Do you remember the second part of the definition in my post titled ‘My Story as An Unpaid Carer - A Carer Profile’? It stated, ‘needs support to manage a life of their own.’ This part is often not considered by anybody; least of all the person caring and that can have a huge impact on our health and well-being. So how have I been helped or helped myself?
It goes without saying that our family and closest friends have all been the biggest contributors to our well-being as a family, and their support has been invaluable. I’m very mindful that they’ve also been impacted by Harrison’s condition to various extents, so I’ll be sharing their perspectives in future posts. We certainly wouldn’t be coping as well as we do without them.
Other individuals who have supported me by thinking ‘outside the box’ include:
Responsive Medical Staff – I’m referring here specifically to the to the two incidents in my post ‘His Story - Post Diagnosis 5 - 8 Months’ where I briefly wrote about my collapse from exhaustion on the children’s ward and again when the community nursing team found me barely able to stand at home due to my relentless caring schedule.
In both these examples the nursing staff immediately recognised that I needed support to be able to continue my caring role. Without delay (and no bureaucratic form filling!), they reorganised their schedules to temporarily look after Harrison so that I could take a short rest. Thanks to their compassion, this was all I needed in these circumstances to re-energise me.
‘Can Do’ Administrators – In the past couple of months I’ve had a great experience with two non-clinical hospital staff members. One has chased different departments to save me calling each one and the other gave me her work mobile number so that after I’d organised an appointment for a different department, I was able to call her directly to co-ordinate an appointment in her department for the same day. Only having to travel into London on one day for multiple appointments not only gives us time back (a single appointment can disrupt a whole day once travelling and clinic waiting times are factored in) but also reduces our fatigue generated from the forward planning and travelling to and from the hospital. Small acts of kindness that make a big difference to a carer’s workload.
As I mentioned in my carer introductory post, the carer support in an individual’s own local area will vary, and although in theory there are carer support groups, the only carer support I’ve ever had, is from other parents in online forums. Having said that, I’m the sort of person who will seek out my own coping mechanisms, so most of the strategies below are my personal approaches to keeping myself moving forward:
Voluntary Work – Enables me to use my skills, knowledge and experience in a positive way to improve the lives of others. It gives me a sense of fulfilment without the pressure of a regular commitment. It also helps to improve my confidence and self-esteem, develop new skills and / or improve existing ones. Examples my voluntary work include; Chair of a national charity, patient and public engagement opportunities through the Royal Brompton hospital and national Peer Leader Network.
Dance Classes – I’ve always danced, and pre-pandemic I would attend several classes per week. It was my escape; I couldn’t think about anything else when I was concentrating on learning the routines or improving my technique. It was also where I’d developed some good friendships so it was my main source of socialisation too. It was the only place where I was known as myself and not for being Harrison’s mum.
Lockdown gave me the opportunity to try dance classes from different providers. Although online classes didn't work out for me with the dance school I used to attend in-person, everyone had to become more flexible. It no longer mattered where anybody lived and I suddenly had access to virtual classes being offered worldwide. Not knowing the other participants and with everyone being online, worked much better for me. Many of the online classes have now ceased but I’m still able to subscribe to virtual classes which actually fit really well around my other commitments.
Crafting – I love creative activities and usually have many different types of projects on the go simultaneously, which means a constantly messy work area! Unfortunately, I don’t usually start working on my projects until about 9pm, by which time I’m already falling asleep! In June 2020 I fulfilled a long term goal of learning amigurumi. I'm slowly building up a large community of crocheted animals. Many of my unfortunate friends and family have been the recipients of my bespoke creations! This was my first attempt:
Video calls with friends – When the whole country locked down, a friend for over 35 years who lives abroad, started a regular Sunday night video call with me and two others. We’ve kept it up every week since and have all benefitted hugely by reconnecting in this way. Incredibly, we usually speak for nearly three hours but never run out of anything to say! It's become the highlight of my weekend. I also have video calls with other friends that I’d usually have met up with socially.
Writing blogs – I wrote my first blog in 2009 to inform friends and family how Harrison was getting on following one of his major heart surgeries. It meant that I could give informative updates without taking me away from his bedside for too long making phone calls. From then on, I continued writing and sharing short blogs for holidays and other hospital admissions.
When lockdown started in March 2020, I wrote a private lockdown blog (effectively a diary) every day for the first 600 days to manage my mental health around our forced isolation. I still add to it sporadically. Writing things down really helps to clear my head.
The purpose of this blog about 22q Deletion Syndrome is more than that though. My aim is for it to be a tool to educate, support and inspire too.
Having established my coping mechanisms it's not all rosy. Some days I have a complete mental block and can’t function. However, I’ve learned to give myself some time, whether it’s a few minutes or a whole day, and by choosing one of my personal coping strategies, I’m able to get myself back on track and on with the job of caring for Harrison.
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