How Dementia Caused Mum's Extreme Paranoia

I'm in good spirits writing this weeks blog, the sun is shining and I'm sat in the garden listening to a chill-out playlist. Despite everything going on with mum (and the world!), it's hard not to smile today. I almost don't want to tell the story of February Pt 2, it was such a stressful time for me and I don't want to relive it. Anyway, I will. That's the whole bloody point of this blog so I won't chicken out.

Before I do start, it's worth noting that my blogs are best read in order. I created a Facebook Page for FTD & Me this week and I'm amazed to have over 200 likes already. People I do know, people I don't know and people from all around the world. For those who have just been introduced, my blogs are dated and you can see them in date order. I'm playing catch up at the moment and I almost feel like I'm writing a story. You need to read the chapters in order for the story to make sense.

So, February Pt 2. I suppose it actually started around September 2017 when I myself found a lump in my left boob. Naturally, I visited my GP who had a good feel and confirmed it should be checked out. I wasn't worried, the GP reassured me that there are lots of causes for a lump to form; it could be stress (and I had plenty of that), it could be an infection, it could just be a common cyst. Nevertheless, it's always worth getting checked out so I had a subsequent appointment at a breast clinic. I went to the appointment alone, I wasn't concerned so I didn't feel I needed moral support.

My appointment started with another doctor who had another good feel. She was prodding and poking whilst speaking to her assistant. The words she used were so complex, it was like she was speaking a different language. I had no clue if what she was saying was positive or negative, so I just left them to it. I assumed they would give me a breakdown in layman's terms once they were finished, and I was right. They gave me the most succinct summary I had ever heard:

Doctor: We've inspected your lump and we think it's cancerous. Take a seat in the waiting area, we need to do an ultrasound to find out more, but it's likely we need to remove the lump today.

The transcript ends there because I was speechless. I just grabbed my stuff and went to the waiting area, only then processing what had been said. Sh*t, I wish I had brought someone for moral support. I started panicking and getting emotional, I called my husband who tried to calm me down but really, there was nothing he could do. I just needed to have a little meltdown.

I had been waiting almost 2 hours until I was called in for the ultrasound. It felt like 2 years, I was the only person in the waiting area and I didn't see one other healthcare professional during this period. I was so relieved when I heard them call my name. It was a very quick process, as soon as I walked in I was asked to remove my top and lay on the bed. The nurse could tell I was nervous so explained the process and told me what they were looking for. After roughly 5 minutes, she had finished. I sat up, expecting the next few words to potentially change my life.

Nurse: Good news, it turns out it's not what we thought. It's actually just 2 cysts sat on top of each other, like a snowman. You have two options now; you can either leave them there, or get both cysts drained.

Me: If I leave them there, will it cause me any damage?

Nurse: Not at all, they aren't cancerous. It depends on whether or not you find them uncomfortable?

I didn't find them uncomfortable. I decided to name them 'Snowy' and kept them. Me and Snowy had been through a lot together over the last 2 hours, it didn't feel right to just discard him. We had a bond.

Phew, I was completely fine. After a rollercoaster of pointless emotions, I had nothing to worry about. On a positive note, the journey did give me some experience with breast abnormalities, something I never knew would come in useful until February 2018, when mum had a similar experience.

I was surprised to learn that mum had never attended a mammogram appointment. She was now 62 and had received requests from her GP from the age of 50. I don't understand these people who don't go to the doctors. Why? Why do people wait until a minor problem is a major problem before they seek help? It completely baffles me. Anyway, I convinced mum to go, I told her that it was important she looked after herself now that she was getting older and she agreed. If only that line worked when talking to her about mental health...

Me, mum and Pete attended her first mammogram appointment. Mum was nervous and didn't know what to expect but I was so proud of how she handled it, especially given the recent symptoms we had seen. I was seriously worried her paranoia would get in the way. Getting your boobs clamped into a machine isn't nice for anyone, but she just got on with it and embraced the situation.

After the first appointment is where it gets difficult. I don't know how to explain the rest of the story without writing a novel, but in summary;

  • After the mammogram, they wanted to take a biopsy of some breast tissue so mum had to return to the clinic

  • We got a call shortly after stating the sample was too small, and mum had to return for another biopsy

  • We had to await the results

The strange thing about all of this, is that mum was brilliant in the appointments. She appeared calm and relaxed and never caused any nurse a problem. The stressful part was her behaviour whilst awaiting results.

I completely understand that anyone in this situation has a right to be scared, but mum had convinced herself that she was dying. I think this is a valid story to tell, as without suffering with the early stages of FTD, I believe she would have handled the situation differently. She was irrationale and there was no way we could reason with her.

The nurses never gave mum a reason to think she was dying, in actual fact I found them incredibly reassuring. They explained a sample was required because she had left it 12 years to do a mammogram, they wanted to do a full breast check. Mum didn't listen though, she called me every single day in floods of tears saying she's 'one step closer to death'. She told me to rearrange my upcoming wedding because she 'didn't want to be bald' when I got married (as if mum 'being bald' would have been what I was worrying about). She told me she was 'scared to start chemotherapy'. How has a simple health check resulted in mum mind mapping her future? Why has she come to the conclusion that she was dying and due to start chemotherapy?

On top of this, she turned to Facebook. She would share stories of legitimate people who were dying of cancer. She would share posts which read 'no-one understands what it's like to live with cancer'. Some people were seriously concerned about mums health and messaged me to ask what had happened. It seemed like she was attention seeking, but I knew it was something more.

I tried to reassure her by telling her that I had been through something similar recently. Her response was 'no you haven't, you don't know what I'm going through'. I would sometimes get the golden line of 'you know it all, don't you?'. It was absolutely draining and I found it had a real impact on my own mental health.

The day came when the results were in. I was so excited to finally have some confirmation that everything was okay and we could move on (perhaps I shouldn't have thought too optimistically, but it was the only thing that got me through). There was a delay in the clinic and appointments were running behind. At one point, mum said 'I knew there would be a delay, they always save the people who have cancer until last'. Eventually, mums name was called and thankfully, the results were as expected. There was no abnormalities and mum had no signs of breast cancer. There we had it, a proper professional had confirmed she was okay. An expert who specialises in breast cancer. When we left, mum said 'I just want them to give me the all clear'. WTF.

After a few days, it did go back to normal. I just think it took some time for mum to accept the good news. In the end, it was clear her paranoia did have a huge impact. It wasn't attention seeking, it was dementia striking once again. Mum genuinely believed she was dying and it must have caused her such fear.

Despite mum being the main victim in all of this, I also think it's important not to forget about family/friends. This whole situation caused me great anxiety. If anyone else is going through this currently, stay strong. It will get easier and tough times do pass.

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