Should I stay or should I go?

When Vicki first noticed changes in her husband, she didn’t have a lot of support.  

“Our situation was a bit complicated because we’d only been married for three years by the time Michael’s symptoms became apparent,” Vicki said.  

“We’d therefore had a very short history and, with no shared children or grandchildren acting as the glue to keep us together, that obviously made things harder.  

“I first started to notice something was wrong when Michael’s working day kept stretching up to 12-hours. Glasses were being left at the restaurant or the movie theatre. His preparation for things took a lot longer. He was finding it harder to manage daily tasks. Also, his visual awareness was changing. He wouldn’t see the milk in the fridge, for example. I started to realise his cognition was somehow being impaired, but at that point I didn’t necessarily think dementia, due to his age. 

“This all really impacted negatively on our relationship. When I raised my concerns with close friends who had known him a lot longer than I had, they didn’t seem to share my worries as to them the changes were so subtle that they hadn’t noticed. 

“Even his GP said, ‘Michael is my patient, if he’s got an issue, he’ll take it up with me. Go home and be a good wife!’. So, I ended up dealing with my concerns pretty much on my own, before seeking counselling. I was really fortunate to connect with a great and very supportive counsellor. 

“The role of wife has changed a bit since Michael’s diagnosis. I now refer to myself as his care partner. I had to make a decision in those early days, do I stay or do I go? I wasn’t sure whether I could even do this. And the dream I had of what our lives together were going to be quickly evaporated. 

“It’s been challenging and exhausting, but I’ve learned a lot along the way. If I knew back then what I know now, I think things would have been very different.  

“We have reinvented our lives in light of the diagnosis, because we’ve had to. We have taken a strength-based approach to Michael’s condition. We keep doing the things he can do. He still goes to the gym regularly and that means I get to do my own self-care during that time. He regularly does music therapy, which brings him so much joy, and enables him to self-soothe.” 

We thank Vicki for sharing her story. If you care for someone who lives with dementia, we are here to help. Call the National Dementia Helpline on 1800 100 500. We are available 24 hours a day, seven days a week, 365 days a year.  

Want to know more about dementia and relationships? Check out these articles: 

How do you navigate intimacy with dementia? How does dementia impact a person’s ability and desire for intimacy? Can people with dementia give consent? In this article we explore these topics and provide practical advice for couples. 

Can aged care residents continue or start new relationships in care? Aged care residents have the right to access safe and high-quality care and services. But what happens if a resident wants to engage in intimacy, and should aged care staff interfere? 

Does dementia impact your libido? When Phil was diagnosed with dementia, he knew things would change but one symptom he didn’t expect was his lack of interest in intimacy. 

Partner, carer or both? We talked to people living with dementia, their partners and a Dementia Australia counsellor to find out if you can still maintain your partnership after a diagnosis of dementia. 

For more resources about relationships, intimacy and dementia visit our library guide here: https://dementia-org.libguides.com/relationships-intimacy-and-dementia 

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