A Very Special Birthday

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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.

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?

I Give Myself Permission…

I am what you might call a driven person.  I have to be doing something, I have to be achieving something,  I have to see progress, I have to see results.  I am a person who lives with lists of to do items.  My world is formless, and empty unless I make a list every morning.  Then my day has substance and boundaries around it that I can see and understand.  I don’t always have to cross everything off the list – I just have to have the list.  But…. I am driven to get as much off the list as I can.

I feel like I can’t waste a moment of time.  Watching TV ( I mostly watch the news) has to be watched while doing something like flipping through a magazine, or updating my budget, or writing another list.  I love reading but I have a terrible time reading fiction.  I can’t allow myself the luxury of just reading for the joy of it.  I mostly read non-fiction where I will learn something.  Then I feel I am being productive.  I am working on this.

I worked in the school system for 33 years as an Educational assistant with special needs kids.  I worked all day, then often did things in the evenings, on weekends and holidays.  I go overboard with almost everything.  I love it this way,  I feel productive, worthwhile and accomplished.  When I retired 2 years ago, the first year was hell.  Not having the routine of going to work every day was so disruptive for me and foreign to my way of life for so long.  I had lost a big part of myself.  My saving grace was getting a job at the public library and at a Teacher’s Resource Centre.  I also  took over the library at my church.  These things kept me busy and feeling like I was still productive.  I also delved into doing projects around the house.  Anything to keep me going.

Of course, looking after my Mom was a huge part of my daily routine.  As she started failing more and more,  my stress level went higher and higher.  The physical duties of looking after her were not as overwhelming as the emotional stress of dealing with the fact she was failing and could leave me at any time.  I got more and more exhausted.  I tried to ignore the exhaustion and keep up a rigorous schedule.  I became more and more anxious and depressed and the exhaustion deepened.  I fought back with just upping the ante.  More jobs to do, more tasks to carry out.  Stay up late, get up early.

About a month ago,  I had an issue where I spiraled downward emotionally.  I withdrew from everyone, locked the front door, closed the curtains and did not answer the phone.  I basically curled up in my rocker-recliner with a blanket over me and hid from the world.  This went on for over a week when I finally surfaced and felt I might just be able to face the world again.  The curious thing though that happened was that even though I was back being with people and engaging in the world around me again I still found myself curled up in my easy chair a lot of the time.  When I wasn’t directly involved in looking after Mom or having to go out to work or run errands, I would retreat to my chair with a cup of tea and just rest.  At first I thought I was maybe getting depressed and I was worried but then I realized that I was actually feeling better.  I wasn’t zooming around at top speed and I didn’t seem to be distraught about it.  I was seeking out my chair more and more and relishing the time spent doing nothing.  This was so foreign to me but a relief somehow.

I know that I am totally exhausted both physically and emotionally.  I know I am in a critical state of overload.   I know that if I am to continue to care for Mom something drastic has to happen or else I will not make it.  Yesterday while talking to a friend about my resting so much in my chair I blurted out words I never thought I would hear myself saying.  I said to my friend, ” I am giving myself permission to do nothing!”  I think I shocked myself as much as I shocked her.  I have never voluntarily given myself permission to do nothing without dealing with the fallout of anxiety and self- hatred.  But when you are at the end of your rope,  your world view can change drastically in order to survive.  And for me to survive looking after Mom, I need to do a lot of NOTHING.  It’s very freeing to give yourself permission to do something even if that something is nothing!

I feel a bit like an earthquake just hit my world view.  Things are shaken up for sure.  This is new territory for me and certainly not completely comfortable yet.  But I want desperately to be able to continue to look after Mom in a healthy way  so as the dust settles, I am going to continue to settle into my easy chair or my hammock chair, sip on a cup of tea, maybe flip through a magazine or enjoy one of my cats on my lap and I am just going to rest.  And maybe, just maybe I can get through this time in my life without disintegrating or collapsing.

I challenge you to say those words, ” I give myself permission…..” and fill in the blank with something in your own life.  It will be a challenge but I believe it will be a positive experience for you, a ticket to move ahead in your life and leave negative patterns behind.  What could be better than that?

I look at my cats and see how they live without a care ( except when their next meal is coming and are they going to get their treats today?)  I want some of that serenity and bliss I see as they snooze in a patch of afternoon sunlight.  I want that ability to give myself completely over to relaxation and rest.  I wanna be a cat, but since I’m not – I will take a lesson from them and do my best to find a way to enter into a rest that will keep me going on this difficult and exhausting  journey with Mom.

A New Revelation

Today I was in conversation with my grief counselor when I had one of those light bulb moments.  One thing I have always felt is that when Mom goes I will not only be alone in the world but I will be LOST.  I have never really understood why I felt that way.  Of course, there are a number of good answers but they didn’t seem to fit my situation.

Today I think I found the key that unlocked the door to this overwhelming feeling of being LOST.

As most people with autism will acknowledge, we just don’t connect very well with people, with our world, with anything if truth be told.  For my whole life I have distinctly felt a disconnect with everything around me.  I go through life as if looking through a glass window not able to reach what is beyond.  I feel most of the time as if I am  in a deep fog.  I struggle to make sense of my surroundings all the time and if it is not a good day my surroundings overwhelm me greatly.  I struggle even to cross the street some days.  I will stand and look at the traffic lights and try to compute what red means or green means.  Sometimes I stand so long the lights change several times.  Other days I have no trouble at all.  Most days I have the feeling that if I just reached out and touched with my one finger a building or other structure around me my whole world  would tumble down like a house of cards.

But today in talking things out,  I suddenly realized that I do connect in one point.  I connect with my Mom.  It has not always been a good connection, in fact very detrimental at times but there is a connection.  I can say that in the last few years our connection is much more positive as lots of healing as happened.   I can’t quite find the words to explain but it is a connection that goes beyond time and space.  It is a deep, spiritual-like connection.  Something binds my Mom and me together – whether our shared autism, or that inexplicable mother-daughter connection people talk about.  I just know that of anything on this earth, my Mom is likely the closest I come to making a connection.  I never felt that way with my Dad yet I loved my Dad passionately and miss him so much.   So when I say I will be LOST when she dies I understand more fully why that will be.  I will lose the only thing/person that attaches me to this earth. Not even my beloved cats make the mark although they come pretty close.  Without her I am like a child’s balloon suddenly let go that bobs off into the sky with no direction, no security, no anchor to earth and at the mercy of the elements like the wind, rain, and electrical wires or tree limbs.

So what do I do with this revelation?  What would you do ?  It is good to know this but I don’t know what to do about it.  If Mom is the only connection I have made and I could lose that connection at any time what am I to do?  Do I live the rest of my life indeed feeling LOST?  I don’t know.  My attempts at making connections with things or people  have failed so far so what chance is there that I am going to have success after she goes with someone or something else?  Am I going to be a balloon forever bobbing around on this earth and goodness know where I would end up.  No wonder I am so petrified of losing Mom.  This is a tough dilemma. The world has just gotten a lot scarier tonight.

I guess I will have to take this one to God.  He is good with tough problems.  He has promised to look after me and I guess I have to just trust in that promise even if that means living in a world unconnected and alone.  God will be my ENOUGH.  One thing about being lost is that it is understood that when something is lost someone is looking for it.  It has value and is worth finding.  I saw on the news yesterday that a young boy accidently lost his cell phone in the garbage at his school.  The father took if upon himself to find that lost phone for his son.  He went to such lengths that he searched through a 50 foot pile of garbage at the garbage and recycling site.  And would you believe that he actually found it??  Jesus talks in the bible that he comes to seek and save the LOST.  I can have assurance that Jesus values me so dearly that he will seek me till I am no longer LOST.  I don’t know what this will look like but I will look forward to that day that I am found.

Now I am going to go and “connect” with my Mom as I get her ready for bed.  My beloved Mama.