We met with a new agency this morning who wants to provide care for Katie.  They listened to us and asked questions for two hours.  And not only do they want to provide care for her but they also offer a day program for her.  They want the cape off, they want her out of the wheelchair, they want her living her life and they understand that the agency needs to accommodate Katie, not the other way around.

I am thankful and I cried of course.  Tears of joy.

Today I would rather be here, wandering along the beach, listening to the sound of the waves gently touching the sand.  It's been a tough week.  We have long term patients at work, many patient's I've known for years.  One of my favorite patients came in this week for a scan.  I've known her for five years.  She has a wonderful smile and laugh.  She loves life, especially spending time with her grandchildren.

She was looking and feeling awful when she came in so she ended up on a stretcher.  We joked a bit, I got her a blanket and then she said she thought she was almost done which made both of us cry.  She's only sixty years old and she's had cancer for the past five years.  She has a seven month old grandson who won't remember her.  I suggested she leave a letter for him but she said no, she wanted her other grandchildren to tell him about her.  When she left I gave her a big hug and I thought about how much I hate cancer.

Yesterday I found out another one of my favorite patients has opted for assisted suicide on Saturday.  Fortunately I was in a stairwell when I was told this so I could cry in peace.  This patient is a man who is only a year younger than me;  he has a three year old daughter.  He's kind and gentle and just such a lovely person.  He's been coming to us for awhile as well and now he's an inpatient nearing the end.  Today he came down to us to have his central line checked because somebody thought it might be leaking.  He was pretty well medicated, maybe even a little high, but not in pain.  I overheard him explaining to the x-ray tech that he was going for MAID, medical assistance in dying, on Saturday so we just needed to make sure the line was working.  He told the doc too.

Yesterday when we took him upstairs on his stretcher he was singing.  Today I told him that it was a honour to take care of him and that I was so glad I had the chance to meet him.  He said, "I'm so glad we met too Sherry."  I smiled and didn't tell him that wasn't my name.  I'm okay being Sherry for him.  He made me smile and I will raise a glass of wine to his memory when I go out for supper on Saturday.

Today a young man paralyzed from his tumor pressing on his spine came back to us;  he was with us last fall for months.  He was a huge guy, six foot five, three hundred pounds.  It always took five of us to move him from the stretcher to the table.  He's lost almost a hundred pounds, the cancer has spread to his brain.  He doesn't have much time left.  His daughter is sixteen months old now and walking;  last fall she was still a baby.  She won't remember her daddy.

There are more.  People getting sicker, new patients taking the place of those who have gone.  A never ending carousal of cancer.

I will spend the weekend working in my garden, digging up weeds, mulching, moving plants, digging in the dirt.  We're going out with friends for supper on Saturday.  I will walk the dog.  I will try to remember to be thankful for the time I have here.

I've been on estrogen and progesterone for the past five years because I kind of lost my mind when menopause first hit me five years ago.  But you're only supposed to stay on it for five years and my time is up so I've been decreasing the dose for the past few months until this past Monday when I took the last patch off.

So now the hot flashes are back in full force, enough to make me want to vomit last night.  We took the dog for a walk and it's hot as hell here.  When we got back home to our lovely hot house I sat down and had a hot flash which heated me up enough to feel sick.  It passed but it's a very unpleasant feeling.

I also feel foggy and maybe a little irritable, maybe a lot irritable.  I have a problem with my temper anyway which I try to keep in check but when my hormones are out of whack it feels like trying to rein in a dragon, a fiery, pissed off dragon.  So there's that.

Otherwise life is fine.  I need more exercise but keep finding excuses to not exercise when the best thing for me would be exercise.

I'm training a young nurse to work in our interventional radiology suite and found it difficult to focus yesterday.  She had lots of questions which I tried to answer while also assisting the radiologist.  Mistakes were made, by me.  Nothing to do with the patient, just with me not paying attention to what was going on because I was distracted.  I kept handing the rad the wrong instruments.  He's an extremely kind man and when I apologized to him later he said not to worry.  We're a team.  I helped him when he first started and today he was able to help me.

So I'm not losing my marbles but I am having a hard time dealing with distractions, something the big guy would agree with as we had a long conversation about this last night.  He's not wrong but it's hard to hear the truth.  Neither is this a new problem with me, I've been like this my whole life.

I'm off today so I'm taking the dog for a nice long walk before it gets too hot.

I have a knack for pissing people off.  It is my super power as it were.  Two days ago we had a young boy come in for a conformal brain MRI.  The only time we get children is when they need brain radiation and it's never good.  They don't survive.  It buys their family time and maybe improves symptoms.

This little guy is seven, one eye looking the wrong way, probably because of where the tumor is.  His parents and big sister were with him.  The only good thing about children is that they don't know they're dying at this stage, but their parents do and it often feels like a funeral procession walking down the hallway.

I had to start his IV for the MRI scan.  His parents had been told by the staff downstairs in radiation that he wouldn't need an IV.  The staff downstairs were wrong.  The mother was upset because she could have put emla cream on to numb the little guy's skin before the needle poke but she was given the wrong information.  The little guy was stressed because he didn't think he would be getting poked.

I checked with the MRI techs and it was going to be about forty minutes before the little guy was going on the table so I found a vein that looked good and his mom put emla on his skin and I told them to come back in thirty minutes for the IV start and the emla should have helped numb the skin by then.

Then  I called downstairs and left a message for the staff who told the family that he wouldn't need an IV.  I told them he was going to need an IV, that they had given the family the wrong information and had caused a lot of stress for a little guy.  I was not rude but I was assertive.  Two of the MRI techs heard me leave the message.

Later, after the IV start, after the little guy vomited due to stress, after the MRI scan, a message was left on the nursing phone by one of the staff downstairs.  She was obviously angry and said she didn't appreciate the message I had left.

So I went into MRI and told the supervisor that if there was any fallout from this incident, that I was to blame.  He didn't care.  Radiation had sent the patient up without any warning, the whole thing was a shit show, he was frustrated with radiation.  I said that I had a knack for pissing people off and laughed but I also felt bad.  I was advocating for me patient, I was giving information and felt I had been misunderstood.

One of the young techs, also a psych major, said that when people have such an angry response it's usually because they know they are at fault in some way and it was a way to deflect blame, to protect themselves.  I'd never thought of that but it makes sense.  I'm pretty sure I do the same thing without thinking.

I then told her about my sister and my mum dying and my sister's anger with me.  She wondered if my sister did in some way feel responsible for my mum's death and for how poorly she treated my mum in the last year of my mum's life.  I don't think my sister was responsible for my mum's death but I do hold her responsible for hurting my mum's feelings.  My mum felt like a burden when she died because of what my sister said to her.  My sister told mum she should be in a nursing home, not an option I supported.

So perhaps my super power is pissing people off because I hold up a mirror.  It's not my intent to piss people of but I do strive for the truth.  I know we all lie to ourselves, me included, but I do try to look at myself honestly which causes me all kinds of stress because as a human being I am a messy individual with conflicting ideas, believes, values and intentions.  It's not easy being human.

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.

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.

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.