My husband has his first ( known) seizure 4 days ago,this is just over a week of being discharged from hospital which lasted several minutes.
Since then I've noticed another decline cognitively and mobility.He seems to be dragging his legs a little now although he only really shuffles around the house but he's cognition and speech seem worse He still has a good appetite and is able to swallow his meds, I ve been given anticipatory meds pack.i suppose I'm wondering what his decline will look like from here?
Hi Slh
Nice to hear from you again but so sorry to read about all that's been going on.
Seizures are scary especially if they last any length of time. G had one big seizure way back at the start and that was terrifying to watch.
There are no hard and fast rules about how things could look going forward here. I can only reply based on our journey. G was handed off into the palliative care phase of the journey on 27 Feb 2023 and I was issued with the "just in case" drugs at that point. In Aug 2023 he started to have issues with focal seizures. He would zone out for anything between a few seconds to 20 minutes. The only indication that a focal seizure was imminent was that the hairs on his arm all stood on end and he had goosebumps on that arm. Weird I know. He was admitted to the local hospice for a few days to get these under control. He also developed a DVT at this time. His one skinny calf became swollen and hot then the whole leg became swollen.
His mobility was worse from Aug on and he had several falls. His eyesight was also failing and he was down to a narrow tunnel of vision in one eye and a blurry mess in the originally weaker eye. His short term memory was gone and his cognition and speech declined steadily. In October he began to have some difficulty eating although his appetite was still great. Throughout this period we balanced things out with steroids as best we could - the dose went up, the dose went down again from Aug to Oct until the Dr agreed that the steroids were having no beneficial effect. We stopped them.
The last week that he was at home G had a fall in our kitchen on the Tuesday. He had been trying to get some chocolate out of the fridge and I remember teasing him about trying to pinch it at 10pm at night. That fall was a wee stroke that was identified the following day. On the Saturday, he cycled on his static bike for 3 hrs then went out for the afternoon with his friend. Speech was pretty much gone by this point. He had a lovely day.
Overnight something dramatic happened - seizure/stroke/DVT blew- who knows what caused it. He was barely conscious on the Sunday morning and never regained consciousness before he passed away peacefully in the hospice the following Friday.
I apologise if that was distressing to read but I want to be open and honest with you. The only time the "just in case" drugs were touched was the day in August that he was admitted to the hospice for seizure control and on the Sunday before he was transferred to the hospice for the final stage of the journey. It had been hard to have them in the house for all of those months but we were eternally grateful that day that we had them because the community nurses used pretty much everything keeping him comfortable.
Speak to your medical team, make sure you have the support you need and take this one step at a time. Its beyond hard but you will get through this stage of the journey.
If there is anything I can do to help support you, please just ask.
Sending love and strength and hugs to you
Wee Me xxx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Thank you 
