Thankful in the Centre of Everything!

Thanksgiving has come and gone but being thankful never ever should disappear for a year like a holiday does.  Being thankful is essential to getting through the tough times.  It aids good mental health.  It’s hard to be miserable when you are being thankful.  Most of us are thankful for the usual things like family, a roof over our heads,  food on our table etc etc.  I am especially thankful for all these things but I have devised a list of a portion of things that I am thankful as a caregiver of my Mom.  It might be a little unusual but these items are lifesavers.

  1.  I am thankful for grab bars.  They help Mom stay upright and out of hospital.  I like to kid that I would easily get in the Guinness World Record book for the most grab bars and railings in my house!
  2. I am thankful for lysol and febreeze sprays.  Oh, they work wonders on nasty bathroom odours!
  3. I am thankful for Spray and Wash.  It gets most of the stains out of Mom’s clothes when she misses the mouth or has an accident.
  4. I am thankful for Connie.  She is the most amazing PSW who gives Mom her much dreaded showers twice a week.
  5. I am thankful for Sandra who helps keep my house clean and gives me respite.  She does exercises with Mom and is also wonderful to talk to when I am at my witts end.
  6. I am thankful for my cats who bring Mom and I lots of home entertainment.
  7. I am thankful for Bread and Butter Bakery which right now supplies Mom with her breakfast muffins and her favourite cookies.  Next week she may be on to some other foods but right now these make her day!
  8. I am thankful for a townhouse condo neighbour who is never home.  She lives somewhere else with a boyfriend most of the time allowing Mom to crank up her TV to ear splitting decibles and I don’t get any complaints!
  9. I am thankful for the internet that allows me to look up and solve obscure problems with Microsoft Word because Mom can’t control the mouse and clicks all over the place causing the strangest things to happen. And you better believe that it’s not Mom’s fault – the computer just does crazy things all on it’s own.
  10. I am thankful for doctors who will listen to what you say and try your suggestions  for medication adjustments, etc etc.  I would be even more thankful if I got a doctor’s salary for doing all this!
  11. I am thankful for Lysol wipes that can instantly clean up any bathroom mess and you can just throw them out!
  12. I am so thankful for Hospice Kingston – for Sharon and Anne who help me through this difficult time with such knowledge, insight and a gentle, caring way.  I would be lost without them.
  13. I am thankful for Facebook and my email that keeps me in touch with the world when I am not able to leave my home for taking care of Mom.
  14. I am thankful for my haven in the basement – my easy chair, my cozy blanket and enough sound proofing that I can cry and scream when things are way too much for me and noone can hear except God.
  15. I am thankful for frozen blueberries and milk,  my go to food when I just can’t eat anything else cause I am too overwhelmed with everything and the anxiety takes away all appetite.
  16. I am thankful for my cell phone – not so I can talk to others but so I have a lifeline to my Mom should she need me or anything happens.  It goes with me everywhere.  Works best when it is charged though which is one more thing on my long list of things to remember.
  17. I am thankful for parametics who will come and pick my Mom up when she falls but is not hurt and get her back in her chair or in bed.  I just can’t do it anymore as Mom is a lot weaker and can’t help herself get up.
  18. I am thankful for my dear friends who lift me up when I am down in the dumps or am overwhelmed.  They whisk me off to Tim Horton’s for a steaming cup of tea, some good conversation and a bit of escape from my real world.
  19. I am thankful for my Pastor who always answers my frantic emails when I am at the end of my rope no matter how busy he is with the promise to pray.
  20. I am thankful  for a God who does not change.  He is the same yesterday, today and tomorrow.  Not like my life which is constantly changing and discombobulating me to no end.
  21. I am thankful for a sense of humor which can turn the darkest times into peals of laughter.
  22. I am thankful for tea.  Lots and lots of tea.  My main sustenance, my energy booster and my wonderful relaxing time.
  23. I am thankful for Lawrence Welk.  Yes, you heard me right!  Mom and I watch Lawrence Welk every Saturday night together.  It is one of our special times together as it is her favourite show.  I just like looking at the crazy hairdos and fashions!  Well, I must admit I like the music too.  Must also admit I’m glad when it’s over!
  24. I am thankful for Mom.  For this lady who frustrates me sometime to no end but who I love with a fierce love.
  25. And finally ( although there are many many more things and people I am thankful for) I am most thankful for God, the one who gives me the strength to keep going and the one who provides all that I need to do this incredibly difficult job of looking after my Mom and who lavishes His love on me as his precious child.

A Special Day

Two weeks ago today ( I know – I am not consistent in my blog writing lately), it was the day of my Mom and Dad’s anniversary.  They would have been married 65 years  this year.  I believe it was a bittersweet day for my Mom as she really wanted to celebrate it but without Dad here ( he passed away 7 years ago) it just was not the same.

This is a picture of them on their wedding day.  They look so happy as usually newlyweds look.  Although their marriage lasted their whole life and I can say it was a basically happy, contented marriage, there were tough times.  I remember in my teens I was scared silly Mom and Dad were going to split up.  I knew things were unhappy in our household but was not sure what was wrong.  It’s only been the last couple of years of going through stuff from their house that I pieced together some of what was happening.

Dad was starting a new job as a carpet cleaner.  This was a franchise business. He was responsible for setting it up, advertising and promoting the business, book-keeping, collecting payments etc etc.  If you knew my Dad, he was not an entrepreneur or salesman.  This unfortunately was the worse job Dad could have picked for himself.  What started to happen was that he turned most of these jobs except the actual cleaning over to Mom who was an unhappy and unwilling business partner.  She was not much better at these tasks and so much friction developed. Consequently, without much effort going into the business, financial issues became urgent.

Despite what people might say about those with autism not having empathy or awareness of other’s emotions, I was acutely aware to the point of being terrified.  I was not aware of details, I just knew something was wrong in our household. I tend to be very aware of the emotional atmosphere around me, although I may not understand what’s going on and any tension can really bring on strong anxiety and panic.

To make a blog story short,  I am happy to say that Dad got out of that business and got a job at the public school up the street as head custodian and he excelled at the job.  He was probably the best custodian that school had ever had.  Mom also got a new job as an admitting clerk at the nearby hospital where she also excelled.  These permanent jobs meant stability, especially financial stability in their lives and things were much better for all of us.

Mom and Dad were like two peas in a pod.  They basically spent all their time together with very few other people ever coming into our home.  They were each other’s best friend and companions.  They were truly devoted to each other and although did not outwardly express it often they loved each other dearly.  When Dad was on his deathbed,  I knew how hard it was for him to know he was leaving Mom behind.  I promised him I would look after Mom, a promise I could never break.  I have gotten myself into a real situation where Mom should really be in a nursing home but I continue to care for her at my home because as I said, I promised “I” would look after Mom – not the nursing home.  My friends try to explain to me that me looking after Mom can take many forms including her being in a nursing home but I cannot make my brain switch from what I believe I promised my Dad in his last hours.  My autistic brain is stuck and I am not sure how the future will play out.

What I have learned from watching my parents is that they made a commitment and stuck with it through thick and thin.  It wasn’t always easy or pleasant but they managed.  They provided their children, my brother and me, with a relatively stable household in which to grow up in which was very important to me. From watching my parents over all these years, I have a good understanding of what commitment means.  I am playing out that same kind of commitment as I strive to look after my Mom in a way that is honouring and best for Mom.  Commitment is hard.  You so often want to give up but it’s something very important in so many areas of our lives and in our world and it is so worthwhile.

I put on a huge party for Mom and Dad’s 50th wedding anniversary and I am so glad I did.  They had, and Mom still has, very fond memories of that special day.  It was the first time in my life that I took on a project like that where I had to organize an event and deal with many issues at the same time.  I was terrified I couldn’t do it but was pleasantly surprised that I indeed could manage a task like that.  Since that time I have had a number of other major tasks to organize ( like the cleaning out and renovating and selling of Mom and Dad’s house and the setting up a large, automated, school library with 25,000 books).  That first task of planning Mom and Dad’s 50th anniversary party gave me much confidence to tackle other things in my life and be successful at them and has also helped in convincing me I can look after Mom in her last years.

On what would have been their 65th anniversary, I wanted to do something special for Mom.  I did not know what to do until I stumbled upon an idea.  Mom loves flowers – not bought from a store so much but from a garden.  I had along the side of my house a lovely flower garden I had made in memory of Dad since he loved to garden.  In the morning I went out and picked a bouquet of flowers for Mom, put them in a nice vase and presented them to her as if they were a gift from Dad for his sweetheart.  I think she loved it.  I also had ( and this shows the pack rat in me) one of the picture boards I had assembled for their 50th wedding anniversary.  I brought it up to her sitting room and we had some good times reminiscing over the  pictures of her  wedding, her honeymoon etc etc.  She also had a good time showing them to her PSW and respite worker in the next couple of days.

Those special days are so important even after a loved one has passed away.  I think it is so important to recognize them and celebrate them.  For Mom I know it was a joy to her and I enjoyed talking to her about some of those old memories of times gone by.  I know that even after Mom passes away,  I will continue to celebrate her birthday, her anniversary etc etc.  It brings comfort to me and represents a kind of continuing on of memories and life histories.  It helps me feel stable in an unstable world, it brings an order to my life and keeps that order present as I often struggle to make it through the days, weeks, and months with all sorts of unsuspected things happening to throw a wrench into my life.  So next year, whether Mom is here or not,  I will be celebrating on July 12 – to honour two very special people in my life and the important legacy they left me.

A Poem for My Mom and Me

If You and I…

Words from a daughter to her mother.

If you and I were a book,  we would be a best-seller.

If you and I were a song, it would be at the top of the charts.

If you and I were the wind, we would travel the world together.

If you and I were a flower, we would have the sweetest scent.

If you and I were a bird,  our song would be fit for Kings and Queens.

If  you and I were the ocean, it’s depths could not hold all our love.

If you and I were a waterfall, our joy would forever cascade over the rocks.

If you and I were a letter, it would be the best love letter ever.

If you and I were cats, we would curl up together and take lots of cat naps.

If you and I were a cup of tea, it would just hit the spot.

If you and I were the rain, we would be relief from the drought.

If you and I were a house, we would be a sanctuary, safe from the world.

If you and I were a fire, we would burn bright and fierce, not destroying but bringing warmth and comfort.

If you and I were a ship,  our anchor would survive the worst of storms.

If you and I were a tree, our roots would be deep and strong.

If you and I were a clock, we would mark time together making the best of every moment.

If you and I were a chair, we would be the most comfy rocker-recliner ever.

If you and I were a painting, we would be priceless and hanging in the best art gallery in the world.

If you and I were a coat, we would always be toasty and warm even in the bitter storms that come.

If you and I were a phone, we would have the best lifelong conversation.

If you and I were a heart, we would beat in perfect rhythm together forever.

If you and I were a mirror, it would forever reflect our love.

If you and I were mother and daughter, we would be the most blessed ever…

…and we are!!

Mother’s Day Every Day

This is one of my most beloved pictures of my Mom from when I was young.  Here we are ( I am on the stool clutching the next book to read), my cousins and me listening intently to Mom read us a story.  I loved when she read to me which was something she did every day.  Today in my life I hold that love in my life by my own love of books and reading and even working in a library.  Books are one of those things I am passionate about and even collect not just to read but to hold, smell, hug and treasure.

It’s Mother’s Day today.  I am going through this day with a lot of mixed feelings.  It’s a happy day of celebrating my Mom but it is mixed with fear, anxiety when I wonder if she will be here next year to celebrate or will she only be here in my memories.  I am treasuring Mom today like she was a precious jewel.  I played hooky from church to be at home with her.  I have given her a gift, a poem and I made her a bouquet from my own garden of spring flowers and put them in my sterling silver baby cup.   I washed her sheets so she will have fresh sheets to crawl into bed tonight.  I am getting her one of her favourite meals from a nearby restaurant for us to enjoy tonight.  I am making her a favourite dessert – coconut cream pie.  I want this day to be not any Mother’s day but one that I can say I did my best to show my love to this amazing woman I call my mother.

You see, it has not always been this way.  There were years when I did not want anything to do with Mother’s Day because I was bitter and angry towards her.  I had deep hurts in me that would fester constantly and I struggled for years with feelings of shame, inferiority and abandonment.  I had a huge hole in me that would not be filled where the security of knowing my Mom loved me and cared about me was empty, dark and engulfing.  This hole overwhelmed me for a good portion of my life.

It was only after Mom came to live with me 3 and a half years ago that healing began to happen as I had to forgive and love this woman in order to take care of her in a way that I had promised my Dad I would when he died.  I had grown up believing it was biblical and right to honour your mother and your father.  I never let my Mom know the deep hurt I had from her. I always kept that inside of me and asked God to take care of it.  I never wanted to hurt Mom and have her know she did not do the job I wished she had done.  I bore the hurt silently in her midst always wanting her to love me.  As I have taken care of Mom these last few years,  washing her clothes, getting her meals, injecting her with insulin and wiping up urine I felt my own desire to be loved slowly be replaced by a great desire to love her.  And as I recognized the autistic traits in her, I came to understand by leaps and bounds why she was the way she was.  She was not out to hurt me ever.  She just always did not know how to love me the way I wanted or needed to be loved.  She did not understand that the words she often said would sting every time she said them and cause bitter tears.  She was just telling family stories, her own recollections.  Living with Mom, I saw her in a whole new light.  A fragile, needy woman who had her own fears, anxieties and depression.  And I just continue to love her more and more each day.  I have a deep compulsion to protect her, to comfort her and to shower her with the best of everything I have to offer.

I want you to know this was not possible in my own strength.  It has been through the grace of God, his love flowing through me to her,  his strength to carry on each day when it felt like all I wanted to do was quit.  I rely on this strength every moment.  This is the hardest job I have ever done in my life.  Although I have healed so much and there is now no longer an empty, gaping wound in my soul, I now strangely enough, have another problem.  Because now I don’t want to lose her now that I have found her and feel loved by her.  I finally for the first time in my life feel accepted by her and now I could lose her any day.  BUT…  I have a precious gift that I now carry with me daily.  When my Mom goes on to Heaven,  I will have no regrets.  I will have no bitterness, no anger.  I have peace, a blessed peace that is beyond understanding.  God’s peace.  These 3 years have been the hardest of my life but they come with the greatest reward ever – the reward of no regrets and the reward of getting to know my Mom as she really is and not as I thought she was.   Life is not easy but life is good.   And today is a GOOD day.  It’s a celebration of a mother and daughter who have come through the fire and have been transformed into a precious pair of diamonds.  We are survivors – Mom and me.   Happy Mother’s Day Mom.  I love you so so much.