Aqib and Shahbanu’s story: "Speaking to an Admiral Nurse was an important first step"
Aqib and Shahbanu with their mother
Shahbanu: Small day to day things constantly remind me of Mum’s dementia. Like opening a cupboard door and realising that she has put something in the wrong place. Or having to explain things multiple times while we are watching the TV together. My heart sinks every time.
We haven’t got to a stable place yet and I find myself putting a disproportionate amount of hope on the ups which makes the downs harder to cope with.
It feels like Mum is more of a child than a parent and it has been difficult to adjust to the change in family dynamics.
Aqib: I wake up every morning wondering if Mum will remember who I am. I dread the day that thought becomes a reality. I frequently work abroad and I worry that my absence will erode Mum’s memory of me.
The constant worry means that dementia takes up a lot of bandwidth, even when I’m working. Living with dementia is going through continuous peaks and troughs.
I’m living with a constant fear of what is next.
“My sister and I often have a difference in opinion” – Aqib
Shahbanu: When Mum’s symptoms started, I thought her brain was simply recovering after a period of prolonged and intense stress. And so I said to myself that once she’s rested, it will be fine. But deep down, I just didn’t want to acknowledge it was dementia.
Aqib: My sister and I disagreed hugely about what was happening to Mum. I would get annoyed that she was burying her head in the sand. And I would also get angry with her for losing her patience with Mum about her forgetfulness.
We realised we needed some expert support and advice to help us get on the same page and to support Mum as best we could.
“When I read about Dementia UK’s virtual clinics, it sounded perfect for us” – Shahbanu
Shahbanu: I was researching dementia and memory loss and that’s when I came across the Dementia UK website. What caught my attention was a story about a carer who lived close to us who had support from an Admiral Nurse. Because it was local, it made the support feel much more accessible.
When I read about the virtual clinics service, it sounded perfect for us. We could book an appointment at a time that suited us, which worked well with Aqib working away.
Aqib: One thing we did agree on was that we needed to talk to an expert. We realised that Mum’s comfort would be conditional on us being able to understanding what was happening and getting on the same page as soon as possible. So we took the plunge and contacted the virtual clinics service.
“Now we know what we are dealing with, we can move forward”
Shahbanu: The conversation we had with Admiral Nurse, Ruby helped prepare us for what is to come. Ruby gave us a framework that we could use to figure out how best to help Mum and ourselves. Now we know what we are dealing with, we can move forward.
The call also helped Aqib and I see each other’s points of view. Aqib is more focused on the long-term and I focus more on the day-to-day. We now appreciate that our different perspectives can work together. I also feel like I am much more understanding and patient with Mum. I have accepted that this is the new normal which has made me feel more at ease.
Aqib: The call was so valuable and informative. Where we have had competing viewpoints, having an expert to clarify and explain has been so helpful.
Raising awareness of Admiral Nurses
Shahbanu: Ruby gave us some brilliant analogies. She described dementia as a bookcase. The lowest shelves are the heaviest and are your long-term memories and the higher shelves are more recent memories. Alzheimer’s shakes the bookcase, and books from the top shelf tend to fall out first. This helped us understand what Mum was going through and to consider what Mum might need in the future. She grew up speaking Urdu as her first language and so she may revert to this at some stage.
We can’t emphasise enough how helpful this service was for us. The fact that we could both attend the virtual appointment regardless of our location, at a time that suited us, was perfect. It was an important first step and we use Ruby’s analogies every day.
It’s hugely important to us to raise awareness of Admiral Nurses, which is why we decided to take part in this year’s World Alzheimer’s Month campaign with Dementia UK. It’s been privilege to be able to access support from Dementia UK and to help raise awareness of the amazing services they offer.
Aqib: We had such a fantastic experience with our Admiral Nurse. We’re extremely grateful for the support we received and want to give back in any way we can. We’re an aging society and dementia is not going to go away any time soon. Everyone should have support from a dementia specialist to help you through.