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!


Daughter or Mother – who am I?

My heart trembles as I think of writing this blog.  The tears are close to the surface.  But it must be done as it is part of our journey – my mother and I.

For years now, my mother has been my confidante, my go to person when I was struggling emotionally, when the tears would come,  when I needed confidence and encouragement.  I called her every day, sometimes several times a day, I used to pack up my cats and my essentials and go home every weekend even though I lived not more than  20 minutes away.  My Mom was my life line even though I didn’t always understand her or agree with her.  I was attached to her like glue – Gorilla glue! I couldn’t imagine my life without her and without her support.

Fast forward to the present and a new reality has set in.  The roles are slowing reversing.  This is not a new phenomena with our elderly parents but it is a solemn one, one that breaks my heart but also creates in my a very tender, protective heart.  My mom is becoming my child and I am becoming her Mom.  I am reminded of Robert Munsch’s book “Love You Forever”  where the son holds his aging mother in his arms and rocks her.  I don’t physically do this but I do it emotionally now.  At least that is what I should be doing.

I am struggling with this new role reversal.  I still want Mom to be my support, the one who will listen to all my woes.  The other night at the nursing home,  I started to cry as I told her about my worries over financial stresses.  I wanted her to make everything right – kiss and make all better.  But instead, I caused her undue stress which showed up as her having trouble with shortness of breath.  The stress I put on her she can no longer handle.  She worries to the point of physical distress because I am all she has.  If something happens to me, she is alone in the world or at least that is the way she sees it.

The days are gone now, when Mom can be there for me whatever the problem.  I can’t crawl up on her lap and snuggle in her embrace and get a kiss on the cheek.  Yes, I am still the daughter in principle but I have become much more.  I must now be the support to my Mom that she was to me for all those years.  I realize that I can no longer go to her with my every woe and fear.  They are now too much for her to handle and cause fear in her and physical stress.  I must reign back my desire to confide in her whatever is on my mind.  I must now filter what I reveal.  I must now refrain from negative emotions and instead encourage her and comfort her.  I need to reassure her that I am OK and that since I am OK she will be OK.

Tonight when I went to visit her, I reassured her that I was OK and she was not to worry about me.  God was going to make sure everything was looked after just like he had done my whole life.  Mom looked at me and asked, ” Can I worry just a little over you?”  I replied, ” Just a little and the rest you turn into prayer for me.”  She said, ” OK, I can do that.”.

I feel like somehow I am hiding a part of me from her.  I am not being honest with her about how I am but I realize that sometimes we must choose what we reveal to others in order to be the best for them.  A mother does not reveal all her worries to her kids or else her kids would be a mess.  She practices restraint and a common sense.  I must now do the same.  Oh, but it feels so awkward and unnatural for me.  This is not what I wanted to happen.  I just want my Mom to be my mom.  The mom I have gone to for so long.  Grief has many faces.  Loss has many facets.  I have lost a huge part of my Mom yet she is still here with me.  Sometimes I am with her and I still want to cry on her shoulder and be her little girl.  But now I must be the big girl, the one who has morphed into a mother yet no child was born.  I have no natural children,  no experience of being a natural mother.  Being a mom to two furry cats doesn’t count apparently!  But suddenly I am a mom to the one I call Mom.  To the one who bore me.  To the one who raised me.

My job now is to support, comfort, encourage, advocate, build up, and mother my mom.  So am I a daughter or a mom?  I am still pondering this strange phenomena in our journey together.

What Do I Do Now???

In my last few blogs  I have been recounting the events that have happened to Mom and I as we prepared to put her into a nursing home.  It has been a very difficult time emotionally for both Mom and I but I was not prepared for a trial of sorts that happened to me parallel to all of what was going on in our lives together.

I went right from retiring from working in the school system for 33 years to looking after Mom in my home.  This was basically a full time job although I did manage to work some shifts at the public library as extra income.  I never really knew what it was like to fully retire.  I took very little time for myself except to watch the news on TV in a zombie state when I was too tired to do anything else.  I read some but the stress got in the way of being able to read much except flipping through a magazine.  I went out with friends, usually to Timmy’s for a tea for an hour usually while Mom was sleeping.  My love of crafting and working on my greeting card business fell by the wayside.  Keeping everything in order in the house and looking after the many needs of Mom took up most of my time.

So….. when Mom went into care I was for the first time faced with the gnawing questions, ” What do I do now?”  “How do I spend this extra time I have on my hands?”  “Where do I want to put my energies?”  “What do a really want to do with the rest of my life?”

And the big problem was that I couldn’t answer them.  I had no idea.  I had the strange feeling that I was totally floating through life, entirely disconnected from everything.  I have felt this in bits and pieces throughout my life but NEVER to this degree.  It was a horrible feeling that left me terribly anxious and fearing for my future.  Mom had been in my every waking moment 24/7.  All my routines were centred around her.  Suddenly these routines were gone.  I did not have to make her breakfast.  I did not have to get her pills ready or give her insulin, or get her ready for bed.  Suddenly I had nothing to do that made sense to me.  My whole life was totally out of kilter, so much so that I was totally lost and floating in a netherland.  For someone with autism,  this was a crisis of monumental proportions.  I started questioning my worth on this earth and what my purpose was – questions too big to attend to while going through a crisis.  I was still dealing with Mom’s situation everyday and struggling to bring stability to her life while my own was spiraling out of control.

I have heard since that other caregivers go through similar scenarios when their loved one whom they have cared for a long time goes into long term care.  So I was not alone in this struggle.  It was comforting to know that others went through somewhat similar trials.  I knew that the important thing was to forget about the existential questions of what I was going to do with the rest of my life and what am I here for and focus instead on developing some regular routines for myself.  Routines that would ground me and surround me with familiarity and comfort.  I started saying to myself even when I took my pills, or brushed my teeth that these were MY routines, MY life now.  I even started developing a couple of brand new routines that I could call my very own.  I would make my first cup of tea in the morning and get back into bed and read my bible for a few minutes.  Never mind that I often fell asleep!!  It wasn’t that the bible was boring – far from it.  It was that for a few minutes I was allowing myself to relax, and let my anxieties rest in the words of my heavenly Father.

I then started to try a few new things like going out to my friend’s farm and visiting with them and all the animals.  I took my camera and lost myself in the joy of taking pictures.  I started to fix up Mom’s two rooms she had in my home.  The decorating bug had hit me and I started having fun planning what I was going to do and doing some of it.  In the middle of this though, was having to pack up all mom’s stuff and storing it.  It was a hard exercise but a necessary one.  I even took a knitting course on knitting mittens.  This has been something that has been on my bucket list for many years.  Slowly, slowly, I feel myself gaining inner strength again.  I feel I have enough routine in my life that I am not floating aimlessly through space.  I’m still working on this.  It’s a whole new world out there to choose what I want in my life and what I can do without.  And of course I still have Mom to care for even though she is not at my home now.  I still go visit her pretty near every day which works out to about a round trip of 4 hours out of my day.  Then I still have her banking, her mail, her appointments etc etc.  It is still a full time job but I can relax a bit knowing she is in a place getting good care. It’s taken 5 months to get this far.  This is an evolving process that does not move quickly.  The speed of a snail is how I look at it.  But I’ll get to somewhere eventually.  The somewhere for me.

And what about those existential questions?  What AM I going to do with the rest of my life?  Well, God promises he has good plans for me and if I ask him he will direct my steps.  I don’t know where the next few years will take me.  It is definitely an adventure I am on.  Adventures have ups and downs, twists and turns and things known and unknown.  We’ll see.  I’ve always wondered about skydiving!  Then I’d really be floating in midair!  But only briefly before I had my feet planted both firmly on the ground again.  Things are percolating in my brain,  creative things, doing my speaking for autism or mental health again, volunteering, and most of all writing a book which I desperately want to do.  So yes, we’ll see.


The Day Everything Changed – Part 4

What have I done?  That is the question that haunts me daily now.  Mom is at the General Hospital in a quiet part of the Emergency Dept.  After 2 days there we are no further to any answer to the question of what to do with Mom than before.  The doctor says there is no way Mom will be admitted but offers very little help except to say she has to go home to which I retort that that solution is not possible.  We banter back and forth our voices raising.  Mom watches from her bed, eyes wide but not really understanding what all is going on.  My brother has his say but to no avail.  We are at a standstill.  Enter stage left an angel.  No visible wings but a twinkle in her eye.  She is a social worker she says.  And she is here to help.  She suggests putting Mom in a retirement home respite room while we wait for an emergency bed in a nursing home.  It will cost she says but my brother quickly speaks up and says he will pay.  We agree to try this and this lovely lady (aka angel) bustles to the phone to find us a miracle bed.  And a miracle we get.  The only bed in our whole city is ours to have that day!  God is in our midst, despite the lack of hope we have felt.  God is our hope, our answer when there is no answer.  One small thing.  Mom will have to have an assessment done by the retirement home to make sure she qualifies.  It is scheduled for the next day.  I pray, I get my church to pray and my friends to pray.  At this point she can hardly stand up on her own, she is so weak and often not too lucid.  We shall see.  The next day, Mom is still very weak, kinda out of it and I feel my heart flutter as I wonder how she will do and what the options are if she is not accepted.  The lady comes,  big smile on her face, joking and very pleasant.  She starts asking Mom questions and as we listen with trembling hearts, Mom rises to the challenge and does remarkably well.  I am blown away.  She jokes with the lady and remembers stuff I do not remember.  Mom then stands on her own, not buckling at the knees.  She transfers from the bed to the chair with little problem.  I can only say that another one of God’s angels helped her a little, no, a lot.  God again, showed up in a miraculous way!  The lady,  tidied up her papers, stood up and said we had the bed!  I was ecstatic!  Mom, exhausted, fell back to sleep.  We ordered the transfer ambulance, and I went home to gather up her stuff.  My friend helped me take a load out to the home as my brother was heading back to his home out of town.  It was a lovely room, with a huge TV, a big window and her own bathroom.  And it was right across from the nurse’s station which assured me somewhat.   When Mom and me arrived later that day in the transfer ambulance, I busied myself putting her things away while she napped and got used to the room.  When I left that night, she said, ” I think we hit the jackpot”.  I thought we had too although that same question kept rearing it’s ugly head.  “What had I done?”

Mom was in that room 3 weeks.  During that time,  I filled out all the papers to get her on an emergency list.  I believe Mom helped herself get a permanent bed quickly by falling and hurting her hips and getting a goose egg on her head.  She had to use the bathroom and pulled her bell and when noone came fast enough for her, she took it upon herself to take herself to the bathroom – a big no no.  It just confirmed to everyone how much she needed a nursing home bed and soon.

Despite being happy to have the room, this was no easy transition for either of us.  Mom struggled to understand why she could not go home.  Almost every  night when I left her, she begged me to either stay with her or to take her home.  My heart was broken and I felt sick most of the time.  Mom had a lot of her “bad days” where she was almost bedridden and sleeping all the time.  The staff, who still did not know her well, prodded her to get up and get dressed for meals etc. – something Mom was not capable of doing when in this state.  I had to do a lot of advocating for her and explaining what she was and was not capable of.  She was in a retirement home where most of the people were mobile and active.  This was not a permanent solution for mom and both we and the staff knew it.  She had extra PSW support as well as extra nursing care.  It took it’s toll on everyone.  Mom and I had to also get used to doing things the institution’s way and not our way.  When Mom fell, they could not give her a Tylenol because she did not have doctor’s order for Tylenol.  What???  She can’t even have a Tylenol??  The nursing staff finally agreed I could give her a Tylenol but they would just look the other way.  I stayed to way into the night that night to make sure Mom was comfortable – giving her a Tylenol every few hours.  You can bet I got hold of the Doctor the next day to get her to put in an order for Tylenol.  Simple things like this were overwhelming to me.  Protocol, everywhere.  I was used to looking after Mom, knowing her body as well as my own.  I knew what she needed before she even asked.  This was a whole other world I had to get used to.  They gave her Senecot because she was on a drug that could severely bind her up.  At home we had no problem with just having Mom eat a few prunes each day.  I told that to the nurses but they continued to give her the drug and then wondered why she was having severe diarrhea!  I was doing  a large load of laundry every day for her as she was having numerous daily accidents.  I again had to advocate for Mom and explain that the senecot was far too strong but the nurses would not stop it because they did not have a doctor’s order to stop it???!!!  So we had to get a doctor’s order for that too.  Protocol.

Mom liked the big TV but had no idea how to use the remote which was different than the one she had at home.  I tried taping all the buttons she didn’t have to use but still she could not manage it.  She had trouble with her meals. She could not cut her meat,  or other food items and often gave up trying to eat her meals.  It was a constant job to keep informing the staff of what she was capable of and what she would need help with.  I guess this would happen anywhere but this was all new to Mom and I.  I struggled with trying to keep things as smooth as possible for mom, coming out every day to see her for several hours.  It was a long bus ride for me to get to her place but I could not leave her for long.  The guilt of what I had done weighed heavily on me each and every day.  I saw her struggle to get used to her new surroundings and hear her as she lamented about not being at home.  My body ached emotionally and physically for her as I watched this unfold.  I cried often, I was weary.  What had I done???????????????

The Day Everything Changed – Part 3

It’s been several months but I want to continue the story I started in Parts 1 and 2 of “The Day Everything Changed”.

If Mom and I had thought things had changed before this day- what happened today erased all thoughts of anything being the same again in our lives.  Early in the morning my doctor came over to the house for my appointment since I could not leave Mom.  Her and my very best friend had talked and they were so concerned about the state of things with Mom and me that she insisted that today we should take Mom to the hospital.

If you know anything about me and my past with my autism, when I am faced with something I cannot handle I run.  And run I did, right out the front door in my pyjamas and bare feet on a very cold November day.  I ran and ran, letting the cold air fill my lungs till they felt like they were going to burst.  I did not feel the cold over the rest of me.  I was so emotionally numb – a coping mechanism to help me deal with the terror of sending Mom to the hospital and all that would do for our future.  I don’t know how long I ran for – perhaps 15 min or so.  I ended up coming to a children’s park.  There was a swing set and I sat down on the empty swing and slowly began to pump my legs.  I started going higher and higher, faster and faster till I was almost horizontal with the top pole.  Minutes passed but it seemed like hours and I lost all sense of time.  I was suspended in time on that swing.  The rhythm back and forth, back and forth formed a mantra in my head and shut out everything I did not want to face.  I was in a no man’s land.  No past, no future.  Just back and forth and back and forth and back and forth.  Soon though reality reared it’s ugly face in front of me and I thought of Mom back home.  I had to get home but I had dissociated a bit and was unsure of how to get back home.  I then noticed a lady walking her dog.  She looked harmless enough.  I went up to her and asked her if she would help me get home.  I remember thinking that she was going to think I was a crazy lady.  I tried to tell her I was autistic and I ran because i was going to have to put my beloved mother in the hospital today. I couldn’t face it so I ran.  After asking me some questions, she stopped a mailman who then called the police.  It was not long until a  police car pulled up.  I was so embarassed and just wanted to turn back time so that this had never happened.  It seemed I was always doing things to make things worse.  The woman police officer asked me if I was cold to which I replied that I was not.  She was very surprised and turned on the heat full blast in the car.  By then I was more lucid and could tell her where I lived and she drove me home.  When I arrived home my good friend was there and was so relieved to see me. They had people out looking for me.  Mom meanwhile had no idea what was going on.  My doctor was gone to her next patient but she had phoned my brother in Ottawa and told him to get himself down here pronto.  The police officer would not leave until she had confirmation that I would not be left alone for the next few days ( otherwise I was going to be admitted to the hospital  on a form)  A phone call from my doctor, my friend’s assurance and the assurance my brother was on his way finally convinced her to let me stay at home and she left.  My friend got me a cup of tea and as I slowly sipped on the comforting hot liquid, I had to face the facts that the nurse was on her way to get Mom ready to go to the hospital.  I went upstairs and in tears told Mom I could no longer look after her at home and that she would be going to the hospital. I was so sorry to do this to her, so utterly sorry.  Mom slumped in her chair and turned pale but she seemed to understand that I had to do what I had to do.  She seemed to sense this was not a time when she had a choice in the matter.  Soon the ambulance came and I went into robotic mode as I tried to gather what she would need at the hospital.  I don”t remember too much after that.  I don’t remember if I rode in the ambulance or with my friend.  I know they took Mom right into the Emerg department but I couldn’t go at first.  The waiting to  be with Mom seemed endless.  I didn’t want mom to be alone at this time.  Finally I got to be with her.  And my brother arrived.  I remember it all felt like a bad dream, the worst nightmare ever.  I just wanted to wake up with Mom and me back home.  Something told me there was no going back.  Mom would not be coming home again.  I shut my eyes tight trying to block out the picture of her lying on the hospital bed with doctors and nurses bustling about and I cried and cried.  What had I done??

In the Middle of the Storm

Tonight as I sit here typing, a winter storm is raging outside my door.  Schools were closed and the library where I worked closed early.  I came home, got into my jammies and slid beneath the cozy covers of my bed only to face another storm, the storm of my life.

I have not written a new post since November 21, 2018.  I have tried day after day to write all that was happening but I could not find the strength to put my words down.  It’s like if I didn’t say anything maybe it wasn’t true.  I could avoid reality.

Well, the reality is that now my precious Mom is in a nursing home.  My worst nightmare had come true.  I was so sure she would stay with me till she passed on to Heaven.  I was going to look after her in my home, protect her and comfort her and give her the best last days anyone could have.  Until I fell apart from the stress and trying to manage her deteriorating condition.

Mom moved into the nursing home Nov. 13, 2018.  Tomorrow marks 3 months in the home.  It has been 3 months of one of the worst storms of my life.  Granted,  she is getting excellent care, the staff are stellar, Mom is doing not too badly and in reality I could relax with knowing she is in a safe place with good care.

Unfortunately, my autism has gotten in the way of seeing all this in a positive light.  To start off, I had a terrible time with rules.  What I mean is that staff didn’t always follow the rules as I saw them.  What was in her care plan didn’t always happen and different staff were not aware of her care plan details which drove me crazy.  I figured if it was in her care plan, it should be followed by every staff to the tee.  Reality in a large facility with many different residents, and many different staff  is that things get missed, forgotten, and I became angry, paranoid and suspicious of all staff.  This attitude unfortunately was picked up by my Mom who began to hate the place and have her own anger.  Thank goodness, I was able to realize how toxic I had become not only to myself but to my Mom.  I gritted my teeth and decided that I would not say another bad word about staff or the  place.  Nothing but positive comments to Mom about her care and slowly she came around to appreciate her being in this place.  I still have trouble like yesterday when they lost her roho pillow costing over 300.00 but I am trying to be positive and supportive to Mom and staff.

All this comes down to control.   I have lost control.  WHen mom was at home with me, I could control all aspects of her care.  Even though I was stressed, I had control.  And control is central to someone with autism.  We thrive on being able to control our lives.  Now with Mom in a nursing home, I have suddenly lost a significant amount of control of what happens with Mom.  Mom is dealing with this too.  She can no longer take a tylenol when she wants to unless she rings for the nurse.  She can’t go the the bathroom unless she rings for someone to help her.  This loss of her independence has been a major issue in her getting used to living in a nursing home.  She feels powerless and insignificant.

To try to help control as much as I possibly can,  I go pretty near every day to see Mom.  I travel on the bus and walk a short few blocks to get to her place.  By going every day I can keep an eye on things and hopefully solve any problem that comes up.  Mom loves me to come.  I am who she has left in the world.  My presence soothes her and helps her know she is still looked after.  Unfortunately, the storm in my life has gotten more severe.  Going every day has exhausted me to the point that I have been sick since Christmas with various symptoms that come and go leaving me feeling washed out, depressed and feeling hopeless.  I am suspecting that I have autoimmune disease.  My joints are inflammed and I am in constant pain.  I am reacting to environmental susbstances that never bothered me before and I have started to react to corn and soy in my diet as well as coconut products and sugar.  My body is screaming out in protest to all the stress it is under.  The storm swirls around me leaving me debilitated and fighting to wade through the effects.  I am scared.  I am very scared.  What if I get so bad I can’t work?  How will I support myself?

I have been told to cut back on the amount of time I see Mom.  This terrifies me.  If I don’t go see her and give her a kiss and a hug and tell her I love her I am terrified she will die that night and I will regret for the rest of my life not going that evening.  So I continue to go almost every day and I can hardly keep awake when I am there.  I bring tea, soothing tea to sip on as we talk or watch TV.  I forget that I have not had supper and it will be too late to eat properly when I get home. I often forget to eat breakfast and lunch as well as I am trying to get so many things done around the house.  I still have all Mom ‘s belongings that have to be packed up and stored.  I will not get rid of them till she passes.  I promised her that.    I’m trying to desperately incorporate new routines into my life  after losing all my routines that focused on Mom when she was at home with me.  It’s like trying to crawl out of a black hole.  What new routines do I want in my life as I am now by myself?  What are my priorities ( besides Mom who is still my number 1 priority).  The storm swirls around me as I try to find my way through the blinding snow into a new world.  I am lost, shivering, and overwhelmed with the ferociousness of the storm.  It’s sucking the life out of me.  Literally.  I am sick, and I don’t know how to find my way out of this.  And the storm is not going to let up anytime soon.  In fact it may get worse.   I have always been a survivor but at what cost?  I want release from the storm.  I want it to stop.  I want calmness, and peace.  I want to sun to come out again.  I want to see the sparkle of the snow in the sun and know the worst is over.  But the grey skies continue.  There is no sun.  I am stuck in the middle of the storm.  I don’t know how to find my way out.  I just keep plodding through the deep snow getting more and more exhausted and more and more and more sick.  Where will it end?

The Day Everything Changed Part 2

This blog covers the next 18 days after the momentous day in Part 1.  It was a time of great distress, uncertainty, and many ups and downs.  To me it was a living nightmare.  All Mom’s routines had changed which made my life and hers very unpredictable.  Nothing was the same as it had been and it was as if we were in a swirling void of chaos and sadness.  Mom was definitely declining severely during this time and I was constantly reeling from the thoughts that any day might be her last.

After the oxygen and pump were hooked up Mom basically lived in her chair in her bedroom.  She slept more and more of the day, her head buried in her pillows.  I spent most of my time lying on the bed in her room drinking endless cups of decaffienated tea and watching her intently as she slept or talking with her if she was awake.  She wanted to know if everything was in place for her funeral and was frantic that I look into her insurance to make sure I knew what to do.  We talked about funeral plans and how she felt about leaving this world.  She would tell me she felt alone, very alone and she could not feel God’s presence.  I took my black letters I used for decorating in my church library and taped the verse ” I will never leave you nor forsake you” on her cupboard door where she could always see it.  Secretly, I read it over and over too, as I felt very alone in these bleak days.

There were some bright spots in the sadness.  Late in the afternoon, Mom was usually awake and restless.  I began telling her family stories.  I would start off with,  ” Once upon a time there was a family….”  I retold often funny family stories I had experienced since my youth.  Like the time Mom left the lemon out of the lemon pie, or the time my young brother left the lid off his jar of tent catepillars when we left for the weekend.  They were everywhere when we got back even down the sleeves of clothes hanging in the closets.  I told her about the time we were in the CN tower having lunch in the revolving restaurant and Mom put her purse down on the window ledge and it waved goodbye as we kept revolving around.  Ian and I frantically started running around the restaurant trying to get back her purse.  It had a happy ending but was just one of those family stories that gets told at family gatherings.  Part of our heritage as a family.  That was a day I will never forget.  Mom and I had a very special time together remembering stories.

On the medical side of things,  Mom began not eating at all except an occasional glucerna, a meal replacement drink.  She became weaker and weaker and could no longer get down the hall to go to the bathroom.  I brought in the new commode from the garage I had bought and saved for such a time as this.  Sitting right next to her chair it was still an effort for Mom to shuffle two steps over to use the commode.  I became everything to her, daughter, PSW, nurse, caregiver, etc etc.  I never thought I would end up toileting my Mom but she would not allow anyone to do it.  That meant I was home 24/7 basically.  I could not leave her in case she had to use the bathroom.  There were also times when she continued to be very confused.  She became frantic even if I just went downstairs because she would forget where I was and panic.  I took to writing on a white board where I was in the house and when I would be back so she would stay calm.  It meant that many nights I did not have supper because I just could not leave her that long to get something ready.  Tea became my staple food – not the best solution for an already exhausted, worn out caregiver.

Then came the period of days when for some reason she had severe diarrhea.  It would run down her legs onto the carpet, her blankets, her clothing.  I spent one night doing laundry all night.  Mom was so embarassed and I was so tired.  We were two tortured souls bound together by sickness and decline.  Nights were spent watching her intently in the dark as she still struggled with her breathing.  Whether it was sleep apnea or more mini strokes, she would often stop breathing for 20 seconds or more.  This terrified me to no end.  I would wait anxiously to see if she would start breathing again, worried each time that this was her last breath.  Often I did not fall asleep till somewhere around 2 in the morning.

Nurses were coming every day to see her and check her pump.  Our mandate was to keep Mom as comfortable as possible.  That was it.  Was this the end??  I spent each day suspended in time wondering when that dreaded moment would come and it would be all over.  Funny thing though,  not many tears were shed during these days.  I think I was in my robotic caregiver state.  I had to keep going no matter what.  There was no time to mourn or lament.  There was laundry to do, medicine to administer and I was bound to Mom as if she were an extension of me.

It was a quiet time with just the two of us mostly when the  nurses or PSWs weren’t there.  I was not able to work or go out,  All life beyond our immediate situation was suspended.  I spent a lot of time crying out to God.  I did not understand why he did not take her to relieve her suffering but I knew he was with us through it all and that he was sovereign and loving.  Although I questioned God I did not expect an answer.  I just trusted he had it all looked after.  I just had to keep doing my part in this saga.  The 2 cats were also upset.  They would often howl and Oreo would go into hiding.  Other times they would keep watch over Mom like brave little watchmen.  Gus Gus would often curl up on the bed with me as I lay drinking my tea and watching Mom sleep.

Sometimes Mom would want to watch one of her shows but she could no longer get into her sitting room where her TV was.  I would bring up the laptop and with an extra speaker she could watch a show once in a while.  But soon this became too much for her.

Gradually, Mom got weaker and weaker.  Her legs would sometimes buckle as I got her to shuffle the two steps over to the commode.  My back took a beating but I did not know of any other solutions.  My friends and doctor were adamant this could not go on.  I would not survive the emotional and physical toll it was taking on me.  I refused to accept other solutions especially going to the hospital.  It was out of the question.  I would continue to care for her as I had been doing.  Mom and I were in this together for the long haul.  However long it took.  I would not desert her.  My friends and doctor looked on with concern and worry.  Finally the palliative care nurse ordered her to be bedridden and a catheter put in.  I fussed about this but realized that it was the only option we had if she continued to be at home.  It was planned for the next day.  What happened that next day would change the course of our journey drastically.  Things would never be the same again.  Read about that day in my next blog coming soon.