Carrie* is 42. She has two kids aged 10 and 7, and her husband (Dan) has dementia.
A few years ago, her life, and the lives of her family, changed dramatically. She had noticed some changes in her husband’s behaviour. He seemed distant with her and their children.
‘[It was]…making me question why he wanted to get married and have kids if he didn't seem to have any interest in us, what we were doing or interest in planning anything together. His mum kept saying that he was depressed and needed to see his GP, [but] he denied being depressed. He denied feeling that way and was quite happy and content with how things were going. But I didn't think things were right.’
One day, Dan couldn’t find words at all. They went to see a neurologist and Dan was diagnosed with younger onset frontotemporal dementia, which can affects a person’s behaviour and moods. On hearing the diagnosis:
‘I was shocked. I think I almost vomited on the neurologist and the social worker because it wasn't what I expected, it was worse. I just thought that [condition] would be really, really difficult to manage with a young family. I was worried Dan would become inappropriate around family and friends. He's such a kind person, kind, smart and fun. I thought if he changes so much and that's all people remember him by, that will be devastating.'
'And so [after the diagnosis] you leave without a treatment plan. You leave with the number for the NDIS [National Disability Insurance Scheme], and Dementia Australia, and you're told to go home and make the most of it.’
Carrie and her family have faced many challenges since the diagnosis, and one of the hardest was telling the kids.
‘You live with the uncertainty … of a prognosis. And you try and explain it… and their little hearts broke, I’ll never forget it, it was devastating.’
‘… it was the last thing I expected … [I] thought it was going to be another type of dementia or Parkinson's [disease]… not the behavioural variant... to me, that was the worst one.’
People who have the behavioural variant of frontotemporal dementia experience changes in their behaviour, personality and emotional responses. Symptoms vary from person to person. Some people become selfish and start to lack empathy, while others may start exhibiting embarrassing behaviours. Frontotemporal dementia is a progressive and fatal condition. See Understanding dementia for more information on the different types of dementia.
Since his diagnosis, Dan left work and can no longer drive. Carrie says Dan admits in hindsight ‘He was probably having some problems with work. So we were lucky with him that we was diagnosed quickly before his performance at work became an issue and he lost his job or … got into strife with doing something wrong at work [due to his behaviour changes].’
For Carrie, life is now a juggling act:
‘The pressure comes on me being the only driver, being [the] only one to organise everything. So I do all the household management, including finding, booking and organising carers, managing the NDIS, plan holidays, birthdays, Christmas etc. and I work full time.'
'I also do all the school stuff for the kids. So I could complain or I can suck it up. And there's no point sitting in a corner crying, [it] doesn't get me anywhere…I'm just lucky that I was raised to be strong, I guess, and I'm a bit of an organiser. So I just get on with it and the kids are great to have around him … they keep him busy, and they keep him on his toes.’ (see Carers of people with dementia for more information on the impact of the caring role).
She took on the caring role because Dan is her husband. ‘My vows, it's my wedding vows and, you know, in sickness or health, for better or worse. We also have 2 young children… I want them to see that when you love someone you look after them. I also would not deny him the opportunity to see them for as long as he can and vice versa. Prior to his diagnosis, I contemplated divorce many, many times. Now that we've got a diagnosis, it all makes sense. I need to care for him and give him the life we promised each other when we married.’
Carrie says most people don’t understand the type of dementia Dan has.
‘… they’re looking at him, that he’s fit [and it doesn’t look] like [anything is] wrong ... It doesn't make any sense to people … they say he's great. He's talking really well. But they don’t see that he can go 3 days without saying a word to me or [that] he hasn't said my name in 6 months. They also don't see the lack of initiative, the falls, the choking on food and fluids, the difficulty he has controlling the TV. I think the kids and I probably protect him a bit and make life pretty easy for him.'
Carrie’s biggest support network has been her family, Dan’s parents, and Dementia Australia.
‘After speaking to Dementia Australia, I just was on a high for days, because the things they suggested, things that we discussed, they just make sense.’
Carrie says when she sees other families doing ‘normal’ things – like going camping, riding bikes and kicking the football with their children – she realises just how different her life is, and at times her life can seem unfair.
‘I can't watch families at the park or families hanging out together doing stuff, it makes me feel like I'm missing out on something, and it's no one's fault. I always thought Dan would really shine when the kids were older, as he would take them skiing and bushwalking, all of the activities he loves so much. He can't do that with them anymore.’
But Carries admits they are lucky. They are also financially secure through Dan’s income protection insurance and they have access to his superannuation.
‘We have done some bucket list trips and have some more planned, and we're making some great memories for the kids. And it's sort of fun to do that stuff when you are young rather than [in] your 60s or 70s …’
‘When Dan proposed to me, I said to him we will have a lovely life together, we still do. We will continue to have a lovely life together, it's just not going to be forever. The diagnosis has thrown a bit of a curveball…’
‘So while it's awful living with an uncertain prognosis, every day we're lucky. He's still here with us and he gets to see the kids do more and more.’
For anyone whose loved one has just been diagnosed with dementia, Carrie advises:
‘Get the right people around you. There are people who you just need to let go of in your life because they are not helpful. They may never be helpful! Keep in touch with Dementia Australia. They have the right people, services and advice to help you navigate through this condition. Then you need to be kind to yourself. Remember that you are allowed to lose it sometimes, that's okay. Because it's hard sometimes.’
*This case study is based on an interview with a carer of a person who has dementia. This personal account is not necessarily representative of the circumstances of other carers or people with dementia or the challenges they may face, but it is our hope that it will give readers a greater awareness and understanding of the diversity of people’s experiences with dementia.
Names and identifying characteristics have been changed. Images are not representative of individuals in the story.