In 2003, less than a year after we married my husband Matt was diagnosed with Young Onset Parkinson’s Disease. Becoming a carer happened a little while later (It's about time I shared my own 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 with 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 attempting to create a freelance business whilst being a mum, working part-time, running the home 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 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 have had some difficult times where it felt like this was the new normal and we would just have to get used to it. Then suddenly something is unlocked and life gets 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 help Matt, but in turn have helped me. So, it's been important to be a partner in his health care.
Just as important though are the things that have helped me. After that 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, 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.
...and then along comes Covid-19
If Matt gets ill it can take him a long time to recover and it can be exhausting. So my attitude has been - "no way is Covid 19 getting in this house"! Two weeks before lock down I started booking online shopping slots, redeployed my cleaner as my community help and cancelled the hairdresser. I’ve updated our emergency plan, switched the medication to be delivered rather than collected and ordered a wholesale box of sweets and chocolate. I’ve filled the freezer with home cooked food and 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 hope for the best. I’ve struggled to switch off from work - my normal morning swim was a big stress relief for me and I haven’t really found a replacement for that. Living in social isolation whilst being hyper-connected online is not sustainable. I’ve left my self-care to last and I think this is making it harder to get re-started. So it's time to make some small changes that put me first, things that will get me though lockdown and things that will be sustainable for the future too.
In fact I've made a start with my "digital distancing" - the whole of Saturday without my phone or computer!