Mom: A Legacy of Gratitude

Gratitude – it’s one of those buzzwords you hear so often lately along with mindfulness and optimism and self-care and happy.  It’s supposed to make your life better and more meaningful.  But do we really “get” GRATITUDE?  It seems to me that people are more likely to gripe about having to wait in line or the  nasty service they received at the mall or be quick to honk their horn at someone a little too slow in front of them.  To me people seem angrier  and bitter rather than grateful.  You listen to the news and it is full of stories of people hurting others out of hatred, and people out to get whatever they can get because they are not satisfied with what they have.  We are an entitled society.  So many of us believe we deserve the nice things, a happy life, smooth sailing all the time and when life doesn’t work out that way we gripe and complain bitterly and push against everyone and everything around us.

My Mom is sitting in a nursing home at the age of 91.  She is suffering every day with struggling to breath, pain, severe discomfort, and discouragement at not being able to do the things she once was able to do.  Pretty well all her independence has been taken away from her.  She relies of someone to get her dressed and undressed, to take her to the bathroom,  she wears adult diapers,  she can’t see well or hear the phone when I try to call.  This woman has every reason in the world to gripe till the cows come home.  She should be angry, bitter, resentful and downright miserable.  Yes, sometimes she has moments when she feels these things.  BUT… my Mom is the most grateful person I have ever known in my life and I am so grateful to have a Mom like that.

Mom lived with me for 5 years before I could not look after her any more and she had to go to the  nursing home.  I would often sit in her sitting room with her and we would just chat about anything on our minds.  Inevitably,  the conversation always came around to talking about our lives and how much we had to  be thankful for.  We would tell our life stories over and over again and marvel at how God worked this out or that out.  Mom grew up on a very poor family and I am sure it was not easy but as she exclaimed over and over again with joy on her face she would tell of the wonderful parents she had.  She would say, ” we didn’t have much but we had love!”  She would reminisce about the wonderful man  my Dad was and what a good husband he was.  She would tell me that there were times as she put it, that she would have liked to “murderate that man”  but that was a marriage where there were good and bad times and she chooses to remember the good times and be grateful for the man who helped raise two good children and was faithful to her to the end.   Over the years I have heard so many stories from her and have recounted so many stories of my own, many of them intertwining in our lives together of mini miracles.  God just reached down and blessed us with jobs when we needed them, wisdom when we didn’t know what to do, a new home when neither my mom or dad were working at the time,  miracle after miracle, blessing after blessing and stories of gratitude to fill a lifetime.

These talks Mom and I had were frequent, I’d say nearly every day.  And they continue even in the nursing home.  I visit her 5 out of 7 days of the week.  Every single day mom recounts some story she is grateful for.  It just flows out of my Mom.  It is an integral part of who she is.  She is just a grateful person.  And that gratefulness spills out into my life.  And I am so blessed to have a Mom who reminds me when I feel discouraged all the stories in MY life that I have to be grateful for.

Gratefulness doesn’t usually stand directly in front of you and wave it’s arms and say, ” Here I am.  Be grateful for this!!”  Most of the time you have to go searching for gratefulness.  It’s subtle,  it’s quiet and it is not in your face.  But it is a treasure that if you make it a point of going searching for it you will find it every where.  It is all over the place,  hiding in plain sight.  It is a treasure that will, as so many proponents of gratitude today say, will change your life and your ability to cope and enjoy the life you have no matter whether you are rich or are the poorest of the poor.  Gratitude is like a diamond in the rough, hidden unless we look for it and mine it to it’s great glory.  And the funny thing about gratitude is that there is always something to be thankful for even when we think there is absolutely nothing.  Gratitude is always present – we just have to look.

The bible has a lot to say about gratefulness and long before it was the buzzword it is today.  You may not believe it but the bible is a very wise book with hidden nuggets of truth that people of today think they are discovering them for the first time but there were in the bible all these thousands of years.  There are hundreds of verses in the bible of the people giving thanks to God.  “Oh give thanks to the Lord for he is good” says the word.  Yes, Mom and I are believers and we know the power of being grateful in the enriching of our lives.  Because most of our blessings have come from God.  Those of you who don’t believe can still be thankful as you look around you but I encourage you to think about what role a good God may have in your blessings.

I am leaving shortly to go see Mom at the nursing home.  We will tallk and reminisce and I KNOW the conversation will turn to something Mom or I am thankful for.  It is a legacy Mom is leaving me that I will treasure each and every day.  She is the most grateful person I have ever known in my life and I am grateful to have her as my Mom. I encourage you to leave a legacy for your children or husband or grandchildren, friends or coworkers as being known for a person with a grateful heart. We live in a dark world.  Gratefulness sheds powerful light into your own life and the lives of everyone around you.

A while back I was struggling as to how to add more gratefulness to my life.  If you knew me you would know I LOVE my tea and drink tea literally all day long.  So…. I got a jar, any old jar will do and some small slips of paper and a pencil.  I put these right next to the  kettle in the kitchen.  Every time I put the kettle on for a cup of tea I wrote out something I was grateful for.  It could be something profound or something as simple as remembering to charge your phone.  I have hundreds of these little slips of paper and often when I am feeling very down as I often do with the major stresses I am under when you are a caregiver to a person who is continuing to fail and you will probably lose soon, and I read them over and my heart is lifted up and I can face a few more hours or days of walking in the light instead of the darkness of life.

And today I am grateful to all you who have chosen to read this blog.  I don’t know you personally but I thank you for taking the time to read the musings of a person who struggles through life just like you and can write and hopefully say something meaningful to the world out there in cyber space.  Thank you.

Autism and Caregiving – Mind Grind of the Worst Kind.


Over the past few years, especially since Mom had her heart attack and developed congestive heart failure,  I seem to be struggling more and more to a greater degree as time goes on.  I struggle with  depression, extreme tiredness, volatility, extreme sensitivity, rumination, perseverance, black and white thinking, and extreme compartmentalism as well as a host of other things.   I just seem to not be able to manage this caregiving thing and often desperately want release despite that meaning Mom will be no longer with me.

I have tried so many things to calm my life and reduce the stress I am struggling under.  I am swimming at the YMCA  four times a week.  I have a strong faith which gives me the strength I rely on to do this job.  I try to eat well, take my vitamins, get enough sleep,  spend me time, rest.  However,  the desperation just seems to be ramping up day by day.  I am afraid I will crash in a way that will not allow me to continue to daily look after mom.

So I asked myself,  what the heck is going on??  Why can’t I walk this journey one foot after the other in time to the beat of our lives and do it in a way that is healthy and less stressfulTh?  I did not have an answer so I asked my Doctor.  She laid it out plain and square.  “It is your autism”, she said.  I asked her to explain.  Here is what she revealed about having autism and being a caregiver.

On a global scale, autism can cause high anxiety and depression.  That is a known fact.  I suffer from both of these things on a good day let alone a bad day.  Any worry about Mom morphs into hyper-viligance and high anxiety.  So when I phone Mom in the morning and she says she is having a bad day with shortness of breath etc I panic big time and  start worrying is this going to be her last day?  On the contrary, if Mom reports that she is having a good day,  I relax somewhat although never completely.  (yes, I know, maybe I should not be phoning her each morning.  I am setting myself up for problems)   Depression sets in as I am too weary emotionally to do the other things in my life I need or want to do.  Depression sets in when I do not see an end to this journey. Depression sets in as I struggle to imagine what life is going to be like after Mom is gone. The anticipatory grief is a very constant travelling companion as I venture on this journey.  How will I survive without her?

On  more specific autistic traits,  I have a few which are giving me a really hard time.  One of these my doctor tells me is my inability to compartmentalize.  I don’t understand it completely but other people in my situation would be able to put Mom off to the side when other things are front and centre.  Unfortunately,  Mom is ALWAYS front and centre.  I can’t set her off to the side, I can’t let my brain rest from thinking about her.  It’s 24/7.  Hence the extreme weariness and stress.  I can’t rest literally.  I can’t take a break.  With Mom in a nursing home now, my Doctor is trying to get me to self-talk about how Mom is being looked after in a good place.  I do not need to constantly think about her.  I need to let the staff do their job to look after Mom and  I can relax or at least try to, knowing the staff will contact me if there is a problem.  I’m trying this self-talk and I add that God is looking after her too and he can do a much better job than I can.  Hey, he is the king of the Universe!

Another problem I have which aggravates everything I do is that I ruminate about everything.  I go over everything in my mind over and over and over and over – get the picture!?  This is extremely exhausting and frustrating when you can’t stop it.  Everytime I have to talk to a nurse or someone else at the nursing home I have a script I develop and repeat over and over maybe 50 or 60 times and then if I revise it that is even more repeating.  It’s like an irritating ear worm that just won’t stop.  And as I keep repeating I keep getting more and more anxious.  A vicious circle. A brain grind of the worst kind.  This doesn’t just happen with people connected with Mom – it may happen with anyone I have to say something to in my life.

And when you have Mom front and centre ALL the time, and  you are ruminating about everything in your life you start chanting to keep everything together.  I chant jingles, license plates, adds, street signs, words I hear from conversations around me.  Over and over and over.  I click my teeth together like I am chattering from the cold.  I pick at my fingers constantly.

Then with this all happening and you are so exhausted you become touchy, grouchy, and just plain miserable.  Volatility  happens in the more extreme moments.  Every little thing bowls you over like it was a giant tsunami wave.  I left a parcel for Mom the other night at the nursing home.  I did not want to go up to see her because I was sick.  The parcel got misplaced.  I was frantic and  so upset.  My emotion meter would have read ” WAY OVER THE TOP”.  The parcel was found a few hours later.  It was not the end of the world.  My whole life is “WAY OVER THE TOP” these days.  My co-workers are getting used to me having meltdowns over trivial things at the library.  Unfortunately I am not getting used to it. I am ashamed and embarrassed.   Meltdowns seem to be the norm.  I seem to be in a perpetual state of apologizing  these days for my rash words, my crying, my complaining.  My emotions are all over the map as I walk this journey.

These are a few ways my autism makes it much more difficult to be  a caregiver to my Mom.  There are several other traits which also make it hard.  All in all, this is a desperate journey I am on.

 BUT…  my loyality to my Mom,  my attention to detail in her daily care,   my focus on what needs to be done each day, my determination to see this amazing journey to it’s completion,  are just a few of the positive traits my autism has given me to indeed complete the journey I am on.

With the wonderful people I have around me, and most importantly with my faith in God,  I will get through this somehow.  I am on a parallel journey to see what I can do to use all that my autism has given me – the worst with the best to set before me a plan of strategies to lessen my stress and weariness.  My life may be a bit of a mess right now, but I have the MESS iah  who is an expert at dealing with messes.  I will daily hand over to Him my messes and trust that He will turn them into messages of love and comfort and rest for me and he will he will turn my brain grind into the BEST kind.

Ambivalence – a Nasty Word

I spent many a summer as a child playing ping pong with my cousins at our summer homes.  We loved the game and enjoyed trying to beat each other.  It was a thrill to be part of that fast paced back and forth activity and the faster we hit that ball the better.  It dazzled our eyes and minds as we watched that little ball hurtle back and forth with the whack of our paddles.

So fast forward to the present and I feel like I am in a life game of ping pong.  This will take a bit of explaining.

My title says, ” Ambivalence – a nasty word”.  If you have ever felt ambivalent about something you know it is not a nice place to be in.  When you are ambivalent you are on shaky ground, you are in a state of disorder because nothing seems for certain.  In the world of being a caregiver to an elderly person close to the end of their life ambivalence creates all sorts of tension.  What I am specifically talking about is when a person is close to the end of their life and you are worn out from caregiving you can feel two ways.  You can fear losing the person and then you can also wish it were over.  Yes, now I  have said it.  I have said what no caregiver wants to admit they feel.  But it is real.  It is real with all of us to some degree.  Being ambivalent in regards to your loved one often brings about strong feelings of guilt.  You might say, ” How could I ever feel that way?  I must be a horrible person.  ” For the last number of years I revealed only to a select few in my life my ambivalence because of the guilt ridden feelings I would have.  But my doctor has discussed this with me many times and assures me this is a universal feeling.  So I am going to “come out” so to speak and dare to give voice to these ambivalent feelings I have.

I can discuss these feelings now because I know in my heart of hearts that my wanting Mom to pass away  at desperate moments has absolutely nothing to do with my love or lack of love for her.  I fiercely, madly, totally LOVE my mom with all that is within me.  These ambivalent feelings I have take nothing away from that love.  In fact, it is out of that love that I  sometimes want her to pass on to Heaven so she will no longer suffer and she will be happy and well.  It is a selfless act of wanting to release the most valuable person in your life so they will be at peace.

Granted sometimes as caregivers we are so overwhelmed, so weary, so distraught that we want release too.  We want this crazy life to end so we can live normal lives again.  This is human and understandable to anyone who is a caregiver 24/7.  I think it is one of the hardest jobs we will ever be asked to do.   We don’t have to feel guilty for our humaness.

Let me shine a light into my ambivalent life.  At the beginning of this blog I mentioned playing ping pong.  My ambivalence is very much like a fast paced ping pong game.  Like the ball whizzing back and forth, my mind races back and forth between fearing and dreading the moment my beloved Mom is no longer with me and wanting her to go so it will all end.  At night I have trouble going to sleep fearing she will die in the night and I won’t hear the phone.  Yet when I wake up in the morning and no  phone call has been made I think to myself I am going to have to struggle through another day of caring for Mom.  When I call her in the morning I dread what she will say to me when I ask her how she is.  If she says she is having a terrible day I think to myself maybe the end is near.  Maybe soon this will all be over and Mom will not suffer any more.  On the other hand, if Mom says she is having a good day I wonder how long this will go on – days, weeks, months??  I will have to watch her slowly succomb to her congestive heart failure.  I often pray for a speedy heart attack that will take her to eternity in the blink of an eye but then in the same moment I panic when I think of living here on earth with out her ever near me again.

Ambivalence is indeed a nasty word and more than that it is a very nasty feeling to have.  Like that ping pong ball I whiz back and forth all day long and I mean all day long!  I am in a championship ping pong game that is lasting so long it would be in the Guinness World Record book.  And as it lasts longer and longer my anxiety, grief and desolation become more etched into my life.  Ambivalence is not meant to be a way of life but when you are a caregiver it often overtakes your life.  It is like a nasty ear worm that won’t let you alone.  It sucks the strength out of you and brings you to your knees in pain.

How do we deal with such a nasty word?  Well, I asked my doctor that very question today.  She said we basically need to understand that ambivalence is a normal reaction to a very difficult situation.  We need not make it worse by beating ourselves up over feelings of guilt but to accept that it has NOTHING to do with our love for our loved one.  It is out of desperation in that very difficult situation that ambivalence lurks.  We need to try to accept our feelings and not judge them and just continue with our journey of doing the best we can for our loved one.

For me,  I have a strong faith so when I have feelings I want it all to end and Mom go to Heaven I know she will be in a beautiful place where she will see Jesus face to face, and she will see Dad again and her own parents.  She misses her Mama just like I will miss her.  I know she will no longer suffer as she has done so for over 20 years with the effects of a stroke.  She will be able to walk on her own, she will have a  “new” head like she has wanted for 20 years.  She will be free of the diabetes and all the other problems she has had.  She will have a new heart, one that is strong and healthy.  That to me is gold, treasure beyond belief for my Mom.  I want that for her so much but for her to have that I have to give her up.  I have to live the rest of my life on this earth without her.  She is the one who gave me my life.  She carried me for nine months, she has known me my whole life.  Noone else on this earth can attest to that.  She holds my dreams, my roots, my very life.  What will I do with out her.  I will be adrift in a raging sea.  I will be a tree with no roots, toppling over in the slightest whiff of wind.  I am so scared.  I am terrified of losing her.  It is my worst possible nightmare.

While in this horrible state of frantic ambivalence I have to grab hold to the one thing that is on both sides of this ambivalence and that is the LOVE I have for my Mom.  It is the one stable, constant factor in all this craziness.  I will hang onto it as I continue to whiz back and forth across the ping pong table and when all is finally done, it is the LOVE that will be my anchor in the raging sea and it will be the new roots that will start to grow as I hang onto the precious memories of my Mom.  And of course, a LOVE much greater is at play here too. And that is the LOVE of my Jesus who will carry me through this ambivalent period and into the unknown ahead.  His LOVE will also be my constant, my everything  I need, my ENOUGH.

Enough said.


The “Long Haul” Part 2

I am again long over due in writing a blog post.  It seems a lot of things in my life are long overdue.  My last post was on surviving in the “Long Haul” that period in a caretaker’s life when there are no real crisis but you have no idea when your job as a caregiver will end and you must be in marathon mode instead of sprint mode.  How do you pace yourself so you don’t burn out before the end of the journey.  How do you take care of yourself so you stay healthy enough to do all that you still have to do each and every day for who knows how long?

I am in this “Long Haul” but I am more stalled than running a marathon.  The things I want to do or should do seem overwhelming and I often sit in my hammock chair for an hour or more and just rock back and forth, back and forth, thinking and fussing and praying.  I feel my journey has taken me to the brink of a cliff and I can’t reach the other side with out falling into a black hole.  I hover at the edge and on the other side I see all the things I want to do – my painting, reading lots, my crafts and  my greeting cards to make, organizing around the house, painting the laundry room, reviving my garden which has been neglected, writing this blog more often, and so the list goes.  They all sit and stare at me from the other side  and mock me.  And I stand immobile, too exhausted to even try to reach the other side.  Is this burnout??  I put a picture of a large truck carrying a part of a wind turbine on this blog.  I imagine a large truck with an even larger load on it’s rig carrying it on the long haul to a destination far away.  This is something how I feel.  I’m in the long haul with a heavy, over sized load.  And not only that but that wind turbine piece is part of a much bigger contraption that will whip up the wind.  I seem to do a good job of whipping up the wind so to speak.  I seem to take small insignificant things and whip them up into something much much bigger and create many problems for myself.  I am having problems at work, at my home, with the nursing home, with friends, with strangers.  There is a frenzy feel to my life despite the immobility I also feel.  They are strange bedfellows.  I can’t sleep at night for ruminating about every thing under the sun.  I can’t function in the day for ruminating about everything under the sun.  This “Long Haul” is wearing out my tires, my engine and I am constantly running out of gas.  So what do I do??

Well, as I said in my previous post on the “Long Haul”  I have to look after myself – somehow.  If I am not managing to read or do my crafts or other things I would like to do maybe I need to take a step backwards and slow down, even grind to a halt for a while.  Maybe it is OK to spend long periods in my hammock chair.  But instead of ruminating I can listen to calming music, or pray or sleep.  Maybe it is OK not to go crazy on the crafts but instead start with one little project and focus only on it.  So I have chosen a cardinal pattern for a christmas card I am doing.  That is all I am doing.  One card at a time.  Maybe it is OK if I do not get the book read for my book club.  Mom was always a reader who read the first couple of chapters, then read the back of the book to see how it turned out and then read some of the middle.  I used to laugh at her but maybe right now it is just the thing to get me through a book.

One positive thing I have started up, is going to the YMCA and swimming in the heated pool for 40 min. 4-5 times a week.  Being stuck in the driver’s seat of a “Long Haul” gets you cramped and sore.  And my fibromyalgia is really acting up as well as my arthritic knee.  The relaxing warm water and gentle exercises I am doing is really helping by actually giving me more energy and less pain.  I am also trying to eat a little better.  Still a long ways to go but putting less salt, carbohydrates and sugar into me.   AND I am taking my vitamins almost daily.  My Mom would be so proud.

I find a “Long Haul” almost worse than a crisis.  A crisis has a beginning and an end.  You know when you can move onto other things.  You know when it is resolved.  A “Long Haul” just stretches out for miles with no end in sight.  No resolution, no letting your guard down, constant state on eyes on the road for safety and for surprises like that deer that suddenly appears in your headlights and you have to slam on the brakes.  Caregiving in the “Long Haul” is dare I say tedious??  It is relentless, and never lets up.  It’s always on your mind and a load on your back.

One very useful tool to combat the relentlessness of the “Long Haul” is GRATITUDE.  I have found this to be a life -saver.  Gratitude can stop the rumminating,  it can stop the depression from settling in, it can keep you grounded in the present rather than worrying about the future or lamenting about the past, it can bring meaning to the lonely hours as you truck along on this journey, and it can clear the clouds away under which you normally trek along.  GRATITUDE is like balm in a wound.  It’s like a hug from a close friend, it’s like a kind word spoken into your life ,  it’s like a ray of sunshine splashing all around you and it’s an attitude that is worth every second you spend on it.  I will speak more on gratitude in another post later but it’s my secret weapon to get through the “Long Haul”.

And finally,  the “Long Haul” becomes much more manageable when I relish every moment I spend with my Mom.  She is having many more bad days.  I struggle as I watch her suffer.  In desperation I ask God for the journey to end as I know she will be in a beautiful place.  But that is not for me to decide.  My job is to be faithful to the job God has set before me.  That “Long Haul”.  I strive to make my Mom’s life as enjoyable and as comfortable as I possibly can.  Right now that means keeping her supply of cookies always topped up!  And watching Lawrence Welk with her every Saturday night at 7pm.  That means advocating for her and tweaking her medications so she will be comfortable when the bad days come.  That means phoning her twice  a day and spending time with her almost every day.  These and so many more things I do to make Mom’s last days however many she has as lovely as possible.

And I can only do the “Long Haul” day in and day out because I have Jesus who often sits in the driver’s seat and lets me just come along beside him for the ride.  It’s when I take over the driving that things get very difficult but if I just let Jesus drive I can do this “Long Haul” in his strength and power.

What To Do in the Long Haul

In my last post, I talked about the fact that looking after an elderly person does not follow a specific time schedule.  You have no idea when your job as caregiver is going to end.  It could end tonight or it could end 10 years from now.  Knowing this, it makes living in a perpetual state of anticipatory grief impossible since you would burn out faster than a candle in a hurricane.  Living in the middle of the “long haul” requires a much gentler, less intense way of existing.  It requires a lot of self-care – something I have never been good at.  As I thought about my last post,  I knew I had to have a plan in place as to how I was going to navigate the “long haul” sort of like a plan someone running a marathon would do.  I had some ideas of my own which I will comment on here but I also came across an excellent magazine put out by Prevention Magazine called “The Essential Guide to Self Care”  I have been given lots of material on self care and read some books but I really like this simple guide put out by Prevention Magazine.  I will be quoting from it periodically during this blog and in blogs to come.  So here is my own “essential guide” on how to get through the next few days, weeks or years as I continue to look after Mom in the nursing home.

  1.  Try to stay as much in the present instead of dwelling in the past or anticipating the future.  Staying in the present helps greatly with  feelings of guilt  and regret over things of the past.  It also prevents you from getting highly anxious about what is going to happen in the future.  Yes, it is good to plan and have contingency plans in place but beyond that you just worry and fret and increase your stress level.  It takes discipline to stay in the present.  Our mind easily wanders to what ifs and should haves.  One thing that helps me is my faith.  Part of the Lord’s prayer says, ” Give us today our daily bread”  That means deal only with what you have to for today and God will take care of the rest.  He will give you what you need to do all that you need today.  That is all you need to worry about.  Staying in the present also helps me not to ruminate over things so much.  Being autistic,  I easily ruminate over and over about things in the past or things that are going to happen or might happen.  It can drive me crazy  like a broken record stuck in a groove.
  2. I bought a weighted blanket for myself.  With the fibromyalgia pain getting worse and worse and my sleep not good, I had heard that a weighted blanket might help.  I am pleased to say that just after 4 days, I am loving this blanket.  I am sleeping much better.  My pain is less and even my restless legs at night are better.  I don’t know whether it is all in my head but I will take anything I can get right now.  I have it on me now as I write this and it is so soothing.  I often used weighted vests, blankets etc when I worked with autistic children with favourable results so I thought since I am an autistic adult it might just help relieve some of the daily stress.  I think it is working.
  3. I am starting a travel savings account.  My account is basically a jar to put my spare change and whatever I can afford to put in it as the weeks go by.  I really really want to go out west and I also really really want to take a bus tour of Newfoundland (I live in Canada).  Somehow having a positive goal to see happen down the road helps soften the inevitable event I so dread – the passing of my Mom.  It gives me something to keep going for after she passes.
  4. Take up a new hobby or restart one you have done in the past.  For the past number of years while looking after Mom in my home, I neglected most of my former relaxing pastimes.  I stopped doing my greeting card business, I stopped knitting and sewing.  I stopped painting.  I stopped doing most everything creative.  I was totally into survival mode.  Now that Mom is in a nursing home I still visit her almost every day but I have a little more time to reinvest in some ME time.  I thrive on creating.  I love any type of craft work and creating for me is like taking gulps of fresh air out in the middle of the pristine woods.  It’s life lived in abundance and joy.  I had lost that totally.  This past few months,  I have taken a mitten knitting course, a quilting course, and in the fall I hope to do a rug hooking course.  I am doing some sewing again and I hope to do some creative patchwork on jeans.  I would also like to get a ton of Christmas cards done to sell in a craft show near Christmas time.  I have oodles of plans but as of yet I do not have the energy to carry them out.  I hope that will change as I change my attitude toward “the Long Haul” and my stress levels decrease.
  5. Another thing that has been absent from my life as I focused solely on grief was reading.  I could not read, not even a magazine.  I am happy to report that since I have taken my eyes off grief I have been able to read again – even fiction.  I have joined two book clubs which keeps me busy.  And of course working in a library is always a dangerous occupation when it comes to making my way out of the library at the end of a shift without at least two or three new books to add to the ever higher pile of library books already at home.  My goal for this “Long Haul”???  Just to read, read, read!!!!! Oh, and NO grief books right now.  Funny books, interesting books, cook books, children’s books, biographies,  new autism books  and christian books.  And lots of magazines,  I LOVE magazines.

So these are only a few of the goals I plan to have as I manouver through the “Long Haul”.  Stay tuned for further blogs on my goals to reduce stress, enhance joy and peace  as I take on this marathon and make life enjoyable once again.

A New Season of Grief

You all haven’t heard from me for quite a while, since April 7 to be exact.  I do apologize for that.  I have been strangely going through something I can’t quite explain except to say that it must be a new season of grief.

For the past couple of years I have been immersed in grief, consumed by grief and living out feelings of grief every day.  I had expected my Mom would pass away sooner  rather than later and I was going through what is called anticipatory grief.  Every day I thought it would be the last day with my Mom.  I cried often, I couldn’t sleep, I was anxious, I thought of little else except of getting through the grief I felt.  I read every book I could find on caregiving, grief, stress, death, loss, I had a grief counsellor, I went to a care-giving group,.  As I said, I immersed myself in grief thinking any day I would experience the ultimate grief – the loss of my Mom.

It’s been a couple of years now of this intense descent into the world of grief.  A person cannot keep this up indefinitely.  It destroys you.  And it was destroying me.  I came to the point a few months ago where I couldn’t bear to think about grief issues any more.  I know they are still there but I can’t deal with them anymore.  So I have very nicely wrapped up all my grief in a lovely gift box and tied a ribbon tightly around it so nothing escapes.  It sits on my shelf, waiting for the day when my Mom does actually pass away.  Then I will get the box down, cut off the ribbon and once again start the process of grieving openly.

Mom might live for years still.  She is doing not too badly in the nursing home.  I still go see her almost every day.  We spend our time chatting, reminiscing, laughing, crying, and of course every Saturday night watching Lawrence Welk on her TV.  Must never forget that!

I couldn’t continue to live my life and grieve constantly.  Grief and living don’t do well together.  I could either stay stuck in a grieving stage that engulfed my whole life, or I could choose to put my grief on a back burner and try as best I can to go forward with my life.  In the last couple of months I have chosen the latter.

Unfortunately, I am in the middle of writing a blog on myself as a grieving autistic adult.  If I put my grief away in a box, how does that affect my blog?  That is what stopped me in my tracks as to keeping up with my blog.  I didn’t know what to write.  My blog had come to a standstill.  But I still want to write about this journey of Mom and me and about the grief.  And if I can’t deal with writing about the grief then isn’t that really part of the journey, the process in grieving for someone you know is eventually going to die??  It’s all part of the big picture and I guess it needs to be written about because I know there must be others out there who start grieving the imminent loss of a loved one and then that loved one just keeps on living for who knows how long.  You have to do something to preserve your sanity,  to protect yourself, to inoculate yourself from burning out and turning bitter.  You have to put the energy you put into grieving into something more positive, like taking care of yourself, doing daily normal tasks like grocery shopping and visiting with friends.

I have so much I want to do with my life besides grieving.  I have a ton of crafts I want to do, I want to write a book,  I want to exercise, I want to volunteer, I want to speak on autism to groups,  I want to read and read, and read.  I guess I am saying I want my life back.  Grief sucked it away.

Unfortunately, I have to admit I am not there yet.  Not when I am reminded every day I see Mom that a day is coming when she will be no longer with me.  That tightly wrapped box of grief constantly has a leak in the box.  It seeps out and hits you at unexpected moments, it seeps into your dreams, your anxiety and especially into my physical well-being.

I am so exhausted all the time.  I have fibromyalgia that is in it’s worst flare up I have ever had.  I forget to eat,  I can’t sleep well most nights,  I have no motivation to do those craft projects, no motivation to write, or exercise or read or do much of anything for that matter.  So am I fooling myself with tucking away the grief?  Is it a form of denial instead of a conscious, healthy decision to change?  I’m not sure at this point.  In fact I am very confused about all this.  How does one navigate the long haul and survive intact?  That’s where I will leave this blog tonight.  But I will continue to write again.  Perhaps more of the mundane things of being a caregiver to my elderly Mom.  Perhaps exploring more of the questions a journey like this forces me to examine.  And perhaps writing about how the grief never does leave you even if you attempt to banish it from your life.  I think I am learning I have a constant companion despite my best efforts to shoo it away.  Maybe I just need to exclaim at the top of my lungs GOOD GRIEF!  and get on with my day.

Laughter- what keeps me going!

I’ve been thinking about writing this post for a long time but just couldn’t get my thoughts together the way I wanted.  That’s not to say I’ve got them  the way I want tonight but I just recognize that this is an important topic in the journey of grieving and I wanted to get my thoughts out there.

There have been many studies on the importance of laughter to the point that it is now a specific type of therapy you can participate in.  Laughter has been proven to reduce the level of stress hormones and increases the level of health enhancing hormones like endorphins which produces a stronger immune system.  Many people look at stress as a threat or challenge.  Humor helps us see things more lighthearted making them less threatening.  We can therefore handle stress in a way that challenges us rather than bringing us down by threatening us.

I found it interesting to find out that laughter helps you REFRAME.  This means looking at a situation through a new lense which makes it not so overwhelming.  For those of us with autism,  getting overwhelmed is a common occurrance and stress will exacerbate this.  If I can lessen my sense of being overwhelmed by laughter then that is a good coping skill to learn.

There is also a link between humor and resilience.  Studies done on POWs during the wars showed that those who could see the humor in things were more resilient and more likely to survive.  Resilience is very important in caregiving because often you are looking after a loved one for a long long time and this can wear you down.

I like this quote by Kahil Gibran.  He says,” The deeper that sorrow carves into your being, the more joy you can contain.”  Perhaps this is why I have laughed more in the last 5 years than in many years before that.  So much grieving has been happening over the last years.  So much stress, anxiety, fear, worry  and being overwhelmed have been my daily companions.  They go with me everywhere, taunting me, immobilizing me and bringing me to deep, dark places.  But I find that as I laugh  my world brightens even if only for a few moments.  Merrily Belgum once said, “When you laugh, you get a glimpse of God.”  How true that has been in my life.  When I laugh, I feel I am close to God and He is taking charge and sending me a breath of fresh air. It says in the bible in Judges 19:6  “Let your heart be merry”  and in Proverbs 15:15 He that is of a merry heart has a continual feast.  There is much wisdom in these verses.  We’ve all heard the quote,” Laughter is the best medicine.”

It’s funny but as I look over the last number of years when they have been some of the hardest years of my life as I looked after my Mom and continue to do so,  my ability to laugh at things, even morbid things has risen greatly.  It’s like the worse things got, the more I began to laugh.  I think I caught onto something that was a life saver for me and still is.  Laughter for me is the life jacket snug around my body as I wildly flail around in the roaring waves of the ocean that threaten to engulf me.   And I believe that the ability to laugh has been a wonderful gift from God to help me get through a very tough time.

I LOVE to laugh,  There is not a day that goes by that Mom and me are laughing at something I or she has said.  I laugh over stupid things I do.  I laugh over stupid things other people do ( I don’t always let them know I am laughing at them)  I laugh over things I find ridiculous on the news.  I laugh over posts I see on Facebook.  Sometimes I am laughing so hard the tears run down my legs!

Three years ago this April I brought home a new cat.  His name is Gus Gus.  I am sure he was a gift from God to get me through these hard years.  He makes me laugh all the time.  I just have to think about him and I start to laugh. I have never had a cat like him.  It really makes no sense but for some reason he has come into my life as my Joy Boy.  I have never laughed so much over a cat or any animal or person in my life.  And why now?  As I said, I believe he is perhaps a cat angel sent to bring joy into my bleak days.

The other strange thing that has happened is that my Mom has quite suddenly developed a very keen sense of humor.  She is hilarious and has the nurses laughing down at the nursing home.  I grew up with her being a very stoic, staunch Mom.  You didn’t joke with Mom or play tricks on her like I did with Dad but for some unknown reason in her old age she has become a funny funny lady.  I love her sense of humor and laugh at her and with her all the time.  She is always coming out with very funny sayings and I just shake my head and laugh till the tears come.  The other day,  she and I were just talking when suddenly she blurted out, Lorna, I need a face lift!  I’m sorry but I wasn’t that sympathetic with her predicament.  I laughed till it hurt.  She’s 91 in a few days.  What does she need with a facelift?  I remember at my Dad’s wake it was all very serious of course.  My little nephew who was about 5 at the time came up to my brother – his Dad, who was talking to someone.  He then proceeded to declare,” You know the guy in the box over there?  That’s my Grandpa.!  Well, the room broke up with laughter.  And it was good.  It’s OK to laugh where there’s sadness..  Virginia Woolf said,”The beauty of the world has two edges, one of laughter, one of anguish, cutting the heart asunder.  And the famous philosopher Socrates said, “The comic and the tragic lie inseparably close like light and shadow”

Another facet laughter has is it’s ability to bring people together.  Mom and I , in my younger years, were not on good terms with each other.  There was a lot of discord,  a type of love-hate relationship.  When Mom came to live with me I must admit I was a little apprehensive and scared about how it would go.  I had always said I would NEVER live with my mother.  There was much healing that needed to be done and over the course of the 5 years I looked after Mom in my home and still as I continue to see her every day at the nursing home, God blessed our relationship  with bountiful healing and restoration.  There is a quote by St. Francis de Sales that says, “Laughter is the foundation of reconciliation”  I firmly believe that laughter has brought Mom and me much closer together and has helped to heal deep wounds.  If Mom died tonight I would have no regrets, only wonderful memories of us laughing together.  If amazes me to think that God has used laughter to be such a part of this journey Mom and I are on.

When we are in difficult situations we all have different ways of coping.  Some turn to alcohol, some take up jogging, some just flounder as if lost.  As I look back over the last 5 or so years, I can now see that laughter has become a coping mechanism for me that I never had before.  Laughter just takes the sting out of so much heartache.  Laughter allows me to take something so awful and cut it down to size.  Laughter gives some control back to me in my life where I do not have a lot of control over things.   Laughter allows me to see things in a new light, a less glaring light.  Laughter gives me a way to talk about the hard times without overwhelming my friends and family.  Laughter brings a sense of purpose into my life when sometimes I don’t see any.  Laughter changes the way you look at life around you.  I am always now looking for something to laugh at so I can do a post on Facebook.  I love to make others laugh even  if it is to the expense of myself.  If in my sorrow, I can cheer up someone else then life takes on new meaning.

God doesn’t promise sunshine all the time.  He is taking me through some pretty fierce storms but He has given me the gift of laughter to help get me through, given my Mom the gift of humor and given me a Joy Boy cat.  ( who by the way is sitting right next to me as I type this)  What more could I ask for?

To all those who are caregivers and to those who are grieving,  laughter may not be your coping mechanism like it is mine but I really feel there is much worth in having a sense of humor in dark times.  It really does help.  Give it a  try.  You may be amazed at what may change in your situation just with a little mirth.  It’s a wonderful stress buster if nothing else.

As I said above, I can’t get over the fact that my wonderful God,  who many people see as a harsh Father, would use laughter to bring relief, restoration, and joy into my life.  In moments when I am doubled over in laughter, I get a glimpse in my mind, if only for a moment, of God laughing right along with me.  And it just makes me laugh some more!