"Frontal temporal dementia journey"

My husband was diagnosed in September 2022 but previous to that he had been treated for depression ,deep down I knew it wasn't depression but found it difficult to make my voice heard I was suspicious as I'd just lost my mum to dementia that year ,then as we hadn't been out for weeks we decided to have a train journey to Birmingham have some lunch and come back home we had only been out a hour when he became ill needing hospital treatment. He couldn't stand, was very off balance.

He was taken to city hospital where he was given a head scan and medication and sent home after a few hours. On getting home, I thought I'd read the discharge letter and there in black and white it said moderate shrinkage to brain and if he hadn't had a dementia test then he should. We knew nothing of this till I read the letter so next day.

A Dr appt was made and so the journey begins. He was seen by the early intervention team at Kidderminster hospital, who were absolutely fantastic,  professional but also so caring.

Once he was diagnosed several plans were put in place, but out of the blue he developed episodes that I can only describe as epileptic fits, over the weeks he had many hospital stays including times believing he was back in 1995 at military hospital, which lasted over 24 hrs. He slept round the clock, lost all motivation, enthusiasm etc. He was also diagnosed with a brain aneurysm, only small thankfully.

Where we are now - he still has these episodes but are more shaking than fit type episodes, neurology believe it's all part of his dementia. After extensive tests he has days he's very vague, doesn't get up till lunch time, is reluctant to go out, doesn't enjoy it anymore, he's lost his driving licence.

We have struggled to find respite care due to him only being in his 50s, but as a veteran he can have respite through the British legion, which our local authority has approved as it's out of county.

I've been receiving support from the admiral nurses with face-to-face support. Quite honestly, I don't know what I would of done without Sue. She's listened to my worries she's been professional but also a friend. My visits have come to a end, but I'm reassured that she's just at the end of the phone should I need her. It is a very valuable service, and I'm extremely lucky to of had such support and wealth of knowledge .