Wednesday, May 30, 2018

This past weekend the big guy and I drove to Jasper for my girlfriend's funeral.  The weather was beautiful, as was the service.  There was an honour guard of park wardens at the door and inside the church were my friend's quilts.  Over her lifetime she made some three hundred quilts and gave them away.  People were asked to bring their quilts for the funeral and the quilts were lined up at the front of the church, draped over pews and hung at the end of the rows.

My friend was not old, only fifty-seven.  The church was full and her parents and in-laws are still alive.  I can't even imagine burying a child.  You're supposed to be old when you die.  You're supposed to bury your parents first.  But that's not how life works.  It's random.  Shit happens.  We love, if we're lucky, and we die.

The best part of the funeral was hearing about her life;  the things she enjoyed doing, the people she loved.  She had even written a portion of the service herself which was lovely.  And in the end we sang "Always Look On The Bright Side Of Life" by Monty Python, complete with whistling.

Last November when she was given her prognosis and she started planning her funeral, my friend told me that she wanted this song as part of her funeral but wasn't sure how her mom would feel about it.  Obviously her mom was okay with it.  We all sang, we all smiled, we all felt better.  One last gift that she was able to give us.

My friend was an optimist.  She truly did look on the bright side of life and to honor her memory I will do my best to also look on the bright side.

Miss Katie is doing well.  Her arm is healing and she won't be put out on the street on June 17th.  The agency will care for her until a new placement can be found for her.  I met with a behavior specialist last Friday.  She had been brought into to make recommendations on how to deal with Katie's aggression.  She believes all aggression comes from fear.  She also noted that Katie is an emotional sponge, much like her mother (cough, cough), and that Katie picks up on all of the emotions of those around her, including the fear of her caregivers.  Katie matches the mood of those around her.

Katie's caregivers are divided.  Most love her deeply and want only the best for her.  Some are just there to put in their time and get paid.  A couple are afraid of her.  Needless to say the ones who love her are loved back in return by Katie.

The specialist believes that Katie only wants to feel that she belongs and is loved, like the rest of us.  I believe this as well.  She has recommendations and will work with Katie's present agency and the new agency moving forward.  I am hopeful.

Friday, May 25, 2018

A week and a half ago Katie had a meltdown at home, not sure why because I wasn't there, and during her outburst, she threw herself off a kitchen chair and landed on her left elbow, we think. 

Her staff didn't realize that she had broken her arm;  she complained of pain and they put some ice on it and gave her some Tylenol.  They didn't call me to let me know that she had fallen.

They next morning her arm was swollen and the team leader decided to send her to emergency and that's when they let me know that she had hurt her arm.  24 hours later.

We were short staffed at work and I decided to stay at work instead of sit in emergency all day but wanted updates.  She finally got some x-rays done at 2 pm and by 4:30 pm she was on her way home.  The big guy and I went over after work to check on her and she was having pain and had her arm in a half slab.  I gave her naproxen and tried to find out what happened.  Nobody knew exactly when or how she broke her arm.  I got an incident report and sent emails to the agency asking for more information.  

I wanted to know how my daughter broke her arm and why she was sent home with the only plain Tylenol for pain relief.

So the next day I happened to be off to take Katie to a psych appointment and talked to the team leader and found out that he thinks she hurt her elbow when she fell off/threw herself off the kitchen chair.  I was satisfied with his explanation but still wanted more information about follow-up care.   He said he would work on that and he did.

On Thursday I got a call from the ortho surgeon's office who had cared for Katie a year ago telling me she would be seen this week which was good. 

And then that evening I got an email from the owner of the agency that cares for Katie giving her notice of eviction with the #1 reason for evicting her as " The recent incident with Katie breaking her arm again.  It appears our explanation on how this incident happened was not met with much belief from her primary guardian (me).  The guardian believes Katie broke her arm not by tossing herself off her recliner but earlier in the day.  We won't know for sure exactly but the disbelief shows a lack of confidence in us."  The #4 reason was low staff morale.

Sadly this sent me into a tailspin of crying and much wringing of hands.  I didn't respond to his email until this week but I was shocked and saddened.  Then my ex-husband tore into me telling me this was all my fault.

I have managed to right myself this week.  Katie will not need another surgery thank goodness but the surgeon can't figure out how Katie managed to break her arm again without breaking the plate in her arm as well.  She said she's never seen that.  

I don't feel like I did anything wrong by questioning what happened.  In fact I think it is my responsibility to ask what happened.  I don't think there was any abuse.  I believe it was an accident but I wanted information on how it happened.  Katie has two full time caregivers and she still managed to break her arm.  
When you grew up with crazy, when you lived most of your life with crazy, you learn to second guess yourself.  When people always tell you it's your fault, you start to believe them.  But this week I stopped believing them.  It's not crazy to advocate for your disabled daughter.  It's not crazy to stand up to bullshit.  It's not crazy to ask for information, to demand an accounting.  

And always the big guy is there, supporting me.  He has my back.  He loves Katie like his own.  We're not the crazy ones here.

Baby steps people.  Always baby steps.

Saturday, May 19, 2018

I'm trying hard not to think too much about Katie.  Her father is here this weekend and I imagine they went to Fort Edmonton Park which is her favourite place on earth.  The staff and volunteers there all know her by name.

I finally slept in this morning and felt like I had enough sleep for the first time in a week.  Made a run to Costco to pick up vanilla but the line ups, at ten a.m., where fifteen deep and I turned around and walked out.  There is nothing I want badly enough to stand in a lineup like that. 

I did pick up the photos of my granddaughters though.  My very kind in-laws take photos of our granddaughters and then send them to us.  It's heart breaking to see them grow up and not be able to spend time with them but it is wonderful to see them growing.

Then I went to Superstore to pick up a few groceries I started to have some free floating anxiety.  I rarely feel anxious, depressed is my preferred  mood disorder.  But I felt anxious and it continued all the way home.  Worry about Katie.  Worry about my son.  I talked to my middle daughter and that helped a little but the anxiety was still there.

So I dragged out the quilt I'm working on and finished it up.  It requires attention to detail but it's not difficult to do.  It keeps my mind a little busy, too busy to be anxious, but not busy enough to make me tired.  The quilt is finished and the anxiety is gone which is a nice feeling.

I invited a friend over for supper.  She is a nurse I've worked with off and on for the past seven years.  Off and on because she has bi-polar disorder and ends up on disability on a regular basis.  She's a lovely, smart, funny woman whom I love.  We chatted about life, work, children, hockey.  The big guy barbecued some chicken for us and we had a nice meal with good company.  My girlfriend had a home cooked meal, she's doesn't cook much, and it was so nice to see her.  She's been off work for ten months this time.  Bi-polar disorder is a difficult way to live.

I'm reading a good book right now by Ian Brown, Sixty.  It's about his life in his sixty-first year.  I'm enjoying it.

Friday, May 18, 2018

Miss Katie has been given her 30 day notice at her group home.  The owner of the agency wants her out.  It changed hands last summer, handed down to the son of the former owner.  It hasn't gone well obviously.

In April he threatened Katie with eviction.  We did everything asked of us, doctor visits, med changes, meetings, so many fucking meetings and consultation with a behavioral specialist through social services and health services.  The agency and staff did nothing different.

Then Katie broke her arm on Monday and I wasn't informed until 24 hours later while she was on her way to the hospital.  When I asked questions, I was accused of  the following, " The recent incident with Katie breaking her arm again.  It appears that our explanation on how this incident happened was not received with much belief from her primary guardian.  The guardian believes Katie broke her arm not by tossing herself off the recliner but earlier in the day.  We won't know for sure exactly how but the disbelief shows a lack of confidence in us."

And this from the incident report, "Staff did not witness how Katie hurt her arm."  She has two caregivers taking care of her and nobody saw how she hurt her arm!

So Katie has a broken arm and has to move again.  I got the email last night just before I went to bed, so I didn't sleep much.  My eyes are swollen from crying but that part is done now.  Now I need to fight for my daughter again.

Wednesday, May 16, 2018

I'm angry and frustrated and worn out.  My son started off the week by messaging, "You're a nurse.  How do I kill myself?  I have a gun but I'm afraid to use it."  

I love my son but I cannot help him.  I've tried and tried and tried.  He lies to me, manipulates me and plays my heart strings.  He doesn't like his life.  His life is a train wreck of his own making which involves alcohol, drugs, domestic abuse and jail time.  It breaks my heart but I can't fix him.  I told him that.  I told him, I love you but I can't fix you, only you can do that.

So now I just wander around with a broken heart, smiling and telling jokes.

And then yesterday at work I got a phone call about Miss Katie.  She was being taken to emergency because she hurt her arm I was told.  Yesterday was Tuesday.  On Monday morning, Katie had a melt down and hurt her arm somehow.  Nobody knows how.  Twenty-four hours later I was told and she was finally taken to emergency.  And she has a broken fucking arm.  Again!  Same arm.

And we were short staffed again so I didn't feel right about just walking out of work to go sit in emergency with Katie.  Except I should have because nobody knows a fucking thing.  Maybe surgery.  Follow-up, who the hell knows.  The emergency doc told her caregiver to give her Tylenol if she's having pain.  If!  She has a broken fucking arm.  She has pain.  She sat in emerg all day and nobody gave her anything for pain.

So work will never hold me back again.  The whole department can collapse as far as I'm concerned.  My place is with Katie.  I am her guardian.  I am her advocate.  I am her mama.  And I'm so sorry that I wasn't there for her yesterday.  

Mostly I'm tired of fighting.

Thursday, May 10, 2018

My lovely friend died last weekend.  She was an amazing woman and I shall miss her.