Living with dementia magazine August 2010

Elizabeth Ashton and her mother, Peggy Moule, have always valued their independence. Here, Elizabeth writes about their struggle to adjust since Peggy was diagnosed with vascular dementia

Becoming impatient when things didn't happen straightaway was just one of the many changes in my mother's behaviour that had occurred over recent years. Other changes happened too - lack of concentration, inability to learn how to work a new piece of equipment, and getting into a muddle with appointments.

Identifying those and other changes, and understanding their cause, had taken a while, but we finally learnt my mother had vascular dementia.

To us, vascular dementia was about short-term memory loss, inability to plan and weigh up different options, mood swings and confusion late in the day. Even more distressing was my mother's awareness of losing a lot of the abilities needed to live an independent life.

Since the diagnosis, we have both been on a steep and frustrating learning curve. I have had to learn to do much of my mother's thinking and planning for her and she has had to learn that others may know best, not something that comes easily to her! 

I have learnt that she has lost the concept of time. Yesterday means nothing. Indeed, much of what was said yesterday has been completely forgotten. Tomorrow doesn't mean a lot either, let alone next week or next month. She may ask what day it is today four, five or maybe six times within the space of a short conversation.

We have not had very much professional help. I sought as much advice as I could, but I don't live close by and was dependent upon phone conversations when I managed to catch someone in their office.

One of the few pieces of advice I did receive was, 'Don't give her any choices, tell her what to do.' This may be understandable given the muddle that dementia can cause to planning and decision-making, but it is so difficult when having choice has been such a valued part of both our lives. My mother refuses to do what she is asked and it feels like treating an 85-year-old like a five-year-old.

I have to remember to write everything down for her; such as what the doctor or optician said to her during a consultation, for as soon as we are out of the consulting room, she will have forgotten. I now go in with her to hear what is being said. I try to ensure she answers questions appropriately and does not begin relating a story about herself or her past experiences. I bite my tongue, desperate not to interrupt and correct her because if I do it really upsets her. She says, 'You don't know, you weren't there.' But I do and I was.

In the period before her diagnosis my mother had started telephoning me to find out where I was, accusing me of not telling her what I was doing. This had never mattered much to her in the past. We had weekly telephone contact but had never been so close that we chatted about everything as some mothers and daughters do. I hated being challenged about what I was doing and when, I was simply not used to it. However, I have come to understand that my mother needs to know where I am even if it is some distance away, so that she can feel safe and supported. Her life needs as much order and routine now as possible.

The problem with this illness is that no one can tell by looking at my mother that she has dementia. It is only when there is an attempt at a conversation with her and she repeats herself several times over that others realise there is a problem.

I have learnt to tell her things several times until I am confident she has absorbed the information. I have tried hard to encourage her to write key information in just one place, her diary, although this has not always been successful and we still hunt for that elusive piece of paper. I have had to learn not to argue, not to correct her, to listen and not challenge her interpretation of facts. I have had to learn not to give her a choice because that stresses her, and most importantly, I have had to learn to be patient.

However, my mother, and thousands like her, need others to learn as well. In an ideal world receptionists would follow up appointments made by telephone with a letter confirming that appointment. Care staff in the sheltered housing schemes would use the resident's diary to let them know what is happening that day; and would repeat advice and instructions.

I, like many others, do what I can to raise awareness of dementia. However, we have a long way to go until this distressing illness is understood by everyone, not least, the professionals in the first line of contact with those who are living with this disease.