Just like old times.

My mom loved a good argument and goodness knows her and I had more than a few doozies and frequently.  I honestly can't think of one thing we ever agreed upon because it was hard to agree with mom.  Mom is a very black and white thinker and is not one to compromise her views or opinions.  Basically, if my mom said the sky was green, then she would argue that it was and no matter what evidence was presented to her to say otherwise and she would argue with you until you agreed that the sky was in fact green.  Sometimes other people would agree that the sky is green, simply to end the argument, but not me, never.  Needless to say, our arguments could and would go on and on and on.  Our motto was who could yell the loudest and the longest.  I pity those who over the years tried to intervene, it was futile.

One disagreement that comes to mind was the naming of my daughter.  Two ultrasounds had said that I was having a boy and so her father and I named 'him' accordingly.  We chose the name Dylan, to honour of one of her dad's favourite musicians and to honour one of my favourite poets.  When Dylan came into this world a girl, well her dad and I couldn't find another name that we liked and we toyed with Dylana and didn't like the sound of it, so we decided to keep the name we chose.  My mother did not agree and kept insisting that we find another name as she was not going to allow her granddaughter to be named after a drunkard and hippie and have what she felt was a boys name.

Later in the day the unit clerk arrived with paper work that I needed to complete to register the live birth.  I completed them with the name Dylan.  My mother ripped up the form.  The unit clerk returned and explained to my mother that the form is a legal, government document that is officially numbered and she would now have to complete more paperwork to explain the out of sequence numbers and she gave me another form to complete to register the live birth.  I completed it and again my mother ripped it up.  The unit clerk was angered now and told mom that if she did it again, she would be removed from the hospital by security and she gave me another form to complete to register the live birth.  I completed it and again my mom ripped it up.  You guess what happened but she was allowed to return 12 hours later when all the paperwork had been completed and filed.

There were other notable arguments and often I would have no choice but you refuse to speak with her, even changing my phone number once.  That drove mom nuts.  It wasn't the fact that she couldn't speak with me, it was the fact that she couldn't yell on the phone to me or leave an argumentative message on my machine.  So, for two months I would find envelopes on the windshield of my car.  The woman would drive from Canmore to Bragg Creek, to search for my car and would leave argumentative notes on the windshield of my car.  She was determined, I'll give her that much and eventually I gave in and gave her my phone number but only because I didn't want her driving the roads in the winter.

In the past month, so much of mom has returned.  She refers to the staff by name and has no qualms about demanding their help when she needs it, not asking, demanding.  I have advised them to not give her a bedside buzzer.  She is also demanding of my dad and myself.  "Peter, get me more chocolate milk and Lisa Marie, get me a blanket or _________", is the norm again and I love it.  And, what also has returned is her love of arguing and arguing with me.

Assisting mom to eat is now different also.  She is never hungry and often argues with me that she just ate as she doesn't realize that it's been 5 hours since her last meal.  Other times she will argue that it's too much food.  So, I take the exact same portion and put it onto a smaller plate and then she is fine.  Most times she forgets to swallow or puts too much food onto the fork, so now assisting mom is reminding her swallow what is already in her mouth.  I make mom feed herself and will not give in when she demands help.  My dad still does, so sometimes she will sit and sit and wait for dad to come and when he gets there, he feeds her.  I kid you not, when she does that, she looks over to me and grins, pleased that she got her way.

Last night at dinner was no different.  First she argued that she wasn't hungry and I reminded her that she hasn't eaten anything since noon and she needs to eat.  She took a little bite.  Then she argued that it's too much food, so I went to the kitchen and put the stew and biscuit into a bowl.  She took another bite.  Then she stopped eating and I told her that she needs to eat and she said she didn't want the stew.  So I asked if she wanted a sandwich and she demanded a tuna sandwich, and I'm sure she was thinking there wouldn't be one, but there was.  I put the sandwich on a SMALL plate and placed it in front of her.  She took a little bite and then stopped.  By now, I admit, I was slightly agitated and I asked her what was the problem.  She didn't answer, so I reminded her that she has to eat something.  Then this happened.

"What don't you understand," she yelled "are you deaf?"
"I'm not deaf mom," I answered.
She pushed the two plates of food away and yelled even louder "I'm not hungry!!!"
I yelled back "I don't care if you're not hungry you have to eat!!"
She yelled louder "I don't have to do anything I don't want to !!!!"
I yelled "MOTHER, if you don't eat, you'll get sick, I'm here everyday to help you eat, so eat, PLEASE!"
"NO," she yelled louder "JUST GO AWAY AND DON'T COME BACK"
"FINE," I yelled "STARVE THEN, I DON'T CARE!!!"  I turned my chair so that she would see nothing but my back and proceeded to help Evie finish her stew.  I then realized that the rest of the dining room was quiet and all eyes were fixed on us.  Typical of our arguments, we never cleared a room but everyone always stopped what they were doing and watched to see the outcome. It didn't matter if it was a shopping mall, a parking lot, a school function, the foyer at the Catholic church, an air plane, a maternity ward or a seniors home dining room.

Eventually dad arrived and asked what was going on.  Mom said "Talk to her".

Dad knew and he laughed as he sat down and gave mom a bite of the sandwich, which she ate.  Then dad said "Just like old times," and laughed some more.

Mom and I post argument at a wedding.

She didn't win the argument but she won a grand-daughter, named Dylan, who mom nicknamed Dillie Bear or Dill Pickle.

The Dementia Diary: With a smile

The Dementia Diary: With a smile: My New Year's resolution this year was to smile more.  Everyone of every age responds to a smile, from babies to dementia patients.  Many de...

With a smile

My New Year's resolution this year was to smile more.  Everyone of every age responds to a smile, from babies to dementia patients.  Many dementia patients can't smile but they do, with their eyes and you can see how their eyes will light up when you smile at that them and those that can still smile, will and do smile back.

When I first came to mom's new home, there was also a new resident on her wing that had also recently arrived.  He was not a pleasant man at all, a curmudgeon would best describe him.  I understood him and his angry bird behaviour.  It must be very difficult for some seniors to make the transition from independence to dependence.  I can't imagine the feelings, yet, but I myself might be feeling the same in the future.  Anyone who has spent a life, lived a life and then because of age and illness is forced to give up that life, would be either depressed or angry or both.  I think he was both and I was determined to make life just a little bit more enjoyable for him by being nice and always smiling.

Everyday I would get him a coffee and a glass of juice and always with a smile.  Often I would say, "Good day," and he would respond "What's so good about it".  But I would smile and say "Well, it's another day above ground".  Sometimes he would nod but most times he would simply grunt.  Then one day he asked me why I was so nice to him and what it is that I want.  I told him that I don't want anything and if he preferred, I could be a bitch.  He laughed and laughed and finally asked me what my name was and we became friends.  Overtime he started calling me 'Lisa-sweetie' and coming in to the dining area a little earlier then the other residents so we could chat while help to get the tables ready for the residents.  Once, he even gave me shit for going away for a couple days and not letting him know.  Now, I tell him when I won't be there if I'm going away for a couple days.

I know how he likes his coffee. I know that if his heartburn isn't bothering him that he'll have a glass of orange juice.  It takes me 10 seconds to open a sandwich for him and put it on plate with some ketchup and serve it to him when he isn't keen on what is being served.  Usually if I recommend what is being served, he trusts me and will try it and if he doesn't like it, I remember, and if he does like it, I remember too, so that if the dish is on the menu again, I can remind him that he enjoyed it the last time he ate it.  It's a level of trust.

Recently, I had a day where I wasn't smiling, I was grumpy and tired.  He noticed right off the bat.  He told me "Lisa sweetie, I have come to expect your smile everyday so even if it's a fake smile, just smile".  I did and within minutes I was already feeling better, simply because I smiled.  This week I was busy on Tuesday and had a lot of things to catch up on so I didn't go to the facility and I did tell him.  Then yesterday he said to me "Lisa, I sure miss you when you aren't here," and he said it with a smile.

The other great thing that has happened is with mom.  She has regained so much in the last weeks.  The use of her hands, the ability to understand and follow and participate in a conversation, the ability to recognize feelings and emotions.  But something came back that I have missed so much, her smile has also come back, well that just has me smiling more and more.

The Dementia Diary: The key is awareness

The Dementia Diary: The key is awareness: January is Alzheimher's awareness month in Canada.  I did not know this until recently and I doubt that many people do.  I don't see any ad...

The key is awareness

January is Alzheimher's awareness month in Canada.  I did not know this until recently and I doubt that many people do.  I don't see any advertising for it, and no one has come to my door soliciting donations and I haven't seen a poster or a newspaper article anywhere.  Actually, I stumbled upon it by accident when I was reading an on-line newsletter from the Alzheimer Society of Calgary.   I was angered when I found out about it.  Angry because if I hadn't been bored and lolly gagging around on the internet, I would have never found out.  So, now that I am aware, I'm going to make everyone who reads this, aware.  Awareness is the key.

Awareness is the key to early diagnosis of any disease and especially dementia.  I knew that mom was aware of it because before her diagnosis she could feel her memory slipping away and she was worried that she was getting Alzheimer's.  All of us were worried and it was in the back of our minds but like I had previously posted, we all assumed that it was geriatric mental illness and medications that were causing all this strange behaviour and forgetfulness.  Of course, we know now, it was the early stages of Lewy-Body dementia.

Another reason why I was angered is because I'm still angry with myself.  Years ago, when mom first started showing signs of dementia I had a gut feeling.  That feeling gnawed and gnawed at me but I ignored it.  Something kept telling me that some else was wrong with mom, that something else needed to be looked into.  Still I ignored it.  I have learnt the hard way to always follow your gut and your intuition.  I am just starting to forgive myself for my ignorance because and only because the type of dementia that mom has doesn't respond or slow in progression by medications that do slow the progression of Alzheimer's and other types of dementia.  

One of the first things I noticed in mom was her paranoia.  Mom was always a suspicious person but in one of our phone calls once she accused me of trying to turn Dylan against her and to hate her.  She was ranting and raving on about it, screaming at me because Dylan hadn't returned her phone call.  Mom didn't get it that Dylan was 16 at the time and was always too busy with her friends and her boyfriend at the time to return her calls.  Mom refused to accept that Dylan was just being a teenager and that I would never do anything to turn Dylan against her.   I had to hang up on her and unplug the phone for an hour.  Later in the day, when she called again, she acted as if nothing had happened and asked if I would get Dylan to call her.

The forgetfulness was also very obvious early on.  Especially for birthdays.  Mom insisted that my dad was born on the 21st and not the 20th.  When I had called to wish him a happy birthday, instead of giving my dad the phone, she argued with me and said I was wrong and to call back tomorrow.  Then, later in the year, she called me on the 9th and not the 6th to wish me a happy birthday.  I laughed and said to her, "Mom it's not like you to be late with a birthday call," and I was shocked by her answer.  She really thought my birthday was the 9th.  I didn't argue.

Mom was a great seamstress but she stopped sewing and even sold her serger.  She said it was because her eyesight was getting bad but when she sent me a pull over she made for Ryley that had two different sized arms and the zipper was on the inside, I knew it was something more than her eyesight.  Mom kept baking but her pies and muffins were usually unfit to eat and I'm guessing it too had more to do with her forgetting than with her eyesight.  Every year mom would send knitted or crocheted kitchen clothes.  Below is a picture of one I got at x-mas in 2008 and the other is one I got for x-mas 2009.  

Mom was sad a lot and not caring about her appearance and often wearing her nightgown around all day.  She no longer enjoyed going out for coffee or going to her Red Hatters club or really doing anything.  Then she started to get very apathetic towards everything and everyone.  This was a woman who would cry at commercials sometimes or phone me so upset by something she had seen on the news.  She stopped doing that and stopped caring.  She seemed to have little or no emotion even when those close to her passed away or got bad news.  Nothing seemed to move any emotion in her.  

Those and more are considered to be early signs of dementia.  Repetition, forgetfulness, changes in behaviour, changes in moods, paranoia, changes in social skills and trouble doing normal tasks are the main changes to look for.  

There is  now a test available that identifies mild cognitive impairment and early signs of dementia.  It was created in 2010 at The University of Ohio, yes Ohio.  It is now being used by physicians all over the world.  If anyone reading this has reason to think that their parent or spouse or friend is showing signs of dementia then go to this site and download the SAGE test.
http://www.sagetest.osu.edu/termsandconditions.html    IT'S FREE!!!!  It could also be the most important freebie you ever get in your life.  

So, that is what I have done this Alzheimer's Awareness month 2013.  By next year, guaranteed, I will have organized something bigger.   Why, because I wish I had been more aware and because I want everyone to be aware.  This time last year if someone had told that next year I would be living in Alberta, in my father's basement and caring for my mother who would be suffering with end stage dementia, well I would have called them crazy and laughed in their face.  I'm not laughing now and the shock is still wearing off. 

 

 
 

The Dementia Diary: It's a new day

The Dementia Diary: It's a new day: For as long as back as I can remember my mom made the same resolution every new year, to lose weight.  The  woman spent more than half her l...

It's a new day

For as long as back as I can remember my mom made the same resolution every new year, to lose weight.  The  woman spent more than half her life on a diet and it never worked.  Mom loved her bread, cheese, sausage and buttermilk just a little to much to ever really succeed on any diet.  Now that the dementia diet has helped mom finally reach her goal, I asked what would be her new, new years resolution.  Mom answered "To walk".
I was a little shocked and dismayed.  Mom tries often to get herself up and out of bed and out of her Broda chair.  So much so that we have to make her seat belt is secure when she is in her chair and that she hasn't unbuckled it (she has a few times).  But actually walking could be an impossibility.  The apraxia (inability to control body movements) may have subsided for now, however, the atrophy in her leg muscles is probably to great for her to support her body.  Regardless, if that is my mother's goal, then I will do what I can to help her.  The first step is strengthening her arms.
Before the holidays and when mom first showed the ability to use her hands and arms again I met with the Occupational Therapist and asked him to work with mom, he agreed.  So starting next week, he will meet with mom three times a week to exercise, stretch and strengthen her arms.  I am going to attend one of the sessions so that I can see what he is doing and continue the work everyday.  The other thing he had suggested was encouraging mom to use her arms as much as possible whether when eating or flipping the pages of a book or other activities that have her using her arms.  Mom is already in the drum circle so I also got her started in painting.  A  healthy a person reading this might not see how painting would be beneficial.  You have to consider that for months and months mom did not use her hands or arms to even scratch her nose, so any type of movement is exercise.
Last night mom started her first painting group.  Mom wasn't a 'artsy' person.  She could sew and knit and crochet but painting wasn't anything she ever considered.  Once, a million years ago, she got in pottery for a year but I think that was only to appease her best friend Sylvia who's husband was a potter.  Mom did make a pretty good ashtray that dad still has and tea bag holder that I still use to this day.  Outside of that though, mom just wasn't 'artsy'.  I wasn't sure how she would respond to a painting group so I went with her.
At first mom was not interested in painting.  She asked if she could use the pencil crayons and colour the pictures.  The rec therapist told her she could but I said "No".  I reminded mom that it's a painting group and not a colouring group and she gave me one of her looks. 
I set up a pallet of paints and bowl of water and had her pick a picture to paint.  She was pissed off and said "I don't care, you pick".  So I picked and laid everything she needed out in front of her.  Mom proceeded to paint.  She finished one picture and then another and then another and was starting on a fourth when we realized that time was up and I needed to help clean up.  When my dad arrived my mom was very pleased with her paintings and she proudly displayed them to my dad, who smiled from ear to ear and even showed them to the caregiver of another resident. 
Yes, it's a new day and new year and there will be many 'old' new things with my mom and I look forward to them all.