My mother was diagnosed with vascular dementia in 2009. She’d had a stressful few years, looking after my father who died in 2007. Shortly after he died, I noticed she wasn’t coping very well, which was understandable, but then I realised it was more serious. Her memory was extremely poor and she would often forget what day it was and ask the same questions.
At first she couldn’t say what she’d had for lunch, then couldn’t remember if she’d eaten at all. Next, random things began to happen that posed a threat to her safety and wellbeing.
One day she drove her car to the supermarket, bought her shopping and then walked home, forgetting about the car. The next day she rang me and said the car had been stolen.
She began to forget to wash. Some days she didn’t know how to dress appropriately and opened the front door to strangers while partially clothed. Her hygiene suffered. She seemed incapable of doing basic tasks. She often called me at 4am thinking it was 4pm and wondering why I hadn’t come to see her. I arranged for her to have Meals On Wheels and a home cleaner, as well as private carers, but the care team were concerned she was struggling to cope when they weren’t there.
One evening she rang me and told me that there was a group of people she didn’t know in her living room who were refusing to leave. After speaking to her for a while, it became apparent that she was confusing TV characters with reality. Reality no longer existed for her. Or if it did, it was her reality, not what really happening.
Back in time
Some days she thought she was in her 20s and still married. She spoke to me about men she was dating as though it was happening now and we were teenage pals, experiencing the highs and lows of dating together. Yet she still mentioned my father sometimes and clearly missed him greatly. One day she rang me and said he hadn’t come home from work. I had to gently remind her he had passed away, and I felt truly awful as she broke down in tears and grieved all over again. I learned that it was best to change the subject when she asked after him in future and I’d certainly recommend that other carers in similar situations do the same. The heartache for the person can be unbearable otherwise.
The final straw was when she was found outside her own house in December without a coat late at night. Reluctantly, I accepted that she needed 24 hour care and moved her into a home. I knew mum needed round the clock care that I couldn’t provide.
What really made the difference though, is the support from her neighbours and local friends. Their help included getting her shopping, walking her home if she was confused and keeping a spare key in case she locked herself out (which she frequently did). Without their care and support, I think mum would have struggled so much more and her life would have been much harder. Looking out for anyone with dementia in your community, doing your bit and just checking they’re OK from time to time can make all the difference.
A person with dementia will often be struggling to make sense of what’s going on in their world. Their world can change. They may revert back to younger years. Mum would get confused and know something wasn’t quite right, but not know why. Your patience as a carer will be tested. Work on being more patient. It’s not easy when you’re tired, or you’re being asked the same question time and time again, but remember the person is confused and probably frightened. Above all, just do your best and if you can look yourself in the eye and say that’s what you did, then you should be very proud.