clinical focus
In the moment
Heather and Noel Fitzpatrick . Photo : Supplied
What it ’ s like for the loved ones of people living with dementia .
By Eleanor Campbell
A decade after her husband was diagnosed with early-onset dementia , Heather Fitzpatrick says she has learned to enjoy her time .
“ I guess lots of people ’ s pipe dream is to live the moment , but that ’ s what I do ,” she says .
“ We ’ ve both always been involved in music , and that ’ s still a big part of our enjoyment .”
Heather has been married to her husband Noel for 46 years , and they have three adult sons and four grandchildren .
Diagnosed at age 61 , Noel had lived with Heather in their Brisbane home until he moved into residential care earlier this year . “ It ’ s been the right decision , it ’ s just a very hard decision to make ,” Heather says .
“ Nobody ever really knows how hard it is until you have to do it .”
Heather described her husband as “ the most physically fit , sparky guy you could ever want to meet ”.
“ Dementia , in particular , and Alzheimer ’ s is not in the family ,” she said .
“ He , as the specialist said , had lived his life like they ask everybody to do .”
For Heather , the initial early signs in her husband appeared in “ small , funny ways ”. When out with friends , Noel would become stuck on a sentence and began to have recurring nights of restless sleep .
“ It probably was happening at about the time he was about to retire , and I just put it down to exhaustion ,” said Heather .
One night , Heather returned home to find Noel in an unusually flustered state . He was convinced that he had done something drastically wrong with their online banking account .
After looking at the computer , she realised that he had swapped some money between their accounts .
The minor mistake continued to bother Noel for the rest of the evening , to Heather ’ s concern .
“ That sort of symptom was something that would recur in the next few weeks ,” she said .
After visiting a psychiatrist , Noel underwent a series of tests which later confirmed he had evidence of frontotemporal dementia . It showed up in swiss-cheese like digital watermarks on the digital scan .
Heather said she was home with her sons the evening that she received the news .
“ I guess it ’ s like being told you ’ ve got cancer ,” she said .
“ The first couple of days were pretty traumatic , but the way we work is we find a way to get through this , and my sons were the first to say how they were going to get me through this . “ They ’ ve been my rock .” As Noel ’ s dementia progressed , Heather monitored and managed his medications , helped him complete
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Nobody ever really knows how hard it is until you have to do it .
daily tasks and organised his weekly appointments .
After waiting for two years for the first home care package , Noel was reassessed at a high-needs level and later suffered a heart attack .
“ I was always told , ‘ you ’ re still on the list ’, and in that meantime I needed help ,” she said .
“ I rang on a regular basis to My Aged Care to find out how far off [ we were ]. There was no consistency , as in a caseworker that would look after me .”
Many older Australians rely on unpaid family caregivers , with an estimated 1.1 million people providing informal support to loved ones according to the ABS .
Access to timely home care support is a widespread issue for carers and their families and was highlighted during the royal commission .
For Heather , receiving the home care package in time would have allowed her one more year to have her husband at home .
As of this year , Noel has lost his speech capacity and is unable to read or write . He still recognises his family .
Heather has moved house to be closer to her children , and spends time gardening and singing to cope with stress . She has also become an advocate for Dementia Australia to raise awareness to the general public .
“ Because someone ’ s got dementia , it doesn ’ t mean that they ’ re not capable of enjoying themselves and enjoying the community and being part of the community ,” she said . A few years ago , Heather began travelling with a friend to sing around different retirement homes , including her husband ’ s .
When the nurses remind Noel that his wife will visit to sing that day , he ’ ll go into the room where they are due to perform and wait in the front row .
“ One time he got up when he heard something that I used to sing , because he used to play beautiful guitar .
“ The light went on and he just got up and came over and danced with me while I was singing , which was really bittersweet .” ■ agedcareinsite . com . au 19