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.

Who is the Parent??

“The son (daughter) went to his mother.

He picked her up and rocked her

back and forth, back and forth,

back and forth.

And he (she) sang this song:

I’ll love you forever,

I’ll like you for always,

As long as I’m living

my Mommy you’ll be.

This picture and quote is from Robert Munsch’s book, “Love You Forever”  (words in brackets are mine).

I’ve always thought this book was very profound but did not imagine that I would be living this book.  No, I am not actually rocking my Mom on my lap but as she gets sicker and weaker the roles have become less defined, much more blurred and obscure.  They are not black and white like I thrive on.  They are in some very uncomfortable grey area that I am struggling to deal with.  The last 3 years that Mom has lived with me I have slowly been taking on more and more of her care.  She used to make her own lunches, she used to do my dishes every evening, she used to go shopping with me.  Now she hardly eats, she lives basically on Glucerna – a meal replacement drink.  She doesn’t go downstairs now so the dishwasher she bought me does the dishes or Sandra our respite lady kindly keeps my kitchen clean.  Mom does not leave her little abode upstairs in my house.  She shuffles from her bedroom to her sitting room to the bathroom – back and forth between the three.  Everyone comes to her now.  Foot care, hair dressing, nurse, bloodwork etc etc.  Mom’s life has shriveled down to a very small world.  This past week she fell twice.  Now my world has suddenly become much smaller as well.  I do not leave her unattended anymore.  No more wandering for me.  I spend much time at my home rocking in my chair downstairs as she rocks away in her chair upstairs.  She sleeps a lot,  I am exhausted and I sleep a lot.  I do basically everything for her now.  I help her dress, I get her meals, I do her finances, I dole out her pills, I clean her clothes – every aspect of her care is in my hands.  Without me she is helpless.  She has been getting much weaker and after she fell this week she needed help getting into bed.  So every night I help her into bed, tuck her in and smother her with kisses and tell her I love her.  There is something wrong with this picture.  This picture does not compute in my brain.  Aren’t I the daughter??  Aren’t I the one that was tucked into bed every night?? I find this the strangest part of my taking care of her yet.  I can’t quite wrap my head around it.  Is this still my Mom?  Is she still in this frail, failing body?  I’m not used to being a parent.  I have never had kids of my own.  I don’t know what a parent feels like.  I don’t want to be a parent.  I want my MOM!  I want a parent.  I don’t want to be an orphan.  I want someone to rely on.  I want someone to look after me.  It is so comforting even when I object to what she is  saying when she tells me off.  She will tell me “Don’t buy anymore clothes.  You have too many clothes”  She will still offer advice like when she gives me ideas for my Summer Reading Program I am doing at my church.  And when I bought a really way out pair of boots she jokingly exclaimed “Are you really my daughter??”  Moments, glimpses, that is all I have now.  I have my Mom in moments and I see her in glimpses.  Like glancing sideways in a mirror.  Another way of looking at it.  A shadow.  There but not there.  For me as a parent it’s more like hours, days, weeks – not moments.  I am parent almost all the time.  But you know,  I am only a custodial parent.  A taking-care-of parent.  Mom bore me 58 years ago now.  My parenting is just a moment in the time-line of our life together.  No matter how hard this is to comprehend and accept I KNOW that this little shriveled up lady who struggles to even take one step in front of the other is STILL my MOM.  Will ALWAYS be my MOM.  And so as it is almost time to tuck her into bed for another night I repeat the words of Robert Munsch,

I’ll love you forever,

I’ll like you for always,

As long as I’m living

my Mommy you’ll be.          ( Goodnight Mommy, I love you! xxoo)