Heather O’Neil cares for her mum Margaret who lives with dementia. Over the years, she’s developed some great strategies and creative ways to make the caring journey a little easier on everyone.
Over the next few months Heather will be sharing all she’s learnt (and is still learning) with Unforgettable in a series of blogs about creative caring.
But first Heather explains how she got here…
In 2012, after many memory tests and finally a CT scan, my dear mum was diagnosed with Mixed Dementia. I had suspected things weren’t right for some time, but as I lived more than an hour away it took time before I realised the full extent of the problem. My Step-dad suffers from Heart Failure so is often quite unwell, but he did a good job covering things up. For a time they managed … he was the “mind”, my mum the “body” and with my help on the weekends they got by.
But by 2014 I realised that the time had come for them to move closer to m so they moved to a retirement flat two minutes from my house. At first, I was able to carry on working full time but as my mum’s memory declined I needed more hours in the day to get everything done! I tried to introduce a carer for a couple of hours twice a week hoping this would be the answer. Instead, it made things even worse as it upset Mum so much she would call me all through the night crying because she believed the carer had stolen her things. No sooner had I reassured her and fallen back asleep, the phone would ring again. I persevered for three months hoping she would come to accept the situation, but in the end I was so exhausted, and she was so upset, that I decided the best thing would be to reduce my hours at work and spend more time with them.
I am now at mum’s every morning for three hours and again after work if I am needed. I do all the cleaning, cooking, shopping and personal care, and much more of course. Thankfully, I am well supported by our GP and Long Term Conditions nurse but being an only child, I have no help and haven’t had a night away or a day’s holiday in over three years. I am OK with this … caring for my mum is such a pleasure and I never want to look back and wish I had done more, though if I’m honest, it is emotionally and physically draining.
What really helps me
1. Online support
I am a member of several online dementia groups. These internet groups provide a source of support 24 /7 – day or night there is always someone there who has experience of what I’m going through. and is willing to discuss what they did or how they coped. I have made some wonderful friends from all over the world and it’s no longer a lonely journey. One group I’d recommend is called Purple Sherpa Basecamp.
2. A Day Clock.
I have one in the living room and one in mum’s bedroom. She orientates herself with this clock and, combined with her calendar, she feels more in control as she can check the date on the clock herself and look at the calendar to know what she’s doing that day.
3. A white board
This is really well used and helps us organise appointments each day.
4. A personalised Time Line
I created this myself and it was really easy to do. I have one framed on the bedroom wall and another one laminated on the kitchen cupboard. My mum has had a very interesting life living in three different countries but she often gets confused as to where she is just now. This timeline really helps.
Next time I’ll be talking about some of the fun activities mum and I have got up to in the past few years. I hope you might find something to help you too!