Harpreet’s wife Priya was diagnosed with MS in 2009. She had noticed a few early symptoms before her diagnosis and had been back and forth to her GP looking for answers.
‘Prior to her diagnosis, Priya had been experiencing a few uncertain symptoms in her body but none of us put together that it might have been MS.
‘For the previous 2–3 years she noticed something and had been to her GP who recommended a CT scan, which came up fine. We later found out that you need an MRI not a CT to show indicators of MS. Priya had a twin sister who had MS and was diagnosed at a younger age, unfortunately her condition deteriorated very rapidly to the point where she passed away in 1991.
‘As the GP we consulted had previously treated her twin, we were extremely upset that he didn’t suggest an MRI as an earlier diagnosis could have helped with earlier treatment, and potentially a substantially better outcome.’ Harpreet says.
Not long after her diagnosis, Priya’s conditioned developed to the point where she needed to stop working. She had been working part time as a teacher while building her own homeopathy and complementary health practice, however the extreme fatigue Priya was experiencing made working too difficult.
‘It was quite sudden, no one saw it coming. She had had a substantial relapse and by the morning she couldn’t get out of bed, couldn’t stand or anything. The shock of the situation really affected her a lot,’ Harpreet says.
Beginning to take on a carer role
Harpreet says the level of support Priya needs has gradually increased over the years.
‘With the NDIS coming in a few years back, we were able to have a support worker come over to help Priya once or twice a week for short periods, and slowly increasing, which was very helpful. However, after Priya broke her leg in 2022 the level of support she required increased significantly and I was honestly so grateful that the NDIS was there and available to us, despite the difficulties in finding reliable and capable support’
‘We didn’t qualify for any government funding previously as I needed to continue working, so the NDIS has been transforming for our family. We are now able to engage support workers, which has been very helpful.’
With Priya increasingly unable to help to complete her usual day-to-day tasks, Harpreet began taking on more responsibilities.
‘A couple of years ago we decided to do some travelling together and I had planned an extended time off work, however, soon after stopping work Priya broke her leg. She took a long time to recover, and unfortunately never got back to where she was previously.
‘After diagnosis, responsibilities for managing the home and family became mine, including making meals, cleaning-up, shopping and generally keeping the home running. Priya could do some things early on after her diagnosis, but over time this reduced and for quite a few years now she has been unable to manage any such activities.
One of the biggest adjustments to his new role as a carer for Harpreet was having to pull back from his working life.
‘My work used to involve a fair bit of travel and long hours which was no longer possible as Priya’s MS symptoms became pronounced quite quickly.
‘I needed to take something closer to home without travel or long hours as I could no longer leave Priya alone in the evenings. This meant taking roles with reduced responsibilities, and further reducing this over time to make sure I could support Priya as her needs changed.
‘I stopped work around mid 2022. Initially, it was meant to be a temporary break but after Priya’s accident, it became too hard to go back to work again and I effectively moved into early retirement. It took me a long time to adjust. Like a lot of people, you associate a sense of personal esteem with your work and your ability to work but I have come to terms with this now,’ Harpreet says.
The impact on the family
Harpreet said they both worried about the impact of Priya’s MS on their children.
‘Initially when she was diagnosed, especially with the memory of what had happened to her twin sister, it was a really devastating piece of news. The worry about what the future looked like was monumental. Of course, there were also concerns about how this would impact our children. My daughter had just finished high school, and we still had two boys at school.’
‘Going through these challenges at home while also going through their high school years and university did affect them but in a funny kind of way also brought the family together a bit more.
‘The kids have always been very independent thinkers in their own right and have all found their own ways from a work and life perspective. We are incredibly proud of them. They had all moved either interstate or overseas for different periods, and they’ve all made conscious decisions to be in Melbourne now for which we are truly overjoyed. They want to be here to enjoy spending time with their mum and so she can also feel their full support.
‘I don’t want them to become carers for their mum, I want them to follow their own life journeys, wherever it takes them, without being constrained to the best of my abilities’
The importance of finding your village
‘There have been lots of challenges but plenty of nice things have come out of this as well.
‘Some of our friends have shown their strength in such wonderful ways that I wouldn’t have expected. They have turned up and supported Priya and me in so many ways. Even our kids’ friends and especially their partners have been truly amazing, it has been incredible to watch.
‘The last few years there’s been a few things that I think have been very beneficial for Priya and myself. Firstly, our network of both medical and allied health support is so important. Finding the right supports can be difficult but I would say it’s worth investing the time to identify them.
‘I would also say, if you can see there’s a potential need for a service, get on top of it as soon as possible as it can be incredibly hard to organize this when you actually need it’.
‘Secondly, and very importantly, I would recommend you maintain your friendships — these are an incredible part of your informal supports. Don’t let them go. For both the person living with MS and the person caring for them. Just their presence in your life and moral support can keep your spirits strong.’
Taking time to recharge your batteries
‘We all walk around our lives with multiple roles and multiple hats. I am a carer but I’m still a husband and a father first.
‘While I know I have a very important role as a carer, I don’t want it to define my life. I try to maintain some level of independence and it’s important for me to get out and about as much as possible.
‘I also try to maintain a level of physical and mental fitness. Eat well. Take some time out for myself. I’ll take some time to read. Otherwise, it’s easy to fall down that hole and this can lead to depression for the carer.
‘One of the things I’ve done for myself is to throw myself into ‘doing’ mode rather than ‘thinking’ mode. It’s a coping strategy on my part, getting on with what needs to be done rather than dwell on the condition and the impact this has had,’ Harpreet says.
‘I was offered the opportunity to speak with other carers recently and I found that very valuable. Some are dealing with situations that are more progressed so they are able to share what our journey may look like in the future and how they have dealt with it and that has allowed me to become more prepared. Practical advice and practical tips from others in the same situation have really been very helpful.
‘I am a voluntary committee member with the People with MS group, an advocacy group run for people with MS by people with MS. I’m very grateful to take on board anything they share for how it may apply to our own situation and I’m also very happy to share anything I may have to offer.
‘It’s certainly been a tough journey, and I don’t think it’s going to get any easier. Ultimately, we all deal with situations in different ways. For me, over time acceptance has become the most important thing.’
13–19 October is National Carers Week. MS Plus offers a variety of carers’ supports, find out more about the Plus Carers Program. https://www.msplus.org.au/support-services/information-and-advice/carers-program