My Brain is on Auto-Pilot

As I’ve mentioned many times in my posts, care-giving is exhausting.  Add the autism into it and it is more than exhausting, it is mind-numbing.  Lately, I seemed to have entered an interesting phase in this journey I am on of looking after Mom.

I suppose you might say I have resorted to putting my brain on auto-pilot to manage day by day.  I know exactly what I have to do to look after Mom first thing in the morning, throughout the day and in the evening when getting her ready for bed.  It’s like a mathematical formula that just repeats itself day in and day out.  My mind also knows to check for what we need in groceries, what medications I need to renew, to do the laundry when the pile gets quite high, to get Mom’s glucernas when she is running low, to feed the cats, to take out the garbage and so on.  Routine, Routine, Routine….

This is all pretty normal but what’s changed is the times that I am not in routine.  I used to work on projects like making my greeting cards, tidying, sorting, doing various crafts, reading, doing my budget and so on.  Now my blank times are just that – blank.  I sit and rock, I doze, I sit and hum, I sit, I sit some more and some more…   And most of the time my mind is blank.  Like it has turned itself off.  Even doing this blog is very difficult and I am forcing myself to think to write.  I have a speech to write for later this month.  I can’t get started.  My brain is out of gas.  My tank is empty.  And there is no gas station for miles around.  I am stranded in this land of blankness.  I forget to look after myself,  I forget to shower, to brush my hair ( I think it has been 4 days since  I brushed my hair – thank goodness for winter and hats.)  I forget to eat and if I do eat, I eat junk food.  Gone is the healthy diet I was on for the past couple of years.  Sometimes I wear my clothes to bed too tired to change.  Sometimes I’m too tired to go to bed and sleep in my chair.  And then pair that with nights when I am zinging and I stay up all night.

Emotions elude me at times.  I don’t feel sad or angry or happy.  I just feel nothing.  I just move through  the day doing what I have to to keep Mom in the best of care.  I must renege a bit here.  Yes, there are times that emotions elude me but there are also times when my emotions gush out of me like mighty torrents of raging waters and I am unable to control them. And it usually over something very trivial.  The other day I  wrote a letter to someone and I had spent a month trying to figure out what to say and just how to say it.  I got it written and was happy with it and saved it and closed my laptop.  Later I went to print it off and I couldn’t find it anywhere.  It was just gone!  You would have thought the world was about to end.  I cried, I wailed, I screamed.  I even felt I was so upset that I would need to go into the hospital and told my doctor so.  But I don’t have the luxury of copping out.  Who would look after Mom??  I have to go on no matter what.  This story does have a happy ending because when I calmed down enough I got myself together and took my laptop to a computer place and for $11.56 I was able to retrieve my letter.  I told the technician that if I had a million dollars I would give it all to him.  I was that happy.

I guess when you don’t have the luxury of copping out and you are in need of a break your mind just tells you it’s going on break whether you like it or not.  And I believe that is exactly what my mind has done.  It’s taking it’s own holiday without me.  How rude!   And it’s just hit the auto-pilot button so I can continue doing what I have been doing.

It’s not that bad really.  I’m not in pain, I’m not suffering much at all.  Being in a blank state is actually quite nice.  You just don’t get much done except the bare necessities.  But maybe that is just where I have to be right now until my brain decides it has had enough of a holiday and wants to come home.

Meanwhile, I’ll just continue to sit and veg and sit and rock and sit and hum and sit and sleep and best of all sit and pet my cats when they take advantage of me being in one place for a while.  Nothing better than petting a cat for your brain on a holiday.

So life is kind of on hold right now.  I don’t go out much.  I don’t do much.  I don’t have the energy to see my friends.  I am not able to read much.  I’m in limbo, in this weird state of mind and I don’t know how long it will last.  I guess I just go with it.  As long as I can take care of Mom I don’t care about me.  I have survived much worse.  I will survive this.

My Christmas Wish

I haven’t written a post in quite a long time.  Christmas is such a stressful time for me and also so overwhelming and exhausting that I have been just too exhausted to think about writing.

But Christmas Day deserves a post.  What a special day.  Because I have a strong faith Christmas is very important to me.  God came down from Heaven to become a man in order to have a relationship with us.  And what a wonderful relationship it is.  But what does that have to do with this post on grief and my Mom.

Well, Mom is slowly getting worse.  We just got a palliative care nurse to help manage Mom’s care.  She is getting so weak that even signing her name on her few christmas cards was almost more than she could manage and it caused her to have severe shortness of breath.  The last few days I have noticed that when I am with her I can hear her breathe.  It’s like she is lightly snoring or wheezing or something.  Basically her breathing is getting more and  more laboured.

Mom won’t do the exercises that can help her breathing.  She won’t take the medication the palliative care nurse prescribed to help her when she is short of breath.  She wants to do things her way and although it makes me angry I have to respect her desire to do things her way.  It’s so hard to watch her go downhill.  It’s so hard to listen to her complain about all that she can’t do any more and how she feels useless.  It’s so hard to know things are only going to get worse.

I love my Mom so dearly.  I would do just about anything to reverse this aging process so I could have her with me for a long long time to come.  Unfortunately that’s not the way life works.  So this Christmas I made a wish to God.

I asked God that He would take Mom home on Christmas day so she could be with Dad in Heaven on Christmas.  I thought that would be so neat.  She would be free.  No pain, no mobility issues.  She could dance, run, skip and even just walk with no problem.  And her head… her head has caused so much discomfort since her stroke 15 years ago.  She would have no problem any more.  She would be free from her awful head.

I know in past posts I have talked a lot about needing release for me.  I have been at the end of my rope and I needed release but this Christmas wish was more about release for Mom.  I know she is miserable.  It just seemed like such a neat thing if she could be in Heaven on Christmas with her loved ones and her beloved Saviour face to face.  To see Dad again would be so wonderful for her.  I wanted that desperately for her.  But I guess it is not going to happen.  Mom’s doing well today.

Please don’t get me wrong.  I’m not wishing her dead.  As a christian I am wishing her to be in her new body with her loved ones who have gone on before her.  Of course, I will miss her terribly and I will grieve and life is going to be very hard without her.  But at some point you have to lay aside your own fears, your own desires and look beyond your own security and comfort.  I just really wanted Mom to be with Dad.  I know she misses him so much.

I don’t know if this is going into another stage of grief or another acceptance of sorts but I wanted to give Mom a special Christmas gift by asking God to send the angels to take her to Heaven.

It is true I am exhausted, overwhelmed, and burnt out.  I need release too. But I am willing to keep going as long as Mom is on this earth.  I know God will give me the strength.

I guess I will have to tuck my Christmas wish in my pocket and hold on tight to it to maybe next Christmas.  It’s OK to make a christmas wish but if it is not God’s wish then I don’t want that wish at all.  God’s timing is perfect and that is what I want for Mom.  Instead of this Christmas wish I have had the blessed chance to have another christmas with my Mom and that is so special.  When someone is in palliative care you just take each moment as it comes and you treasure each moment as a special gift.  I may  not have gotten my christmas wish but I got a very special christmas gift – my Mom for another christmas.  What more could I possibly ask for?

Success in Caregiving – How do you measure it?

On my Dad’s deathbed, I made a promise to him – I would look after Mom for him.   True to my word, I have been doing that since he died.  I looked after her while she was in the retirement home and then I have looked after her in my own home the last 4 years. ( our 4th anniversary of being together is Nov. 30)

I came to the realization the other day that I see this journey as a sort of race, perhaps more of a marathon!  I am determined to look after Mom till the day of her death and hopefully not have to put her in a nursing home.  I also realized that my determination to see this journey through to the end was not just for Mom’s sake but also to in a sense prove to myself I could do it.  I could win the race set out before me.  That would be my success.  Anything less was unacceptable.  In fact, if for some reason Mom went into a nursing home I would see it as a huge failure on my part.  I would be a failure.  Everything would be in vain.  I would have broken the promise to my Dad.  This would be almost unforgivable.

There are days when this journey is too much.  I want to quit.  I want out.  But my stubborness pushes me on despite my protests.  Thank goodness these days don’t last and for the most part I am in the race with every ounce of energy I have.  On both the good days and the bad days I struggle with severe exhaustion and I turn to my faith – to Jesus Christ who said His grace is sufficient for me, His power is made perfect in weakness. (2 Cor 12:9).  I struggle along even if I am on my knees crawling.

The other day my friend was over and I was talking about how this journey had to be a success.  I could not fail.  She very gently pointed out that this journey has had many many successes along the way and the end success was only one of many.  This was a new concept for me.  I had not thought of the success of this journey in this way.  As I mulled over this for several days I have come up with some “other” successes that have happened over the last years especially since Mom has come to live with me.  Here are a few of them:

  1.  I think one of the most important successes that has happened has been the enormous amount of healing that has happened with my relationship with Mom.  She is not even aware of these healings as they have just gently come about from me looking after her.  We have not had deep discussions about our relationship and how it has changed.  I just know without a doubt that the burning anger and hurt that was there for most of my life is now basically gone.  Instead there is a new understanding of who she is and perhaps some of her shortfalls that were her problems not a reflection of who I was as a person.  Knowing she is probably on the autism spectrum has greatly helped me to accept her jabs and comments knowing that she is probably unaware of how they may affect me.  I also now understand some of her idiosyncrasies and don’t take them personally like I used to do.  It is very freeing to be able to shed the hurt and anger and instead just love her for who she is.  It is really a miracle that has happened not just a success.
  2. Those of us with autism can get very self- involved and it is hard to see beyond the end of our noses.  It’s not that we are selfish or self-centred.  We almost need to focus on ourselves to manage the difficulties of life with autism.  One thing I have noticed through taking care of Mom these 4 years is that I am much more outward thinking.  I am able to do better at that “Theory of Mind’ stuff that is so difficult.  I take great pride in providing Mom with little treats that she might like such as her favourite cookie or a pot of flowers or a new outfit to wear.  It brings me great joy to bring joy to mom.  And this spills out into other areas of my life with my other friends and people in my life.  My sensitivity to others and desire to help others has grown.  I don’t think this would have happened if I had not had the job of taking care of Mom.
  3. A very practical success is that by living with me Mom’s financial resources have lasted much longer than they would have otherwise. Being with me has given Mom the financial freedom to do some things she has wanted to do that had she stayed in the retirement home she would probably have run out  of money.
  4. Mom being with me these last 4 years has also given me a financial stability that I might not otherwise have had since I always had to rely on students or other roomates to make ends meet.  It was always a worry if they decided to leave or left in May or June and I was left over the summer with no extra income.  It was always hard not knowing if you would get along with the roomate or not but having Mom with me has given me an emotional stability in regards to who is living with me.
  5. A huge success is just having the company of my Mom with me every day.  To just be able to talk with her and share our lives together is such a blessing.  I’ve learned a lot about my childhood and other details of our family’s past that I might not otherwise have known.  I have recorded some of our conversations so I will always have them.
  6. Being together has also brought us closer to some of our family members who were distant before. I think of my cousin Donna who I cherish and who has brought such joy to Mom through her daughters’ children, her grandchildren.  Her one daughter had twins and we are enjoying seeing them grow and flourish and also enjoy little Drew, her other daughter’s son.  I enjoy running off pictures from Facebook to show Mom of the wee ones.
  7. Another success of having my elderly Mom with me is that as she gets frailer and I try to deal with the anticipatory grief and other issues around Mom one day passing I have had the profound pleasure of meeting some wonderful people along this journey who have become very special to me and have helped me to keep running the race and not to give up.  I think especially of my grief counsellor who I meet with each week.  I told her today that she was worth more to me than the most precious jewels.  I heard on the news today that a DaVinci painting was sold for over 400 million dollars – the most ever gotten for a work of art.  I told my grief counselor she was worth more to me than 400 million! And that’s no lie.  Without her and others at Hospice Kingston I most likely would have failed long ago in my quest to keep Mom at home with me.
  8. Another success is that to be a caregiver you have to be organized.  You’ve got pills to give, to renew and pick up at the pharmacy.  You’ve got laundry to do, food to buy, different supplies to get for Mom, doctor’s appointments to organize, foot care, and the list goes on forever!!  I have had to learn to be organized and learn to coordinate Mom’s PSW’s coming and going and be flexible when things change.  All hard things to do on the autism spectrum.
  9. I’m sure I could  think of a number of other successes but my brain is shutting down.  It needs sleep.  But as I look back on what I have written,  I have to conclude that indeed there have been many successes in this journey already.  It all comes down to how we define success in our life.  I know the ultimate success for me will always be to look after Mom till the end at home if possible.  But I realize that if things take a different turn than what I think they should be I can remind myself of what has been gained over the past 4 years.  So much good has happened.  So much good that will last long after Mom is gone.  And so I head off to bed a little lighter in my spirit because I have found a new way to measure the success of this caregiving journey I am on with my Mom.

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.

I Give Myself Permission…

I am what you might call a driven person.  I have to be doing something, I have to be achieving something,  I have to see progress, I have to see results.  I am a person who lives with lists of to do items.  My world is formless, and empty unless I make a list every morning.  Then my day has substance and boundaries around it that I can see and understand.  I don’t always have to cross everything off the list – I just have to have the list.  But…. I am driven to get as much off the list as I can.

I feel like I can’t waste a moment of time.  Watching TV ( I mostly watch the news) has to be watched while doing something like flipping through a magazine, or updating my budget, or writing another list.  I love reading but I have a terrible time reading fiction.  I can’t allow myself the luxury of just reading for the joy of it.  I mostly read non-fiction where I will learn something.  Then I feel I am being productive.  I am working on this.

I worked in the school system for 33 years as an Educational assistant with special needs kids.  I worked all day, then often did things in the evenings, on weekends and holidays.  I go overboard with almost everything.  I love it this way,  I feel productive, worthwhile and accomplished.  When I retired 2 years ago, the first year was hell.  Not having the routine of going to work every day was so disruptive for me and foreign to my way of life for so long.  I had lost a big part of myself.  My saving grace was getting a job at the public library and at a Teacher’s Resource Centre.  I also  took over the library at my church.  These things kept me busy and feeling like I was still productive.  I also delved into doing projects around the house.  Anything to keep me going.

Of course, looking after my Mom was a huge part of my daily routine.  As she started failing more and more,  my stress level went higher and higher.  The physical duties of looking after her were not as overwhelming as the emotional stress of dealing with the fact she was failing and could leave me at any time.  I got more and more exhausted.  I tried to ignore the exhaustion and keep up a rigorous schedule.  I became more and more anxious and depressed and the exhaustion deepened.  I fought back with just upping the ante.  More jobs to do, more tasks to carry out.  Stay up late, get up early.

About a month ago,  I had an issue where I spiraled downward emotionally.  I withdrew from everyone, locked the front door, closed the curtains and did not answer the phone.  I basically curled up in my rocker-recliner with a blanket over me and hid from the world.  This went on for over a week when I finally surfaced and felt I might just be able to face the world again.  The curious thing though that happened was that even though I was back being with people and engaging in the world around me again I still found myself curled up in my easy chair a lot of the time.  When I wasn’t directly involved in looking after Mom or having to go out to work or run errands, I would retreat to my chair with a cup of tea and just rest.  At first I thought I was maybe getting depressed and I was worried but then I realized that I was actually feeling better.  I wasn’t zooming around at top speed and I didn’t seem to be distraught about it.  I was seeking out my chair more and more and relishing the time spent doing nothing.  This was so foreign to me but a relief somehow.

I know that I am totally exhausted both physically and emotionally.  I know I am in a critical state of overload.   I know that if I am to continue to care for Mom something drastic has to happen or else I will not make it.  Yesterday while talking to a friend about my resting so much in my chair I blurted out words I never thought I would hear myself saying.  I said to my friend, ” I am giving myself permission to do nothing!”  I think I shocked myself as much as I shocked her.  I have never voluntarily given myself permission to do nothing without dealing with the fallout of anxiety and self- hatred.  But when you are at the end of your rope,  your world view can change drastically in order to survive.  And for me to survive looking after Mom, I need to do a lot of NOTHING.  It’s very freeing to give yourself permission to do something even if that something is nothing!

I feel a bit like an earthquake just hit my world view.  Things are shaken up for sure.  This is new territory for me and certainly not completely comfortable yet.  But I want desperately to be able to continue to look after Mom in a healthy way  so as the dust settles, I am going to continue to settle into my easy chair or my hammock chair, sip on a cup of tea, maybe flip through a magazine or enjoy one of my cats on my lap and I am just going to rest.  And maybe, just maybe I can get through this time in my life without disintegrating or collapsing.

I challenge you to say those words, ” I give myself permission…..” and fill in the blank with something in your own life.  It will be a challenge but I believe it will be a positive experience for you, a ticket to move ahead in your life and leave negative patterns behind.  What could be better than that?

I look at my cats and see how they live without a care ( except when their next meal is coming and are they going to get their treats today?)  I want some of that serenity and bliss I see as they snooze in a patch of afternoon sunlight.  I want that ability to give myself completely over to relaxation and rest.  I wanna be a cat, but since I’m not – I will take a lesson from them and do my best to find a way to enter into a rest that will keep me going on this difficult and exhausting  journey with Mom.

Joy Comes in the Mourning

I’d like to introduce you to my little “JOYBOY”.   His name is Gus Gus.  I adopted him a year ago this month shortly after I lost my beloved Zacky who I had for 15 years.  As you might suspect, I am a cat person – in and out, through and through – period.  I could not live without a kitty in my life.  I have 2 cats – Gus Gus who is pictured here and my beloved gentle soul Oreo who is about 7 years old.  I will tell you more about him at a later date.

For this blog I would like to tell you more about Gus Gus because I feel he has a very special purpose in the journey I am going through right now.  Gus Gus looks very docile in this picture but in real life he is full of boundless energy and doubly full of mischief!  My days are forever filled with his antics and adventures.  He is so curious that nothing gets by him without a full inspection and often naughty consequence.  He digs in my flower pots, not only digs but dumps them completely out and then proceeds to madly spread the dirt all around.  He made a nest in the Christmas tree.  He takes flying leaps across my table and counters and everything goes flying in his path including an antique dish,  and numerous other breakable objects.  He tries to eat my Mom’s flowers and loves to rummage through any array of items he can find.  He even helped me paint.  I have his colourful footyprints on my black computer chair to prove it.

By now I think you get the picture of what this little guy is like.  But there is something else about this little guy that is not visible to the human eye but is only visible to my human heart.  For some uncanny reason,  Gus Gus makes me laugh.  And I don’t just mean when he is doing something funny.  He makes me laugh when he is sleeping, when he is being naughty, and even when I just think of him.  JOY inside of me just  bubbles up like my favourite Perrier water.   He douses my grieving soul with pure JOY.  It is inexplicable in human or cat terms.  I have never had a cat or any animal that has had this effect on me.  Sometimes I am telling Mom something about what he has done and I am doubled over in fits of laughter till tears run down my face.   I can be on the bus going somewhere and I think of him and  I start to chuckle.  I can be having a truly horrible day and Gus Gus will just make me start to laugh.

Even when I don’t want to laugh.  Most days I don’t feel like laughing.  I am exhausted, overwhelmed, depressed, highly anxious, full of fear, full of uncertainty and I just want release.  I love my Mom so dearly, but it is so hard.  This care taking job is so hard.

I have always related to animals better than I have related to people and I suspect that has something to do with my autism.  My cats are my LIFE.  But what has happened this past year with Gus Gus just confounds me.  It is something beyond the norm, even beyond my loving my cats.  I believe Gus Gus is a gift to me to help me through this very difficult time.  The joy he give me is a gift that lifts me above the despair I often feel as I look after Mom.  I believe that without him in my life this past year, I may not have made it.

There is a verse in the bible that says that “Weeping may endure for the night but joy comes in the morning”  Psalm 30:5.   I know we shouldn’t change God’s word but I am going to take a bit of  liberty and do a spelling change.  I am going to say, “Weeping may endure for the night but JOY comes in the MOURNING.  I believe God has given me my little Gus Gus as my JOY to help me through the mourning.  He is my JOY in the mourning and grief I feel as I look after Mom.  You can’t put God in a box.  He is a creative God who knows what each of us individually needs and He knows I love my cats.  He knows I need JOY.  And he gave me both in a very unique way.  His own special touch!  (speaking of putting God in a box – I have a card and on the front a man is talking to a cat and looking at the litter box.  He says to the cat, ” And don’t ever think outside the box!!”

Another thing about Gus Gus that makes me know he is a special gift from God has to do with hearts.   My cat Zacky who died had a beautiful heart in his fur.  I was worried after he died that I wouldn’t know how to  pick the right kitty for me.  I’m not sure you’re supposed to dictate to God your demands but I told God that if a kitty had a heart on him I would know it was the right kitty for me.  I saw Gus Gus on the Humane Society website.  I went to see him at a local pet store where he was.  I was drawn to him but as I  tried to inconspicuously  find a heart on him I could find none.  What to do??  The lady at the store kept saying to me, “Just try him out, you can bring him back.”  So with my own heart thumping in my chest, I brought him home.  Well, in the next week I found not 1 heart on him, not 2 but 5 hearts on his little furry body.  He is definitely my cat, my JOYBOY,  my heart throb, and my lifesaver.  If you could see me right now I am smiling from ear to ear at the thoughts of this little guy.

One thing I have learned.  There can definitely be JOY in the mourning.  I am experiencing it firsthand everyday through one furry little crazy cat called Gus Gus.

Grief – the Makings of a Horrific Loss or Lion-like Strength

As this website title suggests, I will be writing frequently on my experiences as a caretaker for my elderly Mom and the grieving process I am going through.

BUT what exactly is GRIEF??  To put it simply, it is our reaction to any loss we experience in our life.  You don’t only experience grief when someone dies.  Grief can be felt in many life events.  Any major change like a move to a new house or changing jobs or changing caregivers or changing schools can leave you lost and shocked.  Leaving elementary school to start high school or to start out on your own as an adult can cause grief at what you feel you may be losing like favourite teachers, friends etc.  Losing a beloved pet, a friend moving away, your favourite possession broken or lost, a divorce, a loss of good health, a loss of something that helped define who you are such as retiring from a job that was a large part of your identity, a loss of something that gave you great pleasure like a hobby or a favourite outing can bring on grieving feelings.  All of these things and many more can cause us to mourn or grieve and can have a huge impact on our well-being.

But like many things, grieving is a process and over time if we have the right guidance and support and attitude, that process can take us to new positive places in our lives.  In my life, my faith helps significantly in my grieving process.  For you it may be something else.  Whatever our journey, grieving can make us stronger not weaker.  It doesn’t have to decimate our lives although I won’t deny it can be very painful.

I am hoping this blog will show you that despite my struggle with grief coming at me from a number of different sources, complicated by having autism and all that entails, my resolve is to emerge stronger and more intact than I have ever been.  The picture above captures my feelings exactly.  I may be an ordinary house cat but inside of me is a  roaring lion with a strength I did not know I possess.  Harnessing that strength through the grieving process is my goal.  There is a verse in the bible that is my daily mantra.  It goes,  ” My grace is sufficient for you, for my power is made perfect in weakness” spoken by Jesus Christ found in 2 Corinthians 12:9.

I think I speak for those of us with autism that hardship is certainly not foreign to us.  We live difficult challenges every day of our lives.  It’s what we do with those challenges and our grief that makes us the unique and special people we are.