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!

Thankful in the Centre of Everything!

Thanksgiving has come and gone but being thankful never ever should disappear for a year like a holiday does.  Being thankful is essential to getting through the tough times.  It aids good mental health.  It’s hard to be miserable when you are being thankful.  Most of us are thankful for the usual things like family, a roof over our heads,  food on our table etc etc.  I am especially thankful for all these things but I have devised a list of a portion of things that I am thankful as a caregiver of my Mom.  It might be a little unusual but these items are lifesavers.

  1.  I am thankful for grab bars.  They help Mom stay upright and out of hospital.  I like to kid that I would easily get in the Guinness World Record book for the most grab bars and railings in my house!
  2. I am thankful for lysol and febreeze sprays.  Oh, they work wonders on nasty bathroom odours!
  3. I am thankful for Spray and Wash.  It gets most of the stains out of Mom’s clothes when she misses the mouth or has an accident.
  4. I am thankful for Connie.  She is the most amazing PSW who gives Mom her much dreaded showers twice a week.
  5. I am thankful for Sandra who helps keep my house clean and gives me respite.  She does exercises with Mom and is also wonderful to talk to when I am at my witts end.
  6. I am thankful for my cats who bring Mom and I lots of home entertainment.
  7. I am thankful for Bread and Butter Bakery which right now supplies Mom with her breakfast muffins and her favourite cookies.  Next week she may be on to some other foods but right now these make her day!
  8. I am thankful for a townhouse condo neighbour who is never home.  She lives somewhere else with a boyfriend most of the time allowing Mom to crank up her TV to ear splitting decibles and I don’t get any complaints!
  9. I am thankful for the internet that allows me to look up and solve obscure problems with Microsoft Word because Mom can’t control the mouse and clicks all over the place causing the strangest things to happen. And you better believe that it’s not Mom’s fault – the computer just does crazy things all on it’s own.
  10. I am thankful for doctors who will listen to what you say and try your suggestions  for medication adjustments, etc etc.  I would be even more thankful if I got a doctor’s salary for doing all this!
  11. I am thankful for Lysol wipes that can instantly clean up any bathroom mess and you can just throw them out!
  12. I am so thankful for Hospice Kingston – for Sharon and Anne who help me through this difficult time with such knowledge, insight and a gentle, caring way.  I would be lost without them.
  13. I am thankful for Facebook and my email that keeps me in touch with the world when I am not able to leave my home for taking care of Mom.
  14. I am thankful for my haven in the basement – my easy chair, my cozy blanket and enough sound proofing that I can cry and scream when things are way too much for me and noone can hear except God.
  15. I am thankful for frozen blueberries and milk,  my go to food when I just can’t eat anything else cause I am too overwhelmed with everything and the anxiety takes away all appetite.
  16. I am thankful for my cell phone – not so I can talk to others but so I have a lifeline to my Mom should she need me or anything happens.  It goes with me everywhere.  Works best when it is charged though which is one more thing on my long list of things to remember.
  17. I am thankful for parametics who will come and pick my Mom up when she falls but is not hurt and get her back in her chair or in bed.  I just can’t do it anymore as Mom is a lot weaker and can’t help herself get up.
  18. I am thankful for my dear friends who lift me up when I am down in the dumps or am overwhelmed.  They whisk me off to Tim Horton’s for a steaming cup of tea, some good conversation and a bit of escape from my real world.
  19. I am thankful for my Pastor who always answers my frantic emails when I am at the end of my rope no matter how busy he is with the promise to pray.
  20. I am thankful  for a God who does not change.  He is the same yesterday, today and tomorrow.  Not like my life which is constantly changing and discombobulating me to no end.
  21. I am thankful for a sense of humor which can turn the darkest times into peals of laughter.
  22. I am thankful for tea.  Lots and lots of tea.  My main sustenance, my energy booster and my wonderful relaxing time.
  23. I am thankful for Lawrence Welk.  Yes, you heard me right!  Mom and I watch Lawrence Welk every Saturday night together.  It is one of our special times together as it is her favourite show.  I just like looking at the crazy hairdos and fashions!  Well, I must admit I like the music too.  Must also admit I’m glad when it’s over!
  24. I am thankful for Mom.  For this lady who frustrates me sometime to no end but who I love with a fierce love.
  25. And finally ( although there are many many more things and people I am thankful for) I am most thankful for God, the one who gives me the strength to keep going and the one who provides all that I need to do this incredibly difficult job of looking after my Mom and who lavishes His love on me as his precious child.

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.