One of the services that HERE runs is the Memory Assessment Service that supports citizens of Brighton & Hove – we call it MAS for short. We look after people before diagnosis, during and after, at their own pace.
One of our service users is Elspeth. We spoke to her at the beginning of 2020 about the events that led to her Alzheimer’s diagnosis and she explains in her own words how much joy she now gets from life.
“You see, I’m okay at talking but I can’t do things. I can’t write, I can’t spell anymore.”
“I started to have disasters, in my in my flat, I was just turning on the bath water and leaving it, and I used to flood the floor. I had terrible disasters with my cooking – I nearly burnt the building down – and it was absolutely terrifying. And I thought this isn’t normal loss of memory. This is quite serious loss of memory. So I just sort of realized then that I think I probably might have Alzheimer’s.
“When I said, ‘I’m forgetting things, all sorts of little things’, they would say, ‘don’t be silly, we all do that’. They dismissed it.
Elspeth: Am I alright to tell you all this?
HERE: Yes, please do!
“Well I said, ‘I’m sorry, but I’m going to the doctors and I’m going to say I’m forgetting everything’.
“And (the doctor) said, ‘would you like to go and have a little test?’ It’s like a little, ‘what does this remind you of, and will you draw something’ – and I didn’t do terribly well. Then she said, ‘we could offer you a scan’ and I said, ‘yes, please give me a scan’ – because I have to know.
“What was my reaction to getting the news? It was almost relief, because there’s a reason for my behavior. I never once had a fit about it and thought ‘Oh, my God’. I thought, well, it is what it is.”
What was life like before your diagnosis?
“The children were doing their own thing and I had retired; I was an auxiliary nurse at the children’s hospital. I had to retire when I was 60 in those days. And I thought, ‘oh my God, what am I gonna do now?’ So I just ended up browsing around Brighton’s shops, going home, having lunch, looking at TV in the evening. Nothing really exciting at all.
“I didn’t mind living alone, I was quite smug about it really! I can do whatever I like. If I want to watch something on TV, there’s nobody to argue with! And I was making the most of it, really.”
Support through the Memory Assessment Service
“Then I discovered this (her diagnosis and the Memory Assessment Service support) – It’s been such a nice surprise. I’ve never been happier. Isn’t it ridiculous?
“I’m having such a lovely time. I’m going to all the lovely groups, I am singing, cookery – and then we all sit down and eat what we’ve cooked. And we went to this beautiful walled garden, an old hundred year old walled garden with apple and pear trees. We sat out on the lawn and we planted seedlings and put them in the green house, and we picked some lavender and then they showed us how to make lavender bags, then we had afternoon tea on the lawn – all run by wonderful volunteer ladies.
“How could everybody be so kind and loving to us all? They say ‘we love you all, thank you for coming’. It was unbelievable, it was like going to heaven. You wouldn’t believe how kind people are. And I’m really, really grateful for that because we feel that people walk by and they’re busy, but they’re not all like that, are they?
“I think she’s called Louisa – she’s seen me right through from the start. She’s given me all the information and she’s been to all the meetings.”
Everything seems so lovely to me now
“I’m really, really happy. It’s one of the nicest times of my life with all the struggle and stuff I’ve had. I’m not a sort of miserable person.
“I’m more aware of nature. I just bought a pound bunch of daffodils and they’ve all opened out in my lounge, and I can’t think of anything more beautiful to see in the morning when you wake up, the simple things.
“I said to Penelope the other day, ‘this must just be like when you’ve taken LSD!’ And she said, ‘My God, I hope you don’t really know what that’s like!’ She nearly collapsed when I said that!
“Everything seems so lovely to me now. Everything is there, but you have to know how to join the club first. Some will just go off and say, ‘no, I don’t want to do that’ or ‘I don’t want to go’. And that’s such a shame if I don’t try it, isn’t it?”
What has made the difference to you?
“Just me appreciating life. Because I’m not going to have it much longer anyway at my age, and I just want to cherish every day.”
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