What I’d have done differently if I’d known my Mother had dementia

I thought I didn’t know much about dementia until I read a research proposal on unusual experiences of people living with severe dementia – such as confusion, hallucinations and delusions. Suddenly an old and squeaky door opened and I found myself looking into a dark and scary room in broad daylight for the first time.

I used to think that my late mother – who experienced several strokes and suffered from memory problems – had suddenly developed some severe mental health illness with delusions and hallucinations on top of everything else. I had a couple of friends with mental health problems and some of my mom’s experiences were ringing bells to me. Gradually, after she turned 80, she ceased recognising me as her daughter. While she appreciated my calls and visits I was, for her, sometimes a sister or a friend or a neighbour or even a cleaner.

My Dad was also not her husband anymore. He was either a suspicious stranger or a good friend, depending on mom’s mood. Her husband had been killed at war, she kept telling us; he had been a sailor. That would have actually been my grandfather whom I had never met. She said they had three small children and she was bringing them up on her own. In real life, there are only two of us, me and my sister; and it was my grandmother who had brought my mom on her own.

Mom also kept talking to relatives who were not around anymore. We did not want mother to be on any psychiatric medication at this age, so we could not bring ourselves to call a doctor.

Now I know that all those ‘unusual’ things can be quite ‘usual’ for somebody living with severe dementia. The thing is, mom had never been diagnosed with dementia, she begged to stay at home and my Dad insisted on looking after her on his own. So there were never any doctors or paid carers around the house, just Dad and me and my sister and a couple of neighbours. So you can imagine how upset we were at times. We tried to ‘reason’ with her, which made us all more upset. Mom’s ‘children’ were sitting on her bed beside the pillow: a teddy bear, a bunny and a little deer. She did not want to leave them even to join us for tea; we had to bring food to her bedroom. And it’s not that she couldn’t walk; she insisted on walking to the bathroom on her own. However trying to get her out to dinner table was a nightmare, what with her crying and telling us we were cruel and why wouldn’t we leave her in peace to look after her children.

She was in a good mood only in her bedroom, and really enjoyed it when I was telling her stories or reading old fairy tales. Dad also told her stories and she reacted to them quite lucidly. I remember Dad telling her about gardening they used to do together; how he missed her in the garden and maybe she would join him again someday. But she just said to him quietly, ‘Everything has its own time’. It sounded like the time of her gardening had passed, and she accepted it calmly and gracefully. She also kept saying that everything will be all right in the end; we should not worry.

What would I have done differently, had I read more about dementia while she was still alive? I probably would have accepted that it was this ‘time’ for her. I probably would have talked to her more about her ‘children’ and the sailor-husband, and did not insist on having meals at the dinner table. Or maybe I would have suggested bringing her ‘children’ to join us at the table? I suppose this would have made me a ‘liar’ to some extent; and wouldn’t my Dad have been upset? He has always been a truth seeker and considers himself a rational thinker up to this day. I still don’t know the right answer. I suppose it’s all about striving to understand what’s the best for whom, and where and when.

About the Author: Yulia Kartalova-O’Doherty

Yulia is a social researcher with practical experience of designing, executing and managing qualitative, quantitative and mixed-methods research in the areas of mental health and psychological wellbeing. She has been Research & Development Manager at the Mental Health Foundation since January 2014.