most recent picture of mom may 17, 2012

it's early monday morning.  I can hear the beep beep sounds of the construction trucks starting their day.  the phone rings and it is dad.  he is wondering if we can do anything about mom's hair colour.  I cringe.  I know that this is something that I will have to figure out.  one more thing to try to "fix".  I'm the one to call and I am the one to succeed or fail.  I am the one making the decisions.  I am the go to girl.  this used to be mom's job.  she was good at it.  she kept everything and everybody in their place and she always had a place for everything and everybody in her life.  she did it effortlessly.  we used to call her the energizer bunny.  go, go, go.  you couldn't keep up.  I am not good at it.  it's funny cause I am a leo and leo's are known for leading.  I will stand by you and support you.  I will cheer you on from the sidelines, but please don't put me front and centre and ask me if I think we should go with a feeding tube or not.  yes, I am not good at it, but I'm doing it.  I'm learning and I am trying.  I am clear on what I decide and I go with my gut.  I could do more, sure, couldn't anyone?  some people say I should do more.  I should be there all the time.  I should have kept her home.  I should have hired round the clock nurses.  some people say I am doing great.  I need to take time for me and not feel guilty about it.  I will go crazy if I am there all the time.  and some people need to understand that my shoes don't fit them.  "walk a mile in my shoes..."  really?  cause last time I checked I was walking in my shoes and I don't have the same size as you.  your life is not mine and although I can understand - I simply cannot know it all.  which reminds me...I need to get the summer shoes out.

mom spent mother's day in the hospital with severe dehydration, two serious urinary tract infections and I thought for sure it was the end.  I sat by her hospital bed wondering who to call.  the priest?  final rites?  my dad?  it was late at night and as the hours passed they began to treat her and run tests.  I felt helpless and very small.  I needed to step aside and let the doctors and nurses do what needed to be done.  she was admitted to hospital and although her speech returned she was unable to feed herself or get up at all.  since her return to long term care she has been bed ridden except to get her in the wheelchair for meals.  meals which consist of a meal replacement drink and mushed up groceries.  she has no energy.  her arms and hands lay on top of her legs unable to move.  her speech is weaker.  she talks very slow and very quietly.  sometimes I can make out what she says and other times I just say "yes, mom".  oh but her mind is good despite the doctors saying she has dementia.  she is hanging on by a thread.  for me it is a waiting game.  this whole process has been a game of sorts.  I am one of the pieces on the board.  I think of the service, the readings, the prayer cards, the people, the eulogy.  I feel ready.  I feel at peace and I don't want her to suffer anymore.  three years ago when she began to lose her independence is when she would have wanted to die.  she never would have wanted any of this.

my father is the other piece and he wants her hair coloured.  he wants her to gain weight.  he wants her to move.  he wants some resemblance of "his" maria back.  he too hangs on by a thread.  he's not eating enough.  he is not sleeping well.  he is in pain all the time.  he is grouchy and will get himself all twisted up if one of her nightgowns goes missing.

we asked him to join us for lunch/dinner yesterday to spend some time outside of the facility and he declined.  I was crushed.  my father did not want to spend father's day with his daughter.  I baked him chocolate chip cookies and gave him a card.  he asked why so many cookies.  who is going to eat all these cookies?  I don't give a shit who eats the cookies.  I am just trying to remind you that you are loved and you are not alone.  dan tried to bargain with my dad when he offered him a cookie.  I'll eat one nonno if you eat one.  good job dan.  there ya go.  but dad said no.  he just ate and he didn't want to upset his stomach.  oh, so you ate?  like "lunch"?  like where "we" just came from?  I need to let it go.

people tell me to be patient with him.  to not take it personally.  he is fragile and depressed.  yes, I know that.  I do.  I understand that, but when that little tiny voice inside me just wants my dad; well, I guess it is the same thing.  I want my "dad" like he wants his "maria".  I want the dad who would jump on his bike and we would ride for hours together around the neighbourhood.  I want the dad who would let me pick up the hammer and hit the nail into the wood and make stuff.  I want the dad who sat beside me while I learned how to drive a stick in the middle of a field.  I want the dad who would cut the grass with dan and his play lawn mower right next to each other.

michael tries to hold us altogether.  he tries to keep tabs on dad,  comfort mom who loves talking to him and keep me from running out the door.  he plans get aways to keep sane and allow me to recharge.

we are all pieces in this game.  there are moves to be made, but everyone is sitting there trying to not do the wrong thing.  none of us know what the right thing is.  we all try different things to keep us afloat, but realistically we are the small child in church clasping their hands together really tight so as not to squirm.  none us want the other to suffer.  none of us wants to do the wrong thing and upset the other.  

there are crumbs in my freezer drawer and that is bothering me.  I was upset yesterday when I realized he bought small garbage bags instead of large.  I tried to help by moving the car out of the garage, but he parked so damn close to the side that I had to forward and backwards a million times.  why does he do that?  these are the things that roam around my head keeping me up at night.  the serious stuff and then the stuff that just doesn't really matter.  crumbs in the freezer?  who is going to see that, but me? 

the thing is it's not about the crumbs, the bags or the car.  we are all just trying to hang on to something or we are trying to get something back. we have lost our leader and we are all trying to find our new place.  we are shuffling around like the pieces on the game board.  roll the dice; woo!  move two spaces forward and pick a card!  my heart goes out to everyone who has been here or is there now.  you are not alone and you will make it through.  you will.


Nancy said...

I have no words that will truly help... I just wanted you to have a {{hug}} from an old friend... you are an amazing daughter, doing what you *CAN* for your Mom.... I wish it could all be different for you... there is nothing worse than that helpless feeling....

debra said...

I agree with Nancy! You are an amazing daughter and you are doing all you can the best you know how. Hang in there, honey! Love you and always here to help with whatever you need, you only need to ask!

Jenny said...

You are loved. You are enough. xxooxx

Mary said...

I have been in your place; while my mother is now gone, I believe she was much like yours and didn't want to be where she was.

I wish you and your family well as this journey continues.