Above and Beyond: Caring for Loved Ones with Serious Disability

pat-sutton brighter.jpg

by Patricia Sutton

South Australian advocate Patricia Sutton, her husband Keith and both of their daughters have cared for her two sons, Peter and Ben, since the early 90s. First Patricia discusses the importance of the NDIS. Then she tells us the story of life as a carer, being on standby, 24 hours a day, seven days a week.

PATRICIA: Not so long ago, I recall feeling very happy and relieved when I received a phone call from NDIA informing me that my two sons Peter and Ben had been accepted as participants of the NDIS, National Disability Insurance Scheme. As a carer, I felt a little bit like that was the first day of the rest of my life – as it meant that Ben, Peter and our family will now have control over what supports are received, and control also over who actually provides those supports. This was something we’d never experienced before in the 26 years we’ve been involved in the mental health sector! 

Not long before that, my family had gained the services of Partners in Recovery who began to provide at least some of the support which our sons desperately need to live independently in the community without the need for Keith and I to be there all the time. However, this has all come after fighting for a long, long time

THE NEED FOR HOPE AND THE PROMISE OF NDIS

In order to promote a strengths based approach in services for people with mental health issues, the people who access those services need to have an appropriate level of support. Otherwise, it is setting up people (and their families and carers) to fail, and actually diminishing their hope for the future. Previous (and in South Australia, current) block funding only provides for ‘welfare checks’, provision of meals (sometimes) and not much else. I have found during my 20 years of advocacy that underfunding is a common situation throughout the country. The reality of the situation with our family, given the lack of funding across the country for community based mental health services, has not been very hopeful. 

The support which our family would need in order to increase Ben and Peter’s independence has to include support to maintain their independent living, i.e. 

• Regular cleaning, 

• Tidying, general upkeep of their home,

• Regular gardening, 

• Shopping for groceries, 

• Self-management,

• Financial management, 

• Assistance with social interaction and communication, 

• Support to increase motivation and accept help, 

• Support in assisting them engage in regular recreational activities,

• Establishing daily routines, 

• And eventually support in re-engaging in work or employment opportunities. 

Attending day centres and respite in nursing homes, as has been suggested to us, are NOT dignified nor appropriate options. So at least in our state (South Australia) to date there has been and is very little funding for support for such activities of daily and independent living and virtually non-existent funds for psychosocial rehabilitation. This is why in recent years, my advocacy has been focussed on the NDIS – which to my mind, is the ONLY hope for our family for the future. Under NDIS, not only will my sons receive the community support they desperately need, we can decide where the funds are spent.

The elephant still in the room of course, is the barrier of ‘anosognosia’ which exists between many people with severe mental health issues and their families or carers. That is, where they believe that they do not have issues and that they do not require services. 

 THE STORY OF BEN, PETER AND THEIR FAMILY

I have four adult children aged between 41 to 49. Prior to 1991, all of them did well at school, and had good social networks, and lived happy lives. However, our family was changed forever when both of my sons developed mental health issues.

My eldest son, Peter, was the first to become unwell. Peter had just completed an apprenticeship as a fitter-and-turner at the age of 21 when he was the victim of an unprovoked assault (what’s known nowadays as a coward punch). This attack resulted in a serious brain injury that caused Peter’s mental state to deteriorate. 

My other son, Ben, had been achieving good results in Year 11 when he also became unwell. Ben’s condition soon became so severe that he had to leave school, and he hasn’t been able to return to his studies since. As we were still reeling from Peter’s assault, this was a very hard time.

While most people who develop mental health issues are able to rebuild their lives, this has not yet been the case with Peter and Ben. My sons also have significant problems with thinking, memory and concentration. They have great difficulty managing the basics of life without assistance including ordinary things like remembering and attending appointments or taking care of their physical health.  

Their only income is the disability support pension, they have never worked, have no friends, engage in few meaningful activities, and spend most of their time smoking cigarettes and drinking lots of Coke and coffee. Apart from us, Peter and Ben have been living entirely isolated lives and it has looked unlikely that things would change anytime soon.

PHYSICAL HEALTH NEEDS

Peter has particularly complex requirements because of an eating disorder coupled with insulin-dependent diabetes which he acquired as a side-effect of medication. It is extremely difficult to manage these complex needs, which can lead to hospitalisation. During some of Peter’s very long hospitalisations staff have had to force- feed him in order to save his life. 

Despite being non-violent, while waiting for an ambulance on one occasion, the police, who were supposed to be protecting Peter, restrained him used their batons on him ‘for his own protection’. After this traumatic event he stopped speaking, although he occasionally communicates with us by writing notes.

…In order to promote a strengths based approach in services…people…need to have an appropriate level of support. Otherwise, it is setting up people (and their families and carers) to fail, and actually diminishing their hope for the future… 

Peter actually came close to death from ketoacidosis and it resulted in an eight week long hospital admission, and his care during that time served as yet another strong demonstration of the chasm that still exists between mental health and general health services it seems that providing adequate physical health care to a person with mental health issues is too much for our system to handle. Despite all the rhetoric we’ve heard about improving the appalling fact that people with a diagnosis of a serious mental health issue live 20 to 25 years less than the general community, very little has changed.

THE DILEMMA OF AGEING PARENTS AS CARERS

As Keith and I are basically on standby 24 hours a day, seven days a week, it has been impossible for us to have a holiday for 12 years. The grief felt by the parents of people with severe mental health issues is immense, and it is totally unacceptable that families – particularly ageing parents who are often experiencing health problems themselves – have been left bearing the burden of caring for loved ones with disabilities with little to no support. We find it especially difficult to accept the scarcity of mental health services in the community here in South Australia. 

For instance, there are literally no appropriately supported accommodation options tailored towards people with severe mental illness in South Australia. I believe this lack of support is directly attributable to the widespread stigma and discrimination so prevalent in the community towards people with mental health issues. Certain mental health issues are an unpopular cause among the general public, and therefore politicians fail to prioritise it.

As there is no suitable supported accommodation available for Peter, Ben or the many others like them, our sons lived with us until recently. Thankfully, a couple of years ago Keith and I were able to buy a property, divide it into two flats and give it to our sons. The property is situated conveniently close to our home and both our daughters’ homes. 

During the first few years of caring for Peter and Ben I did everything I could to continue with my career in the Arts. However, as time went on I became more and more involved in advocacy, so I eventually sought employment in the mental health sector. This enabled me to advocate full-time for my sons, as well as all the other people like them who are still unable to speak for themselves. For the last 20 years I have advocated extensively at local, state and national levels, and been employed in many positions that utilised my lived experience with both government and non-government agencies and organisations, including the Guardianship Board of South Australia. I went down this road to have an influence on how services are delivered and, hopefully, work toward bringing change to the culture of Australia’s mental health system.

Despite some wonderful people fighting alongside us for Peter and Ben’s independence, it has been an ongoing battle to gain the support our sons urgently need to ensure their ongoing independence. My hope is that our sons’ lives will change for the better with the roll-out of the National Disability Insurance Scheme, and my dream is that my husband and I can return to just being parents for our sons, rather than carers.

In the meantime, it remains extremely difficult for Peter and Ben to live independently or to engage in rehabilitation activities of any kind without regular help.

While our two sons depend on my husband and I to be able to live in the community, Our daughters are doing well in life. They both work and have families of their own. As a direct result of what our family has been through, our youngest daughter Sarah became a clinical psychologist. They’ve both put in a lot of time and effort in caring for Peter and Ben over the years. 

Please note that some of the conditions in South Australia are different to NSW and Qld where most of our readers live -Editor 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s