My Grief Stew

Today I played hooky from church.  I wanted to be alone, alone in my grief.  Anonymous actually.  I went to Chapters and sat amongst  a throng of people and was totally alone and anonymous.  For a long time I’ve aired my grief like dirty laundry hanging out to dry.  Every last piece of laundry scrubbed over and over attempting to somehow make it cleaner, nicer smelling.  Well, I found out that airing our grief in all it’s detail gets you nowhere.  At least it got me nowhere.  No, I must clarify – it did get me somewhere – right in the middle of getting very hurt.  So hurt, I have basically shut down.  And I cannot make sense of it.  I have no way to resolve it and I am left to wonder what in the world just happened.  Since I have no way of logically understanding the other person’s viewpoint I must conclude that I am at fault.  And that has turned my world as I know it upside down.  I must not be who I thought I was.  I thought I was a decent person, a kind person, a loving person.  But through my own fears I have turned into a monster, someone to deny that they exist, someone to totally reject.  I look in the mirror and I do not know who I am now.  I do not see who I thought I was, I see a monster.

So on top of the grief of dealing with my dear mother,  I now have another thick layer of grief to contend with. ( and just to make matters more desperate – I now have 2 family members with cancer and a couple friends with possible debilitating conditions.  My friends and family I have grown to count on in my time of desperate need or family that I wanted more than anything to reach out to after years of little contact are in their own twilight zone of grief and heartache.  I am left to wrestle with my grief mostly on my own now.  Promises to be there for me thrown aside amidst their own life struggles and upheavals.

Like the layers of an onion being peeled back one by one I cry and wail and carry on in the privacy of my basement – alone.  From now on, my grief must be expressed alone.  The onion is continually sliced with a very sharp, piercing knife that cuts to the heart of my soul.  The knife continues to cut….chop, chop, chop…   till the onion is in a thousand pieces and thrown into a giant stew – a grief stew.  My life is that stew with all the chunks of onion floating around.  At unexpected moments I bite down on a chunk of onion and the strong taste makes my eyes sting and tears roll down my face.  I never know when I will hit a piece of onion in this stew.  And it is a stew for good reason because I am stewing about all this – my autistic mind perseverates and ruminates on each bite and I can’t get the taste out of my mouth or my heart.  I have a beef with the world.  My world.  I hold no bitter feelings towards others – I have a beef with myself.  How dare I should trust my feelings with someone else.  How dare I should trust that what someone says is true.  How dare I should trust that I am worth being a friend.  How dare I,  how dare I……   I am nothing but a fraud,  a reflection – not the real thing.  Coke – it’s the real thing.  I’m a bloke – a fake, a joke.  I grieve now even for myself.  For what I thought I was and apparently am no longer.  I grieve the loss of who I was.  The peas (peace) in the stew is cruelly missing as my world is stirred up to a frenzy and my grief splashes out all over the place, hitting others and burning them, and just making everything very very messy.    Grief stew.  This may seem corny to you – and yes there is corn in the stew because it is corny – a cruel joke.  But I am not laughing.  My laughter is gone like the steam rising off the stew.  It disappears into the air, invisible, non-existant.  Grief stew.  The food I am living on right now.  And I eat it alone choking on every bite.

No Longer A Child??

One of the greatest fears I have had over the last number of years as my parents got increasingly older was for them to both pass away and I would be left an orphan – totally alone in the big wide world.

These days I face that fear directly on as I face losing my Mom, my last living parent.  This fear has been so great that 2 years ago I was in a very dark place where I concluded that once Mom died there was nothing left for me on this earth.  I planned on taking my own life after Mom went so I could be with her and Dad in Heaven.  This was a certainty for me.  Being left as an orphan somehow had morphed into a nightmare of the worst kind.

I did not understand these feelings I had.  I just knew they were there full force, staring me in the face and taunting me.  I did not want to be an orphan, alone, alone alone……..

I also did not understand the whys of these feelings until I read a book the other day called “Death of a Parent”.  In it, it talked about the universal loss we all go through.  We all lose our parents and we become the next generation.  Our mortality looms in front of us and our history of being a child disappears.  We are now a full-fledged adult.

I don’t know if it has anything to do with my autism but I have always been scared silly of growing up.  There was comfort in being the child.  Being the child meant that when I was needy and didn’t understand the world, I could seek out help.  Children rely on parents and other adults to care for them, to help them, to guide them.  As an “adult” I still rely heavily on others to help me maneuver through this overwhelming world.  This is hard enough for any normal adult but for an adult with autism the world is a very scary place.  So for me to suddenly lose my “child” status when my Mom dies is earth shattering.  Can I still ask for help when I need it??  Am I supposed to be able to all of a sudden manage everything that at the moment I can’t??  Suddenly becoming ONLY an  adult is a 360 degree change and change and autism DO NOT GET ALONG!  Who will I be??  I have enough trouble understanding who I am now.  How on earth will I ever figure out who I am as an ADULT?  I don’t know if I am making sense to most of you reading this.  I have always coveted the CHILD position in my identity.  Losing Mom will change all that…… or will it??

What if…..what if….. what if losing my identity as a child gives me the FREEDOM to explore my life as an adult?  What if it could actually be a positive thing??  What if it means I no longer need to listen to the tapes of who I have been to my parents ( even though I have loved them both dearly, I have lived with an identity of shame, belittlement at times, neglect and much hurt).  What if I can create NEW tapes of who I am?  What if I can see the future as an adventure of discovery and creativity and new beginnings instead a dead end?  Sure, there will certainly be much grief.  I know that for certain.  But could the grief be transformed into hope, renewal instead of a pit of despair of which I can’t escape from.  I think of the caterpillar and it’s transformation into a butterfly.  It literally has to die to self to be transformed into a new creation.  New life can rise out of death.  Just as Mom can have new life in Heaven, I am sure she would want me to live a life here on earth where I would continue to grow, transform, create and love.

I picked the photo for this blog of the lion with the child for a very special reason.  It may seem like a strange choice but just hear me out.  I may lose my CHILD status here on earth when Mom dies but I am an eternal child of the King, the LION OF JUDAH, my God.  I am eternally HIS child.  When I am scared, lonely, needing comfort or advice I have a Heavenly parent that I can go to anytime of the day or night.  I can climb up into the King of the Universe’s lap and rest in His unconditional love knowing my Abba Father will take the best care of me ever!!!!

No Room for Error

I’m just sitting here thinking about the holiday season.  It seems as if every year it gets busier and busier and more frantic and people do stupid things because they have too much on their mind.  In the week before Christmas I was almost run down 3 times by cars that almost went through red lights as I walked across a busy intersection on the green light.  I also almost got run down by a reckless driver who backed out of a parking spot at full speed without looking.  I had to run to avoid getting hit.

When our minds are preoccupied, accidents can happen.  We just don’t think.  Not only is it more evident at the holiday season but I think that we who are caregivers can also be so preoccupied that we don’t think straight.  When I talk to any caregiver the number one complaint is how tired, how exhausted they are.  We all know that exhaustion causes us to not think straight.  We can make mistakes without even realizing and mistakes in caregiving can be deadly.

Where am I going with this??  Well,  I have had two incidents happen in looking after my Mom that could have had very adverse reactions.  Many caregivers are also the ones who dole out the medications for the elderly one in their care.  It’s a daunting job and a very serious one.  I look after ALL my Mom’s medications most of which are in blister packs but she also has insulin for me to manage and to administer, nitro patches to remember to put on and take off, blood sugars to monitor, extra medications which are not in the blister packs to give, eye drops to give, and ointments, sedatives, laxatives etc to give.  Sometimes medications are changed mid-month and that means removing a pill from what she gets in the blister pack or adding a pill.  I find all this extremely overwhelming and scary.  Especially after 2 mistakes.

A few weeks ago I administered a dose of insulin only to discover it was an old pen that I was saving because it had a small dose of insulin in it left that I was going to use if her dose went down.  Unfortunately, the pens are only supposed to be out of the fridge for 28 days.  I had no idea how old this pen was.  I panicked royally.  Was the dose I gave going to be effective or was it no good?  Do I give her another dose to cover in case it is no good??  What if her blood sugars drop severely and she falls during the night?  Thank goodness I am blessed to be part of a program where I can talk to a nurse 24/7.  So at 10pm at night I called very upset.  The nurse assured me it should be OK and not to give her any more.  I was assured but only to a point.  It was basically a sleepless night as I kept a watch on Mom to make sure she was OK.  I have learned my lesson.  I do not keep partial pens anymore.  I dispose of any I am not currently using immediately.  That was incident number one.

Incident number two happened just the other day.  We now have a palliative care nurse who can prescribe medications and she prescribed 2 new medications for Mom.  When I picked them up I was in a hurry ( yes, there it is)  and when the cashier asked if I wanted to talk to the pharmacist about these new drugs I declined, saying I would just read the info that came with the pills.  Well, no info was with the pills.  So I looked them up online but was confused a bit between the two and did not fully realize the dangers of one of the drugs.  It was a drug that was NOT to be stopped once started and only gone off of very slowly.  I neglected to read that.  The one night Mom was having trouble so I asked her if she wanted to take one of her new pills.  She declined.  ( She would rather take 100 different vitamins than a prescription pill)  I thought that she could take this pill just whenever she might need it.  The nurse who came to check on Mom ( one comes every week) took a look at the new medications when I told her about them and warned me severely about stopping this particular drug.  In my exhaustion and rush I failed to get the proper information on a new drug for my Mom which might have had dire consequences had I given it to her.  I shudder to think what might have happened had she not been so stubborn about taking new prescription pills.

I guess what I am trying to say in all this is that we as caregivers have no room for error.  Our elderly loved ones are at our mercy and we have to be so careful in what we do each day.  We have to be on top of things, we have to be alert, we have to be informed.  We can’t second guess things.  As I said before it is a daunting job.  And it scares me half to death.  If I did something to cause my Mom harm even by accident I would be forever upset and it would be hard to forgive myself.

I guess that after these incidents I realize just how important our job is and how important it is for us to take care of ourselves as caregivers.  We need to check, check, double check, triple check.  We need to read up on all the medications, their side effects etc and we need to access the supports in our lives like the doctor, pharmacist, nurses etc to get the full picture of what is going on with our loved one.

Having autism,  can make this a very overwhelming affair but I also find that having autism does have it’s positives.  I run my home like a nursing home.  I have alternate plans for care, I have phone numbers posted everywhere,  I have all mom’s agencies info in one place by the front door for any care person to access.  My strong sense of organization comes in handy and my attention to detail ensures that I go over everything a number of times….. Most of the time!  It’s those blips in the system when I am overwhelmed, preoccupied, distracted that can spell disaster.

Caregivers,  look after yourselves.  Look after yourselves well.  Get all the help you can.  And always double check.  And if you’re still not sure – triple check.  As I said we have no room for error.

What – Another Dreaded S-word??

Yep,  that’s right.  And this dreaded S-word is the word SICK!

Everyone dreads being sick but noone more than a caregiver especially if you are the sole caregiver of your loved one.  This is one of my big fears.  That I will get sick and be unable to look after my Mom.

I have been very blessed with good health over the last 4 years that my Mom has lived with me.  I have had my share of colds, odd sick feeling days but no major flu or other bug that has totally forced me to come to a screeching halt.  I came close a couple of weeks ago when I was confined to the couch for several days but I was still able to get up and get Mom her supper, and look after her other needs.  It was touch and go but I did it.  BUT… it scared me.

It really made me think about all the caregivers who are relied upon daily and who often like myself do it mostly alone.  It’s a serious issue.  Someone else’s life is in our hands – their welfare, their well-being hinges on our staying well enough to do what has to be done.

Right now is the time when people are getting their flu shots.  I’m going to get mine in the next couple of days.  I hear the strain of the flu this year is very nasty.  And I ‘ll make sure my Mom get’s hers too.  Not great consolation that I won’t get sick but I will take every precaution I can.

For me it’s not only getting physically sick I worry about.  Being autistic, I deal with anxiety and depression and huge mood swings where my emotions become so intense I don’t know what to do with them.  Then there’s the feelings of being so totally overwhelmed that I just want to run far away.  What if I got too sick emotionally??  I worry about this as the time of being a caregiver stretches on into the future with no end in site and that other dreaded S-word, the word STRESS gets more and more intense.  It’s being in a crazy headspace where you want it to end but then the end means you lose the one you love.  And you can’t escape the craziness of this dilemma. It goes round and round in your head every day, every moment of every day.  I want it to end.  NO, I DON’T!   I want it to end.  NO, I DON’T!  It’s like being in a personal hell.  And you walk around with a smile on your face as you work, shop, meet with friends and noone knows the hell in your head.

I don’t know what I would do if I did get sick.  Well, I do have a plan of care made up of all the details of my Mom’s care.  I do have good friends who would probably come to my aid.  I have PSWs and nurses who could intervene.  The flip side of this is if I get sick will I give it to Mom??  That ‘s my other worry.  She may not be out in public to pick up a bug but I am out nearly every day – in stores, on the bus etc etc.  It only takes one handshake or a hand placed on a germ infested hand rail on the bus to do it’s dastardly business.  I use a lot of hand sanitizer.  Kills 99% of the germs.  I still wonder about the other 1%.

I guess I just keep praying that I won’t get so sick as to not be able to look after Mom.  I have always maintained that God gave me this job to do so He will give me what I need or protect me from what I don’t need to do the job He has given me.  That is my hope tonight and tomorrow and the next day….

I’m in Hyper-Alert Once Again!

Hyper – alert – my default setting when anything changes with Mom and the last week or so things have been declining once again.  She had to have a chest x-ray because of more coughing and bringing up lots of phlegm.  They want to rule out pneumonia.  Yesterday she went to the bathroom and was short of breath significantly for at least an hour afterwards.  Not good.   Then the last two days her feet and ankles and up her legs have swollen significantly – much more than they ever have before.  Not good.   Tonight, since she sleeps in her easy chair a lot of the night, we moved the chair out from the wall so she could use the foot rest to have her feet up.  She did not understand she could not lean forward or else the chair would tip which is exactly what it did when she tried to turn  the light out.  So she was on the floor unable to get up.  I sat there calm as a cucumber on the outside trying to figure out what to do so we would not have to phone the paramedics to  come and get her up – on the inside I am screaming out to God to help us through this.  She was finally able to get up but I cannot be sure she will remember she can’t lean forward without first putting down the foot rest.  I will be up for another few hours unable to settle in case she falls again.  A long night ahead.  I will probably be on hyper – alert setting for a few days until hopefully things settle into a more regular routine again.  For how long I don’t know.  Things seem to be changing more quickly lately.  Dealing with the constant changes is one of the hardest aspects of looking after Mom.  Change and me just don’t get along at all.  Living with uncertainty all the time exhausts me to no end.  I used to tease my Dad when he would nod off to sleep while reading the paper.  Now I know what it is like to be awake one minute and then find out you’ve been asleep an hour.  It discombobulates me – I feel I am losing control.  When I am too tired to shop you know I am beyond tired.  That’s where i am now.  But it’s funny – this tired business.  If I tried to lay down and have a nap I wouldn’t be able to get to sleep – that hyper-alert setting would override my ability to go to sleep.  It’s like sleep has to catch me by surprise – with out me knowing.  Well, might as well go do something useful.  I’ll be up for awhile.  Maybe a cup of tea – decaffinated of course.

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.

Guilt to Gratitude: The Happy Wanderer

Several weeks ago I came home from church to find Mom sitting in her easy chair with blood all over her and all over the carpet. She had fallen and hit her head and hurt her back.  That moment created some sort of paradigm shift in my existence.  Where before I had felt fairly comfortable leaving her to do errands and other outings, I now felt terrified to leave her even for a few minutes.

Suddenly, my world had caved in upon itself.  I was no longer free to come and go as I pleased.  This would be very difficult for anyone but for me with autism it was doubly difficult.  I am a wanderer.  I spend a lot of time wandering around town, whether it is to do groceries, to visit my favourite stores, to meet with friends at Tim Horton’s, to just go walking.  Wandering is a huge stress releaser for me.  As a young adult years ago when I was having severe problems,  I would find myself wandering in the middle of the night in my pyjamas around my neighbourhood – sometimes even in the middle of winter.  I would often run when things got tough.  I would run when things got scary.  I would run when I was overwhelmed.

Suddenly I was a prisoner in my own home.  Trying to set up respite was difficult and I could find noone to come in on the weekend.  That meant not going to church and being in the house for 2 whole days.  Just the thoughts of it made me squirreley.  The first weekend I spent at home I became deeply depressed and then I came down with very sore blisters in my mouth – surely a sign of stress.  After 2 weeks of this entrapment, I decided I could no longer do this as it was going to be the end of me.  Part of the problem was that when Mom fell, she declined to phone me ( I ALWAYS have my cell phone with me when I go out) and she didn’t push her lifeline button.  These were two safety nets Mom and I had set up to make sure she would be safe when I went out.  She had refused to use either one of them when she fell.  How could I trust her?  I had a long talk with her about the importance of using the safety nets we had set up and I told her that if she did not use them I could not leave her.  Now, she was also feeling trapped.  She did not like me hovering around her and particularly did not like being “babysat” as she put it.  After much discussion, we decided that we would go back to the way we had done things before she fell.  She would phone or push her button and I would leave her on her own for short periods of time.

Only there was one thing I did not count on – GUILT.   If I tried to leave her for a short period I felt an overwhelming sense of guilt that if she fell or something else happened it would be my fault.  I had to be aware of how she was at all times.  I soon realized that this guilt was partially my feeling that I had to have everything under control.  I could not walk in on a scene like I had that day after church.  Controlling every detail would prevent the extreme fear I had experienced that day or so I thought.  But trying to control every detail was impossible for one thing and for another it was not the way God wanted me to run my life.  By trying to control everything I was removing God from the equation of my life and that could equal disaster.  I wanted God back in His rightful spot – at the centre of my life with Him in first place, not my act of controlling.

I had to fight the guilt and control.  So I decided to take a trip to my favourite place – Value Village and NOT get someone to stay with Mom.  She would be on her own.  I stayed away 3 hours and they were the most anxious 3 hours I have experienced in years.  I almost passed out several times from the extreme anxiety of leaving Mom.  But I did it!!  And Mom was no worse for the wear.    Over the last week I have ventured out on my own several times leaving Mom alone.  Each time it gets a little easier but I have to commit her to God’s care and ask God to help me deal with my anxiety.

So I am free to wander again.  I am so full of gratitude for this privilege.  And that is how I look at it now.  It is indeed a privilege that at any time could be taken away again.  To feel like a caged animal in your own home is a frightening experience and not one I want to repeat.  I still feel trapped in the sense that I am bound to Mom for her care and well-being but I will deal with that as best I can.  That is just my life right now.  As long as I can wander I can experience some relief from the restraints that are on me at this time in my life.  And wander I will…..