Carol Bennett, former National CEO of Alzheimer’s Australia, shares her story about her late mother’s experience living with dementia. Carol stresses the importance of implementing advance care plans.
My mother was a very strong and independent woman, who was always busy and energetic. She had a lot of friends and was the centre of our family. Over time her behaviour began to change, she became less astute when it came to decision making and there were a few changes in her character that began to become quite obvious.
It wasn’t just mum’s memory loss – it was more about the person she was versus the person she was becoming. For example, behavioural changes, forgetting people’s birthdays – things that she would never have done previously. When you know the person and how they function normally, it’s quite clear when there’s a change, and the change was becoming very apparent and progressive.
Eventually Mum could no longer stay at home on her own so she went into an aged care facility, where she had an increasing decline which led to her first admittance to hospital. It was clear after this admittance that she could no longer function independently so she went back into residential care.
Both environments weren’t necessarily the best for her and she was admitted to hospital again despite our advance care plan and our well stated wishes that we didn’t ever want her in hospital. Hospitals are a scary place for people with dementia – it’s confusing, frightening, noisy and busy. There was no recognition of her needs or even that she had dementia.
This is where more needs to be done in a hospital setting, like making sure someone is eating or going to the toilet, or moving them into a space that isn’t so noisy and bright. Mum was placed next to somebody who had just been given a cancer diagnosis so there was la lot of screaming and loud noise, which was very unsettling for a person with dementia.
Mum was sent to the hospital because she was unresponsive for a couple of days. The staff at the aged care facility said that routinely they would send people with dementia to hospital if they were unresponsive for that amount of time. I found this quite extraordinary. Mum may have been unresponsive but she was probably tired or may have had a Urinary Tract Infection and may have been frustrated with the circumstances she was in. I don’t think these circumstances warrant a hospital visit. A lot more could be done by addressing a person’s underlying issues.
I cannot stress enough how important advance care planning is and was for us. Mum and I organised a medical power of attorney early on, as well as a financial one. She made it really clear about what she did and didn’t want at the end of life, and the circumstances that she would be in and how that would work.
Making these decisions early and having an advance care plan in place was absolutely critical. Without that, it would be almost impossible to do anything, get information or make any decisions. I had to provide the plan over and over again, everywhere I went, so I was happy that I had lots of copies on hand and could produce it when needed.
Having the advanced care plan especially helped when Mum was sent to hospital from residential care. I was able to go to the hospital with my medical power of attorney and tell them mum should not be there. I was able to tell them I did not want her there and to send her back to residential care.
Mum was very clear in her wishes when making her care plan that she did not want tests and a whole lot of interventions. She just wanted to be left and that we let her be comfortable – that’s all she wanted. So it was very clear when she was not happy. There was no interpretation needed, even when she couldn’t speak. In knowing her so well it was clear to me when she was in distress, I had to intervene on occasion.
Once health professionals understood that I had Mum’s medical power of attorney and that I understood her needs, they made an effort to consult with me. It did, however, take some time to get to this stage as an automatic reaction. Making my voice heard and being proactive in my contact with them definitely assisted this outcome.
Our experience demonstrated that advance care planning is crucial. The more you can do to formalise care needs, the better, because it provides more authority and makes it simpler when you need people to respond. Often both the patient and carer are pushed from pillar to post, arranging a number of things, and they don’t need extra layers of complexity. Having an advance care plan saved unnecessary, extra distress.