Advocating for my Dad by Denise Hart

A stroke often happens in an instant with no time for either the survivor or their family to prepare. As a carer you will be learning on the job and that’s OK. There are lots of services and supports to make things easier - and others to learn from.

Denise has been the primary carer for her father since his stroke in 2014 and kindly shares some of the things that she has learned about advocating within the Australian health system.

When did your Dad suffer a stroke?
My Dad had an ischaemic stroke in December 2014 at age 67. Up until the stroke he had been completely independent and living on his own. The stroke left Dad with paralysis on the right hand side of his body, total loss of speech and difficulty swallowing that meant he needed to be fed with a PEJ tube. He now lives in a high care nursing home.

What have you found worked well when advocating for your father?
Planning ahead for meetings and conversations really helps me – I try to think about what I want to get out of the conversation and what are some of the issues or complications that may be raised. There can be a doctor, multiple allied health professionals and care staff in these types of meetings, so it can feel overwhelming. Prioritising what is really important and what I am prepared to compromise on in my own mind ahead of time is always beneficial. I can’t prepare for everything and there will be unknowns (especially as I don’t have a medical background), but some time spent doing some research and thinking beforehand helps me to be as prepared as I can be to think on my feet and be assertive when needed. I take notes during meetings, as I would in a meeting at work. At the end of a meeting I verbally summarise the actions I have captured with those involved. After a meeting, I have on occasion followed up with an email to confirm the discussion and actions if it’s something important or with an agreed timeframe.

Talking to as many allied health professionals as I can has really helped. For example, I had a chance conversation with an OT in hospital when Dad had a brief rehab stint, that lead to the OT telling me about a local service I could use to get Dad assessed to purchase his private wheelchair, that no one else had been able to assist me with until that point and was totally unrelated to the rehab we were discussing. Supportive allied health professionals are like gold! Dad has a fantastic speech pathologist who has helped me advocate for his swallowing rehabilitation, balancing all the risks involved with his quality of life needs. After 12 months on a PEJ tube, Dad’s diet was upgraded to the extent that he was able to have the PEJ removed as he now gets all his nutrition on his own. This couldn’t have been achieved without this type of support.

Say thank you! It’s not all bad news, there are good things that happen or people that go out of their way. When I have noticed Dad looking really good to go out or when he has passed a big milestone, I have sent a thank you. This has been well received and some recipients have let me know that they don’t often get a thank you as it is more often that they hear complaints. Trying to build positive relationships really helps.

What are some of the pitfalls that you have faced?
Time is a key one for me. I’m married with two primary school aged children and I work full time. In the early days after Dad’s stroke there was so much that needed to be done for him, it was all consuming. I realised that I need to balance my life with what is Dad’s life and not feel guilty or worry about what other people think of the time I can put into it. Prioritising the important stuff and letting the rest go or take more time is ok. Dad wouldn’t want the kids to be adversely affected by this or have any fuss made over him.

Being impatient. This has been a slow process. I think at first I expected things to happen more quickly for Dad. They don’t. Being overly frustrated by delays is energy wasted.

Dad didn’t have an advanced health directive and now he doesn’t have his speech, but he does understand what is happening around him. He can answer yes and no, though it’s not always reliable. Making decisions on Dad’s behalf has been difficult at times. There are some areas where I feel quite clear about what he would want and others where I am unsure. If people have the opportunity to they should definitely create an advanced health directive and discuss it with family.

How have you managed your own emotions when facing daunting tasks?
When discussing matters related to Dad’s quality of life and medical issues it is daunting because there is a lot of medical information to understand and there is also a lot of emotion behind wanting things for him. Staying ‘business like’ as I have described above helps me to stay focussed on what I want out of the discussion and keep my emotions in the background. Being flexible is important as there are often medical risks that I might not have realised and I need to be willing to accept that may change the outcome I’d hoped for. I try not to be disappointed and look at the overall picture.

A couple of times I have been going through these motions and then someone has unexpectedly turned the focus on me, for example by telling Dad to be strong for me or that I’m doing a good job for him or to make sure I look after myself and I find this flipping of the attention very confronting and emotional. Being an advocate for family is something that ‘you just do’, you don’t know how to do it and you’re not prepared for it. It’s ok if there are moments when the emotions spill over.

What are the top three things that you keep in mind?
1. Be prepared
2. Follow up
3. Pace yourself – to make being an advocate sustainable for yourself over the long term