A Very Special Birthday


One month from today my beloved Mom will be celebrating her 90th birthday!  Neither her, nor I, never thought she would see the day.  I have been doing a bit of research on 90th birthdays since I have no idea what is associated with this particular milestone.  I found out that it is the birthday of the double sapphire.  Not sure how much double sapphires cost but I have a feeling Mom will not be getting any jewelry with that stone.  Lucky for me, Mom is not interested in jewelry at all.  I also found out that purple is often associated with this birthday as it represents royalty, wisdom and dignity.  I like that.  Funny that I picked out this picture before I knew this tidbit of info.  The royalty part works well as I like to think of Mom as the Queen Mom and I enjoy trying to  treat her like royalty.

This morning I asked Mom what one month from today was.  She looked at me with a big grin on her face and exclaimed, “My birthday!”  I know this is a very special milestone for her in her life and I want to make it special for her. I have a feeling she secretly is hoping I will do something very special for her day of glory.  I don’t want to disappoint her.   What to do for a 90 year old??  How do I plan a special event without overwhelming her or tiring her out?  I have been musing about this for some time now and  have come up with a few ideas.

Mom does not leave the house much now so whatever I do needs to be at my house.  She also tires easily and needs her afternoon nap.  So……  I have been thinking of a small drop in event.  Later in the afternoon after she would be up from her nap.  There are unfortunately not a lot of her friends and family left but the few that are around will get a special invitation from me to come join her on her special day.  We’ll have tea  ( kinda like high tea since we’ll do it from 4-5:30pm)  little sandwiches, and goodies from the bakery in town ( since I am too exhausted to do baking)  I might try to make sugar cookies with the numbers 9 and 0 stuck together to make “90” cookies.  That might be the extent of my baking.  My brother and family will come down and join the festivities.  This will take place on the weekend before her actual birthday.  On her actual birthday,  I am hoping to have her one last best friend who is 93 herself to come for a lunch date with mom.  I will serve something nice for both of them.  For a gift for Mom I am planning with my brother to have a photographer come to the house and take family photos of all of us.  I think Mom would love this as she loves photos.

Well, this is all well and good.  Now I just have to get going with it.  It seems overwhelming but I really really want to make this birthday a very special one for Mom and for all of us.  I just have to override my exhaustion, my anxiety, my overwhelming feelings and like NIKE says,  “Just do it!”  I know there will be tears, meltdowns, and also great anticipation and excitement.  I CAN do this.

Oh,  forgot to mention that the cats will be sporting their best bow ties in honour of the special occasion.

Well, I better get going.  Got a party to plan and a very special Mom to honour.

My Brain is on Auto-Pilot

As I’ve mentioned many times in my posts, care-giving is exhausting.  Add the autism into it and it is more than exhausting, it is mind-numbing.  Lately, I seemed to have entered an interesting phase in this journey I am on of looking after Mom.

I suppose you might say I have resorted to putting my brain on auto-pilot to manage day by day.  I know exactly what I have to do to look after Mom first thing in the morning, throughout the day and in the evening when getting her ready for bed.  It’s like a mathematical formula that just repeats itself day in and day out.  My mind also knows to check for what we need in groceries, what medications I need to renew, to do the laundry when the pile gets quite high, to get Mom’s glucernas when she is running low, to feed the cats, to take out the garbage and so on.  Routine, Routine, Routine….

This is all pretty normal but what’s changed is the times that I am not in routine.  I used to work on projects like making my greeting cards, tidying, sorting, doing various crafts, reading, doing my budget and so on.  Now my blank times are just that – blank.  I sit and rock, I doze, I sit and hum, I sit, I sit some more and some more…   And most of the time my mind is blank.  Like it has turned itself off.  Even doing this blog is very difficult and I am forcing myself to think to write.  I have a speech to write for later this month.  I can’t get started.  My brain is out of gas.  My tank is empty.  And there is no gas station for miles around.  I am stranded in this land of blankness.  I forget to look after myself,  I forget to shower, to brush my hair ( I think it has been 4 days since  I brushed my hair – thank goodness for winter and hats.)  I forget to eat and if I do eat, I eat junk food.  Gone is the healthy diet I was on for the past couple of years.  Sometimes I wear my clothes to bed too tired to change.  Sometimes I’m too tired to go to bed and sleep in my chair.  And then pair that with nights when I am zinging and I stay up all night.

Emotions elude me at times.  I don’t feel sad or angry or happy.  I just feel nothing.  I just move through  the day doing what I have to to keep Mom in the best of care.  I must renege a bit here.  Yes, there are times that emotions elude me but there are also times when my emotions gush out of me like mighty torrents of raging waters and I am unable to control them. And it usually over something very trivial.  The other day I  wrote a letter to someone and I had spent a month trying to figure out what to say and just how to say it.  I got it written and was happy with it and saved it and closed my laptop.  Later I went to print it off and I couldn’t find it anywhere.  It was just gone!  You would have thought the world was about to end.  I cried, I wailed, I screamed.  I even felt I was so upset that I would need to go into the hospital and told my doctor so.  But I don’t have the luxury of copping out.  Who would look after Mom??  I have to go on no matter what.  This story does have a happy ending because when I calmed down enough I got myself together and took my laptop to a computer place and for $11.56 I was able to retrieve my letter.  I told the technician that if I had a million dollars I would give it all to him.  I was that happy.

I guess when you don’t have the luxury of copping out and you are in need of a break your mind just tells you it’s going on break whether you like it or not.  And I believe that is exactly what my mind has done.  It’s taking it’s own holiday without me.  How rude!   And it’s just hit the auto-pilot button so I can continue doing what I have been doing.

It’s not that bad really.  I’m not in pain, I’m not suffering much at all.  Being in a blank state is actually quite nice.  You just don’t get much done except the bare necessities.  But maybe that is just where I have to be right now until my brain decides it has had enough of a holiday and wants to come home.

Meanwhile, I’ll just continue to sit and veg and sit and rock and sit and hum and sit and sleep and best of all sit and pet my cats when they take advantage of me being in one place for a while.  Nothing better than petting a cat for your brain on a holiday.

So life is kind of on hold right now.  I don’t go out much.  I don’t do much.  I don’t have the energy to see my friends.  I am not able to read much.  I’m in limbo, in this weird state of mind and I don’t know how long it will last.  I guess I just go with it.  As long as I can take care of Mom I don’t care about me.  I have survived much worse.  I will survive this.

My Grief Stew

Today I played hooky from church.  I wanted to be alone, alone in my grief.  Anonymous actually.  I went to Chapters and sat amongst  a throng of people and was totally alone and anonymous.  For a long time I’ve aired my grief like dirty laundry hanging out to dry.  Every last piece of laundry scrubbed over and over attempting to somehow make it cleaner, nicer smelling.  Well, I found out that airing our grief in all it’s detail gets you nowhere.  At least it got me nowhere.  No, I must clarify – it did get me somewhere – right in the middle of getting very hurt.  So hurt, I have basically shut down.  And I cannot make sense of it.  I have no way to resolve it and I am left to wonder what in the world just happened.  Since I have no way of logically understanding the other person’s viewpoint I must conclude that I am at fault.  And that has turned my world as I know it upside down.  I must not be who I thought I was.  I thought I was a decent person, a kind person, a loving person.  But through my own fears I have turned into a monster, someone to deny that they exist, someone to totally reject.  I look in the mirror and I do not know who I am now.  I do not see who I thought I was, I see a monster.

So on top of the grief of dealing with my dear mother,  I now have another thick layer of grief to contend with. ( and just to make matters more desperate – I now have 2 family members with cancer and a couple friends with possible debilitating conditions.  My friends and family I have grown to count on in my time of desperate need or family that I wanted more than anything to reach out to after years of little contact are in their own twilight zone of grief and heartache.  I am left to wrestle with my grief mostly on my own now.  Promises to be there for me thrown aside amidst their own life struggles and upheavals.

Like the layers of an onion being peeled back one by one I cry and wail and carry on in the privacy of my basement – alone.  From now on, my grief must be expressed alone.  The onion is continually sliced with a very sharp, piercing knife that cuts to the heart of my soul.  The knife continues to cut….chop, chop, chop…   till the onion is in a thousand pieces and thrown into a giant stew – a grief stew.  My life is that stew with all the chunks of onion floating around.  At unexpected moments I bite down on a chunk of onion and the strong taste makes my eyes sting and tears roll down my face.  I never know when I will hit a piece of onion in this stew.  And it is a stew for good reason because I am stewing about all this – my autistic mind perseverates and ruminates on each bite and I can’t get the taste out of my mouth or my heart.  I have a beef with the world.  My world.  I hold no bitter feelings towards others – I have a beef with myself.  How dare I should trust my feelings with someone else.  How dare I should trust that what someone says is true.  How dare I should trust that I am worth being a friend.  How dare I,  how dare I……   I am nothing but a fraud,  a reflection – not the real thing.  Coke – it’s the real thing.  I’m a bloke – a fake, a joke.  I grieve now even for myself.  For what I thought I was and apparently am no longer.  I grieve the loss of who I was.  The peas (peace) in the stew is cruelly missing as my world is stirred up to a frenzy and my grief splashes out all over the place, hitting others and burning them, and just making everything very very messy.    Grief stew.  This may seem corny to you – and yes there is corn in the stew because it is corny – a cruel joke.  But I am not laughing.  My laughter is gone like the steam rising off the stew.  It disappears into the air, invisible, non-existant.  Grief stew.  The food I am living on right now.  And I eat it alone choking on every bite.

Stepping Back

When someone is sick in our society, we do everything in our power to make it better.  Our survival instinct is very strong and our whole health care system is set up to “cure” the sick.  I hurt my back a couple of days ago.  All I wanted to do was to make the pain go away, to be back to full mobility again, to do everything I could including icing, heat, exercises, rest, visiting the Emergency department, medication anything, ANYTHING…. to make it go away.

Looking after someone who is in palliative care is like doing a total 360 degree turn in thinking.  You literally have to rethink everything you believed about health and getting well.  Instead of fighting tooth and nail and forging ahead like a bull with it’s horns ready to fight, fight, fight….  palliative care requires us to step back.  To take off the boxing gloves and don gloves of the softest cashmere to caress and comfort instead of fight.

To my autistic brain this doesn’t make sense.  It’s not logical.  When you love someone you must do everything in your power to keep them, to preserve them.  To me it seems like giving up.  I’ve spent my whole life having to fight to keep going, to survive that to suddenly step back and just let nature take it’s course is as foreign as being on the planet Mars.

I have to admit I am having a real hard time with this.  I have had several conversations with the palliative care nurse about her blood sugars or her not exercising or not drinking enough water.  She has to each time gently remind me that this is not about these things any more.  This is about keeping her comfortable, and letting her make her own choices about how she wants things to go.  I listen but in my head I cry out NO, she has to do these things.  I can control what she eats, I can control whether she does her exercises.  You are telling an autistic she has to let go of all control.  Stepping back is a huge NO NO.  An impossibility.  Not logical.

How do you let go of someone you LOVE?  I know, I know, I have heard the saying about if you love something you let it go and something about it will come back to you BUT… Mom is not going to come back.  She will be GONE.  I want to cling to her, hold her so tight and NEVER let go.

Stepping back is like turning your back on all that you care about.  I feel like I am standing high in the air on the very edge of a diving board.  I step back and I spiral down and crash into the water sinking deeper and deeper.  I can’t breathe and I struggle to find my way in a strange watery world to a world that makes sense to me and I can breathe.  But I can’t make it to the surface.  I’m drowning, drowning in sorrow and loss.

Stepping back is the new reality for me now.  I have no choice.  The only choice there is, is to keep Mom comfortable and happy.  So can I somehow, turn my fight into fighting to do this in the very best way possible for her.  I think that will be my new goal.  That is the only way I can see to go through this and not drown in the process.  My mantra will be “comfortable and happy”.  I have to let go of the old way of fighting and embrace this new way of fighting for my Mom.  The only thing that’s different is that there is no winner.  And the grief goes on……

No Longer A Child??

One of the greatest fears I have had over the last number of years as my parents got increasingly older was for them to both pass away and I would be left an orphan – totally alone in the big wide world.

These days I face that fear directly on as I face losing my Mom, my last living parent.  This fear has been so great that 2 years ago I was in a very dark place where I concluded that once Mom died there was nothing left for me on this earth.  I planned on taking my own life after Mom went so I could be with her and Dad in Heaven.  This was a certainty for me.  Being left as an orphan somehow had morphed into a nightmare of the worst kind.

I did not understand these feelings I had.  I just knew they were there full force, staring me in the face and taunting me.  I did not want to be an orphan, alone, alone alone……..

I also did not understand the whys of these feelings until I read a book the other day called “Death of a Parent”.  In it, it talked about the universal loss we all go through.  We all lose our parents and we become the next generation.  Our mortality looms in front of us and our history of being a child disappears.  We are now a full-fledged adult.

I don’t know if it has anything to do with my autism but I have always been scared silly of growing up.  There was comfort in being the child.  Being the child meant that when I was needy and didn’t understand the world, I could seek out help.  Children rely on parents and other adults to care for them, to help them, to guide them.  As an “adult” I still rely heavily on others to help me maneuver through this overwhelming world.  This is hard enough for any normal adult but for an adult with autism the world is a very scary place.  So for me to suddenly lose my “child” status when my Mom dies is earth shattering.  Can I still ask for help when I need it??  Am I supposed to be able to all of a sudden manage everything that at the moment I can’t??  Suddenly becoming ONLY an  adult is a 360 degree change and change and autism DO NOT GET ALONG!  Who will I be??  I have enough trouble understanding who I am now.  How on earth will I ever figure out who I am as an ADULT?  I don’t know if I am making sense to most of you reading this.  I have always coveted the CHILD position in my identity.  Losing Mom will change all that…… or will it??

What if…..what if….. what if losing my identity as a child gives me the FREEDOM to explore my life as an adult?  What if it could actually be a positive thing??  What if it means I no longer need to listen to the tapes of who I have been to my parents ( even though I have loved them both dearly, I have lived with an identity of shame, belittlement at times, neglect and much hurt).  What if I can create NEW tapes of who I am?  What if I can see the future as an adventure of discovery and creativity and new beginnings instead a dead end?  Sure, there will certainly be much grief.  I know that for certain.  But could the grief be transformed into hope, renewal instead of a pit of despair of which I can’t escape from.  I think of the caterpillar and it’s transformation into a butterfly.  It literally has to die to self to be transformed into a new creation.  New life can rise out of death.  Just as Mom can have new life in Heaven, I am sure she would want me to live a life here on earth where I would continue to grow, transform, create and love.

I picked the photo for this blog of the lion with the child for a very special reason.  It may seem like a strange choice but just hear me out.  I may lose my CHILD status here on earth when Mom dies but I am an eternal child of the King, the LION OF JUDAH, my God.  I am eternally HIS child.  When I am scared, lonely, needing comfort or advice I have a Heavenly parent that I can go to anytime of the day or night.  I can climb up into the King of the Universe’s lap and rest in His unconditional love knowing my Abba Father will take the best care of me ever!!!!

No Room for Error

I’m just sitting here thinking about the holiday season.  It seems as if every year it gets busier and busier and more frantic and people do stupid things because they have too much on their mind.  In the week before Christmas I was almost run down 3 times by cars that almost went through red lights as I walked across a busy intersection on the green light.  I also almost got run down by a reckless driver who backed out of a parking spot at full speed without looking.  I had to run to avoid getting hit.

When our minds are preoccupied, accidents can happen.  We just don’t think.  Not only is it more evident at the holiday season but I think that we who are caregivers can also be so preoccupied that we don’t think straight.  When I talk to any caregiver the number one complaint is how tired, how exhausted they are.  We all know that exhaustion causes us to not think straight.  We can make mistakes without even realizing and mistakes in caregiving can be deadly.

Where am I going with this??  Well,  I have had two incidents happen in looking after my Mom that could have had very adverse reactions.  Many caregivers are also the ones who dole out the medications for the elderly one in their care.  It’s a daunting job and a very serious one.  I look after ALL my Mom’s medications most of which are in blister packs but she also has insulin for me to manage and to administer, nitro patches to remember to put on and take off, blood sugars to monitor, extra medications which are not in the blister packs to give, eye drops to give, and ointments, sedatives, laxatives etc to give.  Sometimes medications are changed mid-month and that means removing a pill from what she gets in the blister pack or adding a pill.  I find all this extremely overwhelming and scary.  Especially after 2 mistakes.

A few weeks ago I administered a dose of insulin only to discover it was an old pen that I was saving because it had a small dose of insulin in it left that I was going to use if her dose went down.  Unfortunately, the pens are only supposed to be out of the fridge for 28 days.  I had no idea how old this pen was.  I panicked royally.  Was the dose I gave going to be effective or was it no good?  Do I give her another dose to cover in case it is no good??  What if her blood sugars drop severely and she falls during the night?  Thank goodness I am blessed to be part of a program where I can talk to a nurse 24/7.  So at 10pm at night I called very upset.  The nurse assured me it should be OK and not to give her any more.  I was assured but only to a point.  It was basically a sleepless night as I kept a watch on Mom to make sure she was OK.  I have learned my lesson.  I do not keep partial pens anymore.  I dispose of any I am not currently using immediately.  That was incident number one.

Incident number two happened just the other day.  We now have a palliative care nurse who can prescribe medications and she prescribed 2 new medications for Mom.  When I picked them up I was in a hurry ( yes, there it is)  and when the cashier asked if I wanted to talk to the pharmacist about these new drugs I declined, saying I would just read the info that came with the pills.  Well, no info was with the pills.  So I looked them up online but was confused a bit between the two and did not fully realize the dangers of one of the drugs.  It was a drug that was NOT to be stopped once started and only gone off of very slowly.  I neglected to read that.  The one night Mom was having trouble so I asked her if she wanted to take one of her new pills.  She declined.  ( She would rather take 100 different vitamins than a prescription pill)  I thought that she could take this pill just whenever she might need it.  The nurse who came to check on Mom ( one comes every week) took a look at the new medications when I told her about them and warned me severely about stopping this particular drug.  In my exhaustion and rush I failed to get the proper information on a new drug for my Mom which might have had dire consequences had I given it to her.  I shudder to think what might have happened had she not been so stubborn about taking new prescription pills.

I guess what I am trying to say in all this is that we as caregivers have no room for error.  Our elderly loved ones are at our mercy and we have to be so careful in what we do each day.  We have to be on top of things, we have to be alert, we have to be informed.  We can’t second guess things.  As I said before it is a daunting job.  And it scares me half to death.  If I did something to cause my Mom harm even by accident I would be forever upset and it would be hard to forgive myself.

I guess that after these incidents I realize just how important our job is and how important it is for us to take care of ourselves as caregivers.  We need to check, check, double check, triple check.  We need to read up on all the medications, their side effects etc and we need to access the supports in our lives like the doctor, pharmacist, nurses etc to get the full picture of what is going on with our loved one.

Having autism,  can make this a very overwhelming affair but I also find that having autism does have it’s positives.  I run my home like a nursing home.  I have alternate plans for care, I have phone numbers posted everywhere,  I have all mom’s agencies info in one place by the front door for any care person to access.  My strong sense of organization comes in handy and my attention to detail ensures that I go over everything a number of times….. Most of the time!  It’s those blips in the system when I am overwhelmed, preoccupied, distracted that can spell disaster.

Caregivers,  look after yourselves.  Look after yourselves well.  Get all the help you can.  And always double check.  And if you’re still not sure – triple check.  As I said we have no room for error.

My Christmas Wish

I haven’t written a post in quite a long time.  Christmas is such a stressful time for me and also so overwhelming and exhausting that I have been just too exhausted to think about writing.

But Christmas Day deserves a post.  What a special day.  Because I have a strong faith Christmas is very important to me.  God came down from Heaven to become a man in order to have a relationship with us.  And what a wonderful relationship it is.  But what does that have to do with this post on grief and my Mom.

Well, Mom is slowly getting worse.  We just got a palliative care nurse to help manage Mom’s care.  She is getting so weak that even signing her name on her few christmas cards was almost more than she could manage and it caused her to have severe shortness of breath.  The last few days I have noticed that when I am with her I can hear her breathe.  It’s like she is lightly snoring or wheezing or something.  Basically her breathing is getting more and  more laboured.

Mom won’t do the exercises that can help her breathing.  She won’t take the medication the palliative care nurse prescribed to help her when she is short of breath.  She wants to do things her way and although it makes me angry I have to respect her desire to do things her way.  It’s so hard to watch her go downhill.  It’s so hard to listen to her complain about all that she can’t do any more and how she feels useless.  It’s so hard to know things are only going to get worse.

I love my Mom so dearly.  I would do just about anything to reverse this aging process so I could have her with me for a long long time to come.  Unfortunately that’s not the way life works.  So this Christmas I made a wish to God.

I asked God that He would take Mom home on Christmas day so she could be with Dad in Heaven on Christmas.  I thought that would be so neat.  She would be free.  No pain, no mobility issues.  She could dance, run, skip and even just walk with no problem.  And her head… her head has caused so much discomfort since her stroke 15 years ago.  She would have no problem any more.  She would be free from her awful head.

I know in past posts I have talked a lot about needing release for me.  I have been at the end of my rope and I needed release but this Christmas wish was more about release for Mom.  I know she is miserable.  It just seemed like such a neat thing if she could be in Heaven on Christmas with her loved ones and her beloved Saviour face to face.  To see Dad again would be so wonderful for her.  I wanted that desperately for her.  But I guess it is not going to happen.  Mom’s doing well today.

Please don’t get me wrong.  I’m not wishing her dead.  As a christian I am wishing her to be in her new body with her loved ones who have gone on before her.  Of course, I will miss her terribly and I will grieve and life is going to be very hard without her.  But at some point you have to lay aside your own fears, your own desires and look beyond your own security and comfort.  I just really wanted Mom to be with Dad.  I know she misses him so much.

I don’t know if this is going into another stage of grief or another acceptance of sorts but I wanted to give Mom a special Christmas gift by asking God to send the angels to take her to Heaven.

It is true I am exhausted, overwhelmed, and burnt out.  I need release too. But I am willing to keep going as long as Mom is on this earth.  I know God will give me the strength.

I guess I will have to tuck my Christmas wish in my pocket and hold on tight to it to maybe next Christmas.  It’s OK to make a christmas wish but if it is not God’s wish then I don’t want that wish at all.  God’s timing is perfect and that is what I want for Mom.  Instead of this Christmas wish I have had the blessed chance to have another christmas with my Mom and that is so special.  When someone is in palliative care you just take each moment as it comes and you treasure each moment as a special gift.  I may  not have gotten my christmas wish but I got a very special christmas gift – my Mom for another christmas.  What more could I possibly ask for?