Dylan comes to town

My daughter was born at 6:42 am on August 9th.  No lie, my mother was there by 7:00 am.  I was going to be induced the next day but Dylan came on her own.  Knowing that a grandchild was arriving, mom made my dad book a hotel room near the hospital so that on a moments notice, she could be there, and she was and I swear she must have slept in her clothes. 
Mom has always had a special bond with my kids.  She has two other grandchildren but mom always said  it's different when your daughter has children.  So, needless to say, my kids have always been spoiled that much more, especially Dylan, and that has caused some words to be said between my brother David and I over the years.  Dylan is close to grandma too.  When Dylan and I were going through the 'normal' teenage girl angst/stupid phase, my mom was always there for her.  This Dementia has hit Dylan maybe the hardest.
We picked Dylan up at the airport and all she wanted to do was go and see grandma.  I didn't want Dylan to have the shock that I had so I tried to prep her for what she was going to see.  Really that was a waste of time because you can try to describe how a person is to another person all you want but they have to see for themselves what the situation really is.  Besides, Dylan in her typical fashion said "I know mom, I know".  Well, she didn't know.
Mom was in the Bingo room when we got there so dad went to collect her and Dylan and I sat by the fish tank.  Dad came around the corner with mom and I watched the shock in Dylan's face.  Mom's eyes got so big, she knew immediately who was standing in front her and she raised her hand and grabbed Dylan's arm.  Dylan bent down and tried to hug mom and she cried and she kept crying for another 20 minutes.
We spent the afternoon with mom.  Dylan would talk to her and reminisce about trips mom had taken her on and about life in Canmore and such, it was sweet.  Dylan was trying to get some sort of emotion or response from mom, but she got nothing.  Eventually Dylan broke down again and cradled herself in her grandma's arm and cried "Come back to me grandma, come back".  That was the moment, a moment that I guess all of us have had, that Dylan realized that grandma's gone and all that is left is a shell of woman who once was.
The next day we returned to spend the whole morning with mom as this was just a quick stop over for Dylan, she's off to Mexico and South America for a few months.  Dylan brought her Banjo.  My daughter is a very talented musician, she plays all acoustic instruments and the Clarinet.  Dylan thought that music soothes the soul and that grandma's soul needed soothing.
So Dylan starts playing.  Mom can't take her eyes off of Dylan.  The acoustics in the dining area are really good and her music resonated throughout the facility.  You could hear her in every hall way and in every corner of that facility.  Within minutes a very elderly gentlemen in a walker made his way to the dining room.  I helped him into a chair and he told me he just come to hear the girl play.  I smiled.  Then another gentlemen came and then a staff member wheeled a lady down and then another and another and before you knew it, Dylan was throwing a concert.  There was even a lady sitting by the fish tank keeping with the beat.
Eventually, like any performer Dylan had to take a break.  A staff member came over to compliment her and tell her that she can come back anytime to play because everyone has enjoyed it so much.  Dylan blushed and at that moment mom pipes up "My grand-daughter".  Of course we're in tears again but it proved that mom can still pick her moments of pride.
At lunch, Dylan helped me feed her grandmother.  Like any facility they are under staffed so Dylan fed her grandma and I help Evelyn.  Where mom has to be fed completely, Evelyn just needs help getting her own arm to her own mouth, so I helped Evelyn and then a staff member could help someone else.  It was so communal, all of us working together.
Unfortunately Dylan couldn't stay any longer.  She had some things to pick up for her trip and then we had to take her to the airport, so the time came for good-byes.  Dylan hugged her grandmother as best she could and she told her how much she loved her.  Mom said "I love you too".  Then mom motioned for Dylan to hold her hand and Dylan did.  Mom squeezed and squeezed and she was NOT letting go.  One of the nurses had to literally pry mom's hand off of Dylan's.  A part of me thinks that mom didn't want to let go because maybe she's knows that she isn't going to see Dylan again.  Another part hopes and prays that when Dylan gets back she can go and play for grandma again.  Hopes and prayers seem to be all we have now.

Mom and I are special

I have promised my mom that I will see her everyday and I will.   On this day, I went down after her nap to spend a couple hours with her.
Mom spends a lot of her time in her bed and the care workers must use a special lift to take her from the bed to the specialized chair that she has.  The process must be done in private and I can't be in the room and the reason is because they also use that time as an opportunity to change her diaper.  Yes, I said diaper but really what else do you call it?
So when the whole process was done I went back into the room to get mom and the worker told me that mom is constipated.  Constipated is word that has been part my mother's entire life.  She's always been on a lot of medication that tends to do that.  It was my mom's answer to everything.  When I was 8 she told me we can't go to Calgary today because "I'm constipated".  My mom would say "I don't feel well." and someone, anyone would respond "Why?" and her answer would be "I'm constipated".  20 years later when I would call home and ask her how she was well, you guessed it, the answer would be "I'm constipated".  But my mother had a cure for her woes, orange juice.  Not prune juice, orange juice did the trick for her.  In fact, orange juice was the sacred commodity in our house.  In the fridge there would be milk and Tang for the boys and me and in the corner, the good OJ that was reserved for mom and God forbid if ever took a sip of it.  It was just a rule, don't touch the OJ because it's mom's for her constipation.  To this day I really don't care for orange juice and I'm sure is a psychological thing based deeply in my childhood.
Anyways so I took mom and we went sat in the dining area where there was an abundance of orange juice.  I found us a nice table by the window and facing the dining room because it seems to me that mom likes to observe all the goings on.  I watched her watch people and I could tell from her eyes that she is thinking things in her head.  Some people she would watch and scowl at, where as others she would calmly watch and without any expression.  She is thinking and she still does have thoughts and it is obvious from her eyes.  I decided then that must be the way to determine what mom thinks when she can't verbalize it.
Then mom started watching me and I watched back.  Suddenly out of the blue she says and in a complete sentence without any struggle "What do you think Rick Balharry would say if he saw me like this?" It took a moment for the shock to wear off and I simply told her that he would want to help, and I'm sure he would.  Then I gave her more orange juice and that was that she went back to people watching.  Then about a half hour later again, in complete sentence and without any struggle she says "Why did he marry me?"  Of course she meant my dad and again when the shock wore off I told her the truth which was because she was pregnant.  Again, that was that, I gave her more orange juice and back to the people watching.
A nice lady and her husband sat at the table next to us.  They spoke Italian and she had brought some home cooking to feed him.  It looked and smelled wonderful.  Mom and I watched her carefully feed her husband the home cooked meal.  Eventually the nice lady offered us some and I politely refused explaining that mom can't chew or swallow very well anymore and isn't allowed solid food.  Of course conversation ensued and we discussed our respective situations.  Rose and Sam have been married for 53 years and they immigrated from Italy to Canada in 1970.  Santo (Sam??) started getting sick 5 years ago and Rose did like my father and many spouses and she tried to keep him at home as long she could but it just got too much for her.  Then she said "You and your mother are special".  I blushed and I asked her why she thought that and she explained that every caregiver in Bethany was as old as their spouse and to see someone young taking care of their parent is special and my mom must be special because I am willing to do so.  I blushed some more and thanked her.  Then my mother blurted out "Special" and Rose and I laughed.
The next day my Aunt Clara came to visit with both mom and I.  We are sitting in the quiet area on the comfortable couch.  Aunt Clara and I are chatting about the American election and out of the blue mom says "Rose is special".  There's me crying again because mom still can retain things albeit a bit jumbled but she remembered something.
You know what, mom and I ARE special.

Not the Thanksgiving I was hoping for.

My mother always put on a big spread for Thanksgiving.  Besides turkey, stuffing, potatoes, gravy and carrots there was always cabbage rolls and perogies too.  And of course pie and if anyone has had my mother's pie, of any type, they'll tell you how incredibly flaky her pie crust is..  I'm cursing myself now because I could never master it.  Anyways Thanksgiving was a big deal.  Not this year.  This year my dad, my brother Doug, me and of course mom had dinner together at mom's extended care home.  The centre was offering a plate of turkey dinner for 2 bucks to any family member who wanted to join their loved one for dinner.  My dad of course jumped at the chance to have something close to normal again and Doug and I were not going to disappoint him.
The four of us had spend the afternoon together.  Doug and I sat on either side of mom, both of us holding one of her hands.  Her hand would tremble and shake in mine and she would aimlessly stare at either Doug or me.  There was never any expression on her face or any sign of emotion, just a blank stare. It was unnerving and saddening and once again I broke down.  Doug whisked me outside where he held me and let me cry in his shoulder.  He didn't comfort me though, he simply reminded me that I have to accept the reality.  The reality is that our mother is in end stage Dementia.  Her body will continue to deteriorate.  Her muscles will get more rigid.  Eventually she will lose the ability to swallow properly (that's already happening to mom) and if pneumonia doesn't claim her, an infection might or if we are lucky, she'll just peacefully pass away in her sleep.  All I could think was that I'm not ready to lose her.
And so the four of us sat for dinner.  A care attendant came and asked if someone would be feeding her and my dad nominated me, I shrunk inside.  They fit mom with her adult size bib and placed her plate of food in front her.  It was minced turkey (it resembled dog food), mashed potatoes and puree of beets.  I watched mom just stare at the plate and I was thinking, this poor woman must know what's in front her and she must be crying on the inside too. So, the child became the mother and I proceeded to spoon feed mother.  My hand was shaking at first, it all seemed so surreal, but after a couple spoonfuls mom and I had a system.  Mom kept staring at dad's turkey dinner and watched intently as he gobbled it down.  I watched her watch him and I could see the wheels still turning inside her head.  Mom was thinking 'why you do get a proper turkey dinner and all I get is this mush?'.  My father could see this too and so I watched as he fed mom little bits of food from his plate and even a couple bites of pumpkin pie.  It was the sweetest thing I've ever seen.
After dinner we took mom back to her room and we all kissed her good-bye.  As we walked away she blurted out "love you" and again, tears welled up in my eyes.
I couldn't sleep that night, the days events kept running through my head.  I kept thinking about what Doug said, that I need to accept the reality, and so I decided that I will spend as much time as I can with mom, feeding her, caring for her and just being with her until the time comes.  Then, in my mind I started to write her obituary because I came to my place of acceptance.  I drifted off to sleep.

Dad should have fucking warned me.

On Thanksgiving Day, my father told me we'd be having Thanksgiving dinner with mom and my brother Doug at the extended care facility that mom now resides at.  I was excited and anxious.  I was happy to be spending it with my family but anxious because I knew mom was sick.
So Dad and I walk into the facility.  My dad is walking briskly like he owns the place, saying hello to some of the residents and chatting with some of the care workers.  Me, well I was dumb struck.  I was just looking around at the things on the walls and trying not to stare at some of the residents and following behind my father, just like I did when I was a kid.
We arrive at mom's room and my dad chatted with her main care worker.  Mom needed a warmer coat, they had a bag of laundry by her bed for dad to wash (family is expected to do the laundry for the residents) and they woke her up from her nap a 1/2 hour ago so that she would alert when we arrived.  Dad thanked her and walked into the room, me towing behind him.
My father pulled back the curtain and said "Mother, look who's here."  I couldn't see her as I was behind him all I could see was his back.  Then dad stepped out of the way.  There was a woman in the bed, but it wasn't my mother.  This woman was old and her hair was short and grey and messy.  This woman was thin and frail and her hands were trembling and her head tilted to one side. This woman had a hallowed and expressionless face.  This was NOT my mother.  My mother would sit up and say "Jesus Lisa-Marie can't you put on a little make-up and stop dressing like a boy and you lost more weight".  My mother would've expected some flowers or chocolate and would have nattered on about the nurses and the patients.  My mother would have her hair coiffed and wearing lipstick while she filed her nails.  No, this was not my mother.
When I realized this was my mother, my breath stopped and my knees buckled.  I had to grab on the rail of the bed to stop from falling down and crying.  I grabbed her hand and feebly said "Hi Mom".
Dad had decided it was a nice enough day to take mom outside to get some sun.  The care workers would have to come to lift her to her chair and secure her into it so he was going to fetch them and he left us.
I found a hair brush and I started to gently brush her hair and I started to cry.  "Oh mom," I said to her "I miss you so much".  And she just stared at me and while I brushed I stared back into her deep brown and lifeless eyes.  But then something happened, her eyes got wide and big and she said in weak voice, "Lisa-Marie".  I sobbed now but not from sadness. I sobbed from happiness because now I knew that somewhere deep in her mind there was still a little bit of my mom left and I am so happy to have that little bit of love.

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.
My mother starting slipping in 2009.  At first it was little things that she would forget, like the fact that she had already called to tell me something in the morning and then would call again in the afternoon to tell me the same thing.  We all noticed it but she was 74 years old and we all attributed it to, well, age.
Eventually things got worse.  She couldn't cook anymore because she would forget it was in the oven, so my father ate a lot of burnt food.  It got to the point where my father, who never cooked, took up the cooking and together with mom, they would make dinner or even spend a day making muffins or cabbage rolls, but always together.
The housework was another thing.  She would sometimes do the floors four or five times, not a week, A DAY.  My father compensated by creating a housework schedule for mom.  Mondays would be bathrooms, Tuesdays would be dusting, Wednesday would be vacuuming, etc, etc.  Eventually mom didn't know how to mop a floor anymore, or use the washing machine, or anything. So, like with the cooking, the housework also became a duty of my father.
My mother shouldn't have been driving even 20 years ago.  You were taking your life into your own hands when you drove with her because she was too busy chatting to pay attention.  But, she would always get you to the destination and whoever was with her would kiss the ground when they arrived.  I can remember a time in Vancouver when she turned on to a one-way street and was driving against the traffic.  I was screaming "Mom, what the fuck are you doing?" while shitting my pants.  Mom calmly responded "oh quit fussing, they'll move out of the way."  That's what driving with mom was like and it was 20 years ago.  But when the Dementia started to appear, she would forget to stop at a stop sign or forget to look at on-coming traffic.  Off course, she caused a small accident and they took her licence away.  She wouldn't sell her car as she believed she would get the licence back if she studied and took the test again.  She failed the test so it was then that she realized she would never drive again.
Unable to cook, or clean or drive, mom had nothing to do.  She would sit on her chair, crocheting and watching TV.  Oddly enough, at this point she could still crochet.  But that wasn't enough for mom and she was bored.  Will nothing to do, she would pick up the phone and her address book and start phoning everyone in that book.  If no one was home she would simply move on to the next person in the book and some of them were dead.  She would also call me.  Everyday.  Many times a day.  In fact, she called me so much that one day my son and I decided to count how many times.  14 times in one day and I think some days it was more.  Thank God my dad had a long distance plan.  They always send the bill with all of the phone calls itemized.and dad was getting bills that were 3-4 pages of phone calls.
The money was another thing.  Mom would shop and spend money.  I mean lots of money and I mean lots of shopping.  She bought a $700.00 bracelet for my cousin, for no reason other than to spend money.  She was buying clothes that she didn't remember buying and then accuse my father of having an affair because all of these women's clothes that were in the closet weren't hers.  In mom's mind my dad was buying clothes for his fancy women and then storing them in HER closet.  If you went to a store or a farmer's market with mom, she always bought something.  Dad would laugh.  He didn't seem to mind that they had 4 ceramic serving bowls or 7 sets of salt and pepper shakers or another 'new' x-mas tree or another blanket or another set of matching bathroom towels.  Dad would simply box things up and store them in a closet or the garage.  To this day my dad has 4 boxes of towels in the garage.
At this point things were pretty bad.  Mom would forget that quit smoking 10 years earlier so dad would always keep a pack of cigarettes around.  She would forget that she had eaten so she was always snacking.  She started eating at night, so dad gave her a flashlight to find her way to the fridge in the dark.  I hated going to visit because you could never get sleep as she was constantly getting up to eat or have a glass of milk. She was losing her balance and literally bouncing off of the walls.  Her ability to walk was going too.  She wouldn't pick up feet and would shuffle so she was falling a lot.  Yet, she insisted on going for short walks.  When we would visit, my son and I would walk with her.  She would hold on to us, so she wouldn't fall and we would walk her to the corner and back.  I would call out "Come on Ryley, it's time to walk the grandma."
Here we are in 2012, just 3 years from when the symptoms started.  Just 3 years.  Today my mother lives in an extended care facility.  My dad tried as long as her could to keep her home.  He was stubborn and naive. I say stubborn because he thinks he can do anything.  I say naive because he honestly believed that she would get better.  But a big part of this is the fact that my father loves my mother and he didn't to be without her.
So, I made a decision to move back to Alberta and live with my father.  My relationship broke up.  I hated living in Kamloops and my father was lonely.  But the biggest reason for the move is my mother.  I know she might not have much time here on Earth left, so I want to be near her.  Those who know me might not understand this decision because if you really know me, then you know that my mother and I had an extremely volatile relationship.  It was love/hate.  It was toxic.  It was even a little co-dependent.  I don't care.  The woman gave me life.  The woman took care of me.  The woman never gave on me and would defend me with her own life if need be.  Mom did a lot for me and I owe her and it's as simple as that.