Clinker dust, tsunami, fugedda bout it

My mom loved x-mas and x-mas baking and giving gifts and sending cards and singing x-mas carols and everything about x-mas.  Here's the strange thing, mom never put up x-mas outside x-mas lights or decorate the outside short of a wreath on the door.  For years I thought it was because of my dad and maybe he didn't want to put them up.  My father is a very frugal man and I could just see my dad calling they lights a waste of money and an additional cost on the utility bills.  One year I asked mom why we didn't put up outside lights and I fully expected to hear that it was because of my father.  However much to my surprise, it wasn't.  In fact it was my mom who didn't believe in outside decorations.  She told me that x-mas is a time for the warmth and comfort of the home and she decorated the inside so that instead of looking at the outside, people would come in and enjoy the togetherness  and love inside our home.  It made sense.  Regardless, mom always liked to drive around Canmore and see what the townspeople had put up in their yards and on the outside of the houses.  So, this year when I heard that the facility would be doing some x-mas light tours I signed mom up for the outing.
Getting a dozen residents into the handi-bus is not small feat.  Many of the residents, although walking, don't have have the strength to use the stairs to get up into the bus, so the lift must be used.  Others are in wheelchairs so the lift must be used again to get them in, then with help they are transferred into a seat and then to get the wheelchair back down, the lift must be used again.  Most of the wheelchairs look exactly alike so when they are lined up they must be labelled so no one gets the wrong chair upon return.  Many residents are very attached to their chairs and don't like the idea of them being left unattended and we have to explain to them that it is okay and their chair will still be there upon the return.  Then getting the big Broda chairs into the bus is an even bigger feat.  The platform on the lift is very sensitive to anything touching the safety holds and if one little screw or foot rest is touching the lift will not move.  The Broda chairs are not at all like a regular wheel chair.  They weigh, I swear 150 lbs and then add the weight of the person in them and they are heavy.  There are little screws and levers all over them so that any part of the chair can be manipulated for comfort and to accommodate bathing or commode use or whatever.  Loading the Broda's onto the lift means a series of adjusting and lifting parts of the chair until the lift platform is clear and it moves the resident up into the bus. Then manoeuvring them around in the bus to be able to attach the safety belts and chains is another feat.  Needless to say, getting 10 residents and 3 Broda chairs onto the handi-bus, at night, takes at least a half an hour.
Now that mom is off of the drugs and out of the drug induced zombie-like state, yes she more alert.  However, what we are now seeing are more dementia symptoms and traits surfacing.  When mom is tired many of these traits appear. Sometimes mom will be sitting at a table and she will fold and unfold and fold and unfold a paper napkin, over and over.  This is common in dementia patients and some days, as I sit with mom and others at the dining room table, the whole table will be playing with their napkins or playing with the bowl of sugar packs.  Another common symptom is the repetition of phrases or words.  It's like someone with OCD, turning the lights on and off a hundred times.  Mom was tired by the time the light tour started and 5 minutes into the tour she started repeating, over and over and over these three things, "Clinker dust, tsunami, fugedda bout it".  I just let mom repeat and repeat and repeat.  When I engaged her in conversation or pointed out a house on her right to look at, she would stop and say "Those are nice lights," but then immediately go back to  repeating "Clinker dust, tsunami, fugedda bout it".  For the entire hour mom repeated those words.
I know where the words she repeated came from.  What I don't know is how her mind is working that she would fixate on those three and at the same time.   The clinker dust of course comes from her years of working at Canada Cement Lafarge.  Mom was always washing her car because it was always covered in clinker dust and it always bothered her that her vehicles never looked pristine and new because of the clinker dust.  I'm sure at some point she must have requested that the management do something about the clinker dust on her car.  The tsunami of course is because of the big one that happened in the areas of the Indian ocean that killed over two hundred thousand people on Boxing day 2004.  Mom had travelled over the years to many of the places that were devastated and it bothered her that so many people that she had met, were probably now gone.  But the 'fugedda bout it' and in a Jersey shore accent yet, now that I didn't understand at all.  Mom never liked the Soprano's.  She didn't like the sex and violence and she especially didn't like the mental health issues that were prevalent in most of the episodes.  She hated even more the early seasons when Tony struggles were blamed on his mother Livia.  Those who are reading this that know of our family history will understand why portions of the TV show disturbed her.  Still it was funny to listen her talk in a Jersey accent.
When we returned to the facility mom was disappointed and told me "I didn't like the tour".  As I rolled her back to her ward, I asked her why.  Her answer astounded me and at the same time it made me smile from ear to ear.  Mom said "We didn't go to Gary and Lana's".  It didn't matter that mom didn't realize that we weren't in Canmore or that Gary had passed away a few years ago.  What did matter is that she remembers.  Every year we would walk to Gary and Lana's house to see the spectacular lights and figurines.  There are pictures of me as a child in front of their house by the school and pictures of my kids at their house on 9th ave.  It was another Christmas tradition that mom remembered. 

The Dementia Diary: Early x-mas gifts

The Dementia Diary: Early x-mas gifts: For the past week, I really haven't felt like writing.  Not just the blog but anything.  I'm tired and saddened by the weeks events in my li...

Early x-mas gifts

For the past week, I really haven't felt like writing.  Not just the blog but anything.  I'm tired and saddened by the weeks events in my life and in the world.  But, there is nothing like a x-mas party to turn that around.
The facility mom is in hosted a x-mas party for all the residents and their families.  I honestly wasn't expecting a big turn out because I am there everyday and so many of the residents don't have family or friends near by and often and those who do, don't see them as much as I feel they should.  So, when well over 150 people showed up,  my sadness was replaced with Christmas cheer.  There was x-mas punch, coffee and tea and sweet treats and music and Santa.  The room was so full of love for the season and for the residents that often I was smiling.  I got to meet some of the residents kids and grand kids and great grand kids and even a great-great grandchild, although she was only weeks old.  I truly enjoyed it as did my dad and as did mom.
It made me look over the events of the week and not with sadness but with a feeling of gratitude for what I do have in my life and for the little miracles that happen everyday that we often don't see.  Here are a few of the little miracles that I got from mom this week, early x-mas gifts.
On Monday she told me that I need to get a haircut.  Mom has always hated that I keep my bangs long and in my face.  As she said it, she moved her hand up and brushed my bangs away from my eyes and for a moment I was a little girl again.
On Tuesday at lunch mom she grabbed a spoon and tried so very hard to get herself a spoonful of pudding.  With a little help she was able to.
On Wednesday Ryley said "I'm so happy that you're my mom and not someone else's."
On Thursday mom told me that I looked tired and I should go home for a nap.  She was right and I did.
On Friday my daughter FB'd messaged me from somewhere in South America with 'I love you Maw."
Yesterday mom drank from the plastic cups, by herself.  Without any assistance she picked up the cup and brought it to her mouth, took a gulp and set the cup back down on the table.  I cried a few happy tears.
Today will be happy again because I choose so.  Anytime I spend angry or resentful is time wasted and it's time that I should have spent happy.  Today I will be happy and so will mom because dad brought her an early x-mas gift too.  He designed and built a contraption that she can rest books or magazines on and read.  She loved it and it will get a lot of use.

The Dementia Diary: I'm not imagining things

The Dementia Diary: I'm not imagining things: As I mentioned in other posts,  I had mom's drug regime changed.  Now it's simple, one pill at night to help her sleep and that's it.  No mo...

I'm not imagining things

As I mentioned in other posts,  I had mom's drug regime changed.  Now it's simple, one pill at night to help her sleep and that's it.  No more anti-epileptics pills.  No more anti-anxiety pills.  No more anti-depressants.  No more anti-coagulants and no more anti-psychotics.  NO MORE ANTI ANYTHING.
The change has been absolutely mind-blowing.  When I got here three months ago my mom barely talked.  She could not use her hands, even to scratch her face.  She basically slept all the time and was rigid and couldn't support her head.  As she was gradually weaned off the drugs, more and more of her began to re-appear.  Now more and more and more of her has come back.  She is so alert and so aware and so there, most of the time, that it's like she doesn't have dementia.  Well, not really, it's still very obvious that she has dementia, but the changes are heart warming and make everyday that much more enjoyable.
This morning when I went to get mom for mass, one of her care givers told me how she had to stop mom from trying to get out of bed, "She's trying to get outta of Dodge," she said with a big smile.  We are all so amazed at the bounce back.  The only medical explanation or reason for it is stopping the drug regime.  In fact, the doctor who had her on all those drugs for all those years is in such disbelief that he is coming out this week to see for himself.  At times, I myself can't believe it but I know because others notice the changes and differences in mom.  I am though chalking up some of those changes to prayer and support.  Many people besides me  have been praying for mom and many people besides me come to see her regularly and let her know that although she may forget, they don't forget her.  Really, I don't care if it's prayer, the universe, no drugs or support, I'm just glad that the times when she is 'there' now out number the times when she isn't 'there'.
Three months ago I was really quite pessimistic.  Now, I'm optimistic.  I know that not only will mom make to Christmas, but God willing she will be around for awhile.  The joy that fills my heart when I see my mom turn the page of a magazine now and try to use her hands and then her even trying to get out of bed means that she feels the changes too and her zest for life has been renewed.   She actually tells me now, that she's bored.  To rid her of the boredom I keep her in a steady supply of books and magazines and colouring books and anything that occupies her time.  I have a belief that if you snooze, you lose, so I have asked to Occupational therapists to work with mom so she can maintain using her hands and possibly even get more use back. 
I am even hopeful that her swallowing will improve.  I realize that I might be setting myself up for disappointment but I'm hoping and I will keep hoping because I never expected for her hands to come back or her mind to ever improve.  Yes parts of her brain are gone and they won't come back.  But, maybe because of persistence and determination on both my part and mom's, we have retrained parts of her brain or who knows, maybe parts that have never been used are now being utilized.  The brain is still such a mystery that this is what I think has happened with mom.  I'm no neurologist or doctor but what I have learnt from my own brain injury and rehab and from mom's great improvements, anything is possible.
For those of you who are still in doubt, below are two video's of my mom.  The first is about 3 weeks ago and the second is from this morning.  You be the judge, because I'm not imagining things.

The Dementia Diary: There are so many things to miss

The Dementia Diary: 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 t...

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.