Hello, I have just joined and so thankful that this website and this forum exists... It's been a bit of a struggle lately and I am finding it hard to share all I feel with friends and family. My story is this... My mum started to become unwell in 2016. It started with small things, shifts in behaviour and then bigger things - my mum seemed to be becoming someone else, and things she once did and loved to do stopped. She didn't pay attention to hygiene any more, she didn't want to go out any more, her language became abusive and she became violent at times - towards my dad and all of us.
Over the next few years, this continued to get worse and my dad struggled to look after her when she was at home. My mum was sectioned a few times and ended up in various assessment centres, and in respite care. We were told 2017 it was likely she had Pick's Disease, or Frontotemporal Dementia. My mum was only 68. There would be times when my mum seemed to be 'better' but always underneath, there were these growing behaviour issues. It didn't help that my mum has acute anxiety, and so many Dr's she saw during that time were quite perplexed by her condition and many saw her as psychotic.
We skip ahead to last year, mum was finally placed back in a care home - after 2 years of being in a unit with people with advanced dementia - at this point, apart from the behaviour changes - my mum showed no signs of 'typical' dementia behaviour - memory was brilliant as ever for example. After a period of not settling in to the care home, my mum seemingly seemed to turn a corner. She was the best she had been in years. It was amazing. And as a family, we put aside the previous diagnosis of Pick's Disease (as we had also been told by a Dr my mum didn't have it).
In September last year, my mum had a 'seizure'. Initially the care home thought she's had a stroke, however she ws taken to Hospital and this was ruled out. All tests done. blood, MRI's, scans, came back clear. But for 24 hours, mum lost the ability to speak. The dr said, this would be connected to her Pick's Disease (which had been ruled out). He said the brain will often blow a fuse, and then the person would slowly return to how they were. Mum recovered. It was amazing, her speech returned, she was physically good, and no further issues. In fact, that Christmas 2023 we had the best one we'd had since 2015. Mum was doing really well, and we felt it was the best she had been in years.
New Years day, she had another seizure. Again, all tests clear. Mum recovered, like before. 1 month later, a bigger seizure. At this point, the hospital were saying it wasn't a seizure, as it didn't show the typical signs of one. Mum's 'episode' lasted an hour - she was convulsing etc and this was only brought under control by meds given at the hospital. Mum's recovered followed the same as before, mum would lose the ability to speak, would sleep a lot, be very agitated for a few days, before 'coming back'.
Before this becomes too long, my mum has had another couple of seizures - one big one and one not too bad. But, despite my mum being on an anti-seizure medication when she has been admitted to hospital, they have not continued this - saying she isn't having a seizure so they won't prescribe it. unfortunately the last seizure my mum had, has left her with permanent issues - she is now very confused, her words are jumbled up. Within 6 months she has gone from someone who was the best she's been in years to someone who clearly has dementia. It's been a lot to process. And I am scared, each seizure now, will take less away from her and since she is not being prescribed anti -seizure meds, it feels like we are just waiting for the next one. This is hard to accept, and I am feeling so sad all of the time.
Does anyone have an experience of FTD and seizures, and can offer any advice with regards medication? I have a phone appointment with mum's Dr next week, where I want to discuss the reasons why she can't have the medication. Any support would be appreciated. Thank you.