Stringing words together is a monumental challenge for Veronica.
Once a high school English teacher, with a reputation for getting the best Year 12 HSC results in the region, these days she can hardly pick up a pen to write a three-letter word.
Veronica is cared for by her daughter, Emma, and son-in-law Brian. Coincidentally, Emma also happens to be a high school English teacher.
“Mum used to be a voracious reader,” Emma said “and my love of reading no doubt comes from her and all the years of wonderful books she made available as I was growing up.
“It is so sad to see her now, unable to pick up a book and read it. She can’t concentrate anymore and the words seem to get all jumbled in her head and not make any sense to her. She will start a book and read the first page a hundred times over, but get no further than that.
“If you ask her what she has read, she just says she doesn’t know.
“The continual loss, day-by-day, of who my mum is, causes me a lot of pain and immense sadness.
“It is very distressing to see this amazing woman – who was such a terrific mother, career role model, gardener, cook, scuba diver and adventurer, deteriorate into someone I can hardly recognise or communicate with.
“She is incapable of having a meaningful conversation these days, but the changes have come slowly over many years. In the beginning there were challenges, like losing her memory, forgetting basic things like turning the stove off, wandering and getting lost frequently, getting angry and violent for no apparent reason at odd times… but we managed them.
“Now mum’s care needs are getting very high and I am close to the point where I can no longer manage her care at home. I have been dreading the day when she needs to go into residential care, but I know that day has to come as I cannot really manage much longer.
“For many years I have been able to use savings and selling off an investment property my husband and I bought in our forties to pay for daily home help and respite services, but that money is almost all gone now.
“The investment property was going to help fund our retirement, but it has gone instead into mum’s care. It has given us ten good years with her.
“Having the funds to pay for in-home care has also meant that Brian and I have been able to keep on working, supporting our two children through university study.
“Being an established teacher has been great in many ways as well. With daytime help for mum, I have been able to get home by 4pm to take over her care. I do my lesson preparation, planning, curriculum modification and marking in the evenings when mum has settled for the night.
“The longer school holiday breaks have also been a great blessing, as I have been able to be more hands-on with mum during those times, so any specialist appointments or minor surgery has been scheduled for those times when I can be fully present to support her.
“Looking into the immediate future our biggest challenge is knowing how to fund mum’s move to a nursing home facility. The better ones require such a lot of money – around $200,000 for a bond and then there are yearly expenses to meet of around $60,000.
“There are cheaper options out there but most are just awful places. You would never want your loved one to go to one of those if there was any other possible option.
“We have looked at the cheaper places. Some have four people to a room and all a person gets to have is a bed, a chest of drawers, and a TV. I can’t bear to see mum go into somewhere like that.
“We are still researching our options including extending our home loan and using the extra funds to buy mum a spot in a decent nursing home.”
In Australia, dementia is the second-highest leading cause of death, behind heart disease. There is no national strategy to address it.
It is the single greatest cause of disability in Australians over the age of 65.
As the Australian population ages and we live longer, the number of people with dementia is predicted to soar. Currently there are about 413,000 Australians living with dementia. Last year, 237 new cases were diagnosed each day.
The national cost of dementia will more than double over the next 40 years, from more than $14 billion currently to $37 billion by 2056, when there will be more than one million people with dementia, according to new research on the economic cost of dementia from Alzheimer’s Australia.