Friday, 19 October 2012

BINGO was his name-o

I must say that keeping mom busy and amused is fun.  I refuse to let her lay in bed  and die and I don't think that vegetated in front of a TV all day is that stimulating either.  On this day it was BINGO, and for money too.  It's a buck a card and you win 2 bucks a round and the jackpot for the last game which of course is a blackout.
It's a popular activity and the workers needed help porting all those that wanted to participate so I helped. In doing so, who do I run into to but Annie Kazimer and Fran Eklof.  I chatted with Fran for a bit and then carried on my way with a couple of the residents from the lock down ward.  Yes, the facility has a lock down ward because the residents there are all very capable of walking and if given the opportunity they will bolt.  The lock down has it's own kitchen and dining area, all the doors are alarmed and it's very open so the residents have plenty of room to wander around.  The sad thing is that more and more of their minds will disappear and they will eventually be moved to mom's wing, the end stage.
The Bingo was full and my mom isn't the only one who needs help with her cards so I sat at a table with mom and two other ladies that I could help, Clara and Margaret.  Clara is in continuing care, suffers from the early stages of dementia and would get her numbers mixed up.  Margaret is in supportive living but is going deaf and although she was playing 7 cards, she needed help hearing the called numbers.  And mom, well mom can't use her hands any more and I wasn't sure if she even knew what was going on.
The game began and encouraged mom to look for the numbers.  For the first game she was quiet but I watched her eyes and she was watching the cards.  I shouted the numbers to Margaret and when Clara would cover 42, I would gently correct her and say "No, Clara 52, that's five two and she'd find it and cover it.  I had trouble getting into my rhythm and keeping up with all the cards.  In the second game, I was still trying to find my groove and while I was going over Clara's cards mom pointed to I 25 and said "I 25" because I had missed it.  I was so pleased, she can still read numbers at least and understand how Bingo works.  But the best came in the third game, we got a line and as soon I covered the last number she yelled out "Bingo".  We won 4 bucks and we'll be playing every week now.
The cards took me back to happier times in Canmore when Friday nights meant Bingo at the legion and the kids would all play in the basement.  All I needed was some Blue Whales, Strawberries and Robbie Bushulak, Mike Kolenda and Danny Leblanc there teasing me and Karen Saunders.  Mom would always give me 10 bucks to play and eat candy with.  The deal was that if I won I had to pay her back the 10 bucks and I could keep the rest.  In all those years I won once.  I walked away with 25 bucks and when I got home I gave mom her 10 back.  She told me to keep it and I danced away happy.  On this day when I gave mom the 4 bucks and she said "For you, keep it".  And I danced away happy.




Thursday, 18 October 2012

The Dementia Diary: With a rebel yell

The Dementia Diary: With a rebel yell: My mom made me a rebel.  As much as I love her, she was a controlaholic.  Mom for years controlled what I wore, what I did, how my hair was,...

With a rebel yell

My mom made me a rebel.  As much as I love her, she was a controlaholic.  Mom for years controlled what I wore, what I did, how my hair was, you name it, she controlled it, or at least she tried.  I always rebelled.  In grade two I paid Warren Musteca 5 bucks to chew up a whole package of Hubba Bubba and put it deep in the roots of my then long hair, so that I would have to have it cut short.  My mom insisted on long hair, long curly hair and the curling iron burns I had to endure each morning were unbearable.  I hated it and she wouldn't listen, so I had to resort to desperate measures. Elli Stabile had to cut my short because a whole pack of gum was wadded all through it.   Years later when I went to Europe and decided not to come back after 6 months, she followed my trail of postcards and found me in Ierapetra, Crete.   On a whim she shows up, in Crete, and spent the next 2 weeks trying to convince me to come  "It's for your own good, you need to start nursing school in the fall".  I didn't go home and just to rebel, I stayed a year longer and I never became a nurse.  I was a rebel and I say was, because nowadays I'm such a conformist that I won't even jay walk.  But the rebel returned.
Mom will not eat the mush, so all week I've been sneaking in hot sauce and real salt.  She still won't eat it but she'll at least graze on it.  Just to make sure that she is getting some nutrients, I also sneak in   multi-vitamin drops and I've been giving it to her in a glass of juice of it each day.  The no feeding tube order just hangs over my head and I want, no I need to keep mom eating and physically healthy.  Since the workers and the dieticians won't, I will.  I don't really care about the rules at this point.  Sometimes rules need to be broken.
On this day, I came an 1/2 hour before lunch so that I could meet with a dietician.  I went to mom's wing where I find the 4 workers all around the desk chit chatting.  The residents are all in their wheel chairs in front of the TV 'watching' a Jimmy Stewart movie.  When I find mom she is asleep in her chair.  She has no blanket on her and she's cold and the chair is in upright position so her head was dangling like a rag doll.  I went into her room, grabbed a blanket and her orthopedic neck pillow.  On my way back I stopped at the desk.  I coughed to get their attention and then I said, in a very stern tone, "These residents are paying 50 bucks a day for 3.6 hours of care from you.  They pay your wages so do your fucking jobs".  I walked away, put the neck pillow on my mom, put the blanket over her and wiped the snot from her nose.  They all just stood there, speechless. I know I over reacted and that this wasn't a regular occurrence but I was angry.
Mom and I met with the dietician.  Mom eats and chews oatmeal and bits of fruit every morning and without incident.  Yet, lunch and dinner are mush.  There is a step up from mush and that is mince.  It looks more appealing and I'm sure it has more taste.  I asked the dietician why mom was put on the puree diet when eats oatmeal and yoghurt with bits of fruit in it.  She told me that mom pockets her food in her mouth, especially bread.  Vermont,  is a very nice lady and well educated yet she can't read, or at least she read files.  I asked her if she was aware that mom wears dentures, she was not.  I then told her that many people with dentures have a hard time with bread because it sticks to the dentures.  Vermont apologized and admitted that she wasn't aware that bread sticks to dentures and thanked me for the information but she justified the puree diet stating that mom would pocket other food in her mouth too.
The soup came and I put crackers in it.  She told me that I shouldn't do that because mom might aspirate the crackers.  I gave her a 'look' and continued to feed mom the cracker filled soup and she ate it without pocketing or aspirating.  Vermont made a note in the file.  Then the mush came.  Mom would not open her mouth to get any of the mush in.  I then explained to Vermont that mom will not eat the mush and if this continues she will continue to lose weight and will wither away to nothing.  She responded "Well there is always tube feeding".  I had to tell her to read mom's file and she'll find that mom has a personal directive refusing the tube feeding option.  She didn't say anything.  I asked if I could be make a puree at home and bring it in daily.  I knew the answer would be no but I had to try.  I just loved the reasoning too, my food safe that I got in BC is not valid in Alberta.  I guess cross contamination and proper heating and cooling procedures are different between provinces, hell a kitchen is a kitchen, it's just stupid.  Even if I got the Alberta food safe, the kitchen I would cook them in is not approved by the regional health authorities.  So that's when I suggested that we upgrade mom to the mince.  If she can eat oatmeal without incident then there is no sensible reason why she couldn't be getting mince.  Vermont answered "I'm sorry, but that is not an option".  Well, I lost it.  I stood up, pulled the vitamin drops and salt  out of my back pack, slammed them down on the table and said "Then you bloody well try to get that crap into her" and I stormed off.
I was angry, very angry by this point.  I went to quietest place I know in the facility.  The chapel.  The chapel was moved to the centre a few years ago, it's 120 years old and stood for years on the outskirts of Cochrane where there was a small village at the turn of the century.  I spend a lot of time there because it so peaceful.   I sat in a pew.  I didn't pray.  I didn't cry.  I just sat there and took a few deep cleansing breaths.  Then I talked to God or the universe or the Creator or whatever and I asked them to please help my mom eat.
By the time I got back to the dining area, desert had arrived and Vermont was feeding pudding to mom.  She told me that she tried Ketchup and mom only took a few bites and I told her I knew that, I've been feeding mom for almost two weeks and she will not eat it.  I asked Vermont if we could please try the mince, just to see how she does on it.  Vermont reluctantly agreed that the two of us would try it at dinner time.  I thanked her.
At dinner Vermont joined us.  Mom was served a mince, not mush, of roast pork, mixed vegetables and REAL potatoes.  I tasted the mince and it had flavour and the potatoes were salted and veggies were mixed with a bit of cheese sauce, it was close to real food. And mom ate, she ate, she ate more in one meal that she had all week.  It did take at least 45 minutes to feed mom, but I do feed Evelyn at the same time.  But she ate.  Vermont actually gave me a few pointers to stop mom from being distracted.  All I have to do is simply put a spoon in mom's hand and that triggers her brain and tells her brain that it's meal time and mom swallows better and is less distracted.  Also just touching the spoon to her lip, like a baby, will get her to open her mouth wide enough to get food in.  I have never been happier to feed to mom then I was then.  Just seeing her eat and not grimacing at the mush in front of her was so uplifting.


Tuesday, 16 October 2012

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