“You need to practise self care so you can keep on caring,” said the course facilitator.
That was the moment the mask slipped.
The promotion of self care is not about the carer, it’s because the Irish Health Service has “no money”, so all it can offer to many desperate families is advice on selfcare. Not respite, not supported living, not more help, not more therapies, not better services. Just advice, so we can keep doing the same thing for longer and therefore not become a problem, a family in crisis, an emergency, an embarrassment.
Because that would NEVER do.
It was one of many lessons I learned during the past ten years.
I also learned that everything changes. Ten years ago social media was a source of wonder and hope, a way to deepen connections with friends and family, a way to ease isolation and find others facing similar difficulties in their lives, a place where you could have conversations with anyone, anywhere in the world. Now my accounts are locked down and I censor everything I post very carefully indeed.
In similar vein I learned that trauma means people may be triggered by the feelings and opinions and expressions of others. So I keep my big mouth shut much more often than I did ten years ago. Especially on here.
I learned that life goes on after someone you love dies. It’s different, there’s a void that can never be filled, but you learn to carry it with you through the days.
I learned you cannot stop people judging you, your family and how you live your life. But I’m trying to be less judgemental of others.
I learned that the wise woman who told me life never really settles was right, as there will always be new joys and sorrows, challenges and gifts.
I learned that most of the online advice on how to look after your mental health and improve your life comes with one unspoken caveat: not applicable if you’re a carer.
I learned that readers enjoy emotional posts, but not anything overly negative. Another reason I publish less! There will still be posts on here when I have some significant news about my profoundly disabled daughter. But I’m not sure how much else I want to share.
I learned that nothing changes when your youngest disabled child turns 18: You’re expected to soldier on, but now without information, training or parental authority.
I learned that even little things can send me into complete overwhelm. I nearly cried the other day when I heard that an important state document will no longer be posted out to me. Instead I have to go and find it online, hope my password works, hope the site works, hope it doesn’t crash, then download it, save it, print it and hope the printer doesn’t run out of ink. It might take me only 5 minutes, but might take 50. It becomes yet another chore to add to the long long list.
I learned that I want to be a parent but not a carer.
I learned that I have my limits, physically, mentally and emotionally, and they have all been tested over the past ten years. As I *may* have mentioned before, this crazy rollercoaster ride we call life is going faster and faster and my 60th birthday looms large. Already I cannot manage everything in my life, or give enough time to those who need it. So while many of my peers are beginning their well deserved retirement, the years stretch ahead for me with no offers of any break from caring. Ever.
I know it’s up to me to change this while I still can. Before I give up. I know my young adults deserve better. I also know I can only change myself and my life, so that is what I plan to do. So you won’t be surprised to learn that this is my New Year’s resolution.
Of course there were positive lessons too from the past decade..
I learned I love dancing, wall climbing and word searches, but not gardening or administration or housework!
I learned there are good people everywhere, including many who work within the Irish Health Service.
I learned I have a wonderful support network, which has never failed to be there for me and my family.
I learned that exercise and spending time with people in the real world is the best medicine for me and my feelings of overwhelm, anxiety and depression. And so I began 2020 by pushing B around a Parkrun in St Anne’s park. It was a beautiful, bright and crisp morning and my spirits lifted to be surrounded by so many other people determined to start the decade with hope and positivity. Maybe I can change the future after all.
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