Sebastian Caruso begins every day helping his husband Jeff Thurlow get dressed.
He then writes a list for Jeff on a large post-it note on the wall in the kitchen of their Blue Mountains home in New South Wales, reminding him when to take his medication, when to do the washing and other routine tasks around the home.
It is not the life they thought they would be leading.
The pair should be enjoying being newlyweds, marrying last year after 12 years together.
Both had successful and demanding careers in Sydney.
Jeff Thurlow needs a list to remind him of his daily tasks at home. (Supplied: Sebastian Caruso)
Instead, Sebastian is now a full-time carer while also trying to hold down a senior position with the Reserve Bank, after Jeff was diagnosed with early onset dementia.
“This is the last thing I thought we’d be dealing with so early in our married life,” Sebastian said.
“I’m only 45 this year, so it wasn’t something we were expecting so early in our relationship.”
Jeff Thurlow (left), with husband Sebastian Caruso, was diagnosed with early onset dementia at 55. (Supplied: Sebastian Caruso)
‘Incredibly frustrating for Jeff’
In mid-2017, Jeff was diagnosed with “younger onset dementia”, which affected his visual processing.
“Jeff noticed that he was having some difficulties grappling with new concepts at work, things he would generally not have any issue with,” Sebastian said.
Dementia in Australia
- There are an estimated 447,000 Australians living with dementia.
- This number is projected to reach more than 1.1 million by 2056, unless there is a medical breakthrough.
- 250 people a day are diagnosed with dementia in Australia.
- Every three seconds someone in the world develops dementia.
- Dementia is the leading cause of death of Australia women, surpassing heart disease.
- There are no specific figures on the number of people from the LGBTI community with dementia.
- There are an estimated 1.5 million Australians involved in their care of someone living with dementia.
- In 2019, dementia is estimated to cost Australia more than $15 billion.
Figures released in April by Dementia Australia
“That’s when he thought there was something really wrong and went to his GP.
“He was 55 when he was diagnosed, which is certainly very young.”
Jeff has a form of dementia called Posterior Cortical Atrophy, which is considered to be an unusual or atypical variant of Alzheimer’s disease.
“We’ve noticed big changes in his motor skills … difficulty using cutlery, dressing himself, and balance and speech,” Sebastian said.
“It has been incredibly frustrating for Jeff — I now have to outline his day for him … we literally have a huge post-it note on the wall, which has all his daily routines, because it’s really important for him to maintain a routine.
“He can still make the bed and do the washing and it’s really important for him to continue to do that to maintain those abilities, but I do need to give him some help dressing because his balance isn’t very good.”
Jeff took early retirement and Sebastian is juggling his role as carer, commuting from their Hartley home into Sydney and his job as a senior project manager.
They are also working their way through the unique difficulties of being a gay couple dealing dementia.
Access to credible information for LGBTI people
Dementia Australia has released a new resources booklet to better support people living with dementia who are Lesbian, Gay, Bisexual, Transgender or Intersex (LGBTI).
Dementia Australia has released a new resources booklet to better support LGBTI people living with dementia.
There are an estimated 447,000 Australians living with dementia and based on broader population trends in Australia, there may be up to 100,000 people identifying as LGBTI with the condition.
Dementia Australia CEO Maree McCabe said traditionally, resources for LGBTI people with dementia had been difficult to access.
“These resources focus on the unique challenges faced by LGBTI in accessing credible information on dementia care,” Ms McCabe said.
“They provide access for the LGBTI community, their families and carers, and the health care community, to find information and support for them to live the life they choose and engage in the activities that are important to them.”
The booklet is a one-stop shop for information on how to access services and how the rights of people who are LGBTI are protected.
Sebastian said people from the LGBTI community want to be treated respectfully and equally by health professionals.
“We haven’t experienced discrimination from health professionals, but there is the opportunity for greater understanding about the dynamics of gay relationships,” Sebastian said.
“While there hasn’t been any direct discrimination for us, I still think that health professionals don’t fully understand the dynamics of a gay relationship.”
Sebastian said same-sex couples faced different challenges when seeking medical treatment and sometimes were not treated equally.
“In heterosexual couples the roles are clearly defined but in a homosexual relationship, those roles are less well defined in the eyes of health workers,” he said.
“In my case, while I do a lot of things in our relationship around the home, I need help with things that I can’t do because I’m working fulltime and I’m a fulltime carer too.
“Dementia Australia is working hard to get that message out to the community to ensure that from a medical perspective we are acknowledged as partners and receive equal medical advice and assistance.”
Jeff took early retirement and Sebastian is juggling his role as a carer with his job in Sydney. (Supplied: Sebastian Caruso)
‘Just living day by day’
The future is uncertain for the couple.
Sebastian has taken long service leave and said they were enjoying every day together.
“The worst-case scenario that we’ve been given for Jeff is that he has five to seven years, but we’re not sure at this stage — basically we’re just living day by day and enjoying each day as it comes,” Sebastian said.
“I’ve taken a six-month sabbatical and we’re doing some travelling and things that he [Jeff] enjoys while he still has the capacity to do so.”
If you or someone you care for needs more help, call the National Dementia Helpline 1800 100 500.