The “Long Haul” Part 2

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

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

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

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

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

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

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

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

What To Do in the Long Haul

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

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

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

A New Season of Grief

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

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

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

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

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

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

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

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

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

Laughter- what keeps me going!

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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???????????????