Tuesday, 24 April 2018

Medicine Lake, the big guy's favorite place in the world.

We were in Jasper this past weekend to visit friends.  My girlfriend with metastatic breast cancer has been admitted into the hospital and is gently sliding down towards the end of her life.  One of the tumors in her brain is pressing on her right eye, causing the eye to bulge out and bother her.  Her speech is slightly slurred, her legs are swollen and she's taking small doses of morphine for the pain.  She dozes off and on, half listening to everything going on around her.  Sometimes she follows a conversation and sometimes her brain misfires and strange things come out.  Her filters are gone and she gets stuck in a rut, perseverating on something.

She sleeps at the hospital and everyday her husband takes her out for a daytrip someplace.  Last Friday was to Hinton for more quilting fabric.  She has made eight quilts since her brush with imminent death back in February.  I told her husband she wants more fabric because then she can't die.  She still has quilts to make.

She's also planning a camping trip this summer.  She wants to attend a wedding in Ontario.  She is full of plans, not ready to let go of the world yet.  And a dog, she wants a dog.  A bernedoodle to be exact, the size of a turkey.  Most of all she wants a future.

Her husband has arranged for people to be with her when he's not there.  She is surrounded by friends, family and love.  He is well cared for.  They live in a small town, a close knit community and his freezer is full of frozen meals dropped off by neighbors and friends.  He's taking care of himself too which is good.  He's taken an extended leave and spends his time with his wife, doing whatever it is she feels like doing that day.

My friend is only fifty-seven.  I hate cancer.  I know we all have to die but it still seems like a harsh way to die.  She has spent the past thirteen years dealing with cancer and now it is dragging her under.  It is unrelenting.  

There is a line in a song by Ed Sheerhan, Supermarket Flowers that rings true for me.

"A heart that's broke is a heart that's been loved"

My friend has been loved and has loved.  I will miss her.

Wednesday, 18 April 2018

A very happy Miss Katie with her honorary niece.  The new medication is working and Katie is doing well.

Saturday, 14 April 2018

Miss Lucy enjoying the sunshine.  She is the sweetest little dog, slightly neurotic but oh so sweet.  She's a rescue with an enlarged heart, a bad back and a sensitive stomach which sometimes leads to bloody diarrhea.  When she's very excited and running around like a maniac she will chase the cat and ultimately hump the cat, something which deeply offends the cat I'm sure.

We had another meeting about Katie.  Social services is now involved which is hopeful.  Social services provides the money to the agency which cares for Katie.  For the first time in years, somebody actually asked questions about Katie's needs.  The agency which cares for Katie has undergone some changes in the past nine months.  The original owner has retired and her son has taken over.  He is also a very kind man but not the same as his mother.  He has given Katie until the end of April for her behavior to improve, otherwise they want us to find another agency to care for Katie.  In the meeting on Thursday we all agreed that Katie staying where she is, in her home, is in Katie's best interests.  Now we just need to make that work.  Suggestions were made, a plan will be made, emails will be exchanged and hopefully something good will come from all this.

Katie was started on valproic acid which is mostly used for epilepsy but is also used as a mood stabilizer, something I didn't know.  She seems better.  Her behavior is better but time will tell.  And of course she is a young woman so her moods cycle along with her periods.  She was in her glory on Thursday because there was a room full of people who wanted to meet her.  She loves people and if she wasn't disabled she would have made a wonderful politician, although a mental disability doesn't seem to handicap some politicians (cough, Trump, cough).

I'm hopeful.

Pain is inevitable.  Suffering is optional.

I've seen this quote before but just reread it in a book I'm reading right now and it somehow struck a chord in me that it never has before.  

Note to self, remember suffering is optional.

Thursday, 5 April 2018

My beautiful, wrecked daughter

heads touching
tears mingling
shoulders shaking
we hold each other

unable to fix
I can only hold on
unable to stop
you can only hold on

hearts breaking
I see the baby
that was placed 
in my arms

and you?
who knows
a smell, a touch
something familiar

drugs coursing
through your body
fear soaking
your brain

my baby gone
replaced by you
my beautiful,
wrecked daughter

Sunday, 1 April 2018

I miss my granddaughters.  And it seems there is nothing good today but that's not true. 

Here is a photo of a Chinese magnolia.

My mother in law called to say hello and wish me a happy Easter.

I called my Auntie Fran in England and she is doing better than I thought she would.  She's incapacitated and her house has been sold but she was looking forward to seeing the pet therapy animals tomorrow.

I took Lucy for a nice walk, not long, it's still cold out but the sun was shining.

The big guy and I got the light bulbs in the foyer changed.  It's two stories high but we got it done and now it's bright in the foyer.

My oven is broken and normally when I feel this shitty I would have spent the day baking things that are not good for me but that make me feel better.  So it's good my oven is broken right now.  Glass half full.

My big guy gives me as many hugs as I want.

Saw Katie today and the increased dose of antipsychotics didn't really touch her, the 4mg of Ativan that I gave her stopped her pinching and slapping though.  Back to the doctor next week.

My girlfriend whom the doctors thought was going to die last month;  her husband sent me a photo today of her walking in a blizzard with a big smile on her face.

Tomorrow will be better.

Friday, 30 March 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, 28 March 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.