Maintaining a Sense of Self and Sanity

Maintaining a Sense of Self and Sanity

Written by Jane Robinson

| 3 minutes
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What do you do about ‘you’ when you’ve given up your life to care for someone else?  How do you prevent yourself from drowning in the needs of others?  I’m not sure I consciously asked myself these questions, but I do remember feeling I was disappearing under the weight of expectations, mine included.

My husband, Ash, was diagnosed with Young Onset Dementia in December 2017 at the age of 58, and I became his full-time carer two years later. Both of those events were momentous in their own way and between them I could feel myself disappear, but what to do about it?

It took me a long time to realise that, even though I wasn’t the one with the diagnosis, I was important too. Eventually I decided that if I didn’t look after my own well-being I wouldn’t be any good to Ash either, and so something had to change.

What have I done, I hear you ask. What’s made the difference?  

The very first thing I decided to do was to lose weight and get fit. I began by walking more than I ran, but before I knew it I was running for longer spells than I was walking, and eventually I was fitter than I’d been since my teenage years.

Then I combined the fitness thing with a healthy diet and the weight began to drop off.  Not only that, but I changed shape and developed a waist. Suddenly I could get into clothes that I’d only dreamt about in the past and I began to feel good about myself.

Next, I decided that, wherever possible, I would only buy things that made me smile.  Obviously, there are some things that, by their very nature, are boring (vacuum cleaner bags spring to mind for some reason), but others really can be fun. I bought a new washing up brush that looks like a flower in a vase. I needed a holder for my phone and bought a mini striped deck chair. And so it went on.

The biggest test to my state of mind came a year ago when my husband decided that he would much prefer to have our huge bed to himself and I found myself banished to the spare room. This made me swallow hard but I put my shoulders back, thought hard and decided to make it a very special place. I bought a new mattress and beautiful bedding, painted the chest of drawers and bedside table and then added a table and chair. It’s now the loveliest room in the house and it’s all mine. Sometimes it’s about changing your thinking.

Thinking outside the box also came in useful a few months later when I found myself emotionally drained and needing some time to myself.  

A friend comes in once a week so I can have a day off, and I try not to waste that time.  This particular week, however, I was desperate to just do nothing, and remembered a website we’d used a couple of times when on holiday waiting for an overnight flight home. We’d booked a hotel room through the site (www.dayuse.com) just so that we had a base for that one day. I had a lightbulb moment and looked to see if there were any hotels near us that did such a thing and, sure enough, I found one about an hour away. I booked it (11am to 5pm) for my next day off, took lunch with me and spent the day in silent splendour. I read, slept, read some more, listened to the radio and had a perfectly wonderful time. Since then, friends have come forward with the offer of the use of their houses if they’re ever away. Sometimes all it takes is a few hours of solitude to get you back on track.

There are many more ways I’ve reclaimed myself, but you’re all busy people and I think this is enough for now. However, if you want to know more you can find me at www.memoryfortwo.com and even have your say.

Jane Robinson is a full time carer for her husband Ash, who was diagnosed with Young Onset Dementia in December 2017, aged 58. You can follow Jane and Ash’s daily ‘adventures’ at www.memoryfortwo.com, find her on Facebook, or follow her on Twitter @memory_two

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