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.

One Day At A Time

In talking to people about grief and in my readings on grief, one of the main issues is connected to TIME.  If people are really honest with you they will tell you that it is the not knowing how long a loved one will continue to live and how long they will have to go on caring for their loved one that brings them a lot of stress, anxiety and yes, grief.

This has definitely been true in my own case of looking after my Mom.  Being autistic only adds to this dilemma as we like to have things down to a science.  We want to know when, where, how long, what and a myriad of other answers to the questions that press in on us so that we can be certain of as many variables as we can.  That brings relief, less stress and anxiety and gives us a sense of security.

Unfortunately, dealing with a loved one in palliative care has no answers to give except “don’t know”, not sure how long, wait, I can’t answer that.  There have been times in the last 3 years of looking after my Mom when not knowing has just about drove me crazy.  I became so anxious that I became close to suicidal.  I would spiral down, down, down, as I frantically tried to somehow pin a time on when – when this would all end.

BUT….through this maniacal journey, I have ( I think) found something that helps deal with the unknowns.  When we deal with unknowns we are dealing with the future.  The future is unattainable, uncharted territory.  But TODAY is much more manageable.  If I can stay in the present and not allow my brain to fast forward into the future I can stay somewhat sane.  TODAY has a lot of predictability in it that I like very much.  It agrees with me.  Like….

….  I get up, I get my tea, when Mom gets up I get her breakfast.  I dole out her pills and other medical applications.  I might visit for awhile.  Then I can go do my own stuff.  Certain days I have appointments, respite, work at the library.  Evenings are usually the same.  I get Mom her usual Egg McMuffin (homemade), glass of milk and a cookie, then she watches “Murder She Wrote” and I do my thing until 9:30 when I get Mom ready for bed – pills, ice water, etc etc.  Lots of predictability.  I like that.

Of course, there are always new adventures thrown in that are not expected like a bat in the house or me getting a concussion or Mom falling and getting a goose egg on her head.  But at least they are in amongst the predictability of that day.  I can manage much better with these random adventures when I am not thinking beyond that particular day.

Taking one day at a time has really helped me to lower my anxiety, my stress level and my time with my Mom is happier and calmer.

The bible has a wise verse in Matthew about this.  It says, “Therefore do not worry about tomorrow, for tomorrow will worry about its own things.  Sufficient for the day is it’s own trouble.”  It really is true.  Focusing on the present is like a present to myself.  I am so much calmer and able to handle things.  I can do this job for as long as Mom is with me.  I can enjoy my time with Mom much more.  The rest is up to God.

Who is the Parent??

“The son (daughter) went to his mother.

He picked her up and rocked her

back and forth, back and forth,

back and forth.

And he (she) sang this song:

I’ll love you forever,

I’ll like you for always,

As long as I’m living

my Mommy you’ll be.

This picture and quote is from Robert Munsch’s book, “Love You Forever”  (words in brackets are mine).

I’ve always thought this book was very profound but did not imagine that I would be living this book.  No, I am not actually rocking my Mom on my lap but as she gets sicker and weaker the roles have become less defined, much more blurred and obscure.  They are not black and white like I thrive on.  They are in some very uncomfortable grey area that I am struggling to deal with.  The last 3 years that Mom has lived with me I have slowly been taking on more and more of her care.  She used to make her own lunches, she used to do my dishes every evening, she used to go shopping with me.  Now she hardly eats, she lives basically on Glucerna – a meal replacement drink.  She doesn’t go downstairs now so the dishwasher she bought me does the dishes or Sandra our respite lady kindly keeps my kitchen clean.  Mom does not leave her little abode upstairs in my house.  She shuffles from her bedroom to her sitting room to the bathroom – back and forth between the three.  Everyone comes to her now.  Foot care, hair dressing, nurse, bloodwork etc etc.  Mom’s life has shriveled down to a very small world.  This past week she fell twice.  Now my world has suddenly become much smaller as well.  I do not leave her unattended anymore.  No more wandering for me.  I spend much time at my home rocking in my chair downstairs as she rocks away in her chair upstairs.  She sleeps a lot,  I am exhausted and I sleep a lot.  I do basically everything for her now.  I help her dress, I get her meals, I do her finances, I dole out her pills, I clean her clothes – every aspect of her care is in my hands.  Without me she is helpless.  She has been getting much weaker and after she fell this week she needed help getting into bed.  So every night I help her into bed, tuck her in and smother her with kisses and tell her I love her.  There is something wrong with this picture.  This picture does not compute in my brain.  Aren’t I the daughter??  Aren’t I the one that was tucked into bed every night?? I find this the strangest part of my taking care of her yet.  I can’t quite wrap my head around it.  Is this still my Mom?  Is she still in this frail, failing body?  I’m not used to being a parent.  I have never had kids of my own.  I don’t know what a parent feels like.  I don’t want to be a parent.  I want my MOM!  I want a parent.  I don’t want to be an orphan.  I want someone to rely on.  I want someone to look after me.  It is so comforting even when I object to what she is  saying when she tells me off.  She will tell me “Don’t buy anymore clothes.  You have too many clothes”  She will still offer advice like when she gives me ideas for my Summer Reading Program I am doing at my church.  And when I bought a really way out pair of boots she jokingly exclaimed “Are you really my daughter??”  Moments, glimpses, that is all I have now.  I have my Mom in moments and I see her in glimpses.  Like glancing sideways in a mirror.  Another way of looking at it.  A shadow.  There but not there.  For me as a parent it’s more like hours, days, weeks – not moments.  I am parent almost all the time.  But you know,  I am only a custodial parent.  A taking-care-of parent.  Mom bore me 58 years ago now.  My parenting is just a moment in the time-line of our life together.  No matter how hard this is to comprehend and accept I KNOW that this little shriveled up lady who struggles to even take one step in front of the other is STILL my MOM.  Will ALWAYS be my MOM.  And so as it is almost time to tuck her into bed for another night I repeat the words of Robert Munsch,

I’ll love you forever,

I’ll like you for always,

As long as I’m living

my Mommy you’ll be.          ( Goodnight Mommy, I love you! xxoo)

 

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.