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12 - The Day We Received A Dementia Diagnosis

Right, I'm doing it. I'm actually bloody doing it. I'm writing another blog after 2 long months. I'm not sure if I remember how to write a blog, but my fingers are typing so it's a good start.

Before I get started, I just want to say how thankful I am for all of your messages, so many people have noticed that I've been quiet and messaged to ask how I'm doing. You're all so thoughtful and I feel so supported. I posted a video on my FTD & Me Facebook Page explaining why, hopefully you all saw it!

In the story told so far, I had just gotten married and mum had just had her first doctor's appointment. In this chapter, I'm going to focus on the months between August 2018 and February 2019. These are the months that led to mum's diagnosis and could be useful for those in a similar situation. If this is the case, I hope you're okay. You'll read shortly that for me, it wasn't a straightforward journey and I found it stressful at times.

As most newlyweds do, the morning after our wedding we jetted off to celebrate our honeymoon (Thailand was our destination of choice for those interested!). Whilst we were away, mum was asked to go in for her bloods to be taken and an MRI scan. This was only a few weeks after her initial GP appointment, but the doctor had put in an urgent request as he had serious concerns after our discussions. Whilst I knew the results of these tests wouldn't be instant, I was still upset I couldn't be there. I'm the type of person who seeks information and does a vast amount of research. Whenever I was in the presence of a doctor, I would ask countless questions to ensure I understood what they were testing for and I knew exactly what the next steps were. Relying on second-hand information made me anxious, but there wasn't much I could do being 6,000 miles away!

A summary of some key dates is shown below:

  • 13/8 - Mum's first GP appointment

  • 25/8 - My wedding day

  • 27/8 - Landed in Thailand

  • 03/9 - Mum had bloods taken and an MRI Scan

  • 10/9 - Landed in England

  • 17/9 - I was told mum had dementia

It took 35 days from mum's first appointment to be told, by a professional, that she had dementia. The MRI results came back and showed shrinkage of the brain, enough shrinkage for the doctor to be sure enough to tell us. What he couldn't tell us, however, was the type or severity of dementia. It was simply a brief conversation and because we didn't have all the answers, we chose not to tell mum until we knew more.

I'm struggling to know what to say now. I feel like I should write a paragraph about how my heart shattered into a million pieces and I cried for days on end, but that's just not true. Due to the volume of research I had done, I was already pretty certain she had dementia and actually, I felt happiness (bork, honesty). I was happy this would now be taken seriously and I was happy it was dealt with promptly. I'm not sure if that's how I should have felt, but it's the truth.

Despite having a little more clarity, I still had lots of questions and was told the upcoming memory test (in only a week's time) would give me more answers. These tests are known as cognitive assessments and can be done by a GP, though mum was referred to a different memory clinic for this. She was given a pen and paper and had to answer a series of questions, each of which carries a score. They assess a number of different mental abilities, including:

  • short and long-term memory

  • concentration and attention span

  • language and communication skills

  • awareness of time and place (orientation)

Mum's GP told me that once the assessment was complete, she would then be referred to a consultant neurologist for a more detailed assessment which will give us the type and severity of dementia. He was certain of this next step because even without a cognitive assessment, the MRI results alone (which showed brain shrinkage) would warrant a referral.

This is where things start getting messy, time-consuming, and confusing. I could write a book about the number of calls, voicemails, and emails sent so instead I'll summarise and keep it brief. In December 2018 (3 months later), absolutely nothing had changed in terms of her diagnosis. We still didn't know the type of dementia or how severe it was. I was told mum had the cognitive assessment and was indeed referred to a consultant neurologist for a further detailed assessment. During this time, I chased the GP, the clinic where the cognitive assessment took place, and the consultant neurologist's secretary. The types of responses I got were always;

  • Someone will call you back shortly

  • We'll scan the results over to your mum's GP

  • We'll email the results over to you now

  • We just need to find the information on our system then we'll be in touch

Needless to say, I never got a callback and nothing was ever sent. It got to a point where I was incredibly frustrated and after seeking advice from friends who work within the NHS, I took a different approach. I know the public sector has limited resources, a never-ending to-do list, and often struggles to prioritise their work. Whilst this isn't my natural way of dealing with things, I started shouting louder in the hope I'd be heard. I was relentless and called numerous times a day asking for updates, I asked to speak to managers of departments and I sent numerous emails so I had everything in writing. My persistence paid off and eventually, I got to the bottom of the hold-up.

The reason I hadn't received any results was because there were no results to give. When mum had her cognitive assessment in September 2018, it turned out she wasn't referred to a consultant neurologist and in fact, passed the test with flying colours. It transpired that no-one referred to the MRI results and based on the pen/paper questions alone, everything was fine and dandy. For anyone else in a similar situation, this is common. With FTD, memory loss is often one of the last symptoms to show which explains why she smashed the test. Please bear this in mind and really push for a brain scan such as an MRI or PET scan. A letter was faxed back to the GP confirming that nothing was detected, but they chose to ignore it and that was the end of the investigations.

Can you imagine my reaction when I found this out? I think at one point I resembled The Hulk... I was furious. It was basically one gigantic f**k up by everyone involved, but thankfully when I contacted mum's GP it was resolved pretty quickly. He apologised, acknowledged the f**k up, and booked mum in with the consultant neurologist (I know, I don't know why this didn't happen in the first place either). Whilst the investigations were re-launched, the appointment wasn't until February 2019 so we had another 2 months to wait. I was also gutted because the date of the appointment was Thursday 7th February and I was scheduled to be in Las Vegas... another important appointment I was going to miss.

It's worth noting that during the 3 months it had taken to sort this mess out, mum's symptoms were also much worse. For example;

  • She no longer had a job as she had missed so many shifts

  • She was still driving and often forgot where she had parked her car, she even knocked a cyclist off her bike (thankfully nothing too serious)

  • She was starting to forget basic things; at one point she tried eating a raw chicken breast, not realising it needed cooking

  • She started dismissing her hygiene and appearance; I would often go around and wash her hair but this was seen as a 'chore'

  • She had extremely unhealthy eating habits and started gaining lots of weight

  • Her communication was getting much worse and she rarely spoke

This all happened really quickly and it seemed that every day a little part of her went away. Every single time I left her house, the 30-minute journey home would consist of tears, more tears, and just a few more tears. It is so hard watching a loved one change in front of your eyes.

Anyway, it was now February 7th and I was in Las Vegas on a girls' trip. I knew mum's appointment was 2.30pm - 4.30pm so at 8.30am Las Vegas time (-8 hours), I was sat eagerly awaiting a phone call. I was worried, I had a strong feeling mum had FTD but I really didn't want it to be FTD. I knew there is no cure nor any treatment to slow it down, and I also knew that FTD caused by genetic mutations could also be hereditary. At 9am, the phone rang. I spoke to Pete (mum's husband) and all I kept thinking was 'please don't be FTD, please don't be FTD'. Almost instantly I was told mum had FTD and at that very point, a little piece of my heart broke. To be specific, mum has bvFTD which stands for behavioural variant frontotemporal dementia. This disorder involves changes in personality, behavior, and judgment. People with FTD may have problems with cognition, but their memory may stay relatively intact. They can act strangely around other people, resulting in embarrassing social situations. Often, they don’t know or care that their behavior is unusual and don’t show any consideration for the feelings of others. They may also do impulsive things that are out of character or engage in repetitive behaviors. Over time, language and/or movement problems may occur, and the person will need more care and supervision.

It's worth mentioning how my mum reacted when she heard the news. I spoke to her briefly and all she said was 'you'll never guess what, the doctor has taken my driving license off me!'. I mean, it was a very wise decision but why is this all she's mentioning? Is she aware she's been diagnosed with dementia? This has always been a fear of hers, why hasn't she mentioned this life-changing piece of news? I still don't know if it was because she was in denial or because she didn't really know what was happening, but I was surprised.

So, back to Vegas. Even though I had a strong suspicion that mum had FTD, for some reason it hit me like a ton of bricks. I tried my hardest to stay strong but that day I couldn't stop crying. I must have looked bat sh*t crazy, I was sitting by the roulette table in floods of tears downing vodka cranberries. I couldn't have been surrounded by better people though and my friends didn't judge when I was having my meltdown. A few other gamblers noticed my emotions but my friends explained everything and they let me be. When I ran out of chips, a stranger came over and asked my mum's birthday. I told him it was May 15th and he put $10 on 15 black. Lo and behold, 15 black came in and a pure stranger handed me his winnings saying 'that was for your mum'. Obviously, I cried some more but this time, it was due to the kindness of a stranger. The following day we flew to New York and I enjoyed the rest of my trip, it was actually the perfect way to take my mind off it. The journey since then has been interesting, make sure you subscribe to my newsletter so you can hear about our adventures since then!

*Disclaimer! As you can see, I arranged most of mum's appointments and liaised with healthcare professionals regularly. This was before I was registered as a Lasting Power of Attorney (something I'll cover at a later date) so in order to speak on mum's behalf, I got a letter of consent signed. A simple letter that mum had signed allowing professionals to share mum's personal data with me (if anyone would like a blank copy just get in touch).

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