Friday, March 30, 2018

I went to a meeting Wednesday with the managers of the agency that provide care for Katie.  It wasn't good.  They have provided care for Katie for the past seven years.  I trust them.  They really do care about Katie's wellbeing.

Last year this time, Katie moved from a rental unit into a home that the agency owns.  There had been many noise complaints in the rental town house because of Katie and the agency didn't have much choice.  So Katie moved into a half duplex with her old roommate and one new roommate.  

Things have not gone well.  Katie attacks her new roommate who is in a wheelchair and this woman's mother has made complaints about Katie, and rightly so.  To be honest, I didn't know it was an issue as I wasn't told.

The cannabis worked for awhile but when I switched vendors, it didn't seem to work as well.  And it only helped a little.  I was hoping it would be a miracle drug.  When Katie attacked me two weeks ago I asked them to increase the cannabis oil dose which just made things worse apparently.

So at the meeting Wednesday, the managers suggested that another agency could better care for Katie, at which point I promptly burst into tears.  They don't want to do this but feel like they have no options.  Staff are afraid of Katie and don't want to work with her which means higher staff turnover which causes her more anxiety which increases her aggression, which causes a downward spiral in her behavior. The agency has two other women in that home that they are responsible for and Katie is attacking them. When Katie attacks them she gets upset and her behavior again spirals downward.

Katie's aggression started when she turned eleven.  It has only escalated over the years.  Nothing has really helped.  We've tried many different medications, behavioral therapy, animal therapy, consequences, positive reinforcement, nothing has worked.  Katie now abuses herself as well, smashing her head against walls and floors and hitting her face with her hands.  Attacks on others have worsened over time, in part because Katie is much bigger now.  She is 5'7" and weighs 150lbs.  When she grabs your hair, she drops to the ground and takes you with her.  While Katie expresses regret over her behaviors, she also laughs too.  Katie is not stupid.  She is mentally handicapped but definitely not stupid.  She knows what she is doing.  It's part of how she expresses herself but it is also how she manipulates her environment.

I have always resisted using more medication with Katie.  She twinkles and I never wanted to dim that twinkle in her eye.  Until now.  

The options for Katie are much more medication where she lives now, enough to stop the aggression and the twinkle sadly.  If she moves to another place with this agency, it will be a rental and she will be alone with staff which increases the risk of abuse on both ends and the risk of noise complaints, so she would need to be more heavily medicated.  If another agency cared for her, it would be a change of everything in her life.  Her behavior would deteriorate again and she would need to be more heavily medicated.  If she ended up in Alberta Hospital on a psych unit, everything would change and she would be more heavily medicated.  All paths lead to the same place as far as I can see.

So yesterday I took her to see a doctor and explained our dilemma.  I told her I wanted to double Katie's dose of Nozinan.  I had researched the dose, the side effects, the daily limit of the drug, the side effects and decided this was the best option.  The doctor wanted time to do her own research and I agreed that was best.  She came back awhile later and agreed to double the dose.

So now we wait and see.

It's been almost twenty-six years since she was born and still I grieve for her.  I wanted Katie to grow up as normal as possible but I think what I wanted even more was to have a normal daughter.  I have resisted have a disabled daughter all these years.  I want her to look normal.  I want her to live normally.  I want her to be normal.  And I wonder if all these years and trials and shit have been about me not accepting her as she is, not seeing her as she truly is which is a danger to herself and others.  Because really, how can my sweet little baby girl be dangerous?

And in reality, even way back when this photo was taken, Katie could and did hurt people, including myself.

She lives in my heart this girl.  It's so hard to accept reality when I only want the goodness in her to shine through.  But this is my problem and now I need to do what is best for her, even if means dimming the light in her.

Wednesday, March 28, 2018

I have to go to a meeting today with Katie's agency.  Not sure what will happen which makes me anxious.  One of the guardians of Katie's roommate has complained about Katie.  The cannabis has failed to help her as much as we hoped it would.  I'm not sure why. 

When I was a young woman I worked at a place called Michener Centre.  It was an institution where people with mental disabilities were warehoused.  I worked on a women's unit.  There were forty-five women in each half of our building.  The building was two stories and there were eight or ten buildings on site.  It was a warehouse and as such had minimal staffing, maybe three or four staff per side.  Most of the clients/patients were kept drugged into oblivion, at least in my opinion.  They were drugged enough so that they would sit or pace all day in a locked room with forty-four other women.  They were drugged enough so that they would eat their meals quickly, thirty minutes to serve and feed ninety women, including two cups of coffee each.  They were drugged enough to sleep in huge dorm rooms.  It was an awful place and I only lasted a year there.  Everything was locked and all the staff carried big old fashioned skeleton keys.

I volunteered for every outing that there was, dances, swimming, walks, drives, you name it.  I tried but that place sucked the life out of both staff and clients.

And that's my worry with Katie.  I know times have changed but still in the back of my mind is a drugged woman, sitting in a chair, drooling, oblivious ot what is going on around her.  Drugged into submission because it's easier, because it's convenient.  It's why I fight so hard to find something that will allow Katie to be herself, to exist as herself.  There are two women in my mind.  The Miss Katie that I carried in my arms, the one who always smiled, and the Miss Katie who screams and cries and hits herself and others.  I can't reconcile the two. 

I want Katie to enjoy life.  I want her to be free of anxiety, as much as is possible.  I want her to be in public because she loves people.  I want her to be safe.  I want her to feel safe.  I just don't know how to do this. 

Friday, March 23, 2018

One of my favorite mountains, Pyramid mountain.  Seems such a strange thing to have a favorite mountain but it's lovely there. 

I'm off today which is lovey.  Got to sleep in which I always enjoy.  And it's spring which means we have a spring snowstorm raging outside right now.  It's not terribly cold, just lots of wind and snow.  Sigh.  I'm done with winter, a feeling I get every year about this time.

Miss Katie attacked me last Sunday while we were driving.  I was sitting in the back seat with her.  We were being silly and she decided to slap me, hard.  I told her no.  At which point she grabbed my hair with both hands, pulling, scratching, trying to break my glasses and bite me, all at the same time.  It was like being attacked by a mountain lion, or what I imagine that to be like.  I was crying and screaming.  The big guy was trying to drive on the freeway while all of this was going on in the back seat.  He was trying to help me with one arm while keeping an eye on the road. 

I finally managed to get her hands out of my hair without losing too much hair.  But I couldn't stop shaking and crying.  During the drive I had to hold both her hands so that the attack did not resume.  I was afraid.  We took her back to her house immediately.  She was screaming and crying, signing sorry over and over. 

I cried all the way home.  Couldn't stop shaking.  I felt assaulted. 

She is a spoiled two year old, as are most two years olds.  When she was eleven puberty hit her like a train.  Her behavior became violent and unpredictable.  From the time she was eleven until she was seventeen and a half we searched for something to help.  We tried medications, doctors, caregivers, trained behavioral therapists.  Nothing helped.  We finally found help in the form of the agency that now cares for her.  The agency has a lot of experience with clients with difficult behavioral problems.  Katie's roommate like to put her head through window, among other things.

Katie's staff and I both try to prevent her behaviors from escalating which often means giving into her.  She hurts herself.  She hurts others.  It's scary and it breaks my heart again to realize that I am afraid of my daughter. 

So last week we increased the dose of her cannabis and we wait.  My shoulders ache.  My back hurts.  I'm still protecting myself I just realized.  No wonder I've had so much pain this week.

Just got an email from Katie's agency.  The increase in cannabis oil has made her more aggressive so that will have to be stopped.  We will have a meeting next week as there have been complaints from one of the other lady's guardian.  Shit

Saturday, March 17, 2018

I had a young man as a patient yesterday.  He was not quite thirty.  He has Burkitt's lymphoma;  it is one of the fastest growing cancers and has a special fondness for the central nervous system.  He's partially paralyzed as a result of the cancer.

He came down to have a new central line put in and his old line pulled out.  He was a terrified little boy in the body of a heavily tattooed ex-con/drug addict.  It took a long time to get everything sorted out.  His platelets were low, there were questions that needed to be answered but we finally got him in the room.

I was ready not to like him.  When he first came to us another nurse had said he was kind of an ass.  But then I met him.  I talked to him.  I listened to him.  He wasn't an ass, he was just scared.  I imagine when he was first admitted he was pretty angry.  Nobody would believe him when he was complaining of symptoms while he was in jail.  Burkitt's lymphoma is a rare cancer, only 1-2% of all adult lymphomas.  Then he had severe back pain and partial paralysis.  And now he is with us.  We have three young men right now with Burkitt's and all are either partially or completely paralyzed.  They come to us and stay with us for months on end while they receive treatment.

I told him yesterday that this will be the hardest thing he will ever go through.  He is terrified of needles, terrified of pain.  I don't know what he's been through in his life but I'm guessing it can't have been good.  The last young man who was terrified of needles like that had found the body of his best friend's dad with a needle still hanging out of his arm.  That image has stayed with him his whole life.

Yesterday reminded me to not prejudge people.  I try and I fail and then I try some more.  We are such a messy species, us humans.  Perhaps wolves and elk are just as judgmental as us but they just don't beat themselves up over it.  Or maybe they do.  Who knows.  It's one of my traits that I most dislike about myself.  I know it's part of being human.  That judging is probably an old trait that helped keep us safe and probably still does but it's also a very poisonous trait that keeps us from truly seeing each other as the same.  Because we are all the same really.  We all have fears, pasts, wounds.  We all suffer, we just express it differently.  We all carry our past on our backs with us and it colors everything we say and do.

It's hard being human.

Saturday, March 10, 2018

I'm liking my counselor.  She's older than me, a cancer survivor: she's also kind and wise.  We're talking about my childhood now which makes me cry.  I've always felt like a disappointment to my family, to my ex-husband, to my children, just kind of a failure in general.  I've made lots of mistakes in life, as have we all but I have defined myself by those mistakes instead of my accomplishments or strengths.

My counselor asked me a question on Wednesday which I had never asked myself before.  What do you like about yourself?

Here goes.

I have a very good sense of humor, all kinds of humor.
I'm hard working.
I'm willing to look at myself and my flaws.
I'm smart.
I love word play.
I love play in general, especially the kind little kids enjoy.
I'm compassionate.
I'm empathetic.
I'm loyal.
I love looking at the world.  My memory is all visual and I love just looking, soaking the world in.
I'm a good baker.
I'm a hugger.  The world always needs more huggers.
I love learning new skills.
I'm love to read and learn.
I'm quite willing to look foolish to make others more comfortable.  At work I often play the fool for my patients, to make them laugh.
I tend to love hard, if that makes any sense.  It does to me.  Fiercely might be a better word.

What do you like about yourself?  Please tell me.

Wednesday, March 7, 2018

Today is not a good day.  I don't know why but I'm sad again, the darkness threatens to pull me under again.  I'm just so tired.

So, things I'm thankful for today.

The county cleared our street yesterday, no more ice or snow.  It's lovely.
The big guy fixed my stove.
I'm getting a massage today for my sore back.
And I'm seeing my counselor today for my sore soul.
I don't have to work today.

What are you thankful for today?

Friday, March 2, 2018

I'm having a hard time with world right now.  There is so much hatred, so much anger, so much antipathy.  It seems that Trump has unleashed all of the nastiness in the world.  He has given people free rein to be their very worst selves.  Social media allows people to spew their vile words everywhere, contaminating everything with meanness and rancor.  It is contagious and as dangerous as any virus.  It pulls the whole world down.

Today I am off so I will work towards bringing light back into my life.  Goodness.  Compassion.  Kindness.  I forget these sometimes in everyday life when I look at Facebook.  Forget that there are kind, good people everywhere.  That as a whole humans are better than we are awful.

I saw these mitts on Kitsilano Beach.  Someone had taken the time to pick them up and leave them in plain sight in hopes that the owner might find them.  There is kindness.

Yesterday a MRI tech talked a terrified, yelling young man into having his scan.  She was patient and no nonsense with him.  He was twice her size and she calmed him.  He had his scan and as he left you could see how light he was.  There is kindness.

Everyday at work volunteers make my hospital a better place.  Virtually all of the volunteers have been touched by cancer.  One volunteer has a permanent trach.  Another wears a lymphedema sleeve on her arm.  Another is missing one ear.  They show up every week.  They hand out coffee and juice and cookies.  They push wheelchairs.  They teach women how to wear wigs and put on makeup.   There is kindness.

Apparently there is even a World Kindness Movement.   It gives me hope.

Spring comes late to Northern Alberta.  It's the beginning of March.  It's -11C outside.  The wind is blowing, everything is still covered with snow and ice and another blizzard is due to arrive shortly.  At this time of the year it can be hard to feel hope.  But as I sit here writing this, a flock of cedar waxwings flew by my window, a hundred birds moving in unison across the sky, searching for berries as they do every spring.   They are my harbingers of spring.  They give me hope.