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.

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!