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Amanda’s story: "Our Admiral Nurse Helen helped to put things into perspective"

After Amanda’s mum was diagnosed with Alzheimer’s disease, the family were supported by Admiral Nurse Helen on our virtual clinics service.

Amanda

I first noticed that Mum was having memory issues about seven years ago when she was 70 years old. They got progressively worse, so we went to the GP.

Mum was initially diagnosed with mild cognitive impairment. We didn’t think it was a massive issue and we thought everything would be okay.

But things got worse during lockdown, and we struggled to get an NHS appointment. We decided to book an appointment with a private doctor, who diagnosed Mum with Alzheimer’s disease. Although we saw it coming, it was an emotional shock.

There is so much information out there, it felt overwhelming

After Mum’s diagnosis, she went back to her NHS GP for ongoing care, but they didn’t know much about dementia, and we weren’t signposted to any support. I started doing my own research online but there is so much information out there. It felt overwhelming trying to read it all.

When I came across the Dementia UK website, I really felt like I needed to speak to an expert. The virtual clinics service, where you can book a phone or video call with a dementia specialist Admiral Nurse, sounded fantastic as it meant my sister and I could attend the appointment together. I booked a video appointment with Admiral Nurse Helen at a time that suited us.

Admiral Nurses Helen and Helen

Admiral Nurse Helen on the right

I literally felt my shoulders come down during the call

During the appointment, Helen helped us with lots of practical advice, but what made the biggest difference was that she told us not to panic. I had been thinking about getting a carer in for Mum for a couple of hours a day, but Helen reassured me that she didn’t need care yet and was benefiting from having her independence.

I was constantly anticipating the next stage, but Helen said that having carers come in might make Mum regress because she wouldn’t have to do things for herself. We were hastening the problem in our effort to help.

It was so stressful constantly thinking about what was coming next, but Helen reminded us that we had a long journey ahead of us and we didn’t need to rush into anything. I literally felt my shoulders come down during the call, and a weight was lifted.

It was also helpful to be able to speak to Helen with my sister. If I had been on the call on my own and had to relay the information, it may not have had the same impact. It was helpful for us both to hear advice from a professional rather than from each other. We got to share that sense of relief together. It has made my sister and I closer, which is really positive.

Helen put things into perspective

Since her diagnosis, Mum has become very gentle, and we get on well. However, I’ve accepted that she isn’t really my mum anymore. It’s happening slowly, but I’m losing her bit by bit. I never know if she is telling me factual information, a totally imaginary situation or something in between.

But it’s been so much easier to cope since speaking to Helen. I was going into panic mode and worrying about everything that might happen in the future. Alzheimer’s disease is unpredictable, but Helen helped us to focus on the present moment and take one day at a time.

I was terrified about how I would cope in the future and always on high alert. Now I feel like I can make time for my own life. I went from waking up in the morning panicking to feeling calm and in control. Helen put things into perspective.

I felt such a huge sense of relief after the call and thought the service was brilliant. Helen has been a massive psychological support. It’s reassuring to know there are people like her to guide and help us when we need it.