Back Print

By Giving We Receive: Learning from Dementia

8 October, 2013


Deputy CEO, Sara Blunt, reflects on her mother's journey with Alzheimer's disease and the community that supports her mother's life.

A few weeks ago, when the weather was wintery and wet, my mother called me three times in quick succession. I was in a meeting. When I rang her she said she had run across the lawn in her thongs and caught her toe.

My mother has not had a pair of thongs since about 1976 nor does she run much these days. She is 76 and has Alzheimer’s disease. I can no longer listen to the words she says, I listen to the concept. I said to her, “You have a sore foot”. “Yes,” she agreed, and asked how I knew. She was then able to describe what she could see of her foot. From her description it was clear that this was something I could attend to after work and didn’t need to call an ambulance.

My mother confabulates. This means she talks, she engages in conversation. It also means she fabricates imaginary experiences as compensation for loss of memory. She had a sore foot, a foot ulcer. She didn’t know why so she filled in the gaps with what seemed to her to be plausible. Maybe once in the past she did have a sore foot from running in thongs. 

Recently, I realised I needed to go to the doctors with her as it seemed the doctor wasn’t listening to her. While we were waiting, she suddenly told me she had seen the doctor leave; she observed he was clearly going to an emergency, so I should go back to work as there would be a long wait. I wondered if I was in a parallel universe, I didn’t see this but I had been distracted by a gossip magazine. When it happened the second time I realised she did not want me there. Another loss of independence and privacy, having a daughter visit the doctor with her.

The visit was useful. I heard mum give the doctor a completely different complaint to that we were there for. It wasn’t the doctor not listening to her; it was her confabulation when she couldn’t remember why she was there. Added to that, I discovered that this woman who loved fish and shellfish, and was married for 50 years to a man so highly allergic that she could not indulge, had reported his allergy as hers.

Mum is at home alone, she has a dog that is a great companion and provides a focus. She has community services supporting her. Once a week she has a social visit and shopping trip, meals on wheels most days and two days at a day centre. She is proud of the fact she is managing at home. She is independent and likes to problem solve. Sometimes three companies will arrive to do the same job as she has forgotten she has organised a repair and has “let her fingers do the walking”. 

I reflect on what I am learning from this frustrating, funny, sad journey. I am learning that it takes a community to support my mother’s life. My brother and I are not enough. Her friends and colleagues and community associates and the government funded support services all contribute. I am grateful that my mother has lots of friends. I am grateful she has been involved in community groups to support others who now are supporting her. She is funny and friendly and her soul is the same cheerful, generous and positive soul she has demonstrated all her life. If I listen to her soul she is still there, if I listen to her words I have lost her.

The greatest learning is that old adage that by giving we receive. My mother has generously given all her life, now she is on the receiving end and there are plenty of people willing to help. She smiles and thanks them all.

Sara Blunt
Deputy Chief Executive Officer

comments powered by Disqus