https://faststream.blog.gov.uk/2016/05/16/living-with-dementia/

Living with Dementia

This is the first in a series of interviews carried out by a group of civil servants that have dedicated time to raising money and awareness for dementia via ‘The Fund’, a Fast Stream initiative. Alison Leishman, Home Office, interviewed Kate about her and her father’s experience caring for her mother who is living with dementia.

Last month, I had the great opportunity to meet Kate. In a fascinating 4 hour chat, Kate shared with me her and her father’s experiences of caring for her mother who is living with Dementia. Knowing a little about Dementia and being interested in its impact on people’s lives, it was eye opening to hear Kate’s accounts as, other than first-hand experience, nothing will ever give you the true insights into the everyday lives of those people living with Dementia and those people caring for them. And it is these people who we can consider true Dementia Friends.

What were the first signs that made you and your family wonder about your mother’s health?

“It was mainly what my dad noticed. My mother started to forget things and she was doing unusual things like putting the post into the fridge. But at first there was very little evidence and when we visited her we didn’t notice anything unusual. The first thing that I did start noticing was that she didn’t join the conversations as much as she used to. I don’t know whether it was because she couldn’t follow the conversation or the kind of thing we were talking about. She didn’t really tell stories anymore, possibly also because she couldn’t remember. Although, turns of phrases or things that everyone would say to keep the conversation going, all those things were there, until recently.”

“My dad felt very much like he had to keep an eye on my mother all the time. It used to frustrate him a lot because they had all the routines, such as where the recycling goes, where knifes are kept and where the keys go. All of these habits were getting very chaotic. Items were starting to go missing and keys were disappearing. Therefore, my dad would take over more of the daily running of the house, so he started to do more of the cooking and to be more in control of the shopping.”

“However, she used to be quite good in covering up her difficulties with her memory. She would avoid saying people’s names. Once I realised what she was doing, I started saying things like “Oh my daughter Lily” so that she would realise who I was talking about. I also started saying who I was at the beginning of our conversations. Even when she recognises me and says “Oh, you are here!”, I respond “Yes it is me, Kate.” to make sure that she also knows my name and doesn’t have to worry about it. I am very conscious of doing it in a way that doesn’t make her feel bad. Since she has been in the care home, we have the same conversation again and again. But at least we are having a conversation. So I don’t mind that I am telling her the same thing over and over again. At this stage, the most important thing is to communicate.”

"But the emotional side seems to remain and it almost became less inhibited. When she is feeling glad to see me, she is very affectionate and really happy. And when she first went to the care home, she said things like “That nurse is really fat” quite loudly. So this is again the lack of inhibition. But because of this, I seem to get a much more direct connection with her, sometimes good and sometimes not so. This was also something we were told about before and that this was one of the features to expect.”

What was the process from noticing changes to getting a diagnosis?

“My parents had the same family doctor for a long time, so my mother’s doctor knows her quite well. At one point they raised the memory issues with her doctor and following from that the diagnosis involved a monitoring process. But there were no diagnostic tests. Eventually, my dad got someone to help out with my mother a few times a week. Once my mother had started receiving medication, which is supposed to slow down the memory deterioration, they got to see an Alzheimer’s nurse for over 3 months. Once she was moved into residential care, we saw a psychologist a couple of times. At that time she never had an official diagnosis of Alzheimer’s disease. However, the main thing was that people around my mother became aware of the circumstances which enabled us to help her better. Dementia is a condition that also affects the people around the person. In some cases it can even affect them more than the person who has dementia because they may sometimes not be aware of the things that they are doing.”
What kind of support or care provision did you/your family/your mother get if any?

“When she was still living at home with my dad they did get support. He got respite once a week on a Wednesday afternoon and somebody would come in on a Monday to do some activities with my mother. This was partly because my dad was also ill so he needed more support. This support allowed him to have some time for himself and get some rest. But there wasn’t anything else in place when she was living at home. My dad was the main carer and it was very hard because at that point she sometimes had delusions. Once he told me about a day when she repeatedly packed her suitcase because she wanted to go home and didn’t realise that she was already at her home. This was really hard for him because those episodes would last a reasonable about of time. So it might be all afternoon that he would have to unpack her suitcase and try to explain to her where she was and that this was actually her home. I think he could have done with some support then, in terms of knowing more about how best to deal with this. Now that she is in the care home, the staff knows what to do. And they know what works and what doesn’t work.”

What other support is there that you think is helpful and what more could be done?

“With Alzheimer’s disease or any sort of Dementia, the person is going to get worse. I think it is great to do things like memory walks and memory boxes so that the memories that are there can be explored and celebrated. I think, depending on your circumstances, living with Alzheimer’s disease can make things in your day to day life a little bit more confusing. You might not remember where your room is or what you have eaten. Therefore, I think it would be nice to go back to the point in time where they are in terms of their most recent memories. I would like it if the care home would do more of exploring the things that my mother can remember. Because all of those early memories of her childhood in Scotland are now starting to go, it is and has been a missed opportunity that there isn’t anybody in the care home who is from Scotland who can relate to the things she might still remember and talk to her about it.”

“In terms of support for relatives, I think for me the key thing was to understand the condition. But if I was and had been more involved in the daily care of my mother, I would probably be saying something different. Because what my dad did was actually a very demanding role. The thing that made the biggest difference to me, apart from having her needs addressed in the care home, was meeting the Alzheimer’s disease nurse who enabled me to understand the condition. I then understood a lot more about the progression of the condition and how to work with it.”

“At the beginning of her stay at the care home, my mother, the care home’s unit manager and I had a review meeting every 6 months. I never used to understand why the unit manager would ask my mother questions about how she was getting on, how she liked the care home, if she enjoyed the food and liked the way she was having showers. She couldn’t remember. So I asked him about it and suggested that we should meet without her as I felt awkward having to talk about her in the third person in her presence. However, he said that it was really important that she was present at these meetings because when he asked my mother those questions he was looking for the emotional response. And even though she wouldn’t remember what the food was like or if there was something bothering her, he would see it in her emotional reaction to the question.”

“The care home was very helpful. I spoke to a Dementia nurse and had a few sessions with her. She shared a lot of her expertise about how to understand the condition. It was very interesting to know that the most recent memories would go first and that while my mother’s memory deteriorates she was going back in time. She started thinking that she was a young girl back in Scotland. She has forgotten all about her husband and living in Cornwall for 20 years. But she remembers being a young girl and suddenly she would say “I have got to go home because I haven’t told my mum where I am!” and then at other times she would say “They are all dead aren’t they?” So she has short moments of clarity.”

What affect did it have on you and your family and how did you adapt to enable your mother to live well with Dementia?

“What I think is difficult for us relatives is that she can forget that she has been married and has children. I think it is really important for relatives to have some kind of training and support, because otherwise you don’t understand that the person who is you mother can actually forget who you are. On the surface that is quite hurtful, but therefore it is important to understand that, at least in my case, it is not that she has forgotten all about me but that emotionally she can connect with me because in a way she does know who I am. For example when I go to visit her, she recognises me but she wouldn’t really know who I was.”

“As mentioned before, I say the names and who people are whenever I speak to my mother about them, including myself. This is just to make her feel more at ease in case she is struggling to place the names and faces. In birthday or special occasions cards I have started to write more of a little story. This is really nice for her as she can re-read it anytime which can enable her to know what was currently going on and that she has family including grandchildren. It would also enable her to have conversations with the staff at the care home as they may comment on her granddaughter having passed her A-levels or any other event mentioned in the card. I think there are so many ways by which we can enable people to live well with Dementia, whether it is the people having Dementia or those caring for them. It is all about taking one’s time and understanding their specific circumstances and needs and then working towards addressing them to the best of your abilities.”

If you are interested in learning more about dementia and getting involved, one easy yet effective way that you can is by becoming a Dementia Friend. It simply requires attending a short, informational session that will give you the knowledge to help yourself and others better understand dementia. To find out more, please visit www.dementiafriends.org.uk.

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