In 2003, less than a year after we married my husband Matt was diagnosed with Young Onset Parkinson’s Disease. Being a carer happened a little while later (it's time to update my story).
Well actually nothing changed immediately, things changed slowly. I didn’t become a carer overnight. My husband didn’t need any practical help. Emotionally we both supported each other. I started making his packed lunch for him though.
I told my employer, friends and family about his diagnosis but it would have felt very odd to have told anyone I had become his carer. We carried on with life, work, children. With the occasional medical appointment and change of medication, life was manageable. The future looked scary though and I wasn’t sure I’d be able to care for him when the time came.
...hang on when did that happen?
Our future changed and we adapted to it. Part-time work seemed like the best option for me after maternity leave, my husband gradually needed more help and I just struggled on. I was working part-time, running the home, looking after our two girls and caring for my husband ...hang on when did that happen?
I hit a wall, ran out of energy and everything became hard work. Early nights made no difference. Exhausted, I booked an appointment with my GP who calmly ticked a box on his computer to add me to the practice carers register and asked me if I had considered respite care.
It was quite a relief to be given the label of a carer. It helped me understand I was dealing with more than I had realised and needed to think about the support I had around me.
My new normal
We had some difficult times where it felt like this was the new normal and we would just have to get used to it, the occasional bad day would turn in to a whole week of bad days.
Then suddenly something would unlock and life got a bit easier. A change of medication, an understanding Parkinson’s Nurse, a powerful self-management group, and a helpful Occupational Therapist. These things all helped Matt, but in turn, have helped me. It has been important to be a partner in his health care.
Just as important though are the things that helped me. After the first visit to the Doctor, I realised I had some choices to make and that I would have to reset my focus and not lose myself to my caring role. Perhaps I could still have a career and do work that had meaning. Perhaps my education and personal development needed to continue. My faith, supportive friends and family and a great cleaner are my life essentials.
All this time we had been bracing ourselves for when Matt might need more hands-on care - that’s going to be when it gets really tough right? In reality, it turned out that lack of sleep and behavioural and personality changes due to medication side effects and the progressing condition were actually what had the biggest impact on me.
...and then along comes Covid-19
When Matt gets ill, it takes him a long time to recover and it can be exhausting. So my attitude at the time was, "no way is Covid 19 getting in this house!"
Two weeks before lockdown, I started booking online shopping slots, redeployed my cleaner as my community help and cancelled the hairdresser. I updated our emergency plan, switched the medication to be delivered rather than collected and ordered a wholesale box of sweets and chocolate. I filled the freezer with home-cooked food and it felt like I was ready for anything.
I can tell you are impressed!
To be honest, there are lots of other things I could have done that I didn’t do (there will always be something else). I was also spurred on by hearing about what other carers were doing and more importantly how it gave them a sense of being in control in uncertain times.
You can’t control everything though. I’ve floundered trying to support my two girls with studying at home, using my favoured approach of don’t get too involved and hoping for the best. Lockdowns meant they were with their Dad more on a day-to-day basis and felt their own roles as young carers sneak up on them too.
I struggled to switch off from work and caring responsibilities - my normal morning swim was a big stress relief for me, I didn't realise how much it helped until I couldn’t do it. Being socially isolated whilst being hyper-connected online during lockdown was not sustainable. I left my self-care to last which made it harder to get re-started.
So it was time to make some small changes that put me first - which included things that would be sustainable for the future too.
In fact, one valuable change I made during lockdown was "digitally distancing" - which meant picking a day where I would be without my phone or computer!
In December 2020 against all the odds, Matt had brain surgery to be fitted with a Deep Brain Stimulator. Results were better than expected which has led to a better quality of life, more independence, and reduced medication. There are still challenges with speech and balance and we know the condition will still progress, but wow what a change. It wasn’t until we had a follow-up review with the team that I noticed just how much I was still doing for him. Dialling down the caring wasn’t something I ever expected to do.
Caring creeps in again
Matt’s dad had a long spell in the hospital followed by admission to a care home. I’m really grateful that this caring role was definitely a team effort, I just had a small supporting role. This was when all the great tips I’ve learnt from the Mobilise community and our daily cuppas came in handy.
We set up a family Whatsapp group to keep everyone updated, coordinating visits, going through a Continuing Health Care Assessment and navigating care home lockdowns.
Delirium, agitation and eventually a Dementia diagnosis were tricky for everyone to cope with. But I’d learnt so much from the Mobilise community that I was able to share some strategies to cope with this. We didn’t need to argue with him or convince him of reality just help him to feel safe and loved and go along with the strange conversations, moving away from the upsetting topic.
Harry sadly passed away in August 2022, we miss him so much but are glad he was comfortable and well cared for.
Like many people of my age caring for parents will be part of life, Matt’s mum was diagnosed with Parkinson’s last year. For me, there’s just a small role supporting at medical appointments, trips out and occasional paperwork. I’ve got a great brother and sister-in-law who do the lions share, but I’ve also learnt not to step in and take over and to keep the teamwork going.
I’ll also keep sharing all the great tips and solutions from the Mobilise gang.