My mum was recently diagnosed with a form of dementia. She is in the early stages and I am pleased to say she is living successfully on her own. But initially I was worried about how she would cope. My home is over an hour away from hers and, though I visit weekly and we speak regularly on the phone, it is much harder to be supportive from a distance. These are the things that have helped.
Keep a diary
One of the biggest problems for mum is her short-term memory. She is very good at keeping lists to help her remember but now she also keeps a diary. Every day, sometimes three or four times, she jots down a little running commentary of what has happened. Each week when I visit, with her permission, I can read it. She may write down that the TV remote has broken, or a family friend has called with news. I get to find out what needs fixing and learn what her friends are up to, which I can then remind her about another time if she forgets.
Taking tablets was entirely new for mum. We had to experiment quite a bit to find the right place to put them so she did not forget. In the end, having them in a daily pill organiser or dosette box, labelled with the day, really helped. We put it in the bathroom so she would see it first thing in the morning. I could check with her on the phone or in person which days were left for that week so we both knew she was on track.
Tell other people
In these early stages, it is understandable that you might not want to share your diagnosis. But in our experience, telling friends and neighbours has made a huge difference. There is no mystery about why mum cannot remember or may repeat a story. She has dementia. Mum wants to be open about her diagnosis. She has found it very beneficial to be honest so that people are not scared or unsure about how to react.
Not being on the doorstep makes it almost impossible for me to help with those unexpected things. We have experienced a faulty and rapidly defrosting freezer, and a fuse blowing so no lights worked as darkness fell. Who do you call? Friends and neighbours are great but we did not want to take advantage of their kindness. So, we have made an arrangement with a local handyman who is happy to be ‘on call’ for any crisis. He can pop over, see what’s wrong and with any luck, fix it too. He can also give me some perspective on the problem so I know whether I need to make my next visit a bit sooner.
Don’t plan too much
For any of us, it can be quite stressful to have a full diary and lots to do. With dementia, juggling dates and times is not always easy. Keeping to a routine and making sure days are not too busy means you can think more clearly. Mum is very good at writing future events down in her diary and I will add any extra plans that might go with it, like the time I am picking her up. If she is feeling anxious about arrangements, she can feel reassured by checking her diary and knowing everything is in place.
Written by Penny Bell
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