I can still remember when it first happened. I thought this isn’t like me forgetting how to spell words but, that Monday afternoon as I finished writing the office memo I just couldn’t remember how to spell the word regards. I put it down to a busy first week at work after my maternity leave. After all, I was thirty-five having my first baby, so I just put it down to overloaded baby brain.
A few weeks later, I sent a birthday card to my mother; I had to check her address in my address book. My parents still lived in my childhood home, yet I couldn’t remember any part of the address. For months I just put it down to what I called brain freeze from having my daughter in my thirties.
It was only when I phoned my husband Alex from the roadside after getting lost on the way to the supermarket with Lilly screaming in her car seat. No matter what I did, I couldn’t soothe my daughter. It was the first time I felt I couldn’t cope. Alex came to collect us. That night after we put Lilly to bed he told me he was concerned about my health, and perhaps I should see a doctor.
He had noticed I had been rundown and perhaps the doctor could give me something, a boost to make me feel like my old self again.
At the doctors, they ran some tests, and they seemed OK. Although I admit, I struggled with some. Nothing could have prepared me for what the doctor was about to tell me. Someone could have knocked me down with a feather.
“Mrs. Lance, I’m sorry to tell you, but you have early onset Alzheimer’s.’ I couldn’t speak, I just felt numb. I couldn’t even think about what I needed to ask.
“How does Nicola have this? Surely there must be some mistake she is only thirty-five.” My husband spoke for me.
“Yes she is young, and it’s very rare that a case like this happens, but unfortunately no adult is 100% safe from Alzheimer’s. We drove in silence on the way home neither of us daring to speak in case we broke down.
The following day we drove to my parents to break the news to them. Alex and I had barely spoken about my diagnosis. I suppose we were both thinking, if we don’t address it then I haven’t got it. We pulled up at mum and dads. Alex gave my hand a tight squeeze.
“It’s all going to be fine,” he tried to reassure me.
I looked at Lilly asleep in the back of the car wondering how long it would be before I forget I have a daughter.
Mum could tell I was troubled from the moment I set foot in the living room. Dad also sensed there was something up. I lifted Lilly out of the carrier and held her close to my chest. I couldn’t speak my legs were like jelly. How could I break the news to them?
“It’s so lovely to see you, so what brings you here?” asked mum. Alex had been talking for ages and not getting to the point.
“I have Alzheimer’s,” I stammered. Mum’s face dropped.
“There has to be some mistake. Your father and I will pay for a second opinion won’t we Frank?” mum said with a nervous laugh.
Dad was now sitting next to mum with his arm around her shoulders. Dad didn’t speak he just nodded
“Well the thing is Anna, Nicola has been feeling very run down lately. She has had lots of tests.” My husband said. “So I think we would be wasting our time.”
We didn’t stay at mum and dads for long. It sounds selfish, but I couldn’t deal with all the questions.
The next morning, I decided I was going to make memories while I still could remember. Work had agreed to give me a few days off while I waited to see the company doctor.
“Can you watch Lilly while I go to the shops?”
“Yes, of course, do you want me to come with you?”
I knew what he was thinking. What if I get lost again? But, I had already set up the GPS, plus I decided I wouldn’t be driving anymore after today, for the simple fact that I knew I would have to give up driving soon.
My first port of call was popping into the camera shop and buying myself a new Polaroid. After that, I went and bought a diary and several scrapbooks. My idea was that as my memory began to fade my scrapbooks would become my memory. I got a little frustrated when I returned home and realised I had forgotten to buy a white board.
Two weeks later I gave up work forgetting people’s names and misspelling words just seemed too stressful. Alex decided to change his shifts so he would be home at the weekend. Instead of doing online shopping when Lilly was sleeping I watched quiz game shows or do a crossword.
I spent time making lists. It took the best part of three days to go through all the photos and make notes on the back of them as to who, where and when they were taken. I could feel this disease creeping up on me. I imagined a tiny little man sitting on top of my brain slowly pulling wires out and putting them back in the wrong places.
When I remembered, I wrote in my diary. At the start, I had my phone to prompt me, but slowly I began to misplace my phone
I lived independently for just over a year with little help. I would forget my shopping list or forget I had an appointment but nothing too severe.
This soon changed just before Lilly turned three. We were going to the supermarket to get a few things for her party being held the following Saturday. I got on the bus remembering I had the shopping list and the bags. A bonus, I remembered my pin number at the cash point and remembered to take the cash. I remember thinking on the way home that perhaps the things I had been doing to try and retrain my brain might be working. I had decided to walk home despite being weighed down with bags of shopping. Again my memory didn’t let me down, I found my way home without any trouble.
As I turned the key in the door, I heard screaming. At first, I couldn’t make out what it was. As I opened the door, I saw Lilly crying at the bottom of the stairs. I had remembered everything else that day, but I had left the most important thing at home alone. I phoned Alex in a panic within five minutes he was home from work.
We agreed that night that Alex would work half in the office and half at home, with my mum caring for Lilly when Alex was at work. Lilly had a good party the following Saturday although I didn’t recognise a lot of the faces. I cried when we sang happy birthday because I just didn’t know the words.
Sometimes I catch a glimpse of myself in the mirror, and I know it’s the old me. The person who detests dinner parties but loved going to a real party and dining out with friends. The woman who ruled her office with a rod of iron but somehow at the same time was everyone’s friend. Then there is the new woman who’s taking control from the inside, a woman who doesn’t care, who is unsafe and unstable.
The real me is slowly dying, but I’m not ready to die. I still look like me but inside I’m slowly fading into a child again.
This was the last entry by Nicola after three years of this horrible disease she began to fade quickly. Sadly, she died two days short of her fortieth birthday. It’s taken me nearly six months, but I had to write something in memory of my Nicola. The one thing that didn’t fade was the sparkle in her eyes. Even when she couldn’t speak her eyes would sparkle when she saw Lilly, or I showed her pictures.
At times it was a very stressful and emotional journey for both Nicola and myself. One thing I have learned, you have to adapt, to go along with the memory they are having at the time. It was lovely when she thought it was the first time she had met me. It was good times when my Nicola was back for a few minutes. I am guilty of running out of the house crying when she thought I was a stranger; the fear in her eyes was so real.
I now say to everyone hold on to every memory because you never know how long it’s going to last.