for the long term just rearing their ugly head every couple of weeks or so after I think I am free of it.  Perhaps the most persistent and deep symptom is the exhaustion that permeates every part of me and never leaves.  It just gets worse or worser ( I know that is not a word but I’m going to take writer’s liberty here)- never better.  It just seeps into me like a tea bag left in a mug of hot water for ages.  It gets stronger and stronger.  I sit down to read a book or drink my tea and wake up 2 hours later.  For the life of me, I don’t even remember feeling sleepy.  Noise bothers me more,  going to the mall is too much sensory overload now. ( that’s a good thing – less spending I hope)  Smells of all kinds are overpowering and too much light overwhelms me.  People overwhelm me.  The stress of having PSW’s coming and going and the nurse coming and constant assessments being redone on Mom  just makes my head spin.

Emotionally,  the stress of looking after mom is debilitating.  It is eating away at me everyday and more and more of me is consumed by everything from remembering to give mom her pills to doing the laundry to changing appointments to even changing lightbulbs.  Tonight I came home from work to find that the light in the bathroom was out – the one that Mom uses only.  We leave the light on at night for Mom to see cause the hall light is too bright.  I panicked and immediately wanted to crumple to the floor and cry and cry.  Too much.  Too much.  After a couple of hours of thinking about it and knowing I had to do something about it before us going to bed, I went and looked in my stash of light bulbs, praying that the right kind would be there.  IT WAS!!  The bathroom light is now on and a major meltdown has been averted.

Sounds silly but that’s the effects of all the stress on me.  I guess perhaps the most costly stress is the fear of losing Mom in the future sometime.  I think I get used to the idea of losing her and am resigned to it and then some little thing like Mom having a bad day will put me into panic mode again.  One of the things that all this stress has created is a compulsion for me to buy things – anything.  I just want to buy, buy, buy.  It’s like LOSS is an actual entity creeping towards me over a hill and I see it coming and I grab every THING I can buy, find, and gather them around me to protect me from the LOSS.  Unfortunately,  this has put me in a very precarious financial situation.  But what do I do??  I can’t seem to stop.  We as those with autism love our things and for me that is what I go to instead of people.  I am stumped as to what to do and this causes just as much stress as the stress of losing Mom.

So there are layers and layers of stress all piling up on one another, weighing me down more and more till I feel I will be crushed under the weight.

And then….and then….  I noticed my cat today looking a lot thinner.  I believe he has lost quite a bit of weight.  And he is always licking himself and he goes and hides to sleep.  And he cries when I go out and even if I go upstairs and he is still downstairs.  MY CATS ARE STRESSED!  Both of my cats are showing signs of being very stressed.  What do I do about THAT?  If something happens to one of my cats that will be the last straw.  I can’t bear to lose one of them right now.

What am I doing to help with the stress??  Well, a number of things but they just seem to take the edge off for a short while just enough so I can still function each day.  I take medication, I spend lots of time rocking in my easy chair or swinging in my hammock chair in my bedroom.  I drink tea,  I go out with my friends ( one at a time).  I see my wonderful grief counselor, I talk to my psychiatrist, I sleep, I go for walks and do some photography, I cry, I scream, and most of all I rest in my great God who I know will see me through this despite all this stress.  God has an S word too.  His word is SUFFICIENT.  In the bible it says,  “My grace is SUFFICIENT for you, for my power is made perfect in weakness.”  I read this every day.  It is my secret source of strength (SSS) and the ONLY way I get through each day.  God is my ENOUGH when everything else is lacking.  When my bank account is empty God is sufficient,  when my energy tank is empty God is sufficient,  and when my ability to handle the stress in my life is at empty God is sufficient.  God didn’t say life would be easy but he said he would be there for us.  God has given me the job of looking after my Mom so I have to believe he will give me what I need to do the job.  He promises he will and I trust in that.

Mom’s Theme “I’ll Do It My Way!”

Image result for frank sinatra quotes my way

Mom’s name could very well be Francine Sinatra, the female equivalent to Frank Sinatra.  I’m sure her new outlook on life at this time in her life is “I’ll do it MY way!”.  She is exasperating sometimes.  I never realized that Mom was so stubborn.  Now I know where I get it from because I am about as stubborn as they come.  I guess as I was growing up Mom was kinda the boss of the family so she got to do what she wanted but now as she is a frail elderly woman at a time in her life when most decisions are taken out of her hands and she has little control over her deteriorating body she has resorted to resisting anything and everything that is asked of her even if it is for her own good.

Mom is like a rebellious kid and all I can do is look on with exasperation and let her do her thing.  It’s the last bit of dignity she has.

So what do I mean by her being rebellious?   Well,  she’s supposed to drink water for her diabetes.   She won’t.  She’s supposed to keep her feet up to help with the swelling.  She won’t.  She’s supposed to do her exercises.  She won’t most of the time.  She’s supposed to have a shower twice a week.  She laments, complains and you just about have to take her kicking and screaming to her shower ( not literally),  She’s supposed to use her aid to help her breathing.  She won’t.  She ‘s supposed to work at coughing up the accumulating phlegm she has.  She won’t.   She has let me know loud and clear that she WON’T wear compression stockings if she needs them.  She’s supposed to go to the bathroom more often than she does.  She won’t.  I’m surprised she hasn’t told me that she WON’T go to her own funeral! ( sorry, just had to put that in)

So what does one do with a rebellious 89 year old child??  Well,  I used to harp at her to no avail.  So my next step is to write out a list of things she is supposed to do and tape it close by her then leave her to her own devices.  No more harping, no reminders.  She’s got the list.

I understand her need to do this but unfortunately the only person she is hurting is herself.  She asked me last night why she was getting swelling in her legs!!  I have to bite my tongue and sweetly answer her.  She gets lectures from her doctor, the nurses that come, the PSW’s that come.  She doesn’t need to have lectures from her own daughter.  I need to be on her side not against her.

It’s so hard watching her deteriorate from her own stubborness  but I need to give her some control in her life.  With her probably being on the spectrum as I am, I know the need to have control over our circumstances.  It makes life more secure, more safe.  If this is how Mom needs to be to get through this very difficult thing called dying then I need to step back and let her be despite the fact that every ounce of me wants to have her keep going on as long as possible.  I don’t want to lose her.  It’s a terrible predicament to be in.  It brings anguish to my soul and tears to my eyes.  Sometimes I have to leave her, go to the basement and just cry and cry some more.

The journey continues and I have to let her do it “HER WAY!”

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……

Anticipatory Grief – a new round!

This morning I was bustling around the house getting ready for church.  I was desperately trying to remember everything I had to do to get ready – my usual predicament.  I went upstairs to get Mom’s dishes to get her breakfast and took one look at her and knew something was not right.  Her face was flushed and her eyes big with fear.  I said to her,  ” You’re not feeling OK are you.  I’m not going to church.  I’ll stay here with you.”  I could tell she was relieved that I was going to stay home with her.  She said she was coughing a lot and as I listened to her coughing I realized it was a lot worse than it had ever been.  It was gurgly, and loose and she was wheezing and sometimes whistling as she breathed.  She said she had been coughing all night.  Was her heart failure worse?

Again, I went into hyper-alert mode.  Organization mode.  The first thing I did was call the nursing company and ask for a nurse to come and see Mom today.  I got her breakfast.  I got her pills.    I got her nitro patch.  I messaged my pastor to pray.  I went through all the motions while the silent screams filled my head.  Were we getting closer to the end.  Was this it???  I wasn’t expecting this.  She seemed to be doing well.  We were just kidding the other day that she would be living to 100.

I made a cup of tea and sat with her sipping silently, listening to her struggle as she coughed over and over again almost to the point of gagging.  When that cup was gone I made another and did this over and over most of the day sitting by her side.  She dozed on and off.  We watched a bit of TV.

Later on she decided to lay down for a real nap.  I went downstairs and listened to the news about Hurricane Irma reaching Florida.  The news droned on as I sat in my easy chair trying to make sense of what was happening today.  Somehow what seemed to be way in the future was now right in front of my face staring me down.  Daring me to face it head on. My own hurricane of sorts.  Was today the day she was going to die?  Or was this another false alarm?  Maybe a false alarm but a giant step closer to what I did not want to face.  Yes, Yes, Yes…..   I am ready to let her go.  I can’t hold on to my Mom forever.  I have rehearsed this moment over and over and over in my mind.  The moment she goes to be with Dad in Heaven.  I see them embracing, so happy to be together once again.  I am happy for them.  I am happy Mom is no longer suffering.  Then I remember.  I am now alone.  Alone without Mom but not alone totally.  I have Jesus who is right with me holding me, and I have my beloved kitties and I have my friends and my church family.  No, I am not alone. But oh, it sure feels that way.

The nurse comes.  We wake Mom up and the nurse gives her a good going over.  Nurse’s advice – phone her doctor tomorrow and tell her things have changed.  The nurse tells me in private that most likely her heart failure is worse.  I say good bye to the nurse and go upstairs while Mom continues to nap and I clean my room.  Might as well be productive in a crisis.   I start to feel sick to my stomach.  I feel I am going to throw up.  I realize that listening to Mom coughing is bothering me so much that the stress of it is making me nauseous.  I agonize for my Mom as she has to go through this.  Some say those with autism do not have empathy but with many of us just the opposite is true.  We are so empathetic that it distresses us greatly.  Maybe not in the usual ways but it does cause us great grief.   I go downstairs and put on my christian music to help me cope, to ease the panic, and the stress I feel.  The nausea does not go away.  And now a full blown headache rears up.  I wrap my blanket around me and rock back and forth, back and forth.  Hurricane Irma is now a catagory 2.  My hurricane has just been elevated to a category 8.  A 10 and I will explode into a million pieces.

I call my brother in Ottawa and let him know Mom is having a hard time.  He relates to me all my nephew’s hockey practices this weekend. Hockey season has just started again.  It is intense.  He says they will have to try to get down in the next few weeks.  I hang up.  I feel empty.

I don’t know what will happen in the days to come.  I don’t know whether this is just a bad day or whether this is the start of a new reality for both of us.  I will stay close to Mom, my beloved Mom.  I will cherish her every moment.  Even if each moment stretches into months down the road or stops tomorrow.   I just know each moment is precious.  And I know that when it is the darkest, God’s light shines the brightest.  He will be my light to maneuver through whatever lies ahead. And I will rest in the shadow of his wing.