I Can’t Remember

I have been blessed beyond measure with having my Mom for 92 years so far and up to a few months ago she has been sharp as a tack for the most part.  Mom’s take on things is that she has only lost maybe one marble!  When my nephew heard that Grandma said she had lost one marble and he just happened to find one on a hike outdoors, he had to make sure he brought it to her the next time he came to visit in case it was the one she lost.  Despite her ailing physical health her mind continued to serve her well and we enjoyed many a good talk.  I have treasured the fact that I have my Mom to talk to but something tells me this may not be the case for much longer.

When Mom lived with me for 5 years,  I looked after every part of her life.  I knew her inside out, upside down and backwards.  Because I believe strongly she has autism like me, I often had to intervene with doctors and other medical personnel on many issues like the increased sensitivity to medications and their side effects.  Like me she often needed much less of a dose of a medication for it to be effective.  She reacted with rare side effects,  she could not explain to the doctors where the pain was, or whether there was even pain, or accurately describe what was going on in her body.  Her default statement was often, ” I just don’t feel good”.  This is where I often had to jump in to clarify as best I could what was happening with my Mom.

When Mom moved to the nursing home, I visited her for at least 2 hours almost every day, and if she was sick I would try to stay with her all day.  I kept telling myself, ” noone knows Mom like me.  She needs me to watch out for her”  And that is what I did until Covid 19 so rudely intruded into our lives.

When Covid 19 hit in March of this year, the nursing home shut up tighter than a safe in a bank.  No access was the new norm.  Thank goodness Mom and I had telephones and could still talk to  each other.  But no more was I there every day to check on Mom and see the subtle changes that happen as you grow older.  I suddenly had to trust her to other people, people for the most part who were strangers.  This has been excruciatingly difficult for me and for her.  We had never been more than a few days apart in over 10 years.  My autistic brain did not compute this major change very well at all.  My stress levels were at their max.  On top of this I was dealing with the diagnosis of cancer of the uterus and all that would entail during Covid 19 pandemic where everything is shut tight including treatments for cancer.

As the weeks passed,  Mom and I got into a bit of a rhythm of calling back and forth.  I was able to have my surgery and then start on radiation treatments.  It looked like this might be our new norm for a long time.

Then lately some things have been happening that have gotten my antennae up.  Things began changing with Mom.  First she got pneumonia and was very sick but she was a trooper and came through it.   I, on the other hand, was desperate that I could not be there to comfort her, sit with her and advocate for her.  I felt helpless and scared.   After this, she suddenly was much weaker than she had ever been.  She slept alot she said.  She didn’t want to eat.  She couldn’t hold the phone to her ear for very long before she was too tired.  Some days she was feeling so bad she did not want to talk at all.  Then one morning she sheepishly told me that she had waited and waited for  her breakfast only to realize later that she had already had it.  This raised alarm bells in my head.  This was not like Mom to forget like that.  Then last week she couldn’t remember on two nights if the nurse had been in to give her her night meds.  Again alarm bells went off.  Mom said to me apologetically  that she was just not the same.  She would say to me, ” I am afraid your mother is losing her mind”

I told these incidents to a friend who questioned why I was so upset.  She knew that Mom wanted to go to heaven and that I was ready to let her  go.  Why then would I be upset about her getting worse?  Wouldn’t that have to happen for her to die?  I suppose so, I thought. But that is not the way I wanted it to happen.  I wanted a quick exit – stage left.  A massive heart attack in the night or a stroke which would take her in an instant.  This is the way I imagined it.  Losing her little by little, piece by piece was not the way I wanted things to go.  Every new incident was like an electric jolt on my brain.  A new change that I had to get used to.  And I am confident that Mom felt the same way.  She felt the changes and I saw them happening.  And neither of us could do anything about them.  And I could not be with her to ease the fall.  She was falling headfirst on her own.  I could only watch and wince.

My autism is not dealing with this well.  Each new incident puts me into a tizzy and I frantically want to reach out and grab my Mom but Covid 19 blocks the way to her.  I am losing her bit by bit and can only watch from a distance.  I want to hug her and give her a kiss.  Oh if I could only hug her maybe I could stop her from disintigrating.  I could hold her together and never let go.

Yesterday,  I was telling Mom about my brother’s upcoming birthday.  She asked me quite nonchalantly what was Ian’s birthdate.  She had forgotten.  I guess a 92 year old can forget her son’s birthday.  At least she doesn’t have Alzheimer’s.  I still have pieces of my Mom left  Then just a little while ago I got a call from her out of the blue.  We had a little chat and then she thanked me for calling her.  She said she loved when I called her to chat.  Alarm bells.  Electric jolt.  I am ruminating on her words and whether this is another sign of her falling.  I watch her falling over and over in my mind.  I can’t get to her in time.  I am blocked from reaching her.  Tears streak my face as I anticipate there will be many more of these electric jolts to contend with.  To face head on.  To incorporate into a new normal.   Fear grips me as I struggle with the future to come.

Oh dear Lord,  I need a cup of tea badly. Something stable, and comfortable and comforting.  Yes, tea. And you Lord, will see me through.  You are with her when  I can”t be.  You will soften her fall and you will keep me from falling into despair.  You are our Rock and our High Tower.  You will hide us in the shadow of your wings.  You will never  leave us alone.

Missing Mom

In two days it will be Mother’s Day.  I can’t recall in my 60 years of existence on this earth ever missing seeing my Mom on Mother’s Day.  This will be the first.  All because of Covid-19.

Mom is in a lovely nursing home. Before that she lived with me for 5 years.  Before that I saw her every other day at her retirement home. Before that I spent every weekend at Mom and Dad’s house helping them clean, do yard work, and just enjoying their company.  Before that when I was middle aged I used to pack up my cats, my stuff and literally move home every weekend for years.  We would head out every Saturday morning to garage sales and then I would help Dad clean two churches.  Weekends were sacred times.

As you can see, I have been very close to my parents.  They have not only been my parents but my confidants, my source of help for anything and everything, my source of support and strength, my social fill in.   It may have been a bit strange but my parents were my whole world.  Not till years later did I find out that I had autism.  I think this helps explain this strong reliance on my parents.  The world was not a safe place for me.  It was often overwhelming, very challenging, and confusing.  My parents provided a solid, secure base from which I could go out and deal with the world.  My parents especially my Mom and I were soul mates.  We were connected on a level deeper than a normal family.  My parents relied on me too.  I was basically their only social connection with the world as they rarely had interaction with other people.  Mom, as I know now, is quite likely also on the autism spectrum.  She was very much a loner and resident hermit.  I was their life as they were mine.

The reason it hurts so much to separate is because our souls are connected.  unknown.

Mom and I are deeply connected.  Emotionally entangled like two giant octopuses with all their legs intertwined.  This has not always been a good thing but nontheless that is the way we have functioned as mother and daughter.  We feed off each other emotionally too.  If one of us is upset the other will be upset and vice versa.  We think what each other is thinking before it is said.  And most of all we fear losing each other to a degree that keeps us both in perpetual anxiety.

So…back to Covid -19.  As I said earlier, Mom is in a nursing home.  Her home shut up tight on March 14.  That was 8 weeks ago.  I have not seen Mom in 8 weeks.  I can count on one hand the number of times I have been away from Mom for 8 weeks or longer.  We have always been close by each other.  I can say that in the last 10 years or more I have only been away from Mom for 2 weeks at the most one time only.  Most of the last 10 years I have seen Mom nearly every day.

Mom and I are both in shock.  We miss each other terribly.  I missed seeing her for her 92nd birthday.  I am  missing Mother’s Day.  It’s been 8 weeks of not seeing the face of my dear mother.  How much longer is this going to go on??  And sadly that is a question no one can answer.  These are unusual, strange times.  Nothing is normal anymore.  A lot of things just don’t make sense anymore especially to one with autism. I’ve lost most of the connection with the one person in the world who means the most to me and this is likewise the same for Mom.  She is alone in the nursing home now.  I don’t come to visit every day like I was doing. No two hour visits, no hugs, no watching Lawrence Welk together, no laughing over silly things my Mom does or says.  All gone.

What is the opposite of two?  A lonely me. A lonely you.  unknown

Mom and I are luckier than some.  We have the phone where we can connect each day several times a day.  It’s not the same though but it is better than nothing that’s for sure.  Mom has a hard time managing the phone.  She can’t get the hang of a cell phone so it is often not on her ear properly and she can’t hear or she touches buttons on the phone and things go haywire.  The PSW’s are wonderful in sorting out her phone problems.

But I want to see her!  I want to see her grin and I want to laugh with her.  I want to hug her and sit beside her on the bed.  I want to give her a peck on the cheek and stroke her hair.  I want to hold her hand.  I want to straighten her pillows and tuck her in with her favourite blanket.  I want to be there to gently put her slipper back on when it slips off  I WANT TO SEE HER!

As I stay home during this Covid -19 time I try to do odd jobs around the house or read or knit or snuggle with my cats.  But there are sometimes when I just cry.  I miss her so much it hurts inside me.  I panic sometime when I wonder when this will ever be over.  What if it is never over.  What if I never see my Mom again and she dies in the nursing home alone.  I can’t bear the thoughts of that.  I can’t bear it.

I did three things today – miss you. miss you and miss you.  unknown

There is nothing I can do about this situation.  Nothing.  Mom and I just have to wait and waiting just gets harder every day that passes.  How long?  How long till I see her again??

I miss my Momma.

Shock and Awe – Part 2

Yesterday I left off Part 1 with me frantically waiting for a call for my cancer surgery.  My surgery involved a complete hysterectomy.  Mom was alone in the nursing home with no visitors allowed due  to Covid 19. And I was at home desperately trying to figure out this “new normal” of isolation and social distancing.

One night around 9 am,  I got a call, a robo call from Mom’s nursing home.  It was to advise us that a health care worker had tested positive on the floor above Mom.  I was beside myself with worry.  Your worst nightmare is suddenly staring you in the face (shock).  I decided not to tell Mom lest it just get her too upset since she kept telling me that she was worried the virus would come to the nursing home.  14 days to wait to see if it spread.  14 days of dread.

While I waited at home, unable to see Mom I almost felt like I was in mourning.  I was mourning the loss of my love of being with my Mom ( we had not been separated more than a week in  over 10 years.),  I was mourning the loss of working at the library and all that was enjoyable for me there – my colleagues, the books, the patrons and yes – the money.  At first we were paid but then I as a page was laid off (shock).  Fortunately I was able to apply for government money allotted during this pandemic. ( ultimate awe)  I was mourning not being able to do the normal things I did every week like my tutoring and teaching my piano lesson.  I was mourning not seeing my friends.  I was mourning the fact that along with so many other establishments my church was closed.  I was mourning the loss of my life as I knew it.  And the scary thing was that I had no idea how long this would go on.  There were no constants anymore.  Things changed daily.  With my autism,  this was very difficult to comprehend and make sense of all the changes.  I felt lost and disoriented.  And dealing with a diagnosis of cancer did not help matters at  all.  Or the fact that Mom was in the middle of a Covid 19 outbreak.

But life must go on.  You make do with what you are dealt.  One thing that was especially comforting during this time was  a call from my surgeon who knowing it could be quite a while before i got my surgery decided to put me on a cancer medication that would help slow the spread and perhaps even reduce the cancer.  I jumped at the chance to take it even though I had to pay 155.00 out of pocket. ( it was normally a 700.00 drug but my insurance paid most of it ) ( great awe)  There were side effects but I didn’t care as long as something was being done to stop the cancer.

I was on the cancer medication 17 days.  THEN A MIRACLE HAPPENED.  Friday, April 3 I got a phone call – the most amazing phone call ever!! (extreme awe)  They were scheduling my surgery for the next Tuesday!!!!   Our city had not had a lot of Covid 19 cases so the hospitals were trying to fit in some elective surgeries that were more dire.  I had been told I would be at the top of the list.  I was so excited!!

Oh and more awe – Mom’s nursing home was given the all clear.  No new cases had appeared.  I could relax about Mom.

The surgery went as planned and because I have no other adults in my house and it was a pandemic so no one would come and stay with me I stayed overnight in the hospital.  I had a quiet room and a wonderful nurse and I was home by 10:30 the next morning. ( ultimate awe)  It was a bit scary being at home by myself when I had just had surgery.  I had planned well before the surgery so that I would have all I needed in groceries, cat food etc to keep me going for awhile.  I was thankful for the planning I had done ( great awe)  I was in a bit of good shock.  I couldn’t believe it was actually all over.  And now I just had to heal.  I had told Mom about the surgery with out telling her it was cancer and she kept in touch with me by phone.  It was so nice to hear her voice during this time that I felt alone.  I had good friends who ran errands for me, drove me and just checked up on me.

It was actually the perfect time to have the surgery because I wasn’t missing work or having to do anything major.  I didn’t even have to do the 4 hours each day I did to see Mom.  I could just rest.  This pandemic was working to my advantage right now.

About a week later,  I woke one morning with a feeling of dread.  Something just didn’t feel right.  When I talked to Mom she said all the staff were in gowns.  I didn’t say anything to Mom but I knew what that meant.  Sure enough, an hour or so later I got a phone call from the nursing home.  A resident on Mom’s floor had tested positive for Covid 19.  (frantic shock)  When I called Mom later she said her bathroom that she shares with the resident in the next room was off limits and she had to use a commode.  Then I really panicked.  I knew this meant that the resident with Covid 19 was right next to Mom.  I was in major shock.  How could this happen.  This only happened in nightmares.  Not only was Covid 19 in Mom’s nursing home it was almost bedfellows with Mom. You couldn’t get any closer to it if you tried.  I was a mess.  I was crying.  I was praying constantly.  I was afraid Mom would be terribly upset.  To my total surprise Mom was very nonchalant about the whole thing.  She said, ” I only die once”.  And she liked the fact that she didn’t have to go down to the dining room for her breakfast and lunch.  Well this was a strange turn of events ( ultimate awe)  I didn’t have to worry about how Mom was doing with all this.

So began a scary time of waiting to see if anyone else became positive.  A few days later I got another robo call from the nursing home.  The resident was now at the hospital and had tested negative twice!  They were doing more testing but it was possible this person did not have Covid 19,  (great awe)   Indeed a couple of days later Mom’s nursing home got the ALL CLEAR.  The resident had had a false positive.  ( ultimate awe)

So this just about brings us up to the present.  One more shock to report.  My surgeon phoned with the results of the pathology report.  I was cancer free at the moment YAY!!  ( extreme awe)  BUT  some of the results indicated it would be best if I had some radiation treatments ( shock).  Tomorrow I go to the cancer centre for a consultation.  I am thankful for the fact that I am cancer free and I am also thankful that the radiation will just increase my chances that the cancer won’t come back.

So that leaves me with still  not being able to see my Mom – probably not for a few more months.  Nursing homes are going to be the last places to open up again I suspect.  I have no idea when I will return to work at the library.  I am still struggling with trying to add structure into my day so I do not get depressed.   But hey,  spring is here.  All kinds of flowers are coming up in my garden and I don’t need to social distance from my flowers.  My cancer is gone.  Mom is safe at the moment and staying as healthy as she can under the circumstances.  We can still talk on the phone.  I am going to learn how to do Zoom so I can go to my virtual church service and join a caregiver’s group here in town.  This afternoon a dear friend came by and we sat outside social distancing and drinking tea.  It was the highlight of my whole week.  What we so took for granted just a few months ago now becomes priceless treasure in our eyes and in our lives.

I suspect shock and awe are going to continue in my life for a long time yet.  The world is just too mixed up and nothing is normal.  I can handle the shocks as long as there are the awes.  And as long as there is God there will always be awe and lots of it.  Stay strong and carry on.

Shock and Awe Part 1

I have not written a blog in quite a while.  I apologize but can only say that the last 2 months have been filled to the brim with so many incidents that I have been overwhelmed.  I can only charactize my life in these 2 months as full  of shock and awe.  The little girls face in this picture can either be showing extreme shock or a sense of awe and that is what this blog will be about.  A rollercoaster of events and emotions that even those with the strongest of stomachs may walk away with a tinge of green in their faces.

We don’t necessarily put emotions of shock and awe together in the same framework.  But that is exactly what the last 2 months have been like.  Shock – then awe, then shock – then awe and on it has gone like a crazy runaway roller coaster looking totally out of control but in reality it was all part of the ride.  That’s because God has been busy the last two months riding along with me and helping to turn the overwhelming shocks into amazing works of awe.  He’s been my amazing shock absorber.

So it all started about two months ago.  Life was pretty normal.  I was going to work, seeing my elderly mother pretty near every day, loving up my  cats and so on.  One morning I discovered blood when I went to the bathroom.  I was not too concerned although I knew that at age 60 this was not normal.  It did not stop so that night I went to Emergency.  I had a wonderful doctor ( part of the awe in the middle of the shock)  who very gently talked to me about how relieved they were that I had come down to Emerg. so fast.  There was talk of cancer (shock) and things started moving fast.  The doctor was setting me up with an ultrasound right away.  She was getting me a gynecologist appointment and told me to see my own doctor right away.  I was definitely in shock and some of my first thoughts as a caregiver were what do I tell Mom.  Do I even tell her?  What happens if I am too sick to come see her and look after all that I look after for her?  As a caregiver these are always questions that are on the tip of your thoughts.  As caregiver whatever happens to you also affects the one you look after.  You are connected in everything in a profound way.  I had decided I could not tell Mom after getting advice from her nurse and others in my life.  As the days went by I struggled with the thoughts of having cancer mostly by myself.  I did tell my church family to help me be covered in prayer.  I talked to my psychiatrist who gave me worst case scenarios to help my fears diminish.  I had a very very painful biopsy (shock) and then waited in dread for the results.  All through this time Mom knew nothing.  It felt like I was hiding something from her.  We tell each other everything but I knew this news would just put her in a tailspin of despair and no matter how much I wanted to confide in my beloved Mom I couldn’t do it to her.

During this time as I manouvered through doctor’s tests and visits I had a strange phenomena happen that I still can’t explain except to say it was the protection of God on my life in a lonely time.   I could see a wall of glass in front of me all the time and on the other side of the glass was all my worry, fear, anxiety, dread etc.  It would all peer at me through the glass barrier but it could not touch me.  I was literally separated from all fear, worry etc in my life.  It was a strange experience I have never experienced before but one of amazing awe.

I also forgot to mention that during this time I was quite sick with a virus that wouldn’t go away and ended at Emerg and put on antibiotics.  This virus persisted for weeks but finally was helped with asthma medication that I didn’t know I needed. (awe)

So while all this was happening, something sinister was happening in the background which reared it ugly head and faced us head on – Coronavirus!  I knew things were starting to shut down where I live but was unable to understand the gravity of this virus (shock) or the impact it would have on my life.  It was March 14 and my brother and family were coming down from out of town to see my Mom.  They got here at 2pm.  The nursing home shut up tighter than a drum at 12 noon.  Suddenly the idea that I could not see my Mom and I did not know how long this could go on put me into severe shock.  I cried and cried,  I was depressed,  I was lost.  Seeing Mom was a big part of my daily life.  Suddenly there was a big hole and something even more dire was the loss of control in my life.  Being autistic, control is a big thing.  We like to be able to know we can control large parts of our life and suddenly a large part of my life was out of my control. ( severe shock)  I couldn’t check on Mom,  I couldn’t make sure she had everything she needed,  I couldn’t bring her the cookies she loved,  I was completely separated from Mom.  All we had was the phone to still talk to each other but even that is fragile when Mom can’t hear well.  Today is April 26.  I have not seen my mom in weeks and weeks.  She even had to celebrate her 92nd birthday by herself.

Later that week that the nursing home shut down,  I found out the results of the biopsy and I did have cancer – cancer of the  uterus (ultimate shock).  The only good thing was that we had caught it early and it had not spread outside of the uterus from what they could tell. (ultimate awe) I was overjoyed that the cancer was contained and that it could be treated with surgery.  I was scheduled for surgery later that week.  The day before my surgery I got a call from the hospital.  They regretted to tell me that all elective surgeries had been cancelled due to Covid 19 and I would have to wait goodness how long to be rescheduled. ( extreme shock)  I was terrified.  I had this cancer in me that could be spreading as we spoke and I could do nothing about it.  How long would I have to wait.  Was it going to be too late.  Would I become terminal?  I was a mess but God was still providing me with that wall of glass with all my terror on the other side so I could just rest in Him and trust him to provide what I needed.

I had many people praying for me (wonderful awe) and I felt wrapped in love from my church family and friends.  During this time of waiting for surgery I also had to get used to self-isolating in my home and social distancing.  I was not working at the library anymore as it was closed too.  All the stores were  closed except for grocery stores and  pharmacies.  I have no family at home with me except my two cats.  It was strange to not go out with a friend to Tim Horton’s or go out to my friend’s farm.  Being in the house all day was not the best thing for a person who thrives on routine and consistency.  I was lost at times and struggled to structure my life. (shock)  One thing that brought much joy to my life was being with my two cats all the time.  ( great awe)  And they loved it as much as I did.

So this is where I leave this blog tonight.  I am waiting desperately for my cancer surgery and I am struggling with being totally separated from my beloved Mom and struggling to manage living in this new world of Covid 19.  Tomorrow night I will do PART 2 of Shock and Awe continuing the story of my last two months of being on a crazy roller coaster ride.  Stay tuned.

Drown in Defeat or Rise in Victory

I’m not sure where the last month has gone.  It has been a blur of doctors, nurses, tests, sitting for hours at Mom’s bedside, nightmares and deep deep weariness.

It all started with Mom’s voice going hoarse.  We kidded that she had a frog in her throat that just didn’t want to leave.  And leave it didn’t.  It only got worse.  Mom became very sick with some sort of insidious bug and for over 10 days I did not know if she would pull through.  Every day I sat in her room for hours, drinking loads of tea, listening to my music, playing games on my ipad all the while keeping vigil as she mostly slept and tossed and turned, often struggling to breathe.   Every once in a while she would wake up and look at me with a look that is forever etched in my heart.  Her eyes bore through me as she silently pleaded, ” Please make this go away”  I sat helpless not knowing what to do.  At times I would sit on the bed with her and hold her and stroke her head. At her brighter moments I tried kidding with her telling her that she was Darth Vader’s mother as she had a real gravelly voice.   Gradually as the days went by, she got better and better until she was basically back to her “normal” self.  I finally relaxed feeling very grateful that the worst was over.  Then only a few days later I got a dreaded call from the nursing home.  The doctor wanted to talk to me.  He said she had come down with what they thought was a urinary tract infection.  Again the long vigils started although this time with the help of an early antibiotic she quickly recovered.  Again I relaxed although with some reserve.  I just wasn’t too sure.  Every day Mom and I would phone each other and I would keep tabs on her when I was not down at her place.  One morning shortly after the second health scare, I could not get through on her phone.  All day I tried  ( it was my day off from going down to see her).  I finally phoned the nurse to check on her.  The nurse reported that her phone was dead.  This might seem like a minor inconvenience but Mom was using an old Doro senior’s phone put out by Roger’s which was no longer being made.  Mom could not manage to dial a number.  On her phone all she had to do was press the A button and she got me at home.  If she pressed the B button she got my cell.  It was working well until now.  I went on Kijiji and found a second hand phone just like hers for sale in the city where my brother lives.  A week later and he is still trying to make arrangements with the seller to pick it up.  Needless to say I am very annoyed.  And to make matters worse,  Mom and I both did not realize how much we had come to rely on the phone to keep connected.  I felt totally lost with not being able to pick up my phone and talk to her when I wanted and I could tell she was feeling it too.  It scared both of us.

So add in some health issues of my own, a couple of other irritating incidents and you end up with a very stressful month.

They say it is all in how we react to things that matters and will determine our frame of mind.  Well, I must say that I must be reacting very badly to all this because my frame of mind is shot right out the window.  What I realized was that these were all things I had no control over.  And I like to have control.  Control equals safety and comfort coming from an autistic person.  Having little control makes the ground like quicksand under my feet.  No sure footing, no semblance of order or consistency makes me a sad puppy and a very anxious one.  So anxious that to try to deal with the added stress I attempted to alleviate the stress by simplifying my life.  That meant visiting Mom and trying to continue working.  That’s it.  No being with friends, no going to church, no shopping,  no facebooking, I basically have dropped everyone from my life.  I know people will do this but I think with me it has to do with the extreme exhaustion of being with people that my autism can cause.  By eliminating people I hoped to eliminate the weariness and stress that was overtaking my life.  My cats were my constant companions.  And I must say they are very good kitties. I do not advise anyone who is a caregiver to do this.  We as caregivers, more than anyone else need a network of friends, family and community people to gather round us to support us.  Unfortunately, being autistic does not always make this the best thing for us at certain times.

The other thing I realized was when Mom’s phone went dead I was left to experience a little of what it might be like when mom died.  I could not reach her.  I could not hear her voice.  I could not tell her the silly things that my cat Gus Gus was doing.  I could not tell her about what I did at work or what I was doing around the house.  It has scared me to no end.  And it is not over yet.  We still do not have a phone set up for her.  I sit at home feeling somehow the cord that binds us has been severed.  I know this is only a temporary sever.  It will be reattached but when Mom passes away that cord will be permanently cut and I will be left all alone.

So what do I do?  Do I drown in my despair or do I somehow find a new way to go on.  This is the year of 2020 vision.  A perfect reason to look at things with new eyes.  And a new heart.  In the bible in Ephesians it says,”I pray also that the eyes of your heart may be enlightened in order that you may know the HOPE to which he has called you, the riches of his glorious inheritance in the saints and his incomparably great power for us who believe.”(Eph. 1:18-19)  I am sick and tired of being sick and tired.  I don’t want to be afraid all the time,  I don’t want to dread the day when I wake up for fear of what might happen in it.  I don’t want the intense anxiety sit like a large stone in the pit of my stomach every day.  I don’t want to feel like crying all the time.  I don’t want to fear the future.  I want that hope and the riches God has for me and to live in His power instead of my own feeble power. I want to be enlightened to a new way of being through this journey.

My life does not end when Mom’s does.  And although she is in the sunset time of her life my life will go on and  a new dawn, a new sunrise will proclaim it’s birth in my life.  I have a chance for a new vision.  God says in Isaiah 43:19 See, I am doing a new thing!  Now it springs up; do you not perceive it?  I am making a way in the wilderness and streams in the wasteland.”  Sure, there are going to be very dark days ahead but I will  follow Jesus into the darkness and he is the Light that will guide my way through to the other side.

Let’s face it.  Caregiving is not for the faint of heart.  It has the ability to take you out and knock you flat.  It has the words of “victim” ready to deliver when you are down and out and feeling sorry for yourself.  I don’t want to end this journey with Mom as a victim.  I want to end our journey whenever that happens as a victor.  That we have run the race and  finished the good fight.  I’m not sure what a caregiver as  a victor looks like yet and i am not sure how to get there.  But I am willing to give it a try.  Anything to escape the life I am living now.  I am looking and praying for a new vision in this 2020 year.  I may need a new pair of glasses but I will get bright red ones with sparkles on them.

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.

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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.