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. 

The Dementia Diary: For life

The Dementia Diary: For life: When I was a kid, my friend Laura and I would often venture to her grandparents by the Miner's hall.  We would listen to her grandpa and her...

For life

When I was a kid, my friend Laura and I would often venture to her grandparents by the Miner's hall.  We would listen to her grandpa and her grandmother would make us tea and cookies.  In fact, it was Mrs. Smith who taught me how to brew a proper cuppa.  To me and still to me this day, that's the image I have elderly couples.  They downsize to a smaller house that is adorned with the remnants and knick knacks of their life together and spend their days together.  The old folks home, in my mind, was full of widows and widowers.  It was a place where a husband would go if he lost his wife because he couldn't cook or clean and it was a place where a widow would go because she was lonely.  Of course, I have since learnt that is not the case.
At mom's facility and at many facilities across the country there are couples who reside at them, together.  Many are in the assisted living quarters and some live on different wings of the facilities because they have different needs and capabilities.  There is one couple that mom and I dine with everyday.  They moved into the assisted living side, 7 years ago, together.  Over time the wife developed dementia and had to be moved out of assisted living.  That must have been very hard for Bob.  Everyday at lunch and dinner he comes to assist his wife with eating.  It is the most loving thing to watch.  Some days the staff will try to feed her before he  arrives and she will close her eyes and pretend to be asleep and some days she will simply say "No".  She isn't asleep and she isn't being finicky, she is simply waiting for her husband to come and he always does.  If for some reason he can't, he makes sure to find me or a staff and is adamant that we tell his wife he won't be there and always says "Make sure she understands or else she'll keep waiting for me and won't eat".  It's true, if she thinks she is waiting for Bob, she won't eat but if she understands that he isn't coming, she will.  They recently celebrated 65 years of marriage.
One day Bob asked what my husband thinks of me coming everyday to feed mom lunch and dinner.  I had to respond that I'm not married.  I had to explain that I'm not married and that I've never been married.  "Oh," said Bob, "are you a lesbian then?" he asked.  I laughed because when you are 90, I guess you can ask any question you want.  I told him that I'm not and that I would rather light myself on fire, than get married, my standard answer to the question.  Bob said "Well you must be one of those who think it's an institution".  I had to explain to Bob that wasn't the case either.  I believe in marriage and I admire people who are committed to each other, the marriage and the vows but I simply haven't met someone who is amazing, and who takes those vows seriously.  I explained to Bob that most people today go into marriage not with the belief that it will be forever but with the belief that they can always get divorced and no one wants to put the work into making it work forever.  Bob nodded and said "Well that's good and you just keep on waiting then because marriage IS work and you get married for life".
There is a gentleman who at least once a week gets me to relay a message to his wife who is on another ward. "Tell her I love her and that I'm thinking of her," is what he always gets me to say and I do.  Sometimes she doesn't know who I am talking about and other times she sends a message back and it too is always the same message "Tell him I miss him".  There is another couple who's children have arranged for a private worker to come in everyday at dinner and assist their parents with eating so that they can have at least one meal together a day and at least one hour together a day.  Then there are some who walk around in sadness because their spouse has passed.  My time at mom's home and my time with the couples and widows and widowers that reside there has given me a different perspective on marriage and my talks with Bob have really helped me gain that perspective.
Many times I have asked Bob how his marriage has endured and if it was always happy and if he ever considered wandering, etc, etc.  Bob has graciously always answered my questions with the truth.  He admitted that by his estimates, if he added all the nights he spent on the couch, it would total a good year, maybe more.  But he also told me that the time spent on the couch was needed because both him and his wife didn't sleep and the quiet of the night forced them to think about the issue and by morning one of both of them would be willing to admit the wrong and then they would work on finding the compromise.  "Marriage is work and negotiations," he said.
One day I gave Bob the movie 'Jerry Macguire' to watch and I asked him to give me his opinion on it.  A few days later he watched it and over dinner we had a big discussion.  There were elements of the movie that he liked.  "Working together for a common goal is important," he said.  So I asked him, what was your common goal and he laughed "Well, we were farmers so it wasn't to be rich or famous like in the movie, our goal was happiness and we did what we needed to be happy with each other and with our life and we did it together".  I asked Bob what he didn't like about the movie and he piped up, loud and clear "That you complete me stuff is utter bullshit."  Now I laughed out loud at that one because I too think it is the stupidest line in the movie.  Bob explained that he and his wife had lots in common and they had lots of differences too but they were both 'complete' people before they got married.  Bob explained to me that the commonalities with him and his wife made some things easier in the marriage but it was the differences that made things interesting in the marriage.  He likened it to two links on a strong chain.  The links are solid and complete and on their own are strong.  When you put two complete and solid links together, they are even stronger.  I had my 'aha'/Dr. Phil moment right there and then. 
So, I no longer would rather light myself on fire than get married.  Not that I'm in any way, shape or form 'marriage minded'.  More like if Mr. Amazing were a complete link, I'm ready to consider linking together and 'consider' is the operative word there.  As this blog is read by over 8000 people world wide, maybe Mr. Amazing lives in Ireland or is named Johnny Depp or Adrian Brody.