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.

The Day Everything Changed Part 1

I must apologize to all my readers.  I have not had the energy to blog this past month and a half as life has turned upside down.  The next several blogs will be an account of this harrowing time and how only now are Mom and I beginning to emerge on the other side.

Sept. 27, 2018 started off like any other Thursday at our house.  The PSW came to give Mom her shower and all seemed fine except she seemed a little more winded.   She turned on the TV to watch one of her favourite shows and I went downstairs to get her breakfast.  When I came upstairs she said she wasn’t feeling well and she was short of breath.  I wasn’t really alarmed.  This often happened lately.  It was only as her shortness of breath got increasingly worse and the medication wasn’t doing what it normally did in stopping the distress that I started to worry.  She decided to move into her bedroom to sit in her favourite chair and try to rest.  I helped her into her chair and stayed close by.  As the minutes passed her breathing distress increased to the point that I called the nurse and asked that someone come and check on her.  There was noone available till later in the day so I just kept real close to her and administering medication.  It was during this time that I witnessed something which raised my fear level ten fold.  She would suddenly turn very red in the face and her face would be very contorted.  She would stretch her arms and legs out straight and stare blankly.  I suspected she was having some sort of mini stoke because she was very confused afterwards and her mouth drooped downwards on one side.  She had a number of these episodes before the nurse showed up.  I knew something was very wrong when she asked for the box that we kept for emergencies – the one only the nurse or doctor could open.  The nurse started filling syringes with medication and she gave one to mom every half hour.  The nurse also witnessed one of Mom’s “mini strokes” and she said she suspected Mom was passing blood clots.  It was at this point that I knew things were very serious.  You may wonder why we did not take her to the hospital.  Mom is palliative.  She has a DNR (do not resuitate) It was her wish to be kept at home and made as comfortable as possible with as little pain as possible.  So the nurse was doing everything she could to keep Mom as comfortable as possible.   Oxygen was ordered for her which arrived soon after.  Also a special pump was ordered that would administer the pain medication continuously.  I would also be able to give extra doses as needed.  Everything was happening so fast.  I was in shock and terrified I was going to lose her at any moment.  This ordinary day suddenly turned into a very extraordinary one.  I was overwhelmed with everything as I had to learn on the spot how to work the oxygen machine and lines to her nose,  I had to learn how to work the pump which arrived that night and delivered medication into her via a needle in her stomach.  I had to know when I needed to give her an extra dose.  It was all  very overwhelming and I went into my robotic mode where I just did what I had to do with out emotion, with out thinking of all what was going on.  I was the caretaker, not the daughter.  Emotions would just get in the way and render me immobile.  Mom wanted to sleep in her chair so I slept in her bed that night right next to her..  I should rephrase that.  I did not sleep much.  I kept my eyes fixed on Mom in the dark and watched her breathing, wondering if the next breath would be her last.  It was a harrowing night.  Little did I know that this was the beginning of a harrowing month and a half.  To be continued in my next blog post…….

World Gratitude Day – what I am grateful for.

I have so many things and people I am grateful for that I could go on for days but for the purpose of this blog I want to focus on what I am grateful for as a caregiver on this World Gratitude Day (Sept.21).

  1. I am grateful first and foremost for my mother who I have taken into my home these last almost 5 years.  She is my love, my joy, my heartache, and my life.
  2. I am also grateful first and foremost for my faith in God which sustains me daily through this journey of caregiving.  I could not do this job without my beloved Jesus.
  3. I am grateful for the home God has so graciously given me to be able to give a home to my Mom away from the nursing homes.
  4. I am grateful for my few friends who hold me up and give me much love and encouragement and answers when I don’t know what to do.
  5. I am grateful for my church family who surround me with love and support through this caregiving journey.
  6. I am grateful for  the PSW who so gently looks after Mom when giving her her shower twice a week.  She is the BEST!
  7. I am so grateful for our friend Sandra who gives of herself selflessly to help me out with cleaning, doing exercises with Mom, staying overnight when I was in the hospital, and keeping an eye on me to make sure I am doing OK.  She is invaluable to Mom and I.
  8. I am so grateful for the psychiatrist I have who looks after me so well and is such a support and advisor during a very difficult time.  I couldn’t get through a week without her..
  9. I am so grateful for the wonderful people at Hospice Kingston who support me through the caregiving support group and in many other ways.  They give me hope I can get through this in one piece.
  10. I am so grateful for  my two Pastors who put up with me messaging them at all hours and asking frantically to pray.  They also support me with spiritual guidance which i desperately need at times.
  11. I am so grateful that I am connected with a nursing company and I can call them 24/7.  Sometimes it is so lonely late at night and if I am worried about Mom’s condition I can call them and they will send someone out if needed.  What wonderful support.
  12. I am also so grateful for a wonderful nurse, Candace who takes such good care of Mom and shows she reallly cares about her.  It’s not just a job.
  13. I am so grateful for the palliative care nurse I have who, as Mom continues to deteriorate daily, she give me advice, direction and such good care of Mom.
  14. I am so grateful to my family doctor who takes as much time as needed to make sure I am looked after, dealing with constant headaches, exhaustion,  and poor self-care.
  15. I am so grateful for my cats who bring joy and comfort into my life daily.  I couldn’t manage without them.
  16. I am so grateful for my library job which allows me to get out of the house and have a purpose other than as a caregiver.  And I get to be with BOOKS!
  17. I am grateful for tea.  I know that may sound weird but it is when I am sitting in my easy chair or my hammock chair sipping on a cup of tea that I can truly relax and let things go  for a few minutes.
  18. I am grateful for my Facebook friends.  Going on Facebook and seeing what my friends are up to takes my attention away from the worries and cares I constantly live with.  I, whose world is getting smaller and smaller as mom gets sicker, can live vicariously through my friends on their adventures and with their families.
  19. I am grateful for the night when I can turn off the world and just sleep.  I am so tired all the time and so much is on my mind.
  20. I am grateful for laughter.  Mom and I laugh a lot over silly things or something the cats have done.  Laughter does really lighten the load .
  21. I am grateful for my health that for the last 5 years I have been healthy enough to always be able to look after Mom.  Even though it is very hard to practice self-care I am getting better at it and look forward to continuing looking after Mom daily till she rests in peace and I no longer am needed as her caregiver.

I could probably think of many other things I am grateful for as a caregiver.  I am really truly blessed in this journey.  It has been the hardest 5 years of my life but also the absolute best 5 years of my life.

My Pack Rat Legacy

After some quite heavy posts I decided to do a lighter post of something that has been on my mind lately.  We all are left legacies from our parents.  It could be monetary, property, ideologies, ethics etc but let me tell you about one of my parent’s legacies to me.

I’m quite sure you have all heard of pack rats.  I always associated this term with someone who collected all kinds of stuff and had a houseful.    I decided to look up the origin of the term to see where it came from.  There is actually a pack RAT – the furry kind.  It’s often called the wood rat.  And yes, it does have a habit of collecting things.  It apparently has large pouches in its mouth and it will gather all kinds of things it sees as treasures including having a special liking of shiny objects.  It will also drop one object from it’s mouth if it sees something far more interesting and so is in the business of always trading things for other things.

Sounds very familiar doesn’t it. Now I understand how the term “pack rat” got attached to humans.  Many of us are indeed well-established pack rats.  This included both my parents but especially my Dad.  He was a pack rat in the truest form! (except he was not covered in fur!) He saved everything and anything.  Our house was full of files of cut out newspaper articles, books, magazines, pamphlets – including pamphlets to disney world in about 1972 that I discovered in 2011 when we sold their house.  I even am the grand owner of the official guide to the 1967 Expo in Montreal! I found the papers from the day man walked on the moon, and when world war 2 ended.  I even had every person’s registration card who ever stayed at our family’s hotel on the Gaspe – hundreds and hundreds of them.  The hotel was torn down in 1969.   Dad could never throw anything out.  He always imagined a use for it “someday”! I think he lived in fear of what I read in a definition of the word “junk” recently.  It defined junk as something you keep for years and then throw away 2 weeks before you need it!  That was Dad’s worst nightmare!  He worked as a custodian at a public school and as he swept the floors and cleaned the classrooms he would find pencils, erasers, pens, and all sorts of trinkets lost by children.  He brought these all home instead of throwing them out like he was supposed to and they found a home in his desk drawer.  It was pencil heaven.  When we cleaned out his desk my brother and I found enough pencils and erasers to supply a whole school!  Mom and Dad loved garage sales and every Saturday for years we would all pile into the car and with great anticipation hit the road running.  I must admit I am a garage sale junkie too and found many, many treasures I still have to this day.  Mom was not immune to this pack rat mentality ( although she will deny it vehemently).  When we cleaned out their house,  I must have found 60 plastic and glass vases in the downstairs cupboard.  She loved to arrange flowers and so having a collection of vases to choose from was right up her alley.  She also collected curtains and refitted every set of windows in our home on the Gaspe  with new curtains.

The crawl space in Mom and Dad’s house was a pack rat’s delight. It was chock full of old popular mechanics magazines,  old radio parts, books galore, and to top it all off it was the burial place for every appliance that kicked the bucket.  PLUS it was the resting place for every box that every appliance or other item that entered the house came in.  Dad figured you might just have to take it back someday – like maybe 10 years later???  Despite the overwhelming job of cleaning out Mom and Dad’s house ( I still have packed boxes in my garage 8 years later) my brother and I had to chuckle over our apparent legacy.  A lot of it escaped the dumpster sitting in the driveway that became full but much had to be disposed of.  An interesting thing that happened during the selling of their house, was that we had to get the wood fireplace inspected and properly documented.   The stove itself had very little markings on it to help us and we were missing a very important code that the inspector needed.  As we were panicking over how to find this and we could find nothing online, I decided that knowing my Dad, he may have just kept info on it in his files.  So I took to going through his filing cabinet  – and miracle of miracles I found a pamphlet on the stove with all the information we needed.  Now THAT’s where being a pack rat really came in handy.  Dad always believed if he saved things they would come in handy later – even 20 years later!  Although cleaning out their house was a nightmare, I do not resent my pack rat legacy.  In fact I look at it with great fondness.  As we were growing up,  if my brother or I ever needed ANYTHING for a school project or other project Dad would go looking around the house.  Sometimes he had to look for a while but he ALWAYS came up with what we needed.  That was his way of being there for us  and showing his love.

I must say that not only have I inherited much of their pack rat items, I have inherited the pack rat bug.  I am probably a worse pack rat than my parents.  I am a prolific collector.  This may be due to my autism because I am always collecting things.  I have many collections on the go at the same time and this can make it a bit challenging in the financial department.  Some of my former collections included,  a rubber boot collection, a winnie the pooh collection, a cat in the hat collection, heart collection, rock collection, stamp collection, and of course books, books, books.  Today my collections include shoes, clothes including leggings and fancy tights,  pictures of all sorts, card making supplies, japanese paper, blue and white china, pillows, sheets, fuzzy  blankets, jugs, cats, kettles (I know, I know, you can only use one at a time!) silver rings (would be handy if I were an octupus), and of course books, books, books.  My little townhouse is getting fuller and fuller!

I LOVE my collections but I am getting fed up with the clutter.  I am doing some serious thinking about what I really want to keep and what is time to give away or sell.  I recently purged 100 items from my house but you would never know it.  I think those with autism are particularily fond of things – often more than people.  I think this is true with me ( don’t get me wrong friends, l love you too!!)  I also think that as I go through this time of anticipatory grief while I look after Mom, my collecting and attachment to things has ramped up full force.  It is a distraction from the pain, and it also provides comfort however fleetingly.  My books are my most precious collection as I think it brings fond memories of both my parents who were voracious readers.  My hoarding of books is a legacy from my parents I would not give up for anything.  Each book I have speaks of their love to me.  They did not know always the best way to love me but their love shone through in their sharing of books with me.

So why all this talk on being a pack rat?  Well, I think when you have already lost one parent and am dreading losing the other sooner than later, you get to thinking about what they really meant to you.  What were the things that made them so memorable in your life?  Who are you now because of having been their children?  What do you carry on in your life that they handed down to you?  These are all questions that become front and centre when your parents are no longer around.  You wonder who you are – what qualities you have of your parents and what values of theirs you hold etc.  It’s a bit of a soul searching exercise.

In my case,  being a pack rat has certainly been taken on by me from my parents.  I’m probably worse than they were.  I guess the question we wrestle with is what of our parent’s legacy do we want to keep and what do we want to give lesser importance to.  Funny, because that is also the pack rat’s constant question concerning his things.  So maybe right now I am a pack rat wearing 2 hats – one as an official pack rat and one as a  person deciding what my parent’s legacy will be in my life.  A very interesting place to be.  More on this in my blogging as I do a bit of that soul searching.  One thing for sure though – in the next couple of days I will be searching for 100 more items to get rid of.  My cats and my Mom are safe if you happened to wonder!

Further thoughts on self-care or lack of it…

Yesterday I wrote a blog on “Do I care about self-care?”.  I want to write a bit of a postscript on that blog as I have some new revelations about what may be causing me to not look after myself as I struggle to look after my Mom.

Yes, I do have a history of mental health issues, and issues with self-harm and anxiety/depression and these may possibly play in to the reasons why I find it so hard to self-care but this morning I had an excellent talk with my doctor.  She enlightened me on a cause I had not thought of.  You see, although I have been autistic all my life I only discovered this about myself when I was 50 years old.  I am still exploring how being autistic affects different parts of my life when I thought it was just my anxiety or other issues.

My doctor sees me ( and she has been seeing me for over 20 years) as having very linear thinking, something many autistics have.  This causes me to find it very difficult to manage transitions of any kind.  When I have to switch what my mind is on to something different it can be overwhelming and distressing.

As I look after my Mom, this has become a full time job, one that encompasses my whole life.  Everything that happens in my day is somehow related to my Mom’s care.  So you see, I am so focused on looking after her that to switch back to looking after me is just too overwhelming and frustrating.  It is easier and less distressing to stay focused on her.  Thus my self-care suffers greatly.  When I get Mom’s supper,  I am too tired to think about getting something decent for myself.  I often end up eating something fast and unhealthy.  (like popsicles).  I change Mom’s bed regularily because I want her to have the feeling of nice clean sheets and pillowcases.  I haven’t changed my bed in months.  I crawl in at the end of the day and that is all I can manage.  You might ask, why don’t you wash the sheets from both beds at the same time?  Well, that is a good idea in theory but it doesn’t work so well with a mind that catagorizes things in black and white.  What I do for Mom is separate in my mind to what I do for myself.  In my mind they can’t be mixed.  So… my self-care gets severly lacking at the expense of providing the best possible care I can for my Mom.

I also understand that self-care is integral to my care for Mom because if I am not at my best I cannot be there for my Mom and I am a sole caregiver.  She relies on me.  I am all she has.

So this presents a dilemma.  How do I practice the self-care I need to be able to properly take care of my Mom without discombobulating my brain every time I try to switch back and forth between my mom’s care and mine?  Believe me, the switching back and forth is just as tiring and overwhelming as the regular caregiving is.  Being autistic does put a whole extra spin on the job of caregiving.  I understand better now why I struggle so much and feel like I cannot do this job.

Today, I got a very timely book on self-care.  I don’t know if it will have some answers for me but I hope it does.  The trick is to find ways to self-care without having to transition back and forth so much and find ways to see some grey in my black and white thinking.  I’ve got some work to do because if I do not find some solutions to this I know the job is going to get a  lot harder because I am going to burn out.  And that is the very last thing I want to happen.

My doctor gave me one clue to help and that is to focus on my well-being as a partner with Mom’s well-being.  They go hand in hand instead of being separate entities.  It definitely is worth thinking more about.  My good self-care means Mom’s good care.

I guess I want to say in closing that a caregiver with autism does really have some extra issues when it comes to doing the job of looking intimately after some one else.  There are differences that may not be readily visible but I would hope that if anyone is reading this that deals with caregivers that you keep this in mind.  And those of you reading this who are on the spectrum, be aware that there are issues you may deal with that may not be understood by yourself or by others helping you in the caregiving process.  Our brains are wonderful things but they can also make things a lot harder than they might otherwise be for someone without autism.

Do I Care About Self-Care?

Do I care about self – care?   As a caregiver for the last almost 5 years,  I would definitely say a resounding YES when it comes to looking after ourselves in the best way possible in order to do our job of looking after our loved ones in the best way possible.  If we don’t heed this advice we jeopardize our ability to do a good job because we will be exhausted, overwhelmed, frustrated, depressed and perhaps a whole host of other things.  We may get sick physically if we don’t take care of ourselves by eating right, getting enough rest, taking time out for ourselves etc etc.

I know all this.  I know how important it is.  I have been told over and over and I have read it countless times in caregiver literature how important self-care is.

SO……why don’t I heed this valuable advice for myself??

Good question.  I wish I knew the answer but one thing I do know is that being kind to myself is one of the hardest things for me to think about let alone do.  For me I am more likely to fight against all self-care, practice self-sabotage and outright do things to bring extra hardship on myself.

I eat sporadically, often eating the wrong kinds of food for good health.  I often forget to eat altogether.  But I make sure Mom has the best that I can give her, even making extra trips to the grocery store to get just the thing that suits her fancy that day.  THIS IS NOT SELF-CARE.

After I get Mom ready for bed and we say our good nights, I often make my way downstairs to watch TV, usually the news, and I fight going to sleep till I finally fall asleep in my easy chair and wake up in the wee hours of the morning.  I then stumble up to my bed and awake in the morning groggy and exhausted.  THIS IS NOT SELF-CARE.

I am still getting over my viral meningitis.  I am by doctor’s orders, supposed to rest as much as possible, drink lots of water and stay off TV, computer screens and reading.  So the other day I worked around the house for 7 hours straight.  I spend sometimes 2 hours at a time on the computer,  I have read 2 books in the last week.  I continue to have headaches and exhaustion – the result of my not heeding doctor’s orders.  THIS IS NOT SELF-CARE.

Whn things are especially hard in looking after Mom, I often go out wandering.  Wandering is my go to activity when I am stressed.  Probably from my autism as wandering is often a habit of those with autism.  To make things worse I wander the stores and then open my lean pocketbook to buy all sorts of things I do not need.  Then I have the added stress on top of everything else of being in financial difficulty.  THIS IS NOT SELF-CARE.

I often refuse to look after myself as to washing my hair, wearing clean clothes, and other self-care things people just do on a regular basis.  I just don’t care anymore.  I get by on the minimum so that I am still presentable in public and I don’t smell or turn people off.  I don’t have the energy to look after my self.  THIS IS NOT SELF-CARE.

I often turn down invitations to go out with friends or just don’t contact them to get together because I just don’t have the energy or the interest.  I am too caught up in making sure I get everything done I need to get done for my Mom.  She must come first.  She must be looked after as if she were the Queen of England.  All my life revolves around her and her issues.  THIS IS NOT SELF-CARE.

I often refuse to leave Mom for fear something might happen to her.  I often pass-up offers of help so I could go out and do something for myself.  I think I don’t need anything.  I just want to be with my Mom.  Sometimes I think I can do this job all by myself.  After all I know my Mom better than anyone else.  I know her every need,  I know her every routine, like and dislike.  Noone else can do it.  If someone else does come in to look after Mom, I worry all the time I am away from her.  What if they do this wrong or forget that she likes her ice  water, or her 2 pillows at her chair or her 2 cookies after her supper.  Everything has to be perfect for my Mom.  Everything does not have to be perfect for me.  THIS IS NOT SELF-CARE.

I guess you could give this an alternate title of ” Don’t do what I do”.  I am a very poor example of someone who is practicing self-care.  Why??  I’m not really sure.  It’s a question I am beginning to ask myself as I struggle along with this caregiving of my Mom.  Why must I put myself down.  Why must I sabotage myself.  My desire to make this caregiving of my Mom is so strong in me,  it is my heart’s desire to do the best for my Mom – so why make the journey so much more difficult?  I wish I had an answer but I don’t.  I just don’t.  I guess I just want people to know that self-care IS SO IMPORTANT and NOT to follow the types of things that I do because what may happen is that the job you want so desperately to do the best may just turn out to burn you to the core and you will be useless.  Totally useless.  I don’t want to go there so I am trying to see this as a real wake up call for me.  I am trying to see this as a warning like you see on bottles with poison in them.  Take heed while you are still managing.  Don’t wait till you are so exhausted and burnt out that all the good you are trying to do is destroyed by your own hands – the hands that gently care for the one you love the most.  Wrap those hands around yourself and hug yourself and say, ” YOU ARE WORTH IT”  “YOU DESERVE TO BE CARED FOR” – just as much as the one you love and are caring for.   THIS IS SELF-CARE!!