one month

there are moments when I think she is still here.  I get up and start to plan my day remembering that I need to go and see her and then I realize that she is not there anymore.

routine is a funny thing.  for some routine is what keeps them going, keeps them breathing and reassures them that they are good.  if that routine is disrupted you are left with an aching to find that new routine, new direction, new purpose I guess.  you start the lists of things to do and proudly check them off one by one as they are completed.  for me the checking off makes me feel like I have accomplished something.  I know, I know that is what the list is all about, but really it is an exercise that I do daily and when I check something off I feel better.  I feel like I contributed to something.  it's part of my routine.

in her final week mom's routine and ours became dictated by her, her care givers and each other.  when the decision was made to begin end of life care none of us wanted to leave her side.  we wanted her to know that she was loved and we were here by her side and to not be afraid and we are taking good care of you mom.  we are not going to leave you alone mom.

one of the most important things was to insure that she was not in pain at any time.  they would have her pain meds coming every six hours and then every two hours if needed a smaller dose.  what would happen though is that we could see her start to curl her toes, knees to her chest in a fetal position and she would start lifting her arm up.  I could feel her getting agitated and restless and so we would stay and demand the extra shot every two hours before she started getting restless.  I would ask the nurse if they thought she was in pain.  no, no, do not worry she is not in any pain.  I found it hard to believe them and asked that the doses be closer together without me continually having to demand it.  

those final days and nights had us all worrying and fretting about each other.  did you eat something for breakfast dad?  yeah.  are you going to get some lunch now?  I'm here, you go, I'll stay here till you get back.  did you sleep last night?  I'm coming back now, did you need anything?  the nights had their own routine.  every two hours they would come in and flip her position.  sometimes they would wash her and change her gown.  then the injections and sometimes they were just coming by to see how she was doing.  how was I holding up.

It was hard to sleep while all I could hear was the hum of the oxygen machine.  it was so hot in that room.  there was a fan on the counter and one on the floor.  the window was open but there was no breeze.  her roommate snored loudly and there I lay in the middle not believing what I was living through.  not knowing if I just shut my eyes for a moment if she would be gone when I woke up again.

whenever they came in to change her position I would leave the room.  I headed outside for some fresh air and just to enjoy the quietness of the early morning.  I would return and she would be wrapped up like a newborn baby.  I would start to peel back the layers and lean to give her a kiss.  I'm here mama.  it's nadia.  I love you.  those first few days her breathing was smooth and it seemed like she was finally resting comfortably.  as the days went on and her speech began to fail her she became frustrated.  she would gather all her strength to say "I love you too honey".  when my dad would bend down to give her a kiss she would struggle but pucker up and give him one back.  it was heart breaking and beautiful all at the same time.  the love those two shared was an incredible gift that I was able to witness time and time again.  what an example they gave me of what true love looks like.

the last couple of days she was unable to speak at all.  her eyes wide open and her mouth as well.  I kept holding on to the belief that she could still hear us.  she knew we were here and we gathered around telling her we loved her and it was okay to go.  we will be fine mama.  I will make sure dad is fine.  I will take care of him.  go, mama, rest, it's ok.  we all said good bye.  we all gave her permission to die and yet she was still hanging on.

the final day before she died was the hardest of all.  I felt like I was pushing her to die.  it was an awful feeling.  doubts flooded into my head.  what if someone made a mistake?  what if she wanted to tell us something but couldn't?  what was she waiting for?  I thought she was hanging on for dad.  their love so strong.  their bond tight.  I couldn't imagine how it felt to know that the one you loved so deeply was about to leave you and you would never be able to hold them again, kiss them, touch them.  michael sensed fear when he was by her side.  I thought maybe he was right.  maybe she was afraid of what was next.  the unknown.

they finally moved her to a private room.  there was a beautiful breeze coming through the window.  lots of room for us to pile in and comfort each other.  we talked about memories and laughed about some of the silly things she had done.  we replayed the mass for her on the tiny tape recorder my dad had brought in.  it was recorded in italy where my nonna lived.  an outdoor mass that they gathered for annually to praise the madonna of water.  there was one part where mom's voice came on.  she was saying good bye to someone.  her old voice.  so clear and so full of life.  it was eerie to hear her like that after so long.

michael sent me home for the night.  after days of sleeping there he wanted me to have a good rest in my own bed.  I didn't want to leave her but I knew it was all catching up to me.  I needed to rest.  I needed to refuel for the next day, the next night, the next...

then the call came early in the morning that she was gone.  michael had woken up and went to check her and she was gone.  the nurse was called and she said she had just checked her a few minutes earlier and she was fine.  she was gone.  I called dad.  I got in the car.  I thanked god for ending the suffering and for it being early enough that the roads were bare and that the rest of the residents would still be sleeping.  we were able to see her without any disturbances of the breakfast crowd or staff flying around.  it was quiet.  she was at peace.  she was finally at peace.

many hours were spent by her bed writing in my journal.  I felt this urgency to get it all down before I forgot it.  I practically filled it by the time she was gone.  memories of her as a child, her as a wife and as my mother and nonna to dan.  stories she had told me and details I didn't want to forget.  it became an invaluable tool when I went to compose the eulogy.

writing also kept me busy.  I was focusing on the words as they flowed out of my pen.  what was happening to her with each passing minute was in my eyes a suffering that no one should have to endure.  what we watched as she slowly faded away was what I feel no one should have to witness.

the pain is still fresh.  the picture in my head of her laying there still clear.  I keep having dreams of her healthy and running around again.  life goes on and time will pass and so too shall the awful images.  I feel like my dreams are willing me to remember the young vibrant woman that she once was.  I feel her with me whenever I think of her and as I start to rebuild a new routine I feel her guiding me.  thank you mama.  thank you for always have been there to guide me.  fly bird fly.

for mama

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.

it's friday!

and you know what that means! time for a fluoroscopic swallow test! okay not for me, but for ma. oh mama! we had quite a scare with her over a month ago when she choked on a piece of honeydew melon. heimlich and all! we had a meeting with the team this week and wanted to make sure we are meeting her needs when it comes to food. ha! this makes me chuckle cause mom is a foodie. she has always loved food and could eat you under the table all the while weighing just over a hundred pounds soaking wet. she has been on a thickened diet now since october and hates it!

so the whole fam damily loads into the truck and I am handed the keys. WTF? ok, fine I will drive the 21 year old truck and watch people drop as I kill them with the fumes. fun, fun! the whole ride there dad is complaining. about what? I'm not sure. I stopped listening after the third "jesus christ" was dropped. mom meets with the technicians and answers questions and also offers up that she was told she could eat kentucky fried chicken with gravy after the last exam and she still hasn't had it, but she doesn't like gravy but the chicken would be good and maybe some fries too, but no gravy cause I don't like it. poor thing. all she wants is the friggin chicken that I remember from my childhood.

after church on sundays if mom had a coupon we would stop at kfc and pick up a bucket. no fries (she made those at home), no salads, no buns - just chicken. that crispy grease laden deep fried goodness was our one take out meal long before mcdonald's came to town. fast forward to my weight watchers beginning where I gave it up completely because it wasn't worth the points. then I end up working next door to a kentucky fried chicken and proceed to barf at each shift from the smell. even now the mere smell of it makes my stomach turn. come to think of it chicken in general makes me hurl.

so we are on our way back and mom mentions the chicken again. dad is still bitchin' about something. I think this time it was why did we have to wait afterwards for this.....blah, blah, blah.

so I says "ma, do you want some chicken?" she says "oh sure". so I tell her I will stop and get her some. she asks if there is a kentucky fried chicken on the way back. well, of course there is mom and if there isn't I will find one! I'm on a mission mama! meanwhile I catch the tail end of dad's latest rant and it surrounds the chicken and me trying to kill my mother. whoa? what? and then I'm done. I start to tell him that he can be miserable or he can be happy. it's a choice. choose wisely I tell him! I tell him that if he chooses to be miserable and bitch and complain then everyone is miserable. look at mom! she is smiling. happy! the chicken chase may or may not have had something to do with her smile, but still! she says she wants the chicken and if she chokes, let her die. amen mama! at least she went with chicken in her belly and a smile on her face!

and yet as I pull into the kfc parking lot with dad's voice in one ear and mom beaming in the front seat, I'm proud of myself. I took a little piece of shit and chucked it in the trash. got rid of the awful smell of sucky and turned it into a sweet smell of cheer. go me! I walked into kfc and ordered mama up some chicken and fries (no gravy) and did it with a smile on my face and a little bit of gurgle in my tummy. oh the smell was awful ain't gonna lie, but I NEEDED to do this for HER. back at the car and her lips were smacking and she was already to roll up her sleeves and have a chicken feast right there in the car. whoa mama! wait till we get back to the home.

so why this turn of of emotion? why feel so crappy and useless one day and then the other day I am a patient, kind and gentle chicken grabbing peach? I am gonna thank the art for that. this morning I went a little crazy with pitbull in my ears and paint on my hands. I played with no plan. just getting messy before dealing with the mess of my parents and my life. it was good. I need to remember that I should do this before every appointment with them. get it out and then get on with it.

I have to admit though that I think I can still smell that damn chicken on my shirt, jacket and scarf. but it was all worth the smile on mama's face when she was chomping down the chicken and fries. and dad? well, sent him home with the left overs and a kiss. gotta love him!

and if you happened to listen to the music link I betcha you couldn't resist dancing! weeeeeeeee! my girl got a big ole bootie, your girl got a little ole bootie, la la la la....

my oh my mama

this pic of mom from last night after we laughed, smiled and talked about what is to come. she is aware now that she is not going home. she is not happy about that and I believe that she still thinks that if she can walk better and eat regular food that she could still go home.

we delayed our trip yesterday until the errands were done. sometimes I feel like I am rushing out of there to get to where I need to go next so it was a great change of pace. she was in bed when we got there and ready to get up and go for a walk.

she started to tell us how the next door neighbour brought dad a cherry pie and how she loves pie. what is your favourite pie mom? oh, any pie! she used to make pies and would give us each a piece and pretty much polish off the rest herself. she has a sweet tooth and I am not sure that the "thick diet" includes much sweets.

so we are working at getting her out of the bed, house coat on, shoes on when I said would you like me to bring you some pie? would you like that mom? her response? fucking right! oh yeah! well we howled and finally got her out of bed. and it didn't end there. she kept on talking about how she wanted to see the doctor and ask for a day pass. your father, she said, is not attending mass without me and I need to make sure he goes to church. maybe I could call the home care office and see if there was someone that could take care of her at home? oh but don't call that home care worker cause she is a liar! oh my!

we made our way back to the unit and her supper had arrived so we fed her in the common area. a bit brighter and more room for all. she had a lovely dish of mushed turkey, mashed potatoes and minced peas and carrots with gravy. every spoon I filled for her I swallowed hard. oh I just barely kept it together. trying to make it SO appetizing for her. there is cranberry sauce mom! wanna try some of that on your turkey? bluck! tastes like jam she says. why would you put jam on your turkey. oh I said just a little bit of sweetness. no, no, no she said waving her arms around. how about some of this yummy rice pudding? a couple of spoons of that and then some thickened water to wash it down. oh my she looked just as disgusted as I felt. she barely ate a thing, but then when she was done I started to entertain her with my walker skills.

I used the walker as a seat to feed her and boy that thing has some power! I shuffled to one side of the hall and then back over to her where I twirled and smiled as I passed her. she laughed. what the hell are you doing she said? you are going to hurt yourself! well, if I do I am in the right place, right mom? and so I continued on back and forth zooming and twirling and making her laugh.

pretty soon she was tired and ready to get back to bed. she's hanging in there and I think that she is having more good days than bad. it's not the best of times right now, but we need to get through it. one day at a time and if laughing, smiling and swearing are gonna get us there then so be it!

change of seasons

the seasons of change are in full swing at the beach home. the air is crisp and during my morning walk with the pups my feet were cold. it is time to start thinking about socks - yuck! I am trying to soak up the last few days of warmth. the summer went by in a flash and was filled with so much change. I guess I foolishly believed that once we were "settled" that things would start to slow down and we would fall into a new routine. ah, but life has a way of keeping you on your toes and challenging you at every turn, turn, turn.

I started the day off slow. I've been rushing around far too much. some days I feel like a robot. I go through the motions and when I finally get that tiny bit of time I quickly fill it up. what was it like to have those moments of calm, quiet and thought? so this morning I chose to give it to myself. ease slowly into the day. no rush. everything will still be there when I get there, when I get to it, when I fix it. a hot bowl of oatmeal, fresh air and the beautiful colour filled sky are mine to savour before I need to put myself together and face the day.

I shared last night with a group of creatives. it was wonderful to sit and brain storm. to hug and laugh. to eat good food at a snails pace if you wish. I felt the little flutter in my belly. that fire that has been burning low. the warmth starting to get me going. was this just what I needed to get into the studio and start playing again? I am holding it close to my heart and although there is a part of me that wants to plan for time and gather supplies and start sketching ideas there is the other part of me that says "let it go". it will come. it will happen.

how do we release into it? how do we let go of the control we SO seem to WANT? how do we accept that it will happen? - IT WILL!

I am having the same thoughts and feelings for my mom. after an exhausting weekend of trying to get her to eat and drink and her not sleeping and watching my dad fall apart in front of my eyes it was decided to take her back to the hospital. she is now awaiting placement in long term care.

as I write that last sentence tears come to my eyes. what will become of our family? will the changes be good. I have to believe that we have made the right decision although it all seems so final.

I have no idea what is to come. I am asking as many questions as possible. I am being patient with mom's repeated requests of water and ice. I scoop up the thick juice and ask her to please take it. I don't know how much of it she understands. a maze of doctors, nurses and therapists with questions, concerns and care plans. I feel this responsibility to take care of her, protect her, fight for her. were these same feelings present in her when I was a child? I struggle to let go and let it happen.

I look into the mirror and remind myself that I need to take care of me too. I need to protect myself and fight for myself. it is like stepping into a new role. so many changes and while in the centre of this whirlwind I am grateful for these quiet moments where the only thing that is changing is my foot position on the stool.

might as well be mayonnaise in a tube...

after all these years of trying diet after diet to reduce my junk in the trunk I think I finally found THE DIET to end all diets. I'm pretty sure I nailed it and I look forward to seeing you all at the book signing.

ok, let's get serious here shall we? get your pencils out and take some notes! first you have your mother sent home from the hospital against your will. she is put on a "thick" diet which means everything she eats needs to have a pudding like consistency to it. second you team that up with a fragile father (got one of those?). third you tie it all up in a bow and voila you have three very unhappy italians.

the first italian being the mama who could eat an elephant under the table. this woman has always had a roaring appetite, lick the plate clean syndrome and no leftovers policy. she adds mayonnaise to everything! green beans, eggs, potatoes, and has a funny story of craving it when she was pregnant with me. of course she has nothing to show for it! she has never had a weight problem and was quick to point that out to me on several occasions (refer back to the first sentence). now she can only have minced mountains of food and thick liquids. yup! water, coffee and tea all need to be thickened.

second italian being my father who was convinced that he could take her home and do it all! he loves this woman to pieces and the mere thought of dropping her off at a nursing home shames him. he is not that savvy in the kitchen. he likes kinchucky (his words not mine) fried chicken and caesars pizza as a quick meal. for breakfast he stands at the kitchen sink with knife in hand cutting bread, salami and cheese and having a few quick bites before she beckons for him. late last night he admitted that he could not do this anymore. hallelujah!

third italian being me. I agreed with the doctors and wanted her relocated, but my parents declined. it is what it is and we need to get through this. I am a vegetarian and the sight, smell, touch and taste of meat makes my stomach twirl. come to think of it many things make my stomach twirl. heavy perfume, dog puke and changing a babies diapers to name a few.

and so I depart this morning with starbucks and vita mix in hand determined to make my parents life easier. what in the hell was I thinking? we started off with rice a roni - the san francisco treat! it was in the cupboard and seemed like something that would have some taste to it. pair that with some lovely pureed green beans and I was still holding down the chai. then the canned salmon was opened and ooohh little throw up in my mouth. then the ragu with pasta. still okay, but then the chicken was cooking in the pan and the salmon was sitting on the counter and the green beans looked like something that came out of my dogs butt the other day and the rice a roni was cooling. too many smells! dad dug into the pasta. good thing cause he probably skipped his kitchen sink breakfast this morning. mom was up and starving for food and attention so I served her up some salmon, rice a roni and green beans. looked good enough? then she yelled for water. I mixed her up some thick water. she said we were trying to kill her. she told us the doctors were crazy. I started spoon feeding her to get some of it into her and because it also had her meds crushed up in in it. she yelled "vaffanculo". do I need to translate? my mother sat there and had the balls to tell me to fuck off.

I was done. I went outside and took a few breaths and then I started laughing. I had to keep it together cause I know that inside my father was trying his best to calm her down and explain to her that we are not trying to kill her. yay for me that I can add that to the memories of my mother. I knew that someday soon it was coming, but I never thought she would actually say it to my face. so I go back inside and tell her that this is what the doctors ordered. she can have thick water or she can have nothing. she started with the hand wave and you guys are all crazy and I just want a sip of water for christ's sake! broke my heart. we gave her about a tablespoon in a glass and told her to savour it cause that's all she was getting. and so the stomach turns...

I should have offered her some mayonnaise. it does have a pudding like consistency to it!

thank you tuesday...

Stand By Me | Playing For Change | Song Around The World from Concord Music Group on Vimeo.

this song brought me to tears today. back from a visit with mom. she is back in the hospital. she fell again and hit her head and now they are trying to get the inflammation down and take care of the pain. tests and more tests. change of meds.

I go and visit her everyday. I think if I miss a day and something happens I would feel awful. she is so confused right now that she doesn't remember who visits her. then she will have a memory and it is like she is back. I am not sure if it is the fall that caused this recent confusion or if her dementia is setting in. I do know that I am scared. I just want to make it all better for her. I bring her flowers to brighten her room. she always said fresh flowers are a waste of money - they die. I brought her a piece of black forest cake - one of her favourites. she couldn't see it. she took her spoon down to the cake and missed it completely. I wanted to cry right then and there. I wanted to yell at her - MOM!!!! the cake is right in front of you. stop this! get it together! come back! I don't think I could bear going to visit her and her not know who I am. to have her reach out for me and not know me? so much of her is gone. studies say she may also lose her speech, her sight and her ability to swallow. I spoon fed her the cake. I swallowed hard as I choked back the tears. it kills me to see her slowly fade away...

I have no idea what the future holds for her, for us, for anyone, but today I am thankful. I am thankful that she is still here. I am thankful that my dad is getting a break. I am thankful for my amazing husband who is trying so hard to take some of my stress away. I am thankful for my wonderful son who with his hugs, his smile and his beautiful music makes me want to be here. I am thankful for all my family and friends who each in their own special way know just what to say and do. it is a hard day, but it will not be my last day. I am not alone with all of these people standing by me...