There are so many things to miss

I'm often asked what I miss the most about mom.  I know that sounds like she's already gone and in a way she is.  There are so many things to miss and the list is long but I can narrow it down to two things that I miss the most.
I honestly believed that my mom would be on the other end of the phone until the end of eternity.  Some people like to sit and watch TV but my mom liked to sit and talk on the phone.  She thought that cordless phones were best invention ever as then she could walk around the house and even go to the bathroom, while on the phone.
When I was young, mom had a routine.  After dinner was done and us kids had tidied up she would move a chair over to the phone and start calling.  Her calls were information seeking (gossip).  If she heard a rumour or even a whisper of a rumour, she was determined to get to the bottom of it, she just had to know.   So, she would call her circle of friends and under the guise of wanting a recipe or bitching about us kids and dad, she would skillfully extract information from them.  Let's say mom had heard that Bob and Linda were having marriage problems.  She would never come out and say "Sylvia, I heard Bob and Linda are having troubles in the marriage".  No, mom was like a spy she would say "Sylvia, I saw Linda today at Marra's and she seemed so sad, I hope she's not sick".  The person at the other end of the line didn't want my mom to get the wrong idea so if they had the information, they would divulge it and mom got her confirmation.  If they didn't have an answer, mom would wrap of the conversation with the usual "Well, I should let you go, I'm sure you have things to do," and that was that.  Then she would call someone else and try again to solicit information.  Really, she had gossipping down to a science. 
When I moved away from home mom would call me at least twice a day, in the morning before she left for work and in the evening.  If I wasn't home to answer the evening call, she'd call and call and call and call and call until I answered.  She would never leave a message but often I could hear remnants of a message in her commentary she would say to herself like "Really, where is she?" or the always popular big SIGH of frustration.  Sometimes just to piss her off I wouldn't call back and I would leave it until the following morning when she would call and not even say hello before reaming me out for not calling her back.  It was too funny.
When the dementia started to set in, mom would call me and everybody in her address book at least a half a dozen times a day.  Many of the calls I wouldn't answer because I had just talked to her maybe an hour earlier.  However now, I miss those calls.  I miss hearing that blueberries are on sale at Safeway and she'll get dad to go to the store so she can make muffins or that she just saw on CBC that bomb went off in the Gaza and how terrible that is.  I miss the sound of her voice on the other end of the phone.

The other thing I miss and most caregivers of dementia patients miss it too, is mom's smile.  It's a sad symptom of dementia as not only do they lose emotions and feelings but they lose control of the muscles that are needed to smile.  Dementia patients have a very blank, emotionless look over their face and it's sad to see and even sadder to see in my mother.  Mom had a big, tooth shining smile and her big brown eyes would light up with joy.  You could tell when mom was happy, she couldn't hide it and her smile would say it all and mom smiled a lot.  Mom wasn't a woman who gave a lot of praise in the form of words.  To this day I've never heard "Lisa-Marie, I'm proud of you," but then I don't need to.  I don't need to because mom was always there at any function or school awards day and her smile would say it all.  She smiles on the inside now and I can see it because it shines through.

The Dementia Diary: It tastes just like mother's

The Dementia Diary: It tastes just like mother's: My mother didn't teach me to cook.  Mom didn't like cooking.  Cooking to her was a duty that was performed only to ensure that your family a...

It tastes just like mother's

My mother didn't teach me to cook.  Mom didn't like cooking.  Cooking to her was a duty that was performed only to ensure that your family ate.  It was a chore she really didn't like but performed daily.  Like most mother's of the time, the crock pot and anything of convienence set the meals.  So, our cupboard had plenty of Hamburger Helper, Count Chocula, Tang and any vegetable that the Jolly Green Giant could put in a can.  Crock pot roast beef, crock pot stew, crock pot chilie, crock pot chicken etc, etc.  My mom would put anything and everything into a crock pot.  We never complained because she drilled it in to us that if someone takes the time to cook a meal, then you shut up, eat it and never complain.  We never did.  But I would often think that she really isn't cooking, the crock pot did the cooking and the vegetables were out of a can and one of the after school chores was to peel the potatoes, so I never really understood her 'cooking' mentality.  
Making pies was different.  Making pies was an art form to my mother and she loved it.  Because she loved making pies, she made the most incredible pies.  Her homemade lemon meringue (never from a box of convenience), Saskatoon berry or raspberry peach or just plain apple, it didn't matter, they were heaven to eat.  I don't think her recipe was handed down to her as my grandmother made incredible bread but I don't remember her pies being as tasty as my mom's.  Mom never made just one pie.  Pie making was a full day's event done a couple times a year, depending on the fruits in season and she would make at least a dozen pies, even more, per session.  Her recipe was never written down and I was told, at a very young age, to watch and learn.  I never did and there were countless numbers of pie making sessions.  I have tried many times over the years to master her secret recipe and I never did.  I would phone and ask her for the recipe and she would always answer the same, "Lisa-marie, there is no recipe and I've shown you hundreds of times to touch and taste it".  The problem is I never knew her touch or her taste while making the crust, only that the finished product was the flakiest, tastiest pie crust ever created on God's green earth.
It wasn't only the pie crust, but the fillings too.   Her apple pie filling was thick and chunky and not too sweet.  Any filling with berries or cherries was never runny or messy and again, always thick.  The homemade lemon filling was never too tart or too sweet and was absolutely refreshing on the palate. Even her meat pies were incredible.  The crust would always hold the meat and together in, they never fell apart and again simply wonderful to eat.
So, determined to make a pie just like mom's pie I first combed through all of her recipe boxes, hoping it was written somewhere.  After two days of looking, it wasn't there.  I meditate daily for 10 minutes after yoga.  Normally I meditate to clear my mind and keep it clear.  Today, my mantra was pie crust.  I meditated for a long time and went back 15 years to the last time mom and I made pie together.  I visualized every step of the crust and every step of the apple filling and when I came out of my trance, I jumped up and wrote everything that I saw in my mind down on a piece of paper.  Then I went to Safeway, bought what I thought I needed and went back home to start baking mom's pie.
First I put the butter and the vegetable shortening into the freezer along with a bottle of white vinegar (yes her secret was using both butter and lard and they had to be really chilled and the vinegar did too).  While meditating I remembered her repeating that over and over, that they must be chilled.   I then sifted both the cake flour and the all purpose flour (that was another trick of hers, two types of flour and sift them even if you have sifted flour).  Then I mixed a bit of flour with brown sugar, nutmeg, cinnamon, salt and cornstarch.  I peeled and roughly cubed the apples and squeezed a lemon over them.  I mixed the apples with the flour and sugar mixture and set them aside in the fridge. 
When the butter and shortening were well chilled I cut chunks into the flour and mixed it with a pastry cutter.  I spritzed it with chilled vinegar and added more flour and mixed again and added more vinegar and mixed again.  When the mixture held together when squeezed, I tasted it.  I really didn't know what I was tasting for but I did it anyways.  Then I put the mixture into a plastic bag and formed it into a ball.  I put the bag of pie dough AND the pie pan, into the fridge.  I preheated the oven to 425 degrees.  Then I anxiously waited.
After half an hour I took the dough from the fridge.  I cut the pie dough ball in half and floured the two halves, not the counter (I recalled that during meditation).  I put some wax paper on the counter and rolled the first dough ball until it was flat and round.  It transferred successfully to the pie pan without a crack so I knew then I was headed down the right pie path.  I put the filling in, rolled out the other dough, crimped the edges, egg washed it and sprinkled just a hint of cinnamon over the top crust.  I said a prayer before putting it in the oven.
After 10 minutes, I lowered the temperature to 375 degrees (another thought that came to me while meditating).  I baked it for another 35 minutes and I took it out.  It looked my mom's pie, it smelled like mom's pie but the true test would have to wait for 30 minutes while it rested.
Dad complained that it was too early for pie but I insisted he try it and I cut him a slice.  It held together and and filling slowly and gently slid onto the plate.  I cut myself a piece.  I watched as dad made a coffee and then dicked about at the sink and took a bag out to the garage and dicked about some more before I finally piped up "Would you just eat the damn pie, please".
Finally he took a bite.  He chewed and chewed for what seemed and eternity before swallowing.  He said nothing as he took another bite.  He chewed and swallowed and cleared his throat before saying "It tastes just like mother's".  I smiled, mom would be so pleased I thought. 
I rushed over for lunch to mom's home.  I wished that she could eat the pie but I know she can't and I didn't want to risk her choking on pie.  But I told her.  I told her how I thought and thought and I was able to remember all the little tricks and I told her that I used both lard and butter and I chilled them and I used two types of flour and chilled vinegar, not water and it worked.  I told her I mastered her recipe.  Mom didn't smile but she was smiling on the inside because I could see it and then she said "Finally".

The Dementia Diary: Why a diary about dementia

The Dementia Diary: Why a diary about dementia: This is not a horror story.  Well it is, because this is diary about a mother and a daughter and their journey into the depths of Dementia. ...

The Dementia Diary: Roses in the winter

The Dementia Diary: Roses in the winter: Another resident passed away yesterday afternoon.  I am very saddened by his passing.  He didn't know me as he was blind and unable to talk ...

Roses in the winter

Another resident passed away yesterday afternoon.  I am very saddened by his passing.  He didn't know me as he was blind and unable to talk or really form any thought but I knew him.  But people on mom's ward become like family and when they pass, it's saddening.  
His wife was a God send to me.  Like me she was a care giver and had been at the facility everyday for the last 5 years to help with the care and feeding of her husband.   When I arrived she could see and sense my sadness.  One day she joined me for a coffee and we got to know each other.  She told me to stop holding in your tears and just cry, and you can cry with me and I did.  I bawled into her shoulder.  What I loved about her is she is like me, she doesn't candy coat the truth or the reality.  She spoke to me of her journey along side her husband and how difficult it is has been and told me that it doesn't get easier.  She helped me to accept what is happening to mom and face the future with strength and grace.  She reminisced with me as she knew my mother as a volunteer and how gentle and loving mom was with the residents.  It made me proud.  But she told me the most important thing I ever heard, a quote from Sir John Barrie, the author of Peter Pan, he once said 'God gave all of his children memory so that they might have roses in December'.  I have heard that quote so many times but to hear it that day made me stop and think.  It was fall and winter was coming and caring for my mother would be cold and dreary but I would always have the memories of the woman she was and our countless moments together and those would be my roses in the winter.  But in those early days I looked at the trees and all the beauty of the fall and I wished that aging was like the leaves, who in their last days are so colourful and full of life.
Losing a loved one to dementia is an interminable loss.  It seems to have no beginning or end.  First you lose their short term memory.  Then their ability to do simple tasks is lost and you no longer can rely on them to even put groceries away properly or take a phone message.  Suddenly they can't remember simple words or context and they will make up nonsensical words and conversation is difficult so you can no longer talk to your loved one.  They then lose the ability to write or sign their name. Eventually they lose the concept of time and days get mixed and they will be up all night and you can't sleep.  Dementia will take away their ability to orientate themselves and they won't know where they are, even if it's a familiar place.  A person will lose their ability to judge appropriately and on a hot day they might wear a toque or many layers of clothing.  They lose their ability to manage their moods and will have extreme mood swings for no reason until they lose their emotions completely and become essentially lifeless.  A person with dementia may seem different from his or her usual self in ways that are difficult to pinpoint. A person may become suspicious, irritable, depressed, apathetic or anxious and agitated especially in situations where memory problems are causing difficulties. They will also lose their initiative for simple daily things like social outings or time with family and become very passive, sitting for hours in front of the TV or sleeping all day.

Eventually a person with dementia loses themselves and then the physical losses will begin.  Due to changes in the cerebral cortex, persons with dementia often experience changes in mobility and balance. Thus, basic functions like walking, standing, and sitting may become increasingly difficult as the disease progresses and eventually they lose the ability to walk.   A person in the later stages of dementia has uncontrolled bowel and bladder function. This should not be confused with a person who cannot remember how to use the restroom or simply cannot find the restroom, even in their own home.  A person in late stages of dementia may not receive the nerve signals in the brain signalling the necessity to urinate or have a bowel movement.  Appetite is lost in most dementias so many won't eat and sometimes they lose the ability to swallow properly (like mom) and they lose to ability to eat.  Eventually they lose control of their muscles and they can't hold a spoon or even scratch their nose.    It's retrogenesis literally because it's back to birth and it describes the gradual loss of everything by the dementia patient as the person ultimately functions much as a newborn baby.  They are helpless, need diapering and feeding and the only way left for many dementia patients to communicate is by crying or grunting. 

I'm going to send roses to the widow today and  I will keep my roses in my mind.

The Dementia Diary: Sometimes you just gotta laugh

The Dementia Diary: Sometimes you just gotta laugh: I cry a lot lately.  Some are happy tears and some are sad tears and some are anger tears and some are just release.  Tears are the words th...