The Night is Coming…

I used to love when night came because it meant that I could go to bed and say goodnight to the world for a few hours.  I used to love the quiet, the peaceful feeling, the way I could relax now that my work was done for the day.

Mom turned 90 in April.  Since then she has steadily gone downhill.  She often has her worst times at night.  Now I fear the night.  As it starts to get evening I begin to wonder if tonight she will have a hard time.  The dread increases as the evening progresses.  I check on her about 8pm to give her some medication to help with any shortness of breath that may come on.  Some evenings she is just fine.  Other evenings she is so bad I fear I will lose her.

She now sleeps sitting up in her easy chair in her bedroom.  That is the only way she can get comfortable and sleep with the shortness of breath and fullness she feels in her chest.  Sometimes she has chest pain and out comes the nitro spray.  I prop up her pillows,  I put on her fan,  I get her her medication and her insulin shot.  Then she can go to sleep.  But she often can’t sleep.  She just tosses and turns.  I lay on her bed in the dark watching, watching…  Yes, her chest is still rising and falling.  Yes, I hear her breathing.  I keep watching while I sip on a cup of tea.  The minutes tick by.  Soon it is a couple of hours.  I don’t want to leave her till I know she is OK.  Sometimes I phone the nurse on call.  Just to get reassurance I am doing everything I can possibly do.

I pray and pray some more.  I talk to God in the dark.  I just downloaded a CD by a group called Rend Collective.  They have a song called “True North”.  Part of the words is, ” I will follow you into the dark”.  These words have a profound effect on me because I must face the dark.  It is all around me and I can’t escape it.  As I lay on Mom’s bed in the dark of the night I am following God into the dark of my soul.  The dark of knowing that one of these nights Mom probably won’t wake up in the morning.  But I am comforted by the fact that what is true in the light is also true in the dark and God is my comforter, my protector, my all sufficiency, my enough.  Both in the light and the dark.  It says in the bible that the dark is as light to God so if I follow Him into the dark I do not have to be afraid of the dark cause God is light.

It’s hard not to let my own fears rise up above the comfort of God’s light in the dark.  I have to force myself to rest in God and trust him rather than give in to the fear.

Usually around midnight or 1am,  Mom seems to settle and if she talks to me and she seems lucid I feel I can leave her and go crawl into my own bed.  By this time though I am usually on hyper -alert and I can’t sleep.  I often go downstairs and watch TV for awhile, have a snack, and do a quick check on Mom every once in a while.  Sometimes I fall off to sleep in front of the TV,  sometimes I am awake till the light starts to stream in the window.  I usually can count on 2 days of hyper-alert before i can settle down to normal life again.  Unfortunately, these nights are happening more often.  There is not going to be enough time to regroup between bad nights.

Well, the night is coming….  I had better go give Mom some medication and hope for the best.  Another night is coming…..

Selfish Woes – Further Thoughts

My last post entitled “Selfish Woes” had me a bit worried after I posted it.  Worried because I do not want those who are caring for loved ones to think that caring for ourselves in the midst of our caring for others is selfish.

My post was a lot about my trouble with the word “selfish” because of my connotations it had for me from my growing up.  But that is MY story and should not be the story of caregivers who may read my post.

I want you to know that I do value the fact that we MUST look after ourselves if we are to be the best we can be for our loved ones.  We cannot care for them if we are so burnt out ourselves we can hardly function.

Having said that,  despite the fact that I do feel selfish when I do things for myself I know how important it is to do them anyways regardless of those feelings.  Caregiving is one of the hardest jobs for anyone to take on especially if you have a family you are also trying desperately to take care of.  I don’t have children, only my two crazy cats and I find that the last 4 years of looking after Mom are the hardest years of my life.  For me,  it is essential that I look after myself because there is noone else to do the job if something happens to me.  I am it!  So what am I doing to look after myself??

Well,  here are a few things I do.  I have tea with friends – one of my favourite things to do.  A quick hour with a friend energizes me for a week.  If I am having a particularily hard day, I may go to my safe haven in the basement and cry or even scream and just let out the frustration and exhaustion.  Sometimes I will just sit or snooze down there while Mom is sleeping in the afternoon.  On my days when I have a bit of respite I often go wandering.  It could be shopping, or a walk along the water or working in my beloved little church library I run.  This is my positive wandering.  Many times in my life I have wandered when it was not safe like in the middle of the night.  I run when things are scary or upsetting – perhaps part of my autism.  Wandering is an outlet for me, a way to release pent up feelings.  I just have to make sure I do it safely.  I’m actually taking a wander up to Ottawa soon – my first day away in a few years.  I am going to take in the Lego exhibit and the Impressionists exhibit – positive wandering.  Another thing I do for myself is rocking either in my rocking chair or in my hammock chair with a good cup of tea.  Having a cup of tea is my comfort and rocking eases the stress in my stomach.  One thing that I do find very hard but know I have to do it is to give myself time when I am finished work.  I come home, say hello to Mom and then go and have a cup of tea and rock for about a half an hour.  I know Mom is eager to see me but my autism requires me to have time to recoup from being with people for several hours,  I NEED time alone.  Then once I have had my time alone I can deal with the evening and being with Mom.  I usually make a second cup of tea and go up to Mom and have a chat or watch TV with her for a while.  I do feel really guilty about this but I know it is a necessity to my well-being or I will not function for the evening.  I bury myself in a good book at times, I watch a bit of TV,  I do a craft ( I make my own greeting cards) or I work in my garden. Perhaps the most important thing for me personally is to pray or read my bible or just rest in the presence of God.  God gives me the energy to go on day after day.  This is essential to my personal survival.

So…. I do know I have to override any feelings of being selfish and make sure I take time for myself.  I guess what I was saying in my last post is that it is extremely difficult sometimes to do that overriding.  But it has to be done if we as caregivers are going to survive.  Taking care of ourselves as caregivers is as dear as making sure we drink lots of water on a hot day.  And some days are a lot hotter than others when you are a caregiver!  Drink that water!!!

Selfish Woes

As I think about caregiver issues, the one that comes to mind most often besides being exhausted is the issue of feeling guilty when we take time for ourselves.  Maybe I am wrong but it seems to be in every book I read on caregiving and in a lot of articles, testamonies etc.  I must say it is a HUGE issue with me for a number of reasons.

Growing up with undiagnosed autism,  I often appeared to be selfish or not wanting to be with others, not looking at others, not interested in engaging with others.  My Mom, not understanding my extreme need to be alone at times, and the the exhaustion of engaging with the world, was forever calling me selfish.  I don’t know if she just picked that word to best describe her frustration with  me but I grew up believing I was basically the most selfish person on the face of the earth.

Thus, for most of my life,  I have desperately tried to negate that despised word by trying to help others, give things to others, remember people’s birthdays etc etc.   No matter how hard I try, I still feel the sting of that word and still feel I am selfish.

Enter stage left –  my job as a care giver.  No job is more selfless than being your all for a loved one.  I have taken on the job of looking after Mom 180%.  My whole life now, revolves around my Mom.  Every aspect of her life I manage and I do it as if she were the Queen of England.  I want only the very best for my Mom – nothing less will do. I go to great lengths to do the best for Mom including ignoring the advise of a number of people in my life who feel she should be in a Nursing Home.  She IS in a Nursing Home – Lorna-Jean’s Nursing Home – the best one around!!  I go to great lengths to get her exactly what she wants to eat,  I bring her flowers from my garden or from a store.  I will do ANYTHING to make my Mom’s end of life the best it can be.

So here is the question.  Have I beat the selfish label by taking such good care of my Mom?  Have I cured myself of this despicable title?  Am I trying to prove to my Mom that I am NOT selfish like she has told me all my life??  Am I trying to prove it to her at the extreme cost to my own health and well-being?

Well, if I am honest with myself,  I still feel very selfish.  And here is the conundrum that faces every care giver.  When is enough enough?  When is it OK to take time for yourself?  And take it without feeling guilty?  I don’t know the answer to that because I feel guilty everytime I leave the house to do an errand or to do something for myself.  I feel guilty if I am too tired to watch Lawrence Welk with her.  What happens if she dies and I missed the chance to have that last time with her?  There is always that fear.  What if I miss an important moment with her.

BUT…  what if I secretly desperately wish to just go away for a day and not have to worry about her?  What if I want to go shopping and stay a little later than I maybe should?  What if I wish I could visit a friend in another city?  What if I secretly wish I could be released from this job of care giving?  Oh Dear…. selfishness raises it’s ugly head.  What if I wish I didn’t have to make her supper every night?  What if I wish I could go out to my friend’s farm and not have to worry about staying a little longer than I should.  What if I wish I could take a course in the evening or join the knitting club on Friday nights but Mom doesn’t like me out at night?  What if I wish I didn’t have to see her decline in front of my eyes?  What if….what if….  what if….  I feel so, so…so… selfish.  There I said it.  Maybe Mom has been right all along.  Maybe selfishness is built right into my character and I’ll never get rid of it.  There’s nothing like care giving to put a spotlight on feeling selfish.   The most selfless job creates the most perceived selfish thoughts.

I struggle every day with this.  The more tired I get, the longer the care giving goes on, the harder it gets, the worse Mom  gets, the more selfish I feel.  That old song “Please release me” ( just those three words) goes round in my head more and more and I feel guilty more and more.  A never ending circle of selfish woes.

This Body is Rusted Out

I’m going to have a birthday in a few days.  I’ll be 59 but lately I feel like I’ll be joining Mom at being 90!

I did not realize the physical toll that caregiving can take on your physical health.  I have experienced the emotional toll and am very familiar with the gamut of feelings I have as I travel this journey in looking after Mom but did not imagine nor expect the wide breadth of effects looking after someone in palliative care can do to you.

The last couple of months I have become increasingly exhausted – so much so that even washing my hair in the kitchen sink required a good half hour of talking to myself to muster up the strength to do it.  Just frying my Mom’s egg for her supper had me in tears as I struggled to get the task done. And my blogging has been left at the side of the road to gather dust much to my dismay.  I have just been too exhausted to even think about writing.   I just suspected it was the emotional strain on me that was causing the extreme tiredness.  After going to the doctor about something else I had bloodwork done and lo and behold my thyroid was all out of whack.  Now I am on thyroid medication and even after just a week I am noticing a change.  I know this can be a normal age related problem of many women and not necessarily due to stress but this is just one thing.  I also have a wicked case of tennis elbow ( and I don’t even play tennis!)  My normal day to day activities like carrying heavy bags ( I don’t have a car) and other small repetitive activities would hardly bother me normally but my whole body is weakened and so the tennis elbow.  Then there is my back.  I am always lifting heavy things like 50 lb boxes of kitty litter with no problem whatsoever.  But I have put my back out several times in the last couple of weeks.  My asthma has started up again after being dormant for a number of years.  My allergies are worse than normal.  I am reacting to foods I never reacted to before.  Headaches are a daily event.  Joint pain is much worse than it has been in years and on and on it goes.

I definitely feel like this rusty old VW beetle must feel.  When I was much younger I always told myself that if I ever got a car it would be a lime green beetle.  That was my dream car.  Brand new and spanky clean, shiny and peppy.   But I never did get one nor any car for that matter as my autism makes it too hard for me to manage driving.  ( I did get my license though)  For years,  I had a toy model of a lime green beetle that sat on my shelf to remind me of my dream.  That dream seems long ago and unattainable now.  I am just getting more and more rusty and old.

I hate the feeling that my body is in a state of disrepair.  I can tell when it is not healthy.  Of course it would help if I ate healthy and not a diet of about 4 different foods and that is all.  And it would help if I could sleep better and not wake feeling like I have been run over by a bus.  And it would help if I could afford to go back to the YMCA and swim in their heated pool where I had a 40 min. exercise routine all worked out and it felt SO GOOD.   But the reality is that I am not good at taking good care of myself.  I’d like to say I am very good at taking care of my Mom but not myself.  I know this is not right and I need to take care of myself so I CAN take good care of my Mom but I have no energy left to take care of me.  All my energy during my day and nights is directed at looking after my Mom.  That’s the caregiver’s dilemma I believe.  My autism doesn’t make it any easier as things like personal hygiene and brushing my hair etc are a nuisance at the best of times.  I’ve noticed a real decline in my self-care as I continue longer in my journey of looking after Mom.  Don’t have the energy.  Don’t care.

So what do I do??  Don’t know.  Don’t think much is going to change  unless I have someone start caregiving me and helping me do all I need to keep healthy.  And I don’t have a person like that in my life.  It takes all I got to look after the house and Mom and keep things a well-oiled machine.  Something’s gotta give and that something is ME.  I think as long as I am in caregiving mode this is the way it will be.  I feel selfish if I pay too much attention to myself and I think this is a common feeling with those who are caregivers. ( more on this in a coming blog).  Those closest to me beg me to take a break but how do I do that when the job is 24/7 with little relief?  And it takes just as much work to put a plan in place for someone to come in to look after Mom while I am away than to just stay home and do it myself.  ( teachers taking a sick day will attest to this.  They often come in sick just so as not to have to make up detailed supply plans)   I have conceded to a short one day break though in June sometime around my birthday.  I want to go to Ottawa and see the Lego exhibit and the Impressionists exhibit.  It would be a whirlwind trip up on the bus and back again before 8pm at night with someone we know well who will come in and check on Mom a couple of times during the day and give her supper.  I know I may chicken out though.  Just the thoughts of planning it and buying bus tickets etc is totally overwhelming.  Maybe I just need to go to the basement and veg for a day.

To be honest,  I know cars can be restored to their original grandeur.  So at some point I can be restored as well.  Don’t know if it will happen while Mom is still with me.  I suspect restoration will not happen till after my caregiving days are over and the severe anxiety, stress, fear, worry and all the other hazards of caregiving are past.  I just need to keep put putting along despite the rust.  I just hope the bottom doesn’t fall out of this old car before I am restored.  Or maybe I can be a car like Fred Flintstone had.  He just used his feet for gas.  So yabba dabba do and off I ride even if it is a put put put instead of a zoom-zoom!

The Music in Grief

No, Kermit the Frog does not necessarily remind me of grief but it does remind me of his famous song “It’s Not Easy Being Green”.  I’d just change the words to “It’s not easy being a Caregiver”.

If I could sum up my life in a song right now, it might go something like this.  It would probably be piano music since I am most familiar with the piano as an instrument.  The piano is versatile just like I need to be as a caregiver.  At times my song would be a slow lament in a minor key.  There would be phrases of the music that would play over and over again as I go through the daily routines that seldom change.  At times the beat would be very heavy and slow as I chant, “one foot in front of the other”  or “take one day at a time”.  Then there are the places in the score when it would be frantic notes, chaotic notes, madly racing up and down the keyboard as I go into crisis mode when Mom falls or she has a bad day and my anxiety rises sky high.  This frantic playing may go on for days until I can quiet myself into a lullaby of sorts because i am so exhausted.  Sometimes the notes would jingle along in a merry tune as Mom and I share a great memory and a laugh.  Sometimes the music would be like on an old player piano that would just play all by itself when I am on auto – pilot, unable to function well.   Then there are the times when the music would be a shrill pounding of high pitched notes that would echo through time and space bouncing off of walls and crashing into each other as I am curled up in the basement screaming and screaming till there is nothing left but an eerie silence as the music pauses before it gently plays quiet tunes while the tears fall.  This song has no end – at least no end that I can see.  The music just keeps playing and playing, rising and falling, fast and slow, on and on and on.  I am tired of playing my song.  I want it to stop but it can’t stop, not yet. Sometimes I scream for the music to stop and I cover my ears but it is always present in my mind.  I am also at the same time as wanting it to stop, scared silly if it does stop.  What will I do with out  the music??  It’s like a friendly nightmare.  A rhythmic gentle reminder that my Mom is still alive and all is right with the world.  Only all is NOT right with the world.  One of these days the music IS going to stop – DEAD.

Will I go crazy without the music??  Will life stop??  Will the silence be deadening??  What to do. What to do.

I know.  What if I pick a new song?  A new song for me.  I could go to I-tunes ( me-tunes)  and check around for a new song for myself.  What would I pick?  Well, probably something soothing and something at the same time daring and adventurous.  A piece of music with twists and turns and I’d find a piece with a fiddle as well as a piano to add a catchy rhythm.  And what about some bagpipes thrown in for good measure,  and lots of drums.  Oh, and a harmonica.  I love the harmonica.  And for those days when I want to curl up with a good book what about the sound of a rainmaker.  Such a soothing, gentle sound.  At times though,  there would be a haunting lament playing as I remember and grieve.  I could then, pick a new song for myself.  But do I have the courage to do it??  I will be so afraid when Mom goes.  Maybe it will be like the song with the iconic words “the day the music died”.

But then,  I forget that the master songwriter already has a song picked out for me to play or to sing.  It says in Psalm 40:3 “He has given me a new song to sing, a hymn of praise to our God.  Many will see what he has done and be amazed. They will put their trust in the Lord”  I don’t have to search for the perfect song.  God has the perfect song just waiting for me.  I only have to learn it once the old song is gone. It might take a lot of practicing and hard work but nothing could be harder than what I am going through now.  This new song will have hope and relief and joy and sadness all mixed in.   And it will be the most beautiful melody in the world.

Anticipating Discombobulating!

One of my favourite words in the English language is the word “discombobulate”.  It has it’s origins as an early american slang word that means to confuse, disconcert or befuddle.  It also means to cause to be unable to think clearly.

I think I first really came to appreciate this whimsical word when I was working with 2 little autistic girls in kindergarten.  The one little girl would emphatically complain, ” I’m discombobulated!!” whenever she was overwhelmed or confused.  It was the perfect word to describe how she was feeling and it has become my go to word when I also am confused or overwhelmed.  The way it bounces around on your tongue is exactly how my brain feels as everything is bouncing around in my brain.  Thoughts are pinging back and forth with no rhyme or reason.

I think this is a wonderful word for us on the autism spectrum.  It so thoroughly describes how we feel when too much is coming at us, when we are totally bewildered with the world around us.

I have found myself saying this word a lot lately.  It seems my world is ever changing and confusing and as a result I am totally discombobulated.  Let me give you an example.

My elderly Mom fell last week and she is getting steadily weaker.   She told me the other day while crying,  that she didn’t think she could get to the bathroom by herself anymore.  I went into hyper-alert mode where I felt something had to be done to address this new state of affairs.  I asked for more PSW support,  I asked for volunteers from my church to help stay with Mom while I did errands because I did not think I should leave her alone.  With some people lined up I felt more secure in thinking I had tackled the problem and Mom would be safer.  The next day Mom was in good spirits and told me she could get to the bathroom by herself – thank you very much!!  So this is where I suddenly get very discombobulated.  The whole scenario has changed.  What happened to the way she was feeling the day before??  How do I plan for Mom’s care when things change so drastically from day to day??

I have learned that this is the new normal state of affairs – total discombobulation!  I never know which Mom is going to wake up – the weak, struggling mom or the confident, cheery mom.  And how do I look after her effectively when each day has the potential to be so different?  I have had wise advice that I just go with the flow and do my own thing like I have always done.  Continue to do errands when she is napping, get her to go to the bathroom before I go out, remind her she has a lifeline she can activate and that I always have my phone on me.

Even though I love the word “discombobulate” I detest how it makes me feel.  It’s like living with pain in your brain.  It’s like you are walking on jello.  Everything is all wiggly and jiggly.  Nothing is for certain or stable.  Not a fun state to be in.  Looking after Mom is often so discombobulating which just adds to the stress I am under but it’s all part of the journey I am on.  Travelling along the road of Mom and me together and suddenly you hit a mess of potholes and you bounce around like those ping pong balls in a bingo machine. And let me tell you,  our roads are full of potholes especially this time of year.

Well, so I am anticipating more discombobulation.  Comes with the job description.  It’s a small consolation to at least have fun saying the word when I am in that state.  DIS-COM-BOB-U-LAT-ING!!!!!

Birthday Mission Accomplished

I wrote my last post 6 weeks ago – far too long to be not writing.  Unfortunately it has been a very tough 6 weeks and the last thing I felt like doing was writing.  I did not want to think about grief, I did not feel like talking about my feelings.  I wanted to be in a fog, in some never never land.  I wanted to just be on auto- pilot all the time and not deal with life.  But life has a way of going up and down,  being good and bad.  The last 6 weeks were very bad but now its not so bad.  I say that almost whispering it, for fear of what might happen if I said it out loud.

I want to go back and tell you about Mom’s 90th birthday celebrations.  They couldn’t have been more perfect!  Both days, the day of the party and her actual birthday were beautiful sunny days.  Mom felt very good on both of those days which was a blessing.  I managed, despite living in a fog, to pull everything together and put on a real nice time for Mom both for the party and for her luncheon on her actual birthday with her childhood friend who is now 94.  I did not think I could do it but I managed.  Mom was in her glory!  For one of the very few times in her life she was the one we were honouring and she lapped up every bit of the attention bestowed on her.  It was wonderful to see.  It felt good to really treat her like a Queen.

I must admit though that I sensed a shadow over things as the celebrations were happening.  I had this nagging feeling that things were going to change once she was 90.  Unfortunately, my nagging fear is coming true.  Ever since she  turned 90 she has been steadily going downhill.  I don’t understand it except to suspect that somehow in Mom’s mind, 90 was the turning point.  Or perhaps I should say the point of no return.  She used to always say she was going to live till she was 100.  Now she does not say that. Instead, almost every day she talks about how she is not going to live much longer.  She’s 90 now she exclaims.  She’s not going to live forever.  So I am watching her decline before my eyes and I can’t quite catch my breath for the fear that is rising in me.

Last night she fell.  Hard.  But my 90 year old mother has bones of steel.  She is my Wonder Woman.  She says she is not even sore.  Her crashing to the  floor woke me out of a dead sleep.  She just missed cracking her head on the corner of the wall.  It ‘s like an angel just lowers her down between the furniture and other obstacles so she does not hurt herself.  The problem is trying to get her up.  She does not like me calling the paramedics so she stubbornly tries to get herself up into her chair.  After much struggle and several puffs of her nitro spray she managed to do it with the little help I could give.  She sat there for a few minutes while I sat on her bed and then she looked at me and grinned.  Oh, she is a stubborn lady.

She may be alright.  No bones broken.  No head injury etc.  I should rejoice right??  During the time I am helping her I go very calm and methodical.  I have heard that those with autism often do this.  I become almost robotic like.  But it’s after that I fall apart.  I can’t sleep.  I fret and worry about her falling again.  I wonder what this means in the whole scheme of things.  And the fear of losing her ramps up a few notches like I just turned up the sound on the TV so it is blaring in my mind.

Is it all down hill from here?  Was 90 the magical date where everything starts to change?  Mom said tonight as she was crying in bed, ” I feel myself going downhill more and more all the time”.   I stroke her hair like I would a child and I can think of nothing to say except that God will look after us.  He always has, He always will.  I give her a kiss, tell her I love her and turn out her light.  I close the door to her room and fight back tears.  Grieving is not easy but it is comforting to know that you don’t grieve unless you first love.  Grieving is the expression of that love.  I love my Mama so much.

But whatever happens from here on in,  the birthday mission was accomplished.  She reached her 90th birthday – a major milestone for her.  And we did it in style and grandeur.  After all,  there may be a Queen in England but Mom is the Queen in my house and life.