6. It's not the same as forgetting

with Rukiya and Mahomed
 
Mahomed and Rukiya are relative newcomers to London, moving here seven years ago, although Mahomed studied here when he was younger in 1988. When the couple remember their former life as doctors in Malawi, we are transported to another time and place, where their medical practice was at the heart of a tight knit community in Blantyre, where they lived.
During my visit to their home, I spend time asking them about the Remembering Together programme and their response to the personal art work piece which was created especially for them.  Mahomed and Rukiya are people persons, so perhaps it was the need to connect with others that led them to attend the twelve week reminiscence sessions for people with dementia and their carers?
 "At first we had mixed feelings and were not keen to go." Rukiya tells me. "Then we went and got hooked! It was lively and we enjoyed it thoroughly. The group was so friendly and care oozed out of everybody. We loved the positive energy and we really looked forward to Thursdays, it was very addictive."
Mahomed joins in, "We enjoyed meeting other people, enjoyed meeting new people! Going to the group made us realise that we are not the only ones like this!"
Rukiya is unusually candid about her diagnosis of early onset dementia. By talking about it openly she hopes to raise awareness of the condition and to tackle some of the stigma surrounding it, particularly within the Asian community. Listening to Rukiya talk about her condition I am full of admiration for her courage and dignity. It's hard to image the effect that the diagnosis must have had on her and I am keen to understand more about the impact.

​"After my dementia diagnosis, I was very down. I could accept cancer, chemotherapy, radiotherapy, then, I had intact mental faculties but now I feel that I am not in control. I could not accept dementia. I could not accept memory loss, becoming a burden to others. It was my lowest phase. But over the twelve weeks, the Remembering Together sessions lifted me up!"
These weekly sessions meant a great deal to the couple, giving them support, focus and meaning during a very challenging time in their life. Each week, the group of ten couples shared memories and stories on different topics, whilst the apprentices worked closely with the couples to create activities which were stimulating and fun. I'm keen to hear what this couple made of the activities. Mahomed thinks for a while and says, "We really enjoyed them all, however, the wedding session was one of my favorite sessions. But we also liked the baking week. It was good for our confidence, we felt cared about and we made connections."

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Rukiya also speaks enthusiastically about the sessions and how she always looked forward to going, "I remember the twelve weeks and I wish the twelve weeks would last forever. The twelve weeks were like the cake and the artwork is like the cherry on the cake!"
​We spend time unpacking and looking through the personalised art work piece which was made for the couple by Hilary Thomson, a drama in education specialist. It's a memory basket which is full of photos from each of the Remembering Together sessions as well as activities that can be repeated at home. Inside are also sensory items to stimulate memories such as smells, tastes and hand written tags with quotes from the Remembering Together sessions. In addition there are crafts and memory games, a notebook with their life story in it and a scrap book to carry on the story by adding new things.

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​I spoke to Hilary about her inspiration for the piece. "I had noticed that Rukiya liked to do craft with her hands and felt that a basket with crafts and things to occupy her would be useful. I also wanted to keep the essence of Remembering Together going for them as they had loved the sessions so much. I started off with a few ideas and then gradually built it up adding more things as I thought of them. I hoped that the basket would become more individual to them and their story and could be added to over time."
Seeing the memory basket at their home, I also wanted to know what it meant to Rukiya and Mahomed to receive the art work piece from Hilary. Rukiya smiles when she tells me, "I felt like I was getting a degree! I was not expecting it and it was a very good feeling. We cherish it!  Hilary put a lot of effort into the piece which showed she cared. There were new crafts and activities inside which were wonderful and challenge the mind. It made me feel connected, because all of the memories that Hilary put together. It made me feel love that I am important to all the people that I am connected with!"
Rukiya takes things out of her memory basket and I enquire about the pictures in their memory book. She tells me about the people in the photos and remembers stories connected to them. From time to time, she struggles to remember a name or a date. Sensing her distress, I try to reassure her that we all forget! In her usual forthright manner she puts me right.
"It's not the same as forgetting!" Rukiya tells me, "People tell me it's ok, we all forget, but they do not understand what I am going through. It hurts me when they say this because it shows they don't take what is happening to me seriously."
We discuss this further and they both understand that I am well-meaning, but Mahomed in turn nods with sudden seriousness. "I feel it is very disrespectful to people with dementia. People seem to think that forgetting equals dementia - that is upsetting. We all forget where we left our keys or forget names occasionally. But when someone has been an expert cook and pastry maker for over three decades and then begins to forget, that is not funny! This illness is taking away Rukiya's memory."
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We talk about how hard it is for outsiders to appreciate the impact of dementia in a person's life and the need to raise awareness and perceptions. Speaking to Mahomed and Rukiya, I am struck by their humility but also their honestly and determination to make a difference and I feel a deepening sense of my own understanding of what dementia means.
Turning our attention back to the memory basket, Rukiya shows me a picture of herself wearing a sari. She's standing shoulder to shoulder with Mahomed and their young children are next to them. She's thinking about the past, but she's also thinking of another time when she says to me, "Looking at this might also help to remind us in the future when the dementia progresses, in that it may also help with reconnections and so the dementia may progress more slowly because new connections in the brain can help."

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​It is also my hope that the memory basket will prompt Rukiya's memory, but also that she may continue to feel loved and important to all the people that she is connected with in the future.