Tuesday 20 January 2015

Cases of the loud, bossy, clueless obnoxious powder puffing girls

Having mystery people in your house is hard. By mystery I mean the Carer & Nurses that turn up daily to help me. I am super grateful to have this help at home because without it I would not be able to have the privilege of living with my family and could face one of my biggest fears since early on, which is the possibility of living in nursing home setting. Ugh. Thankfully I have an amazing family who wouldn't let this happen and for that I am blessed.

There's a lot of things I wondered upon coming home and having nurses around. Things like
how the nurses/carers would fit in
how we would interact and get along
how they would work as individuals and with each other.
And so much more...

So much wonder and hope for something so unknown and new to me. Now though, after being home for a few months on& off I feel I have some understanding of how this home nursing care goes.   Well mine anyway! When I was preparing to come home after my first extremely long hospital stay my social worker, my nursing coordinator and I interviewed a number of nursing care companies in my area. I took this seriously because I needed to feel comfortable that I could trust the company and that they would care for me & my medical requirements in a professional and appropriate manner. You wouldn't believe the vast levels of competency between people claiming to have the same skills. It was quite daunting, until finally I came across my current company where I felt safe and decided it was a good decision to go with them. 

Since then I've had Nurses and also carers come and go. Some great and some absolutely disgusting. I've had beautiful people come along and join me in supporting me through this journey. I've had some lovely ladies offer help and assistance beyond their scope of work and really care for me and I've had some not so lovely people walk into my life and shock me with their views and experiences. These people have all helped me to a certain degree and I am thankful for that.

There have been many outrageous & funny things that have happened or that carers have said or done over time and so e I still remain in shock from. I thought I'd give you a glimpse into a small sample of the top funny/bizarre things that have happened with my nurses & carers at home. 
Here goooessss..........


New staff 1. This lady came in and the first thing I thought was LOUD. She was determined not to let anyone overcome her or steal the spotlight. It was crazy! On the first day I ever had nurses in my house she came in like she was a pro. Within the space of 2hrs she had told me
- my room was not organised enough for her liking
- my care plan was not what she envisaged
- that she knew everything about my condition because Wikipedia is highly accurate
- told me I needed to get rid of my bedroom carpet as it wasn't "quite right darling".
- told to buy some crazy fancy garbage bag dispenser rather than the poor darling open my wardrobe and reach in to get a bag
- told me I needed a better straw dispenser (I am still wondering what she means??)

Little did I know this was Nurse 1's first day Ever of caring in the home and she had no prior experience expect for her certificates. Needless to say she did not return after a few more shifts like
that.

New Staff 2. This was my first impression of someone I was told was very qualified and experienced.  My mind went whaaaaaatt?????
Lady walks in wearing gum boots and long horse riding jodpers with a nice high collared checkered shirt. Age, maybe 60ish. Very much a country girl which is fine by me. All is fine. Until she looked at my hoist sling lifter and opened her mouth with the words "hmmm, so what do we call this device" . Ummm huh!?!?! That is like nursing caring manual handling 101!!! How is this in anyway an experienced professional. The Carer company admin lady still claimed she was experienced. Maybe in horse riding or farming sure, but nursing or caring was far from her expertise!

New Staff 3. A young lady arrives in her 30's and seems very normal and neat which is always nice. Less than 30mins into the shift she is helping me with personal care and says 
something along the lines of 'oh wow I didn't realise we had to actually do stuff. I was thinking it was cups of tea and daytime tv, I'm a beautician. I don't know anything about caring, I'm sorry I'm a little
overwhelmed.' **facepalm** It was so bizarre to me that this woman seemed to think that only older people needed care and when I say care, she means cups of tea and reminiscing on the old days.

New Staff 4. Middle aged woman arrives for the night shift. My first time meeting her isn't to bad and she seems nice. After another 20 minutes or more listening to her babble and waiting for her to start actually helping me the story gets good. We are talking, actually she is talking and she starts to tell me about her family and her son that's my age. Turns out he is a really, really good person and kind and caring and....in jail. He ofcourse didn't deserve to be in jail (according to her) because the police chased him on a big car chase around the city and when they got to him he had no choice to pull out his knife on them. Also, the marajuana found in his car was NOT his! Poor guy - definitely innocent! 
Nurse 4 then continues to tell me the bike gang are after her for her mobile tattoo business. Despite
her stories she was a nice lady.

New Staff 5. This lady was not a bad person, infact she was generally nice and sensible. She was a bit of a slow worker but she gets there eventually. A unique trait of hers is that she is the most self  noted skilled person I have ever met. She is a doctor, a nurse, a physiotherapist, an OT, an artist, a painter, a rebel, an engineer, a safety officer, a fashion designer, a hair dresser, a vet, a counsellor and the most moral and ethical person on this planet. Everyday was a life lesson and there was never a time without something being known or solved by the expert.



New Staff 6. I like to think of this one as powder puff. Except not the cute little powder puffs we are all accustomed to. 


Think outside the box for a second. Ok? Actually she is a powder puffer through and through. This lady arrived wreaking of smoke with huge messy hair, long fingernails and generally poorly presented. Most distinct feature was that her eyes were like saucepans and she was high as a 
kite. Infact, higher than any kite I've flown!! She then proceeds to inform me throughout the shift that she is just 'here for some petty cash' because she has to return to the USA where her partner is in jail and gets released soon after 3years. Further to this starts rambling about how she hates "those locked psych wards as they limit her freedom and suck" at least the last 2 times she's been forced to stay on them. OMG -&$:?#^]>? is all I was thinking!! She was legit off her face on drugs and bouncing off the walls. It was creepy, alarming and bizarre. If I had left a $5 note on the bench I think it's safe to say it probably wouldn't have been there at the end. What a sticky fingered powder puff she was!! Pffft! 

 


Now this list could go on for a lot longer than you can imagine but the joyous people above stand out in my memory right now. As you can see, people are from all walks of life and agendas. Amongst the crazies & challenges,  I currently have a nice group of nurses and carers who do a wonderful job with me. I am so grateful for their help and kindness. 
You can never really imagine or understand what it's like to have people you don't know and don't necessarily choose in your house and your world everyday, multiple times a day for hours on end. It is really confronting at first for both parties. It is a huge trust game as these people I have no connection to venture in to my parents home and see their valuables and lifestyle without any choice. To be able to continue to live comfortably adjustments have to take place immediately and over time, having 'strangers' or employees becomes the new normal. It is hard for everyone but it something that we have no other alternative so we make it work.

xoxo









Sunday 4 January 2015

Goodbye 2014



The new year is here!!! And so is renewed hope!
When I reflect on the year that has been I've had some highs and many lows, and I survived. We all did. And how exciting is it to have a fresh chapter in our life book to rethink things, discover, prosper, & continue to hope and plan for the time ahead?!?!!!

When I look back on my 2014 experiences I do get a little saddened to think of what has been lost once again. At the new year of 2014 I had great plans to start over and get my health into a better state and most of all stay out of hospital. This didn't go as planned with another 8 month admission as an inpatient. This admission was tough but also hope filled. I had sepsis twice, septic shock once, my family were called to come in to the hospital because I was seriously ill, aseptic meningitis, cellulitis, PICC lines, port-a-caths, infections++ , countless loss of consciousness each day, injections, blood antibodies and plasma tranfusions of ivig and much more. It has been gruelling and tough for myself, my family and my medical team. But I feel we may have turned a corner.

With a new treatment approved to treat my nasty diagnosis things are looking better for the first time since i became unwell in 2010. When I started this year I was slowly climbing my improvement ladder until I got acutely unwell which then spiralled downwards and out of control. My Doctors predicted I would not be ready for discharge until November 2014, but this time I showed them and was discharged in August. Since then I have fought to continue to improve and make the most of this winning streak. These last few months I have been very unwell again but we have managed to pull through each time and not encounter any long inpatient stays, which is a huge win in my eyes.

This Christmas  and New Years were special. It was a beautiful yet quiet Christmas at home with my mum, dad and brother. Sadly for us, both my sisters are off around the world in Europe & Cambodia so we missed them dearly. This was the 2nd Christmas that I have been totally out of hospital since 2010. We had a delicious lunch and I somehow managed to sleep both before and after the food...pre-food coma maybe?? It was so nice to be home and spend the day how we wanted to which was low key and relaxing. 
New Years Eve was also so good. For the first time we went to watch the 9pm fireworks on the foreshore closest to our house. Mum packed us a picnic dinner & I stayed lying down most of the day so that I could last sitting in my chair for a few hours which worked well. It was a serene and family friendly environment. It was so easy which is something I never say these days. We watched the fireworks, my favourite oroton scarf got caught onto a sparkler spark and burnt a hole in it which sucked and then we went home & I was in bed by midnight to watch the Sydney fireworks display.



The year of 2014 was not easy. Everything came with a battle and left me exhausted and down. But as anyone else would, I picked myself up and kept pushing. I kept pushing because I deserve better and I am a determined brat. Now, looking at the last few months, my pushing won. I am physically the best I've been since 2010. I can sit for a few minutes unsupported, I'm doing more for myself everyday and I am pushing the boundaries with my family, physio's and OT in rehabilitation. 

I've got a lot of hope for this year. I'm not one to write a list or plan out dates/times but I do have an overall idea of how I'd like this year to go.
I want to stay out of hospital.
I want to eat healthy
I want to improve my health
I want to improved my physical abilities
I want to reduce my loss of consciousness 
I want to reduce my symptoms
I want to reduce some medications
I want to write my blog more regularly
And 
I want to start living again.

Although I'm sad that I lost most of my 2014 to poor health and recovery, it has also opened the door to improvement in my function with the new treatment. I don't expect things to be perfect and they probably won't be easy but 2015 I'm ready for you!!!! 

Operation 'Get My Life Back' continues...now!!!!!!!
Happy new year everyone!!!! 



xoxo