Did I Happen to mention how Exhausted I Am?

I think one thing that unites all caregivers, whether autistic or not, is the experience of feeling extreme exhaustion.  Being a caregiver to a loved one is very exhausting work both emotionally and physically but especially emotionally.  The daily toll on your body and mind is like a giant vacuum that just sucks all the energy out of you and replaces it with an emptiness, a numbness of emotions and your body goes into auto  pilot.

Being autistic, I am always exhausted.  Dealing with the daily tasks of just living takes just about everything I have in me.  Dealing with people, overload of sensory input of traffic, lights, noise, etc etc puts me in a state of exhaustion so deep each day that it takes hours to recover.  So add in the caring for your elderly mother 24/7 and the exhaustion multiplies tenfold at least.

I feel like most days I am a walking zombie,  I can’t focus, I can’t remember things I should, I can’t get ordinary daily tasks done.  Brushing my hair seems overwhelming,  loading the dishwasher seems overwhelming,  writing this blog seems overwhelming.  And then if you add in a change or a minor crisis or even a major crisis it can be enough to begin screaming in your head.  On the outside,  you gotta keep going.  You are the caretaker,  you are relied on, you are the lifeline of the one you care for.  Without you they would be in dire straits.  Especially like me when I am the sole caretaker.

I used to chuckle when my father was alive and he would be reading the newspaper – a favourite activity.  Invariably,  the newspaper would start to crumple and Dad’s head would wobble and then droop down.  He was falling asleep.  As I watched suddenly the paper would straighten and his head would whip back up and he would look around sheepishly as I laughed at him.  This would happen over and over and is a favourite funny memory of my Dad.  Well, although I never thought it would happen,  I am beginning to take after my Dad in this area.  I will be in my easy chair and the next thing I am waking up an  hour later!  But I must admit that nothing wakes me up faster than falling asleep with a hot cup of tea in my hand.  When that tea spills over into your lap,  you are alert instantly!!  This has happened to me a number of times over the last year.  I don’t recommend it no matter how much you want to be alert!!

Some evenings I can’t stay awake to get Mom ready for bed at 9:30pm.  I have learned that I need to just set my alarm and then go to sleep for the evening.  Fighting the exhaustion is a losing battle so you just gotta find ways to get around it.

So what do we do with this exhaustion??  It’s a given when you are a caregiver.  It’s not going to go away, in fact, it will probably just keep getting worse.  Well,  I am told I have to take good care of myself ( which I am not very good at).  Eat well, get enough sleep at night, take time for yourself, exercise are a few things you can do.  I personally take lots of cat naps even for just 10 min. or so.  I sit in my chair with my blanket wrapped around me and just veg for an  hour.  I do my art.  I go shopping ( my autistic form of wandering).  I also turn to my faith for strength.  I believe God gave me the job to look after my Mom and when God gives you a job He will provide all that you need to do that job.  I can be so exhausted but I seem to be able to get what needs to be done done.  I have never in the last 4 years my Mom has been living with me not been able to attend to her needs.  I always have some reserve that rises to the top to get me through and I attribute that to my faith.

The other thing we need to do to deal with the exhaustion is rely on others whether they be friends, family or community supports.  I am not very good at this I am told.  I am very independent and like to do things myself.  I have trouble with PSWs coming and going from my home.  I am very particular about the way things are to be done.  Often it is less stressful to do something myself than to allow someone else to do it.  BUT…. in order to keep going in this struggle we have to relinquish some of our determination to handle every thing ourselves and allow others to help.  I think this is one of the most difficult things I have had to learn in this journey and I still have a long way to go.

So I know the exhaustion is here to stay.  It’s just a matter of managing it well enough so we do not lose touch with our job as caregiver and the fact that we are our loved one’s lifeline.   We’ve got to stay afloat and be that lifeline in the best way possible.  It’s a very trusting responsibility, one we can never take lightly.

I think I need to take a tip from my cats.  They cat nap all day long and I need to do the same when I get the chance – just not with a hot cup of tea in my hand!

Vignettes of Grace and Grief

I haven’t posted anything for about 3 weeks – far too long to be out of the loop of writing.  So much has been happening but I am having trouble getting it down in print.  So many nondescript things that don’t catagorize easily and that frustrates me.  Where to start, what to focus on.   So I decided for a while I may resort to just posting like my title says – small vignettes of living with my elderly Mom and the joys and heartbreaks that I encounter.

Vignette #1 – I got to see Mom experience some pure joy as she got to visit with the new twins my cousin’s daughter recently had.  A little boy and a girl.  Cute as buttons in their mickey mouse matching outfits.  You have to understand where my Mom is coming from.  She has had a fixation on twins her whole life.  Her brother and sister,  June and Bob were twins and ever since she has wanted twins of her own.  I was supposed to be twins, my brother was supposed to be twins.  Then when  she had no twins of her own she desperately hoped my brother or me would have twins.  Nope.  No such luck.  Mom’s fixation on twins was always present.  When I bought her books I always found books on twins.  ( or people with amnesia – that was her other fixation).  There has been no other twins in the family on either side till now.  And she is in her glory.  She calls them HER twins and beside her chair she keeps a pile of pictures I ran off of the twins with her when they came to visit.  She LOVES those pictures.  I listen to her lament daily about how she wishes she could have had twins.  Well, us on the autism spectrum all usually have our fixations, our interests.  Twins must be one of Mom’s.  It’s like her wish of a lifetime came true.  The look on her face as she held the twins was of pure joy.  It was very neat to see an 89 year old have her wish come true.  I hope when I am 89 I will still have wishes that come true.

Vignette #2 –  I got a nasty bonk on the head the other day and have been suffering from a concussion.  I have been on brain rest – no TV, no reading, no music, and no ( well, almost no) screen time.  It has been a tough go.  I have had a bad headache all this week and looking at this screen right now is certainly not helping things but I will write a little more.

I never had kids.  I have only really had myself to look after and I don’t do a very good job of that.  I am clumsy and always bruising something, cutting something.  I am terrible in the kitchen always nicking myself with a knife, or burning myself or stepping on the cat dishes and hurting my feet.  I sabotage myself as well.  Always have done this.  I will spoil a good thing happening.  I will be careless in safety issues around the house.  So when I got the concussion ( a huge conch shell fell off my shelf above my bed and hit me on the head – so what was a conch shell doing above my head where it could easily fall on me?  don’t know.  didn’t think about it.)

An accident like this, DOES make me think about things – like as I was sitting in the Emergency room I was terrified that I had done something that would hinder me looking after Mom.  Oh, yes, MOM!  She’s attached at the hip now.  I am responsible for her 24/7.  There’s no one else to do it.  Really makes you stop and think.  Makes you realize you have to be a responsible adult, one who takes care of themself so that they can take care of others.  New revelation!  I can’t be stupid, or selfish in my actions.  All my actions have a direct link back to Mom.  I am not my own person.  I’ve done a lot of thinking about this and am attempting to mend my ways.  I NEED to be safe for my Mom’s sake.  I guess I always knew this in the back of my consciousness but a direct hit to the head like I had literally brought the severity of this to the forefront of my life.

OK, I have to sign off now.  Headache is getting worse.  Will write some more vignettes very soon.  No more 3 weeks in between posts.

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.