Vignettes of Grace and Grief – #2

Vignette #1 –    Mom has been wanting a laptop for quite a while ever since her computer crashed.  She kept asking me about it and I knew I had to get going on finding something suitable for  her.  After my concussion I was not supposed to be online but after a couple of quiet days I went online and madly researched laptops and finally came up with a model Ifelt would work for her.  I was able to get it at a local computer shop.  Today I picked it up and brought it home much to Mom’s great delight.  I knew she wanted it set up as fast as possible.  BIG PROBLEM!  I don’t know whether it has anything to do with my autism or just an idiosyncrasy but when I buy something new it usually has to stay in the box for quite a while maybe even several months.  When I bought my first digital camera it stayed in the box for 4 months before i was able to tackle it.  A few years ago I bought a new easy chair.  It took 2 YEARS before I felt comfortable in it and saw it as really mine.  I recently bought a new land line phone system- actually 2 months ago.  It is still in the box.  So….. I came home with Mom’s laptop and I brought it up to her room.  she was eager to see it.  I must say it was all I could  muster to take it out of the box.  I was so anxious I had to leave and go downstairs for a couple of hours with a cup of tea and sit and try to calm myself down.  I know I am perfectly capable of setting this laptop up.  I have done many things on the computer like install  my own router etc but for some reason ( and I believe I am just too exhausted from looking after Mom to deal with one more thing that requires a lot of brain energy) I just feel I can’t set this laptop up.  I finally got up the nerve to talk to Mom and told her my predicament.  I told her I was going to phone Staples to have someone set it up for us.  The money spent on this was far less worry that the damage the anxiety was doing to my well-being.  Mom took it well especially when she realized how anxiety – provoking it was.  But I feel like a failure.  I know I could do this.  Why does my anxiety have to again interfere with what I want to do in life?   Now Mom will have to wait while I take it in to get set up and that will take a few days.  I wanted to do it for her tonight.  I know my autism gives me many positive things in life.  I have wonderful creativity and I can think outside of the box.  I am passionate about many things and I am hard working and honest.  My passion and focus helps me to look after my Mom when it can get very difficult.  I am determined.  I don’t give up easily.  But unfortunately, with my autism also comes some difficult things like extreme anxiety and idiosyncrasies that get in the way of normal life.  I have to learn to take the good with the bad and I say bad but I don’t mean that really.  They are all just parts of me that make me who i am.  So tonight a laptop got the better of me.  Maybe tomorrow I will have victory over something else in my life.  And so life goes on…..

 

Vignette #2 –    It’s tough looking after Mom.  It’s very tough.  So tough, I often feel like throwing in the towel and giving up.  It’s often when things are at their worst that God drops a gem of joy into my lap.  Just because.  Just because he loves me.  Just because I am his child and he cares about what I am going through.  Today was one of those days.  The last few days have been extremely difficult.  I have been worried about what the future holds for Mom and I and whether I will have to put her in a nursing home and if i don’t will I be able to still take care of her properly at home.  As I was going downtown to pick up Mom’s new laptop I was reading a children’s book on the life of Maud Lewis the famous Canadian folk art painter from the East Coast.  After I picked up the laptop, I was walking along the street and went to pass by an art gallery that I have passed by for years but have never gone in.  I love art and so I decided today was the day I was going to go in and see what they had.  I went in and was surrounded with some beautiful paintings.  Then I noticed a display of 2 paintings (prints not originals) of Maud Lewis’s.  Apparently there is an online auction to auction off 2 of her paintings.  I showed the owner of the store the book I had been reading on the way downtown.  Then he asked me a question that just about bowled me over.  He asked me if I wanted to see the originals!  Would I!!!!!  I was so excited.  He brought them out and I gently and gingerly held them and drank in the beautiful colours and scenes of the two paintings done by a little old crippled lady who for most of her life noone knew anything about her.  She lived in horrible poverty but painted such joyous paintings.  As I held her art work I wondered about what she thought about as she painted.  So today God did indeed drop a gem of joy into my lap, one I could never have imagined receiving.  God must have fun planning what he does for his children to bring joy into their lives.  In the vignette above my anxiety was so great and in this vignette my excitement was so great I had to take medication to calm myself down.  My life has ups and downs so steep that it takes my breathe away.  Sometimes I wish for more gently rolling hills of experiences but I take it all in stride.  My life is definitely not dull.

The Decision I Dread to Face

Yesterday evening as I sat  at the computer in my room, I heard a faint cry from my Mom calling my name.  I went to see what was up and found her down – halfway down on the floor of her bedroom and hanging onto the bed unable to get up.  My brain says, ” Time for hyper -vigilance again”.

As I see her struggle more and more with her mobility I know I must face THE DECISION.  Do I put her in a nursing home or do I continue to look after her at home? ( hopefully with added support).  We put Mom’s name on a list for a nursing home here in town almost a year ago.  They told us then it would probably be about 18 months until a bed was available.  Time is ticking.  I know one of these days I am going to get a phone call from the nursing home telling me they have a bed.  They don’t give you much time to make a decision and if I choose to say no to the bed I am penalized big time.  I go to the bottom of the list and that is after a 6 month waiting time when I can not apply to put her on a list.  What to do?  What to do?  I desperately want to look after her at home.  She desperately wants to stay here at home, her home.

As a kid, your parents have all the power.  They are the ones that make the decisions concerning your life.  Suddenly, I am in a position where I am no longer Mom’s kid.  I am her caregiver making crucial decisions about her life. The details of her life are in my hands.  I am suddenly the parent.

Me and decision-making don’t get along.  My autistic brain struggles terribly with decisions of any kind.  My brain hurts when I have to make a decision.  My brain often shuts down when I have to make a decision and then I go into procrastination mode.  When I think about it, it’s like a thousand mosquitoes buzzing around my head, each with a separate facet of the decision to be made.  They don’t stay still, they continually swoop around my head making it impossible to focus on the right decision to make.  Too many details swooping around,  too many options.  Why can’t it be something at least a bit simpler like do I have regular tea or decaf tea??

This is where my friends, family, church family come in.  I have to admit I need the help of others to sort out many of the decisions of my life.  And of course, in my case, my faith in my God helps me in my decision -making.  I have been praying passionately about this decision.  So far I have had no word except to have her stay at home with me.  So that is where I am at the moment.  But that moment is changing dramatically as her mobility continues to go downhill.

Today I sat down beside her in her sitting room and had a “Mom” to Mom talk with her.   “Mom”, I said, “I am doing everything in my power to keep you here at home with me”. You need to do your part too.  You need to do your exercises when the worker comes.  You need to get up out of your chair more than once in the morning and once in the afternoon to go to the bathroom.  You need to fight to keep your mobility because I don’t know what to do if you can’t get out of your chair or you can’t get to the bathroom.  I know the nursing home will be calling soon with a bed available.  What do I tell them??”

She listens, a demure look on her face.  Oh, how I love that face!  I love my Mom so much.  I want her here with me.  How do I do this?  She starts to get up out of her chair, commenting, “Well, I guess I had better go to the bathroom.”  Did she get what I was trying to tell her?   Does she understand the severity of it?  I think she does – at least for today.  By next week – not so sure.  Later in the day she asks for more water with ice cubes this time.  She never asks for water because she doesn’t like to drink – makes her pee and then that is another exhausting trip down the short hall to the bathroom and back to her beloved chair.  I know she is trying.

Shortly after having the mom talk with my mother, I went downstairs struggling with holding back the tears that wanted to come.  What am I going to do if I get that call?  Suddenly the phone rang and I panicked thinking what if that was the nursing home right now??  Instead it was God reaching down out of Heaven, aware of my anxiety and fear, and sending me his care.  On the phone was a dear worker from Hospice Kingston.  I have talked with her before and she is so kind and seems to just know what I am going through.  She was just making a monthly checkup call but what timing!!  I poured out my heart, my fears and she listened.  And she assured me that if I wanted to keep Mom at home even after she could no longer get to the bathroom etc.  there were ways to do it.  I would have to advocate for myself to secure more help.  I didn’t tell her how hard that is for me.  I didn’t tell her how nervous I am to talk to the coordinator on Mom’s case.  Another huge step out of my comfort zone but I will do anything for Mom.  I said I would make the call.  Another challenge.  This is so hard.  But I have to do it for Mom.

Decisions.  Advocating.  Not easy topics when you are autistic.  Just gotta try to focus on the one element that is the same in all this.  MOM.  And just continue to breathe…… as a dear friend keeps telling me.

Vignettes of Grace and Grief

I haven’t posted anything for about 3 weeks – far too long to be out of the loop of writing.  So much has been happening but I am having trouble getting it down in print.  So many nondescript things that don’t catagorize easily and that frustrates me.  Where to start, what to focus on.   So I decided for a while I may resort to just posting like my title says – small vignettes of living with my elderly Mom and the joys and heartbreaks that I encounter.

Vignette #1 – I got to see Mom experience some pure joy as she got to visit with the new twins my cousin’s daughter recently had.  A little boy and a girl.  Cute as buttons in their mickey mouse matching outfits.  You have to understand where my Mom is coming from.  She has had a fixation on twins her whole life.  Her brother and sister,  June and Bob were twins and ever since she has wanted twins of her own.  I was supposed to be twins, my brother was supposed to be twins.  Then when  she had no twins of her own she desperately hoped my brother or me would have twins.  Nope.  No such luck.  Mom’s fixation on twins was always present.  When I bought her books I always found books on twins.  ( or people with amnesia – that was her other fixation).  There has been no other twins in the family on either side till now.  And she is in her glory.  She calls them HER twins and beside her chair she keeps a pile of pictures I ran off of the twins with her when they came to visit.  She LOVES those pictures.  I listen to her lament daily about how she wishes she could have had twins.  Well, us on the autism spectrum all usually have our fixations, our interests.  Twins must be one of Mom’s.  It’s like her wish of a lifetime came true.  The look on her face as she held the twins was of pure joy.  It was very neat to see an 89 year old have her wish come true.  I hope when I am 89 I will still have wishes that come true.

Vignette #2 –  I got a nasty bonk on the head the other day and have been suffering from a concussion.  I have been on brain rest – no TV, no reading, no music, and no ( well, almost no) screen time.  It has been a tough go.  I have had a bad headache all this week and looking at this screen right now is certainly not helping things but I will write a little more.

I never had kids.  I have only really had myself to look after and I don’t do a very good job of that.  I am clumsy and always bruising something, cutting something.  I am terrible in the kitchen always nicking myself with a knife, or burning myself or stepping on the cat dishes and hurting my feet.  I sabotage myself as well.  Always have done this.  I will spoil a good thing happening.  I will be careless in safety issues around the house.  So when I got the concussion ( a huge conch shell fell off my shelf above my bed and hit me on the head – so what was a conch shell doing above my head where it could easily fall on me?  don’t know.  didn’t think about it.)

An accident like this, DOES make me think about things – like as I was sitting in the Emergency room I was terrified that I had done something that would hinder me looking after Mom.  Oh, yes, MOM!  She’s attached at the hip now.  I am responsible for her 24/7.  There’s no one else to do it.  Really makes you stop and think.  Makes you realize you have to be a responsible adult, one who takes care of themself so that they can take care of others.  New revelation!  I can’t be stupid, or selfish in my actions.  All my actions have a direct link back to Mom.  I am not my own person.  I’ve done a lot of thinking about this and am attempting to mend my ways.  I NEED to be safe for my Mom’s sake.  I guess I always knew this in the back of my consciousness but a direct hit to the head like I had literally brought the severity of this to the forefront of my life.

OK, I have to sign off now.  Headache is getting worse.  Will write some more vignettes very soon.  No more 3 weeks in between posts.

A Special Day

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

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

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

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

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

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

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

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

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

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

Guilt to Gratitude: The Happy Wanderer

Several weeks ago I came home from church to find Mom sitting in her easy chair with blood all over her and all over the carpet. She had fallen and hit her head and hurt her back.  That moment created some sort of paradigm shift in my existence.  Where before I had felt fairly comfortable leaving her to do errands and other outings, I now felt terrified to leave her even for a few minutes.

Suddenly, my world had caved in upon itself.  I was no longer free to come and go as I pleased.  This would be very difficult for anyone but for me with autism it was doubly difficult.  I am a wanderer.  I spend a lot of time wandering around town, whether it is to do groceries, to visit my favourite stores, to meet with friends at Tim Horton’s, to just go walking.  Wandering is a huge stress releaser for me.  As a young adult years ago when I was having severe problems,  I would find myself wandering in the middle of the night in my pyjamas around my neighbourhood – sometimes even in the middle of winter.  I would often run when things got tough.  I would run when things got scary.  I would run when I was overwhelmed.

Suddenly I was a prisoner in my own home.  Trying to set up respite was difficult and I could find noone to come in on the weekend.  That meant not going to church and being in the house for 2 whole days.  Just the thoughts of it made me squirreley.  The first weekend I spent at home I became deeply depressed and then I came down with very sore blisters in my mouth – surely a sign of stress.  After 2 weeks of this entrapment, I decided I could no longer do this as it was going to be the end of me.  Part of the problem was that when Mom fell, she declined to phone me ( I ALWAYS have my cell phone with me when I go out) and she didn’t push her lifeline button.  These were two safety nets Mom and I had set up to make sure she would be safe when I went out.  She had refused to use either one of them when she fell.  How could I trust her?  I had a long talk with her about the importance of using the safety nets we had set up and I told her that if she did not use them I could not leave her.  Now, she was also feeling trapped.  She did not like me hovering around her and particularly did not like being “babysat” as she put it.  After much discussion, we decided that we would go back to the way we had done things before she fell.  She would phone or push her button and I would leave her on her own for short periods of time.

Only there was one thing I did not count on – GUILT.   If I tried to leave her for a short period I felt an overwhelming sense of guilt that if she fell or something else happened it would be my fault.  I had to be aware of how she was at all times.  I soon realized that this guilt was partially my feeling that I had to have everything under control.  I could not walk in on a scene like I had that day after church.  Controlling every detail would prevent the extreme fear I had experienced that day or so I thought.  But trying to control every detail was impossible for one thing and for another it was not the way God wanted me to run my life.  By trying to control everything I was removing God from the equation of my life and that could equal disaster.  I wanted God back in His rightful spot – at the centre of my life with Him in first place, not my act of controlling.

I had to fight the guilt and control.  So I decided to take a trip to my favourite place – Value Village and NOT get someone to stay with Mom.  She would be on her own.  I stayed away 3 hours and they were the most anxious 3 hours I have experienced in years.  I almost passed out several times from the extreme anxiety of leaving Mom.  But I did it!!  And Mom was no worse for the wear.    Over the last week I have ventured out on my own several times leaving Mom alone.  Each time it gets a little easier but I have to commit her to God’s care and ask God to help me deal with my anxiety.

So I am free to wander again.  I am so full of gratitude for this privilege.  And that is how I look at it now.  It is indeed a privilege that at any time could be taken away again.  To feel like a caged animal in your own home is a frightening experience and not one I want to repeat.  I still feel trapped in the sense that I am bound to Mom for her care and well-being but I will deal with that as best I can.  That is just my life right now.  As long as I can wander I can experience some relief from the restraints that are on me at this time in my life.  And wander I will…..

My Apologies for no blog

I have not written a blog in almost 2 weeks.  It has been a very difficult 2 weeks where I have felt like I was literally drowning in my grief, my anxiety and my responsibilities.  I also came down with very painful mouth ulcers (blisters) that are probably a result of the stress I am under.  Thankfully they are mostly healed up now and although I still feel I am struggling in violent waves that continue to crash over me, my head is above water for the moment.  I am hoping to write a couple of blogs in the next few days.

Who is the Parent?? – Part 2

I had to come back to this topic and add a Part 2 because several of my friends objected to part of my blog and after thinking about it I have to agree wholeheartedly.  In my recent blog “Who is the Parent??”  I wrote, “I am only a custodial parent. A taking-care-of parent”  I was reminded that in taking care of my Mom I am much more than that.  I do not just take care of the everyday mundane things like meals, laundry, medication, trips to doctor’s offices etc etc.  No, I am really much more than that.  Not that I relish this role, it just comes with the job of looking after someone you love so much and someone you want the very best for.  Not only am I am “custodial parent”  but I am also the guardian of her emotional life, her psychological state.  I am the mother whisperer!  I am the soother when she is anxious,  or upset.  I am the one who sets each day out for her – telling her what will happen that day – what appointments we have, where i have to go, who is coming in to stay with her.  I often have to have what I call Mother-Mother talks with her when I have to go over what she needs to be able to do to stay at home with me – like drink her water, exercise, be able to get to the bathroom, etc etc.   I recently had to have a very heart to heart talk with her when she didn’t call me or push her life line button after she had fallen because she didn’t want to bother me.

Mom is very likely depressed although she would never admit it.  She is often despondent and talks about how she feels useless, and worthless.  She is in a lot of discomfort with the effects of the stroke she had many years ago that are now getting worse.  She often cries, moans, tells me she doesn’t want to be here.  It is at these times I have to step in like she used to do for me many years ago and try to instill hope, worth and love into her battered self.  It is not easy to watch her like this and I think back to the many years I struggled and what she must of felt and struggled with herself, as she only wanted the best for me, just like I want for her.

I am the encourager.  I bring her flowers either from the store or from my garden.  I bring or make her treats to encourage her to eat.  I watch movies, TV programs with her that I really don’t like to keep her company.  I listen, I hug, I tell jokes.  I buy her an new outfit.  I bring her a book she might like.  As she gets more and more frail it is becoming harder and harder to find things to bring meaning to her life.

Mom and I are connected very intricately.  Our emotions are all tangled up together like the many tentacles of two octopuses intertwined.  If I am upset about something, Mom gets upset.  If Mom is upset, I get upset.  We set each other off, alarm bells ringing.   If I am upset about something I have to be so careful not to let her know.  Thank goodness for my “girlcave” in the basement where I can go and cry and scream and pray and Mom cannot come or hear me.  It is truly my sanctuary, my place of refuge where I crawl into my yellow easy chair and imagine I am in the arms of God.  There is a song I often listen to  by a christian music group called Casting Crowns.  It is called “Just Be Held”.  It is a call by God to just come and be held when times are overwhelming and too hard to bear.

During this time of being an emotional support to Mom I have to try very hard to take a step back and not be intertwined with her.  I need to be separate in order to relate to her in a way  that  does not bring in  past hurts, anger, disappointment etc.  This is difficult because it is so easy to fall back into old patterns and old feelings.  For me that time has to be set aside and I need to focus on what Mom needs in a pure and simple way.  In the three years Mom has been with me,  God has healed many of those hurts, anger and disappointments.  They have not entirely disappeared but it’s like there is a glass wall up between them and my present relationship with my Mom.  Her sharp comments, her occasional hurtful words do not have the same effect on me anymore.  I can only say that this is healing from God and I am so thankful for this.  To know that when Mom passes on, I will have no regrets is truly a priceless gift from God.

So yes, I am much more than a “custodial parent” to my Mom.  I am her encourager, her soother, her comforter, her reassurance, her security, her needs filler, her information giver, her window on the world, really, I AM her world….

……..just like when I was little she was MY world.  And the wheels of life keep turnin’.