14 - The Biggest Changes Since Mum's FTD Diagnosis

I'm at a point now where my blogs combined paint a pretty clear picture of how we've reached this point today. The last appointment we had with any professional was in March 2019 when the neurologist asked for a meeting with mum and all three kids. This was the last 'key moment' in mum's journey. It was only a short time after the diagnosis and despite it being a lengthy meeting where we discussed the diagnosis in detail, there are only 4 things which really stand out to me:

1. The neurologist advised us that in some cases (not all), FTD can be hereditary and given my grandad died of dementia, it was probably worth exploring with genetic specialists.

2. I recall asking what the next steps would be. His response was 'This is the last appointment you'll have. We know your mum is deteriorating and we don't need further MRIs or other tests to tell us that. Your job now is to learn how to live with this going forward'. He was very straight to the point and since that day, mum hasn't seen one doctor.

3. When everyone had left the room, I asked the neurologist how long mum had left to live. I knew it was a stupid question, I knew everyone was different and I knew it could vary anywhere from 2 to 20 years. Regardless, I still asked the question and hoped his 'straight to the point' approach would give an answer. He told me 'from the date of diagnosis, the mean number of years left is 5, but your mum's rate of progression does seem rather quick'. He also quizzed me and asked if I knew what the mathematical definition of 'mean' was. Thankfully I was correct, otherwise that would have been embarrassing.

4. As we were leaving the hospital, mum asked me 'do you think I've got dementia?'.

So there we have it, it's been 19 months since that appointment and the whole time has been spent figuring out how to deal with this alone. The term 'winging it' seems very appropriate to me. During these 19 months, mum's symptoms have changed drastically and I feel now is a good time to explain the current version of mum. Everything I tell you below is everything I know, none of it makes sense to me and I still don't know how to best deal with the symptoms.

Speech

Mum is now completely mute and cannot speak. This happened really quickly though there were stages:

• Only speaking when spoken to; then

• Just answering yes or no; then

• Only nodding; now

• Completely mute

Obviously, Detective Inspector Jess researched this and I've come to the conclusion that mum has Primary Progressive Aphasia (PPA), which is caused by neurodegenerative diseases such as FTD. Nevertheless, it would be nice to have a doctor confirm this. Just to explain how confusing and mind-blowing this is, last week I was taking a picture of mum and said 'say cheese!' and she bloody did. I haven't heard her voice in over a year, and the first word she said to me was 'cheese' (I suppose that's to be expected though - read blog #3). I don't know how this happened but I got excited and did a number of other exercises with her, unfortunately to no avail. This is by far the most upsetting symptom and I haven't met many others in a similar situation. If anyone has any tips, please reach out.

Communication

Obviously being unable to speak really hinders communication. We also can't rely on nods anymore, I could ask her if she wanted me to jump off a bridge and she would nod yes. I have tried writing exercises but she either:

• Copies what I've written

• Writes something completely unrelated, usually 'I am 64' or the word 'kitchen' (she is actually 64 and I'm interested to see if this changes on her birthday)

• Draws an ice cream cone (I've bought some, just in case she genuinely does want ice cream). She also draws gigantic pictures which cover a full page, so far I've got 32 pages of ice cream cones in my workbook

I've also tried using numerous gestures such as pointing to pictures/words but this also doesn't work. There isn't really any way at all to know what she wants, how she's feeling, if she's happy etc. It makes her so vulnerable and I wish I knew how to deal with it.

Mobility

This has deteriorated significantly over the last 12 months. Exercise has never been mum's thing anyway, but now her fitness levels are very low. Alongside this, she severely struggles to stand up/sit down and I assume this is still due to her spatial awareness. Getting her up from a chair can often take hours (I'm not exaggerating, she was sat on a dining chair for 7 hours last week before I managed to eventually move her using some inner Hulk strength I never knew I had).

This impacts a number of things. I can no longer take her places in the car as getting in and out is not an option. As a family, we take her on walks to increase her fitness but the walks don't last long as her breathing is so poor. If we go to a restaurant, she either refuses to sit or refuses to stand and it's actually distressing for her when we spend time trying to encourage it. This weekend I rented a wheelchair in the hope that I could wheel her onto a bus and go for some lunch. She didn't even entertain the idea of sitting down so the wheelchair has been returned. In fact, at one point, I demonstrated how to sit and she ended up wheeling me around... not quite what I had in mind!

To summarise, I suppose you could classify her as non-mobile. She needs assistance with even the most basic of movements and the only thing she is capable of is 'pottering' (and even that requires a cavalry to get her into a standing position).

Personal Care

Just nope (and chuck in double incontinence just to make it that little bit easier).

Mental Capacity

I find this difficult to explain and this is what confuses me most. Mum can definitely understand me as she does respond to instructions. For example:

• Lift up your foot so I can put on your shoe

• Pass me the tea towel

• Crack this egg

• Colour in this picture

• Take this tablet etc.

I should also add, she knows how to do tasks like these perfectly when prompted (apart from colouring in - she never stays in the lines). I might need to ask a few times but usually, she will do it within 10 seconds.

To my surprise, I also gave her my iPad and downloaded Candy Crush for her to play. Given this was puzzle based (and she can't do other puzzles such as word searches, jigsaws or dot-to-dots), I was astonished when she knew exactly what to do. It also taught me that she can read, I would often say phrases like 'press the button which says play' and she would. Is it because she had a slight obsession with this game 5 years ago? I don't know.

This is where it gets confusing because the very same logic isn't applied to other similar instructions. For example:

• I could have 2 DVD cases in my hands and ask her to point to which one she would like to watch. She would either point to both, not point to any or just point for no reason

• I know she can write and read but if I said 'write down your name' she wouldn't know how

• Although she can colour in, if I say 'colour the sky in blue' she wouldn't pick up a blue pencil. This is confusing because she knows the Candy Crush colours

• If I ask her for a cuddle/kiss again, she wouldn't know how

If any of my readers are neurologists, can you please explain this? I can't figure it out and it drives me insane. All I keep thinking is 'the more I understand this, the more I can give her a better quality of life' but right now it seems impossible.

To summarise, mum has zero capacity and the keyword in all of this is 'instruction'. Without any guidance, mum would sit in a dark room, looking at a blank wall for hours on end (I know this because it has happened on numerous occasions). It is sometimes worse and there have been times when mum has been a hazard to herself when left alone. I have often found her sitting on the stairs shaking, too afraid to move. Only last week I found her choking on her food and the carer even told me she once found mum tangled up with wires around her neck. The list continues but due to this, I now feel uncomfortable leaving her alone and I've moved my home office to her house so I can care for her 5 days a week. She requires a vast amount of guidance and even though she gets 3 visits a day from a home care provider, it just isn't enough.

Despite not 'officially' being told this, I assume mum is now living with advanced dementia in the later stages. Writing this blog has been harder than I thought and as the title suggests, it's a reality check for me. It's made me realise just how bad things have got and how quickly things have changed. Despite sharing my journey and building connections with others in a similar situation, I still feel alone. I still feel like mum's symptoms are different to others and everything I find online just doesn't apply. I'm always told to 'watch old movies' or 'sing songs she used to like' but none of it works. I baked with her last week which was probably the first time in a long time I feel I've done something she enjoys. I'm obviously happy that baking was a success, I just wish we could do more.

Anyway, I'm pleased I've got to a point where I'm talking about the present. At the moment, I'm going through genetic testing after indeed finding out this is a hereditary condition and there is a 50% chance I will also develop FTD. It gives me a chance to write about my own feelings and gain a bit of therapy in my next blog. I also get a lot of questions from others who would like to know how I got started with the testing... Keep your eyes peeled for Blog #15!