[The following is a speech that was given at our SA rally on 17th March 2018, reproduced here with permission]

It is with a heavy heart that I stand before you all today as my beautiful husband passed away in a care facility fifteen months ago.

Our journey began in 1996 when he was diagnosed with Primary Progressive MS. I then became his carer for 16 years, the last 4 years we were allocated 2 hrs x 5 days per week for personal hygiene through Disability SA.  As his condition progressed, more hours were required due to my decline both physically and mentally. It became a continuing battle to convince the agency that we were in a desperate situation and with so much pressure on my shoulders I ended up over a period of time making two attempts on my life, not because I wanted to die, but just to make people hear me.

By 2012 he was deteriorating more and so requiring more hours of care. Sadly we were informed by Disability SA he already had the maximum amount of hours available and as he was about to turn 65 and would transfer to the Age Pension from Disability, then he would have to enter an aged care facility.

Neither of us had any family for support in Adelaide, they lived interstate so we were alone facing this awful option.

He spent four years in care, fourteen months in the first facility which wasn’t too bad, and then to the one of choice for almost three years. Yes there isn’t and never will be a facility that is perfect, but some are better than others.

My reason for being here today and speaking is because as happened with us, people of all ages (and 65 isn’t old) are being inappropriately placed in aged care with disabilities.

Why you may well ask?  First their disabilities are usually very complex and require more extensive care and training of staff. There are usually behavioural issues due to brain injury or disease and can require between 2-4 staff to attend at any given time.

Staff ratios now can’t now deal with frail aged residents, let alone the heavier, more complex needs of disability.

My husband ended up being neglected because of behavioural issues e.g. swearing profusely, hitting out, and sometimes spitting. Yes in the real world unacceptable, so why was this happening?

First staff would enter his room with no explanation of why or what was about to be done, this happened even when I was present. They would start removing pillows and bedclothes which was quite frightening for him and he’d become aggressive.

Unfortunately the MS had attacked his frontal lobe of brain, not always the case – only approx. 10% of sufferers of this disease have this, hence the behaviour. Pain was also an issue for him which any touching triggered (nerve pain) , but it wasn’t getting documented or reported to EN or RN hence Dr. not aware until I spoke to him.

The worst nightmare was because staff were refusing to go near him and covering up for one another (a certain few) he developed a horrendous deep sacral pressure ulcer which required him to transfer to Flinders Medical Centre for assessment due to intense leg pain. After having a MRI it was established that the ulcer had tracked to the bone and infection of bone had been caused – osteomyelitis. He was in hospital for two weeks on very strong IV antibiotics and having the ulcer debrided.

On return to the home he was requiring more intense care due to dressings on the affected area and keeping it clean from soiling. Strict two hourly turning was required. For the next twelve months he was confined to bed which resulted in him losing the last of his independence – using his arms. He was not seen by or offered any physio to help this, my complaining fell on deaf ears.

There were other issues involved as to why he developed this ulcer, (equipment failure, taken away and not replaced – an air flow mattress ) and staff not reporting it to senior staff.

I also arranged with the MS Society to engage with management and have the Society’s RN come and educate staff on the symptoms and requirements of caring for persons with MS, sadly this offer was never taken up by management.

I was so concerned that due to past lack of care I decided that I would go every day and attend his needs myself. When I informed management of this their reply was ‘your choice”. I went for that year from 10am to 6pm.

Any issues I had at this time either witnessed or otherwise I would take to the care manager with whom I had a good rapport. At first it was all received well, but after a while my concerns were turned around and become about me, ” Your stressed, we’re concerned about you, trust us with his care, don’t come so often”.

I was having counselling at the time, and my counsellor told me this would happen, “They will turn things around to their way of thinking” When I told her what was said, she laughed and replied ” I told you, they’ve won”.  I just didn’t have the strength anymore to continue.

I not afraid to speak out and advocate for those who don’t have a voice and prevent our terrible journey happening to others. I also took photos to back my complaints and recommend this to anyone else.

I know I did everything possible for my husband, but I will always feel I  COULD have done more until the day I die. My only regret was I didn’t take my concern higher, but I was physically and mentally worn out and alone.

Thankyou for this opportunity to tell my story

Carolyn

 

2 thoughts on “Carolyn – A Family Carer’s Story

  1. Thank you so much . I was there and heard this speech I would very much like you to tell Carolyn how much I admire her for coming forward. I like her am hoping this current system changes for the better and the sooner the better . Give her my love thanks again . Regards Honorine 

    Sent from my SAMSUNG Galaxy S7 on the Telstra Mobile Network

    Liked by 1 person

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