So this is a weird one... I'm about to tell a really sad story but for some reason I can't stop giggling. The memories I have of this next chapter are absolutely outrageous but also hilarious. You'll understand more after reading so I'm going to dive straight in!
Around a month after the diagnosis I decided it was time to stop moping and crack on. I was determined to make sure mum enjoyed her life, despite this awful condition. At this point (circa March 2019), mum had no motivation and never left the sofa. I, however, was absolutely adamant to find an activity which stimulated her brain so I put together a list of fun-filled adventures for us to try (I laugh at how optimistic I was back then). Before I put the list together, I had some criteria:
Something to do which didn't involve exercise. Mum could only walk 10 minutes (at a very, very slow pace) and even that was a push. This was simply due to mum being inactive, gaining weight and suffering with asthma.
Somewhere without steps. Mums anxiety was still pretty high and her spatial awareness was totally out of funk. I can only imagine that a small step in reality seemed like a mountain to mum and this really scared her (this is common with all forms of dementia).
I wasn't certain, but I decided it was best to avoid anywhere with animals. I've mentioned this in a previous blog but she also had massive anxiety around wildlife.
Finally, a place where people would understand. A symptom of FTD is socially inappropriate behaviour so I wanted us both to feel at ease. A prime example of this is when I took mum to a garden centre at Christmas. As we were walking in, there was another family in front of us. Mum walked over to one lady, tapped her on the shoulder and said 'EY, FAT LEGS!'. Below is some real life footage of my reaction:
Anyway, I started making my way through the list of chosen activities and I've summarised below what did and didn't work (you'll soon realise the 'didn't' category is most popular).
#1 Alzheimer's Society Activity Group
The Alzheimer's Society hold Activity Groups which take place for people with dementia (any form of dementia, not just Alzheimer's) and their carers. They give people the opportunity to take part in fun, structured activities. These can include bingo, quizzes and singing etc and are ran by expert facilitators with the relevant skills in dementia.
This was a strange one because mum and I hadn't discussed her diagnosis. Of course the doctor directly told her she had FTD and she received the diagnosis in writing, but I wasn't sure if she remembered. Because of this, I knew we needed to chat before I took her to an event which was fully branded 'dementia'. Long story short, it was clear she didn't remember so I explained everything. At the end of the conversation, she said 'okay, I hope I don't have dementia'. It felt like a waste of an explanation.
Quick side note - some people think this is good. I often get comments like 'it's good that she forgets, at least she won't feel sadness'. What also comes with forgetting she has dementia is also forgetting me (selfish, I know). I'm going to do a blog about this at a later date because it's something that has caused me immense turmoil.
So off we went to the Activity Group. I was anxious, neither of us had been to anything like this before and I was worried about:
Being there, then mum remembering she has dementia and breaking down (there were a lot of reminders, everyone was wearing a t-shirt with 'ALZHEIMER'S' plastered all over it)
No-one being her age, she was only 62 and I hoped there would be people there she could relate to
Mum hating it! If she had capacity I knew she would be saying 'Are you joking? You're taking me singing?'
I was right to be anxious, she took one step inside and said 'Oh my god, why is everyone so old and in wheelchairs? They look like they could die at any minute'. Despite being incredibly rude, she was right. This group was full of people 10-20 years older than mum and she didn't fit in. She wanted to leave immediately but I convinced her to stick it out so we drank tea, ate cake and had an indoor game of bowls. Although our first trip was a disaster and it was clear she hated it, I am considering taking her again. I actually think it's more appropriate now we're in the advanced stages. Anyway, Jess 0 - 1 Dementia.
#2 Pottery Painting
I had high hopes for this. Mum used to love painting weird miniature figures when I was younger so she was bound to love painting ceramic mugs whilst drinking tea. I even called the cafe in advance, explained the situation and booked a reservation for a less-busy time. I picked her up and drove to the cafe, but mum was in a strange mood that day. Every time we turned a corner or went over 20mph, she screamed (loudly). After a rocky start we eventually arrived, took our seats and our paint palette was ready and waiting. After roughly 24 seconds, mum decided she was bored and refused to paint anymore. Instead, she watched me, panicked that I was going to drop my ceramic mug and screamed (again, loudly). In the end we had to leave, but she continued to scream until she was back home on her sofa. Jess 0 - 2 Dementia.
#3 Cinema Pt. 1
This is it, I've cracked it. All mum does at the moment is watch TV so how could this go wrong? I eagerly bought 2 tickets to Dumbo and was excited for our cinema date. We bought popcorn, drinks and entered the screen. F*ck, why is it so dark? Sh*t! Where did these steps come from? It took us about 10 minutes to get to our seat which is where the real problems began. Mum's spatial awareness was really messing with her and she couldn't find the courage to sit down. She was getting upset and I didn't know what to do. It was all really stressful until a complete stranger noticed our struggles and came over to help. Both of us supporting her guided her down until she was comfortable. At last, the film began and I was feeling optimistic. I chose Dumbo because it was aimed at young kids, I thought it would be easy for mum to follow. About 4 minutes in, I heard the dreaded sound... Mum's screams (only this time in a cinema where the slightest whisper gets a 'shh!'.) It quickly dawned on me that mum was afraid of wildlife, of course a flying f**king elephant was going to freak her out. What was I thinking? We had to leave once again, but this time I was really upset. Jess 0 - 3 Dementia.
#4 Cinema Pt. 2
I know it seems ridiculous that I gave this another shot, but this time I did it differently. I was organised as hell and called in advance, got a back row seat so we didn't have to climb down steps and arrived whilst the lights were still on. I booked tickets to see Downton Abbey so there was no risk of wildlife and to my suprise, we were 20 minutes in and everything was running smoothly.
Disclaimer - the next part isn't nice and once again I'm publicising mum's indignity. I have to remind myself these are the parts people will relate to most and incontinence is common.
It wasn't long before a particular scent was evident. Concerned, I asked mum if she needed the toilet to which she nodded. I took her outside and showed her to the loo. I was incredibly naive at this point and trusted mum would be okay on her own. After a few minutes she came out of the cubicle in what I can only describe as a mess. The small accident turned into a big accident and well... I'm hoping you can guess the rest. Jess 0 - 4 Dementia.
#5 Pamper Day
By this point, I had well and truly given up. I took mum for a pamper not to try and stimulate her, it was purely to make her look more presentable. I booked her in for a colour, cut and blow dry and my lovely hairdresser did it when the salon was closed for extra comfort. Whilst there, I could see mum was enjoying herself so I also treat her to a manicure and fresh polish. It wasn't all plain sailing, she didn't like the nail technician touching her and I even lost her at one point (I eventually found her crawling up some incredibly steep stairs - where you at now spatial awareness?). Despite this, I found a little sparkle in mum that I hadn't seen in a long time. Her face was beaming and I quickly realised I needed to stop trying so hard. It was clear mum loved being in my company, but the biggest realisation was we were doing something mum loved even before FTD. Mum has always loved feeling pretty and although things were different, some things clearly never change. When we left, mum pointed to a pub so we finished the day with half a lager. It was honestly a day I'll never forget, for the first time I felt like mum was happy and I had done something right.
Jess 1 - 4 Dementia. For the record, I'm happy with 1/5.
I know I seem messed up by giggling at these stories, but in this sort of situation, you have to laugh. It has been and still is tough, but when I think back to
the absolute chaos, it is pretty funny. The two of us together must have looked like pure lunatics.
Here's a few pics of my favourite day: